Not so bright & Shiny

Part 1…

2012-02-06T23:50:00.001-08:00

Long before losing Conner, I would hear from God in the stillness of my heart. I’d be out on a walk, or in my car quiet, or even just before falling asleep, I’d get little words of comfort, or reminders whispered to me, and I always felt they were from God, but part of me always wondered if I had made it all up.

imagined it.

my relationship with Him wasn’t what it is today, it’s been a journey of learning how to trust, be silent, believe even when it doesn’t make any sense, and having faith that He truly has my best interests and desires in mind all the while. Life throws curve balls. that’s the price of living in a broken world. there’s lots thrown in our faces each day to believe in, people to trust, new products to have faith in, and it’s very easy to get trapped in a circle of un-decidedness, or even half hearted trusting.

see, when I would think I would hear God whisper to me, it wasn’t always what I wanted to hear, or even sometimes it wasn’t something believable to me, so I’d tell myself that I simply made that up. how could the God of the universe communicate to me…by truly, hearing voices in my head. it just sounded crazy.

but after losing Conner I made a very conscious effort to listen closer. to trust more. to have an even blinder faith. to never doubt that stirring in my soul that I knew could truly only come from one place.

I wasn’t hearing voices…I was experiencing God.

how amazing to finally make peace with that and understand it.

I remember that feeling of becoming a family of 5 minus a beautiful 1…and that held my heart tightly for quite sometime. After all, we knew Conner was part of our family…but many others never would, so it just made sense. visibly we’d be a family of 4 to many, but always a family of 5 to us. my heart broke as it accepted that fact.

I remember god speaking to me one day, he begun reminding me that numbers are just details, that what others who don’t know our circumstance, may count us as family of 4, but it really didn’t matter. he showed me how none of it even mattered eternally, and many families are living without a child or spouse, or parent in their families and in the end…the number doesn’t matter. the heart does. the heart of the family is all that matters.

I knew that Conner would never, nor could ever, be replaced in our lives, and each day I realized how getting caught in the trap of “details” really was causing us to live a life I don’t feel would respect Conner’s legacy, his love. just as I stopped letting Thursdays get to me, I had to let go of family number details. little, by very little I am able to release a “detail” from it’s grip against us. who cares if it’s a Thursday….the 24th day of each month carries no weight any longer, family of 5 minus 1 isn’t our family definition, and little by little we’re able to break away from the chains that hold us so tightly in grief.

and somewhere in all of this…we’re learning how to live again.

fully live again.

dream.

grow.

and break away from the “details” and realize that it doesn’t honor Conner to live a life of bondage to details. his life wasn’t details, it held significance that will never be forgotten, the impact will be felt forever in our hearts.

what a journey this past 5 months has been in growing, in listening, and in dreaming. and by listening to God in the stillness of each possible moment our family found a new hope, and a new joy far beyond what we could have ever imagined, or even desired after Conner’s death.

We’ve been waiting nearly 5 months to share with you all that has been going on in our lives beyond the grief…but there’s just too much to share all at once…and I owe it to God to give him all the glory, one story at a time…so as much as I’m DYEING to tell it all now…I will leave you with just a few pictures…to get the REAL story of learning to listen to God started…I will post soon on how this new joy unfolded, the miracles that have already taken place with it and how Conner’s hand is in it all!

WE’RE EXPECTING!!!!!

Can’t wait to start sharing the stories from the beginning, it’s been so hard to remain quiet, but all good things must come in their perfect time, and God has been in the drivers seat from day one…and good thing too because it’s been a very bumpy ride thus far…

One story I can’t wait to share though…

How we KNEW that Pink is our new blue…God is So good…

The ugly isn’t who I am but it’s real

2012-01-31T22:08:00.001-08:00

I feel like it should all be out in the open by now. it’s been a year and a half….(how did THAT happen?) I’m growing more and more tired of all the interruptions, surprises and constant emotional drain.

I’m ready for that magic switch to be flipped.

forever…

I don’t even truly know what that would mean or look like…but I just feel like by now in my journey it should be some what familiar…somewhat predictable.

why isn’t it predictable?

today I’m just over it. all of it.

I started my taxes…I had to officially delete Conner from our families financial reports…he is no longer a family member of ours in the eyes of the government. seriously, last year was hard to file taxes putting that he died on it. but this year, I had to physically check the box that he died and I had to delete him.

I had to.

that lovely computer program didn’t do it for me.

and that was the first thing I had to do. so talk about having a fun 4 hours working on taxes after that introduction. and I’m not even finished yet. much more to do.

stupid program keeps saying things like “congrats you get a $2000 tax credit for your two children….” HELLO I have three…

but I guess one doesn’t count anymore…

but to me…he counts.

he matters.

do you know that I honestly don’t remember what I felt like to be his mother. I don’t remember how it felt to hug him or kiss him, or comfort him, or protect him. I often find myself looking at pictures of him or our family and I just don’t remember him being here. it’s like it’s a dream. like it never really happened.

am I the only one who feels this way?

I feel like he’s been gone longer than he was here, and that is so very far from the truth, I know it…but I don’t feel it.

once again my heart and head won’t connect.

they don’t agree.

so I get confused, I feel like I’m a shell of who I used to be. it’s strange.

amidst cleaning out my tax drawer (which this year I WILL be better at organizing so it’s easier!) I found a few cd’s that had pictures of his last bday party and his last day on earth on them.

those were so difficult to look at.

his birthday, as I looked at each picture I was overwhelmed with the exact emotions I felt that day. I smelled the smells, I remembered the voices, the laughter, the bittersweetness of it all. I remember it all down to the smallest detail. our grass was mowed, I remember there being a smell of fresh cut grass mixed with the smell of the new cedar chips we had put down under the new play equipment. I remember setting up all the hawaiian décor. I remember seeing him struggle so much to breathe, but he had the most beautiful smile on his face you could imagine…his heart was full of love and his eyes were full of wonder.

it was perfect…

when I see pictures, strange as it may sound but they are my proof that I’m not just imagining him. maybe others who have lost a child understand that…maybe not. but after awhile nobody says his name anymore. no one asks about him any longer. nobody even realizes the burden of pain you carry with you each and everyday. and after awhile…as his mom, I get used to people forgetting.

and seeing picture is proof for me. it helps me to just remember those moments that get lost in the business of living…raising two other beautiful boys, being a wife, and tending to normal everyday needs.

he was here.

we had a connection that can’t be explained. it went above and beyond a normal parent/child relationship. I think that’s true for any child with chronic disease. I didn’t just care for his everyday needs…it went deeper than that. I never gave up…not even the day he died…I remember knowing it was near, but still not believing it was that day…I was still fighting, I wasn’t anywhere near finished.

but he was…bless his tired heart…he was finished. and he waited…the craziness of that day, the chaos of all the people stopping in and out, pastors praying, friends of ours and even friends of his coming to say goodbye…it flew by…yet time stood still. that was the longest day of my life. and he held on…until we let him go.

I wish so much that more bereaved parents would speak up about what its' like.

I feel so alone most times…somedays I feel absolutely crazy…like there’s absolutely NO WAY any other parent still feels such raw pain. shouldn’t it be a bit easier now that it’s 2012????

it’s like an underground society where it’s all kept hush hush. in the beginning stages of grief people express themselves openly, they are raw and vulnerable…but once the world moves on…why do we get quiet?

I feel like if I don’t say Conner’s name, nobody will. if I never bring him up, nobody else will. and if nobody will talk about him…then it’s just another reminder that not only is he gone…but that he’s not coming back…EVER…and nobody truly, really cares like we do. (I don’t expect anyone else to…) I guess what I’m saying is, it contributes to that crazy feeling that he was just a dream.

and living without him has been just a nightmare…

many days I want to write. I will open up my journaling program…maybe jot a sentence or two…but I stop. like tonight. today was so overly emotional, with the tax issues and all, really it was way more than that…but that was my breaking point.

I opened up my program and I just stared.

I don’t write for sympathy. nor empathy. especially not for pity.

I don’t write for people to read my words, or feel my feelings, or hear my heart in it’s rawest form…

I don’t write to tell a story, I don’t write to waste time.

I write for sanity.

for me.

I have to get it out sometimes.

writing is soothing to my soul…it helps me to cry when I’m long overdue…it helps me to put life back in perspective again…to regain balance.

I write for me.

so there are many days where I just need to spill my heart out onto the keys…but I fear what many may think. here’s why…because honestly I don’t care what people think of me…but what I do care about is others reading my blog on a particularly bad day I may be having…and a person believing that I’m giving up, or who may be in a similar situation…and maybe it pushes them over the edge…does that make sense?

not every day is bad. not everyday is bright and shiny…I need to write on THOSE days…not the happy days. those days are the easiest ones to get thru…with or without child loss, you can agree…when life is going well, what is there to vent about??? but a build up of enough bad days, or string of events…or days of being so emotional and exhausted from crying your eyes out at night, or tossing and turning, or dreaming of him…or helping your 6 year old understand why his life is so different now than it was just a year and a half ago…enough of those days…I have to get it out.

and I’ll admit…because I know…it’s not pretty.

I’ve never once felt so sad or so desperate or so broken where I felt like giving up. not even one moment. but when I have bad days, some ugly stuff that’s been building up comes out, and I never want people to see that and believe that lie. writing for myself is still an extremely large responsibility. because I do know how many people read this blog, whether sporatically, or even for the first time. and I take that seriously. if one doesn’t know me, authentically KNOW me…they may see only the darkness, when there really is so much LIGHT in my life…

but those aren’t the days I need to write…

so here’s some of those ugly truths…

I’m so tired of crying

I’m so tired of feeling incomplete, inadequate

I wish that my heart could regenerate that chunk that’s forever gone…

I’m trying so very hard to stay involved in the CF fight…but each day it’s getting more difficult to…I pray Conner’s not upset…

I hate not hearing his name anymore…

yet somedays I hate hearing it because it hurts so much that he’s not here

I’m sick of some of the lessons on living that I’ve been thrown into learning…I know, I know…I wouldn’t have signed up to find out any other way, but I’m still so tired of all the change

I hate this season…seeing everyone gear up for their CF walk…and all I can recall is the last one that meant ANYTHING…

and just wishing to remember that passion again…

I’m tired of wondering where a few people I love greatly have disappeared to…but knowing that my heart doesn’t have the strength to find out. I just can’t take anymore loss…how sad is that?!

I hate having hard days with my husband because he and I are both missing Conner and handle it so different…yet I hate to have those days full of smiles and laughter because I feel Conner should be with us enjoying it.

I still hate how people say what they feel are helpful comments…but really…it hurts. because truth is…

I’m human, I’m selfish. that’s how god created us…imperfect.

I’m a mom without her son. I don’ t care if he is celebrating life in heaven…I’m human and I’d rather have him HERE…

I don’t want him in pain anymore…but honestly…I don’t want him breathing free because that means without me… (yes for now…but now is soooo long!)

I’m trying really hard to be happy about the new CF drug that was fda approved today. and I know that my heart is so happy about it. but on a surface level…what it really does to me is remind me of those many days I spent sitting on my stairs (yes I remember it down to the finest detail) calling a cf dr in denver, calling the CF foundation for other drs’ information…anyone who could possibly have access to those drugs back when he was alive….and I remember being told no, over and over again. and now…now it’s released.

uuuhhhggg…see how ugly I feel sometimes? it’s scary to feel these feelings….to write them out is even scarier. sometimes I just start typing and when I read what I’ve written I’m shocked at how I really feel…my mind protects myself most days…coping mechanism…because these feelings, while obviously they hold some truth in my life or I wouldn’t feel them…they are not who I AM…they don’t tell of my love and my joy and my hopes and my trust in God. feelings are deceptive. but my heart, my soul, is simply trying to make sense of all that has occurred.

and it’s trying to find a way thru it all…

at the deepest level of it all I’m really just a scared, broken hearted woman…who held her sweet sons hands as he exhaled the last breath from his lungs. who endured more pain and more unbelievable situations after that day…and I’m just looking for peace.

I find it when I expel the ugliness from my heart when it’s necessary…because when I let the ugliness go…it gives my heart more room to grow in LOVE and in truth. and when I hold it in for too long then as you probably can tell it gets kinda ugly

I pray my next rant is about something happy…because most days I’m happy, joyful…and content…those days I enjoy from sun up to sundown so there’s no time to write anything…but I will make a conscious effort to do so and soon…while I write to get life off my chest, I do also need to show other bereaved parents that it’s not all dark and twisted…that yes there are many bad days…and that will never go away…but with some hope and trust (and some amazing friends!) even the darkest day a little light can shine on thru…

because afterall…once we’ve known a love so pure and delicate…it never goes away, even in death…we carry it forever in our hearts…

mommy misses you bubby…we all do…hold us close this next little while, get us thru this valley…

A new Year…a new HOPE…

2011-12-30T23:00:00.001-08:00

Well we’ve made it!

Thru our first calendar year without him here with us in person. I feel both a sense of accomplishment and a sense of overwhelming sadness. Weird combination. Last year we only had to make it barely 6 months without him to get that over with…but this year…a full 12 months…we did it. I can safely say that 2010 was the worst year of my life, from losing Conner, losing people I loved, losing comfort in this world, yet gaining a realistic expectation of what this world is all about, I think it’s safe to say we just kind of held on and survived 2010. I was so sad ringing in 2011, because my heart knew it would be our first entire year without him, that reality was settling in even more than I could imagine…that we’d be faced with some of the hardest challenges of our lives, and I was right.

2011, while not the worst year of my life (lets face it nothing compares to 2010), was the most difficult so far. in 2010 all I had to do was show up, I didn’t even have to dress nice…or smile…or worry about what anyone was thinking of me or my family, or judging our expressions of pain…that years' motto was “fake it till we make it!”

but this year…

well, while the pain didn’t change…I found it even more difficult because the grief intensifies overtime…I thought I knew what pain was when I watched him being carried from my home covered in a blanket…dead, never to return again…and that was painful…excruciating to say the least, just the thought of that brings me to tears (I don’t often think of that day/night)…but you reach a certain point in the journey where the world just thinks your ok…that all is well, and if I have a down day, I had better learn to keep it at bay, or face people’s criticism of how I should be “thankful” or “moving on”…and that hurts equally as bad. see it’s not like a stubbed toe that causes immediate reactionary pain..but then lessens over time…he’s a child. was a child. living. breathing. I held him. he called me momma. he was my first child. and many who never met him just couldn’t believe how gentle of a spirit he was. rarely angry, never complained…loved to be held and to hug, and always told us how much we meant to him. his smile melted my soul. I wasn’t done with him yet. I wasn’t ready for it to be over. to be forced to let it happen. I didn’t want to tell him to go that damn night, it was a choice…I didn’t want him to feel bad for not being able to stay any longer. I didn’t want him to die there, I didn’t want it to happen that way. but as all moms know…it’s not about us. it’s always about THEM. each damn day I wake up knowing he’s gone. and there’s not a damn thing I can do about it. I have to be ok with it. so I find a way to get on with the day. But I can say that this year he wasn’t always the first thing I thought of each morning with pain…so there has been progress. I no longer have any clue when it’s a Thursday as I once did. I don’t know how many weeks, or days he’s been gone. progress for sure. my life, my world revolved around all that crap last year. it held significance. the day of every 24th I barely take notice…

but…

so much has stayed the same in my heart. I think of him now with great joy…and great hope…not always just sorrow. I’m a better person for knowing him, and I am so extremely blessed to have been chosen to be his mother…what a honor. I’ve found a bit of peace in this circumstance…because I know that life is for living…and I’m well aware of how it can be gone in an instant. the world owes me nothing.

I think about how our family dynamic has changed this past year. hunter is such an amazing biggest brother…he stepped into the role with pride, and it melts my heart to hear him still speak of Conner each day, tell me different things they used to do together, things he missed…how much he loves his big brother in heaven, he points out Conner’s star at night…having him be so vocal about his brother, helps me to feel like he isn’t just a memory. many people are done talking about him, or speaking his name…but in our home…his name is a constant…and it’s always said with a smile or a laugh. it’s an incredible blessing…

all of these are just difficult changes to deal with. it’s a new normal that we have to face…and it is constantly changing. Conner was 7…and this coming year Hunter will be 7…how will that feel? He’s going to outgrow Conner’s biggest clothes…how will that feel to have to buy bigger sizes that I should’ve already gotten years ago for Conner? there’s still so many things evolving and constantly changing…so there’s just no way that everyday can be so bright and happy. I started this blog for brutal honesty. so I won’t pretend or candy-coat a thing.

I cry still, very often…but in the privacy of my alone time…because now the pain when it strikes it’s much deeper than before…I “get it” more now. pictures and memories are all I have now. I understand that. I don’t remember the last time he walked thru my door…and I no longer expect that he will. crying in the beginning is so raw…it’s just screams, wails…intense, overwhelming pain. it’s part shock…part unbelief…part denial…but now…crying is deep sorrow. it’s choking down your throat, instant ugly cry…that vibrates down your entire being. my fingers to my toes tingle, I get hot, my head pounds in pain…and my heartbeat increases dramatically.

it’s a more healing cry than before…but hurts…hurts like hell.

I’ve learned so many lessons this year…the majority of it was spent in character building mode. learning who I am now. who we, as a family, are now. learning how to honor Conner and find some healing peace. I just want peace in my soul.

so much is thrown at us when we least expect it…from mail arriving in his name, fighting the IRS about him on our taxes…even to the most recent horror…someone vandalizing his “spot” at the cemetery…and it hurts. all of it. but somehow in it, we find HOPE for tomorrow…and try to keep our focus on the fact that today is so temporary…and that many of life’s struggles are really just sidetracks, or details…not of lasting importance…

I believe that 2012 is going to be a better year for us. It’ll still be hard, and that nagging pain won’t ever cease…but I have HOPE that we’ll find a way to handle it. gracefully. lovingly. respectfully. God has carried us for the past year and a half…not one day have I taken one step on my own two feet. there’s simply no way I’d be where I’m at today without His strong arms.

I just pray for all the newly bereaved parents I’ve met over this past year…I pray that you find some HOPE that your worst year is nearing it’s end, and that next year, will still be as painful…but also a bit more joyous.

So do I miss him? undoubtedly!

will I ever get over it? never ever!

do I cry? very often.

but do I smile? more than I cry!

do I dwell in the past? not as much as I live in the moment.

and if I could sum up my expectation of 2012…I’d say it’s going to be the year of our greatest joy, love and HOPE…

My song for this year…

Love Love Love my friends and happy new year!

A mission of MAJOR awareness!

2011-12-22T20:24:00.001-08:00

My Good friend, Josh Mogren has been working on a super secret (but not so secret) Moganko CF awareness video for quite some time. Moganko became a part of our family LONG before the Mogren’s ever did.

See…our sweet Conner you all know suffered from Cystic Fibrosis, but Moganko video’s brought joy, smiles and most importantly long BELLY laughs into our home in some of our darkest hours. Connerman loved his grover, I think that’s why he latched onto Moganko so quickly. There was never a place we went without Grover, he helped make the treatments of CF less painful and a whole lot less scary. If Conner had a surgery, Grover went and had the surgery as well, if Conner was away from home, you better believe Grover was with him, and even in death, Grover is taking care of him in heaven…here are just a few of his pictures with his Grover

Then when Josh appeared in our lives, from the very first Moganko video we watched, we were all drawn to him. Conner sent him messages and even tried to make his Grover come alive like Moganko for Josh’s birthday in 2010…

It truly was an amazing connection that Josh and our Conner had built in a very short amount of time. We’d skype each other while stuck in the hospital, or even from home, since we don’t live anywhere near one another. I remember the evening we lost Conner, I didn’t want Josh to learn about it on facebook…so I did everything I could to get ahold of him so he’d hear it from me, not sure if that happened because we all know how news travels so quickly…but out of Conner’s death our families’ have remained very connected…and shortly after Conner passed Josh and his wife Carly came to Washington with Moganko in tow and we were blessed to meet them!

So today marked the release of Josh’s CF awareness project that is going to bless the CF community, and I just know it’s going to spread around the country, world even, and bring light to the LEADING KILLER OF ALL GENETIC DISEASES…because a cure is needed, there are thousands being born with CF and dyeing from CF every single year, one dyeing each and everyday and many of them are children and young adults. A median age of early 30’s, while better than when Conner was first diagnosed, is still far too young. These individuals fight their entire lives to breathe, gain weight to stay healthy, live with PICC and ports, Iv’s, inhaled medications, chest physiotherapies and countless enzymes. They spend weeks even months in emergency rooms, hospital rooms and ICU’s, their parents watch as each breath is a struggle and beg and plead for a miracle cure.

BECAUSE THERE IS NO CURE…

Advancements are being made each day with the help of wonderful donations to the cf foundation, and families are getting much needed financial assistance to help cover tremendous expenses from organizations founded by people living with CF….but every breath should be easy, while on earth…because I hate the term “breathe easy in heaven…” everyone has the RIGHT to breathe free while here as well.

Without further ado…I want to spread Josh’s love to you all….and I encourage you to share it with all you know…

we WILL make CF stand for CURE FOUND…and this is a HUGE way to impact thousands…

Blessings and LOVE to you all, especially to you JOSH MOGREN…for spreading hope, courage and LOVE to the thousands living and dyeing from CF…paste the link below into your browser...and ENJOY...then SHARE!!!!!

LOVE LOVE LOVE

http://www.mogankoforcf.org/

Like a flood I couldn’t stop…

2011-12-17T23:34:00.001-08:00

Today marked the first time I’ve stepped foot in one of those places in…well probably around 19 months…it all came right back. the smells, the beeping, the hussle and bussle, everything. it caused me to remember so much of a life that I was forced to leave behind. medication routines, hell even names of those 17 medications and their dosages. in my past life that info rattled out of my mouth without thinking…but I’m so far removed from that world..that old me that it shocked me tonight just how much I’d forgotten…well until it came back to me. the beeping…oh lord the beeping. the waiting. the wondering. the feeling that time stands still in those walls. it’s truly a world all it’s own. and one that used to be mine…but hasn’t been for so long.

I remembered what it was like to be in that fight. to advocate for him. to wait on dr’s, nurses and tests. I loved that life. it’s all I ever knew for 8 years. it made me feel like I could do anything…that my opinion…my hardwork would count for something…when in the end, it would never be enough. I remember sheltering him from pain…protecting him from unnecessary shots, tests and procedures. I remembered the absolute solid LOVE he felt for me and showed me in a single glance. he had my heart. and he trusted me with his.

we were an amazing team.

mother and child.

a love that nothing in this world could ever compare to. a bond that even in death can’t be broken.

yet because of the depth of trust and love, because we spent each moment together in sickness fighting or in health, loving and laughing, it makes the pain of his absense so unbarable so often. I felt needed in a way that I probably never will in my life again. my husband and two living children need me, and others need and count on me as well…but a parent of a terminally ill child understands that is a need of it’s own variety. that is an intense, special, protected and once in a lifetime bond that is too big for words. I needed to fight for him to feel like I had some control over his decline (though I know I didn’t), doing everything for him was my life. my joy. my purpose.

the ER.

I wish I didn’t have to visit you tonight…but I had to. there was no way of getting around it, and honestly didn’t think twice about it til I got back to a room…

then his life…our life that is no longer ours…all came rushing back to me…

oh how I miss him…

Handle with care…

2011-12-09T17:19:00.001-08:00

Much of this journey called grief I still don’t fully understand. I try…and I know little by little, in time…I will understand much that I don’t know today. there are a few things I do know for certain…and I feel it appropriate to share them…there have been so many families torn apart this past month in particular, by CF or other causes…and I’ve seen so many people unintentionally cause pain to those deep in grief simply by well meaning comments that are actually, not at all helpful to the families. I’m not trying to make anyone feel bad or guilty..but being on this side of life I know firsthand how much a comment while said with a loving heart and caring spirit, can stick with a person and hurt them very deeply. maybe the person will never express the pain it caused…but it will always kind of be there…there are many comments and situations that still now I struggle with from time to time. forgiveness and love are there too…but something comes up that may trigger it…and today I just needed to pray for a peaceful heart. I felt angry all over again. so please just know this is from love…

please don’t ever say to a grieving friend:

“it wasn’t meant to be”

“God needed another angel”

“now he can breathe free”

“no more pain”

“everything happens for a reason”

“god has a plan”

or comments of that sort. while we fully know the pure intentions meant behind the words…as a parent whose lost a child…when someone has said something like that to me it enrages me. trust me that I know god has a plan…and I would rather Conner be free from pain…and I do believe he’s in heaven, whether or not he’s an angel is unknown…but here’s what I know. I’d still rather have him here with me. and any parent whose lost a child would say the same thing. when I see these or comments like these posted to people…I just cringe. these comments are in no way helpful.

an alternative…a simple “I’m so sorry for your pain…or your loss” is a phrase that is genuine and touches deeply in our hearts. because nobody can change the outcome of the situation, and we don’t expect people to…we just want to be able to express our pain freely and have people love us in the pain without trying to justify it somehow or candy coat it. when someone says I’m sorry…it’s the best two words that I could ever imagine hearing.

please don’t ever do to a grieving person:

when they express pain…don’t change it to your own pain comparison. it’s not helpful, and it’s actually quite hurtful. what it says to a parent whose hurting is that our pain isn’t unique..and isn’t important on it’s own. that it doesn’t matter. I absolutely believe and know that each loss causes a great deal of people so much anguish and pain…but the pain the immidiate family feels is unlike any other person will feel…so turning their comments of pain into your own sadness or your own grief really sends the message that our pain isn’t justified. and that my friends hurts the most.

instead…parent to parent of childloss we know the pain the other family is feeling so comments like that almost never happen…but even distant family or friends who feel the loss as well should just simply send prayers, offer love or to help in some way…and never compare the pain that is so different…its hard to explain but it is just painful.

please…also…

don’t go overboard talking about the loss…as well as ignore it and never talk about it…it’s a very delicate balance…but follow the cues of the person in pain. somedays they will want to talk about them a lot…or the pain all day…and somedays just don’t even want to mention the name because the pain is so intense…or they simply want a day to not think about it.

please don’t forget the person/family after the dust settles:

some of the people that huddled so close to us before, during and immidately after Conners passing are no where to be found anymore. not so much as a text to say hello…or anything. and that’s very hard. so while it’s so important to be there when everything is new…and the pain is outwardly raw…I think it’s even more important to be there for the long haul. doesn’t mean you have to call everyday or anything like that. each family needs their own balance, definitely. but to go from being so close to someone…maybe even sharing in the death of that person which is a moment that forever changed us…and then to not hear from them much later…just hurts like hell.

November I can’t even count how many we lost to CF. young and old, even a brand new baby. and right now a dear family is batteling the loss of a precious soul who reached out to us in Conners end days…I ask that you pray for Spencer Riddle and his wife, Nikki. Please send love and prayers to this beautiful soul as he’s spending his last days with his new wife…in a hospital bed barely holding on. my heart breaks for you Nikki. and one thing for certain…is you can count on me to be there to check in on you for years to come…because all we have in this world is love, friendships and time. and there is no better way to spend time then loving others….

never be afraid to reach out to someone grieving…many days they are completely ignored…and what a difference even just a hello or a genuine smile can truly make…

blessings to you all…

and as always…LOVE LOVE LOVE because nothing else matters…

reality check

2011-11-27T16:18:00.001-08:00

Another Holiday Season is upon us now. in full swing. thanksgiving with Brad’s family, Black Friday shopping and yes even a Christmas tree. Where did the year go? I can’t believe we’re inching closer to completing our first calandar year without Conner with us. He sometimes seems as if just a distant memory. I’m sure that sounds strange…see of course I remember him and have years of amazing memories to hold close…but the specifics…how he would be now as an 8.5 year old…it’s all surreal. I am amazed at all the little things Hunter can recall…about video games they played together and there are many times that I just can’t remember what he looked like cuddled on his favorite end of the couch. how does that happen? it makes me feel like it’s all just a bad nightmare. it’s hard to pick hunter up from school and his school best friend has an older brother that was conner’s bestfriend at that same age. to see how old he is now, all big in the 3rd grade and just wondering how conner would look like, would he still be my sweet boy or start to test the waters and get a little boy attitude….? I’ll never know. I think what may be hardest is this year we know he’s gone…last holiday season we were still a bit in shock and wishing that he’d be there someway, somehow…but now a year later we know he won’t. we’re not really hoping for it anymore. does that make sense?

reality is cruel sometimes.

it’s hard to really write these truths out…I feel a bit like a broken record…like maybe I’m not really entitled to hurt openly anymore…it’s been too long. maybe I’ll be seen as weak, depressed, out of hope…broken…but what I really, truly am…is a mom whose hurting. who will always hurt. a beautiful boy that meant so much to us is no longer with us but in memory and that’s something that time can never take away. I guess I hope that in some way my being honest is providing reassurance or hope to another family struggling with grief somewhere. I know my story is not at all unique. there are many moms and dads in this club…and I wonder if they too feel they have to now suffer silently since maybe it’s been awhile…but I feel that if I lie and deny the truth…and the pain that I’m really saying that he didn’t matter…that his death wasn’t the single most defining moment of my lifetime. and I’m not one to lie. nor would I ever limit his lifes meaning to just a year of mourning. how could i?

Sweet Hunter’s been having nightmares of Conner…waking up screaming in the night for me or Brad. it’s heartbreaking when we have no good or satisfying answers for him. only hugs and kisses and prayers to comfort him. seems so inadequate in the grand scheme of his pain.

there are less and less nights where brad or I cry ourselves to sleep…but the pain is still there like it was the night he left. I don’t believe that time truly heals…I think time brings a bit more reality of the situation…and you learn ways to cope. more and more I find my brain taking me back to that last day with him. I recall sights, sounds, people, laughter, tears, prayers, oxygen buzzing, phone conversations, visitors, flowers, I remember the look on his face…I remember the panic in his eyes…I remember every little detail…and it paralyzes me. then I recall the aftermath, the funeral, the generosity of strangers, burying him, all of it. before now my brain hasn’t really let me think of the details…the details are painful.

I remember the feeling of deep sadness grieving the loss of his CF docs in our lives as well. I had to let every detail of his life go. I had to mourn it all one by one. his future, his wishes, his presence, his teams of drs, his friends…and I thought that after spending so much time with the CF team fighting, strategizing, and talking together that I’d never be able to move on. to find a new identity really. the old me had to die too. what a difficult process. I held on so tightly. but I had to let it go. and now I know for sure that I have let it go. I still think of the CF team with great affection and love…but I don’t “need” them like I thought I did…like the old me did. I’ve found a new me…one with different meaning, different goals and a whole new perspective on life. I still participate in the CF walk each year and help sell CF wreaths for the holidays…but other than that I’ve taken a HUGE step back from CF. I had to decide that it could no longer be a huge priority in my new life. CF stole so much from us already, and I couldn’t continue to let it take time away from my precious living family. and I’m very much ok with that now. the old me would never even dream of doing that! but Bradyn and Hunter deserve all of me now like they never had before…and I love having some stability in our lives…not having to worry about our next trip to the ER or the hospital…

A new life full of free time that we never had before. it’s bittersweet for sure. I’d rather have Conner here with us…growing and loving with us here in our home…oh to have him within arms distance…I can’t imagine how wonderful that would feel to hug him…but now I know that for sure I won’t be able to do that on this earth. he’s not coming back. and I must make the most of the time I have here to love my family the way they deserve and the way that makes me feel whole again. if only for a moment…

Love Love Love

13.1

2011-10-17T21:00:00.001-07:00

Sunday was the big day.

13.1 miles in the Girlfriends Half Marathon.

It was my goal for this year after losing Conner. Running has been my sanity and outlet for the better part since his passing…finding different routes, offroad and in the very early hours of the morning. I love to do the walks for Cystic Fibrosis each May, but if I’m honest (which I should be here) I will admit that I’m needing a big deep breath away from CF functions. I love to stay involved in whats new with my CF families that we adore, but as far as the advances in research, the big events…I need to step away. and being that our CF walk is only 3 miles I figured I’d need a bigger goal for this year. so in january I decided to do a half marathon this year.

in the beginning I trained hard. erin and I ran 3-4 times a week, averaging 20 miles a week and felt great. this summer however…we both had vacations, trainings and travel, so running took a backseat! then school started and inevitably I came down with the junk my kiddos brought home from school, so running was pushed even farther aside….

suddenly I woke up and I had ONE week til the race…that’s right…ONE WEEK! and I hadn’t run in probably close to 6 weeks! I was freaked out! With the race approaching on Sunday, Erin and I ran 5 miles on Monday, I did Zumba on Tuesday then Sarah and I ran a quick 2 miles on Thursday then rested til sunday.

so sunday morning, Sarah her sister Amy, and I sat at the start line…I could not believe I was about to actually run a half marathon…with NO TRAINING! the 5 miles I ran earlier in the week was ok, but not great…and I felt like I was coming down with another cold saturday night…pretty much the odds were not in my favor.

but the sign that was hanging on the Start line was perfect…and set the tone for the entire run!

(the woman who starts the race, is not the same woman who finishes the race)

I will spare the details…but I finished! my legs were DONE, but they (and conner) carried me thru to the finish line. And the best part was coming around the end corner to the finish line and seeing my boys right there waiting for me!

I’m glad I completed my goal. I’m glad I’m still able to walk! But mostly I’m glad that I had some amazing women by my side who gave me the best support without even knowing it,

and my boys being there to raise my spirits when I needed it most…

so HA! take that CF…

Some ran for cancer, some for bragging rights, for Sarah and Amy it was for Blake…but for me, it wasn’t just to show CF whose boss…it was for my Connerman…I’m proud to say that I finished for you, dear Conner. Mommy misses you terribly…I hope you know just how much I love you!

love love love

The valley…

2011-10-10T20:33:00.001-07:00

There are so many days where I still can’t believe all that has happened. its like a flash back into the old me, the me I used to be. you know the one who took days for granted and believed that time would stand still for our sweet son. I believed in a cure for him. I believed Denver would take him, or that I could convince that dang drug company to get him on a drug trial that could save his life. the days where it was still normal to take a minimum 50 minutes each morning of therapies and IV’s and medications just to get out the door. The days where it was literally impossible to get out of bed and just head out to tackle the day…Conner wouldn’t be able to breathe in that old life. and now there are days that I can’t breathe peace into our day. my day. I think I’m reminded of the pain daily because there are so many suffering right now. so many losses, not just in the CF community, but in life in general it seems. So many sick struggling to breathe, sisters watching their sisters pass away…sons watching their dads dyeing and on and on. it’s heartbreaking.

the change in weather has affected me as well. the constant gloom and rain remind me of last fall. my first fall without him. the first time heading into the holidays full of sorrow instead of anticipation. I can hardly believe that the holiday’s are upon us again. I’m not sure how we’ll spend them this year…we are thankful for all that God has blessed our family with and the love He continues to show our family…so thanksgiving may not be so bad this year…I am so thankful for being chosen to be Conner’s mother. Yet in the same breath I’m hurt how fast it flew by. moments don’t last forever. memories fade after time. I don’t remember some of the most important things about him. how it sounded to hear him breathe…that horrible CF cough that was a staple in our home I’ve grown to miss because it was part of him, I forgot how he smelled, how soft his hands were, just how dark his birthmark on his leg was, or even which leg it was on. I forgot the feel of his soft tummy he used to let me snuggle up to, I’ve forgotten the smell of his breath and the warmth of his embrace. I forgot just how he sounded when he told me he loved me. it’s only been 16 months and there is so much of him gone…so far away it seems.

what hurts is the ups and downs of grief. it’s constantly changing and gives NO warning. one moment life is going good…I smile more, I love more and reach out more…then the next moment it’s gone and replaced with sadness. I’ve gotten used to living with the pain each day…his memory is still the most common thing on my brain, but for the most part it doesn’t make me weepy. well I’m in one of those weepy lulls. so much has changed in our home, in our lives and he’s not here to be a part of it. I’m not bitter nor am I angry…I just get sad. I’ve learned to go with the ebb and flow of grief. and just let it come. but sometimes it makes me feel inadequate. because just when I feel I’ve taken a tiny step forward I’m shoved back down and forced to feel the intense pain all over again. I wish it was predictable. but there are parts of my life where I’ve taken a leadership position since his passing, or stepped forward to help in some way or another, and when I’m shoved back down from the pain I feel like I’m worthless to others. like how can I be there and be strong for others I’ve committed to if I in my valley? I know I will again climb out of that valley when I’ve spent my time in the depths and I will be stronger on the other side of each valley…but while I’m in the valley…I feel fake. un-genuine. lonely. superficial. alone. I just fake it til I make it thru. but all I really wanna do is curl up and just shut the door to the world and be alone in my pain. it overtakes me when it comes. I can’t focus. It becomes hard to do regular every day chores again…cooking becomes a HUGE mountain to be climbed…I can’t do it. laundry piles up and dishes sit in the sink…and I just feel I can’t do life well. because it’s not just pain or sorrow. it’s physical pain too. my body hurts my head pounds, I’m exhausted and can’t remember anything unless I write it down. it literally is like he just died.

and I have to sit in that valley and pray my way out of that valley when I’ve seen or heard or learned what He needs me to learn in that valley, so I can come out the other side of it better. closer. fuller. but in the valley it’s dark and scary…and I don’t know what He will ask me to do. My first valley I had to build walls around the 4 of us and redefine friendships and really start life over in a way. nothing was how it was before. it was a new beginning. that was a hard valley to walk out of. I sat in it for a long while. so in this valley what will I be adding to my life, or ridding from my life? will it be easy or difficult? there’s just no way of knowing without surrendering and walking into it…and praying my way out of it when I’m ready.

it’s necessary. the molding. maybe that’s what He was trying to do with me all along, long before Conner’s health started declining. but I didn’t listen because I was too busy to listen. red flag after red flag I would ignore and never feel good about myself. always a void. always something missing. it was always Him. but now I surrender to the lessons. I know that when the days become too much to bear and I feel weepy that another valley is coming…and I have to chose to push it away for awhile or to tackle it head on. it’s not an easy decision. because choosing the pain and the molding, is a total surrender. it’s being ok with the lack of motivation or energy and focusing on what I’m learning in my devotional time, prayer time and quiet time. and not rushing it. it’s like a storm. you never know when it’s going to come until it’s upon you. you see signs and signals…but not too long before. then you must take cover, or protect yourself from the elements. to seek shelter so it doesn’t destroy you. spend quality time indoors and be ready when the storm clears to walk outside and enjoy life again and fix what’s been broken and move forward. stronger.

and I’ll be honest…

sometimes I don’t wanna move forward. every step forward is one away from the old me…the life I used to live. and it feels like a step away from what was with Conner. I realize it’s also a step towards the promised forever with him…but right now, here on earth…in my heart it just feels so far away. it feels like forever since he gave me a hug while laying on my lap…

it feels like forever since we’d sit in that hospital together fighting to save his lungs from damage…fighting to save his life…

feels like forever since we celebrated his last birthday with the Fire Dept and friends with red balloons…

it just feels like forever since I was worried about losing him. I remember being so afraid and so hurt and so scared and unsure. I just never believed it’d be real so soon. I fought hard. he fought harder. and in the end it wasn’t enough. it was his time. and now it’s my time to figure out what in the world to do with myself…without him…

a mother in that dreaded valley once again…

without…

Letting Go of this world and truly Letting God

2011-09-22T22:11:00.001-07:00

I understand and respect that there are people who don’t believe in God…maybe they consider themselves spiritual but not religious. Maybe even 15 months ago you could say that I didn’t really know what it meant to truly believe and follow…and most of all what it meant to really “let go and let God.” It is a phrase that I’d heard many times in many different settings and situations, but never really knew what it meant, or try to apply that principle to my everyday life. a struggle would come upon me of any circumstance and I’d get the advice to “let go…let God,” and I would always answer quickly with the words “easier said than done.” and left it at that. because letting go means to relinquish control from it. to fully walk away from the circumstance or situation and just KNOW that God is in complete control. Here’s why I think I felt that way. because I would witness bad things happening to great people. children diagnosed with one disease, a mother getting the news her cancer has spread, or even circumstances as small as a child not getting picked for the baseball team. whatever the circumstance, I felt that if God was good that he wouldn’t let good people, who profess their love and commitment to Him get hurt. To let go and let God meant that while bad things happen to great people that it should be viewed as ok. (this is all the way I looked at it…) a good God who let bad happen. it didn’t make any sense.

then conner started declining and something shifted in my heart. I didn’t feel like it was unfair or a punishment. I didn’t feel like it was “something bad happening to a good family” at all. I was heartbroken, in immense pain absolutely…but at a new peace with God. I realized that God blessed our family with Conner for 7 amazing years and I felt at peace knowing where he was heading. it’s not like I didn’t already believe in God…but I didn’t know how to let go and let god.

until june 24, 2010…11:30ish pm…

that moment I learned in the purest sense what it really means to let go and let God. I prayed a prayer of thanksgiving to God for the blessing of our sons life…and I told him that I would be ok if he was ready to take him. because there was no unknown for me. nor my husband. we knew that heaven was real and gods love is tangible. I had to let go of conner’s physical presense in that moment and give him to god for protection. it wasn’t a hard transition in the moment…numbness is gods great blessing to me in that moment and for months after it. I knew conner was gone with god. and I continued to love and honor god anyway. thru it all. without a doubt in the plan. yes there was absolutely anger, sadness, pain and frustration…that’s grief and it’s normal and necessary…but there was also beauty in imagining conner running, heck even walking without oxygen or iv’s or tube feeds or medication after medication. there was peace in knowing that when I let go of conners physical presense…that I would be letting god take his spiritual presense. I believe it was the most important decision of my life. choosing to let god do His job instead of blaming God for his death.

what made me think of this all is in my quiet time with god I kept getting the same visualization, and hearing the same phrase over and over again. it looked like this: Let Go (d) let go let god. then it clicked and all came together.

I’d learned how to let go and let god. and it wasn’t the horribly unfair thing I thought it was before. it was beautiful and powerful. maybe that’s why I can smile so much of the day. I have no doubt at all where conner is, I don’t feel he was unfairly taken away, I don’t feel punished…I miss him terribly, but I know how close conner is to me. each and every day. that further validates my hopes and faith. its what made it possible for me to move past the ugliness that occurred after his passing. only god can do that. only putting my faith in god to help me…would have the power to do that. I’m at peace with life now. I smile all day long, no reason even needed…just knowing that god relieved my son of his sufferings is reason enough.

I have many days where I’m constantly thinking of conner. it’s actually every single day that I think of him. especially lately with all the changes we’re experiencing. sending hunter to kindergarten made me flash back to when I dropped conner off and hunter cried and cried. hunter also has conners teacher. hunter lost his first tooth, and likewise it took me back to conners first wiggly tooth. today I went upstairs to clean out the attick and toy cabinet and got on a roll…and found myself in conners room. packing away the important items that I feel are too precious to be left out to be lost or ruined. I finally took all the cards we received after his passing (I’m not kidding when I say close to 500 at least), and his funeral “stuff” and moved all of it into his closet for safe keeping and another day. I’m not ready to dive into it yet, I haven’t even opened his clothing drawers. I removed his bedding from the room and took his get well posters and put them in safe keeping. the room is pretty bare. the closet is full, the room bare. I found a tote of clothes for B to fit into and I saw a pair of conners thomas the train flannel jammies that he used to wear in the hospital. most things that come out of the attic take on that musty attic smell, even in totes…but I smelled the jammies anyway.

they smelled of conner.

I held them to my heart and felt the emotions come over me.

I realized I’d forgotten what he smelled like. it’s been too long.

I tried sniffing other clothes in that bin but the rest smelled of attic.

the best word I can use to describe that moment was intense.

intense emotions. vivid memories. took me back to the hospital where he and I fought the fight as one.

I was pretty out of it after that, for the remainder of the afternoon and into the evening. my heart once again took on that heavy feeling, my heart beat raced and my eyes stung with tears. it was like june 24, 2010 was yesterday it was that intense and that real.

then I remembered…

I had to let him go. I had to let god take him. not so much take him as save him. rescue him. heal him and use his story to glorify god and bring meaning to other peoples lives. to reach into peoples hearts and be so raw that they can literally see god in his story.

I chose to let him go instead of feeling punished for taking him away…

…and god saved him.

thank god for that.

Let Go(d)

Doing life differently…a transformation

2011-09-02T15:02:00.001-07:00

Second chances are such a huge blessing. and I wouldn’t even say that it is infact as much of a second chance as it is, a redirection. because we have endless chances to switch gears, and change patterns…but only one life to do it in. and with forgiveness and grace we are allowed as many second beginnings as we need to finally get it right. or…what feels right.

better.

second chances are truly a rebirth of oneself. out with the old and in with the new. it’s usually gradual I would suspect but sometimes life throws you a brick at your ankles and forces you to stop. just stop. and be still. stop avoiding the silence and just revel in it. listen in it. whether or not you believe in God in that silence you will hear the truth. your own unique truth. the way to your rebirth. your fresh start. it provides that 20/20 vision that we all wish we had all the time… “if I only knew then what I know now…” right? the silence provides perspective, clarity and answers long awaited in receiving, but too rushed to hear it before then.

silence.

you can only continue on in the wrong direction for so long before life stops you. god stops you. and whether it’s with a gentle nudge or full out push in the right direction He’s going to get you to see whats real. and whats fake. whats temporary. whats eternal. whats trusting. and what will let you down. he provides perspective.

truth.

I can truthfully say that since losing Conner life has been constantly changing. I embraced each direction that I was being turned towards. never knowing but never doubting. I knew god before losing conner. but I didn’t KNOW him like I do now. death changes everything. the child that I carried and nurtured, protected and fought for dyeing in mine and Brads arms changed everything. I was forced into a choice of betterment, molding of my character, blindly following and having faith not knowing where I was going…OR believe that his death was a punishment or evil having it’s way and crumbling me to the ground. forcing me to give up.

I never believed the lie.

I can honestly say that going from that night in June when Conner was being carried out of our home for the very last time ever that my lifes purpose and direction changed with the shutting of that front door. I knew the only way I’d ever get to be with him again was to really give 100% of me. not when it was convenient or easy…but always. in the darkest hour in my life thus far I could get out of bed each morning and greet the day knowing that today I was going to be molded and loved, protected and guided. and I was going to be shown exactly what it means to truly believe and follow GOD. He would show me just what I needed to do that day to be one step closer to Conner again.

forever.

it cost a lot. following Him will cost you. but the reward is much superior than any reward I could create for myself. a shift in priorities means a shift in influences, friends and acquaintances come and go and rather than let it get to me I had to decide that gods eternal reward is far greater than any earthly friendship or reward that could ever be offered to me. conner’s death gave me that perspective. God love showed me the truth. I decided that I couldn’t continue on living the way I had been…only half in. that if the death of someone so significant and important to me like my son didn’t kill me…that in it I could truly be made stronger. little things stopped mattering. but adding significance and true meaning to peoples lives (family included) is the only way to fill that void of time that I had spent caring for Conner for 7 years. I couldn’t fill that time with anything without value or substance.

time.

our lives are filled with time and choices. those are our two greatest gifts and assets. lending an ear to someone in pain is far more valuable than spending that half hour watching tv or just existing. I had conners med schedule down to a T and so I became very aware of what I was supposed to be doing at any given time if Conner were still alive…so I couldn’t allow myself to fill that precious life saving time with activities that weren’t truly valuable and meaningful. that made my shift easier to begin. if it didn’t add significance or value, I didn’t do it. I couldn’t feel right doing it. I became more open to listening to what god spoke into my life for that day and believe me some days it was something as small as “smile today”…baby steps. He truly does give us just what we can handle at any given moment with the right recourses. on days when my grief was and still is overwhelming to me I just smile during the day to people. they too can be living out their greatest life tragedy and what a difference a smile made for me on days where getting out of bed and putting a hat on was all I could muster. so how amazing and easy of a blessing it is to simply smile as you pass by people…it could change that entire day for them. I realized that I became a walking vessel for gods love. since he is unseen on earth…he uses the willing to spread his simple and undeserving love to everyone around. I would write blogs on what he fills in my heart that day, just as I am now…because I’ve seen over and over how something I’ve written has blessed another’s life when they needed it most. that is not me. and it’s a blessing to be able to be a vessel of gods grace, love and miracles…

so much is changing for us now. we smile more than cry…we feel thankfulness more than sorrow. we’ve learned how to live a blessed life with the pain of grief simultaneously. our story will be a testament of standing in the rain. of standing back up when the world tried to knock us over. what I know for sure is that we truly CAN do all things thru Him…if we choose to. what a beautiful choice that is. and I truly know that if I can make it after losing Conner, that I can make it thru anything…

and I will always choose to

love love love

a simple little toothbrush…

2011-08-04T22:12:00.001-07:00

What in the world is the big deal?????

Why today of all days to notice something that I hadn’t noticed before…or maybe I have, I can’t recall…

5 toothbrushes remain in our holder….

today it just got to me.

there’s only 4 living in this home.

one is no longer present.

but his toothbrush is.

I’m getting one child back to school clothes to go to elementary school…

there’s supposed to be two going to elementary together…

but there’s only one.

none of this gets much easier.

time definitely doesn’t, couldn’t possibly heal all wounds.

the pain remains.

a dull, nagging…that’s always there kind of pain.

not much else really matters sometimes.

but for some reason today while I was getting ready in the bathroom…he flooded my mind. and the tears came.

over a dumb toothbrush.

well not the toothbrush itself but what it represented…or lack there of I guess.

I’m tired of visiting a cemetary just to try to make sense of why I can’t see him anymore. I know he’s not there…but it’s all I have. it’s the last place I left him. I hate it. I hate when it rains and I feel the need to shelter his stone from the cold. why? I hate that sometimes I have nightmares of how his body looks now. it’s horrible. I hate that I feel like this. the more I read though, the more I realize how not alone I am in this. there are many moms and dads struggling to cope with the worst loss imaginable. I just hate sometimes just how much I miss him. the pain of it can be crippling.

the constant thoughts.

mind wandering.

exhaustion.

sadness.

then some joy.

some smiles.

some really good days.

then LIKE A TON OF BRICKS…

BAM.

the sadness.

the pain.

the numbness.

the headache and pounding of an anxious heart.

I hate hearing Hunters sadness over losing his best friend. “why did he have to die?” how scary for a very imaginative 5 year old boy. he knows his brothers gone…so now he won’t barely let us leave his sight, he’s scared to death that he could wake up again just like last June, only this time myself or Brad will be gone. he’s only 5. he suffers so…

Last week I had to get a photo of Conner for a friend to her. I was so devestated how far back in my pictures I had to go to get one of him. He’s not taking any new pictures. he’s gone. I have files and files of “family” photo’s, only he’s not in them.

they’re incomplete.
Hunter and Bradyn are growing up. and he never will. with us.

There sweet faces make me so thankful to have them here with me. and you can only imagine how much we love on them. I think they’re the most well loved kids I’ve ever met. because we know just how tomorrow could turn out. no guarantees. so we smother our kids with kindness, time and love. hugs and kisses. tickle tortures and dancing. pb&j for breakfast…and sometimes even lunch and dinner. we run thru the sprinkler together, sidewalk chalk together, ride bikes, read books, play at the park, go to the library and even plant in Conner’s garden together. almost always holding hands and always kisses…I’m lucky to have them.

who would’ve thought…a simple, stupid toothbrush could hold so many memories…

I miss him so much.

love love love

Contentment is foolishness…

2011-07-31T23:05:00.001-07:00

Not a single day goes by where I don’t think of Conner at least a million times. his presence and memory envelope me in everything I to, every place I go and never ceases. I miss him terribly. I don’t too often allow myself to wallow in the pain, or even think about the deep emotions that are behind the phrase “my son has passed away” because that’s truly an easy phrase to say…as long as you don’t connect it to emotions. but in silence and stillness I allow myself to connect it. to feel it. and it’s just so intense I swear its like he just left yesterday. I’m used to the pictures of him hanging in our home, I’m used to the medications being gone and his room remaining empty…but connecting the pain to the truth. reality. it’s still too much for me to handle. I believe that there must be a million silent suffering parents in this world. in the craziness of this world, I know that children die every single day. parents openly grieve. but then slip into a silent suffering. a pain that is too deep and too intense to even talk about to anyone. because nobody will understand. nobody ever could imagine it. in these moments when I sit and just think of Conner it’s still debilitating. and he’s been gone 13 months. really?

can that possibly be true?

maybe Ive fallen for the common misconception that in this life we should strive for contentment. to find a peace and happiness in every aspect of our lives. I see the importance of balance and tranquility, of a calm soul and a peaceful heart…but this world is a very dark place. we’re constantly bombarded with stress and everyones opinions and problems. we’re too busy because we feel the need to keep moving, maybe as a unconscious coping mechanism to avoid hearing all the negativity that is so readily available for our ears…whether we ask for it or not. this world is full of criticism and harsh words. I think there’s a point to it. and I think it applies to all aspects of my life as a grieving mother, a mom to two wonderful sons, a wife and a person. here’s my great secret…

we’re not supposed to be content on this earth…

God doesn’t want us to be. that’s the only way this constant pain in my heart makes any sense at all. I’ve felt so isolated and alone with these feelings and emotions…and then I realized, that discontentment to this world and all it has to offer us…means finding contentment for the world that’s promised to us after all of this…

I have always known that I will never get over Conner, and that the pain would one day magically disappear, but I never took it the step farther as to why it wouldn’t. why it shouldn’t. for if I skip over my feelings and try to find earthly contentment in what’s happened in my life…then I miss the whole point of life.

the yearning for something more…

something only God can provide. He’s promised to save a place for me if only I trust in Him and follow Him. For me it’s easier than ever because there’s a precious soul whose waiting for me there that I must not let down. my life and soul depend upon it. and I must lead and guide my living sons in the same manner so we will all achieve our hearts deepest desire to be a family of 5 once more. but this time forever and ever. and always, always, always.

God doesn’t dole out punishments to us nor does he want to see a single tear shed from our eyes. but what he does want is for when the storms come…the negativity, the loss of loved ones, the unhappiness and despair, because we all know they will come…He wants us to hold that pain and truth dear to us to remind us just how impermanant this life truly is. to help us yearn for the eternity that’s been promised. lets face it, we’re all one text or call away from a pain that has no cure. a call that will stop the world from spinning and challenge everything you’ve ever believed in your life. and choosing the pain as as a stepping stone to something bigger that God is yearning to show you is all I could imagine doing. and believe me it’s not been easy. I’d give anything to have Conner back. but I know how I used to be, the person I used to be. the things I used to do. the contentment I had in this world. my assurances of tomorrow. and now…a child of 7 has taught me more this past year about the purpose of our existance, and I know for sure that I never would’ve “gotten it” any other way…

so I cry and grieve.

I yearn and I hope.

I hang loosely to all that this world has to offer

and cling to the promise of a place much greater than this.

and I realize that being content in what this world has to offer is settling for less than what God wants for us.

and I’d rather have that instead.

Days go by…

2011-07-20T22:45:00.001-07:00

I hate days like today when I can feel the void of his presence. I hate when I just sit and I know he’s gone. Feels like forever, yet feels like just yesterday at the same time. old pictures and old videos is all I have remaining that I can hold onto when I have days like these. I look at my counters and how bare they are. they used to be stacked high of medications, vials, IV flushes, alcohol wipes, nebulizers air drying…but no longer. I keep finding remnants of the life I once lived scattered in random places. I found an inhaler and his spare MICKEY button for his Gtube. I found syringes. An over abundance of liquid ibuprofen in our cupboards because of his high fevers his last few living months.

but what I really want?

to hold him. just to feel him. touch him, smell him, kiss him, and never let him go. to see again that goofy half missing tooth, half HUGE tooth smile that melted my heart. to hear his sweet voice, and to watch him light up when his baby B walked in the room with his “squishy cheeks”. to listen to him teach Hunter how to do all things boy…and I would give anything to hear 3 kids fighting over random, meaningless toys instead of just 2. the silence is the killer.

one year doesn’t really mean anything in grieving. it just means that I’m used to the ache. the constant mind-wandering, the constant…reminders that oh yes, infact, he is gone. it means we made it thru the holidays in one piece and we survived D-Day as best we could. but the pain…stays the same. hunter…my sweet middle child Hunter was not meant to be the biggest brother. it’s been a huge transition to be the big boy in the car, teaching B how to say different words, and all that goes along with being nearly 3. and it just breaks my heart that B will never know the Conner we adored. The Conner that causes Hunter sadness so often. “why did he have to die mommy…” uh…I can’t explain how my heart rips into even thinner shreds each time Hunter asks me that question, or cries for his brother.

there is purpose…and I have faith that there is…but pain…I’m just tired of hurting. God has extended me farther this past year then I could’ve ever imagined. he’s provided amazing support for our family and positive people to be there when we need to be built back up. For those blessings I am thankful indeed.

we’re heading into vacation without him. everything is now without…

I hate being without…

it’s the hardest chore ever to try to learn to feel whole again…all the while knowing I never truly will this side of heaven…I’m a mother without.

without

Love Love Love

meaningless

2011-07-07T14:34:00.001-07:00

“Man is not perfect. and a free choice may be good or bad. That leaves man with a tremendous potential. a frightening one. that leaves man as a channel of light or a party to darkness. there’s no way NOT to choose…you either make a choice, or by not making a choice that IS your choice. God did not pick you to die. rather, nature had its way. nature and man, neither perfect. but all of us subject to the processes they set in motion. how guilty am i? WHAT HAVE MY MANY THOUGHTLESS ACTS SET INTO MOTION? How many times have I done nothing and so abetted the darkness? how responsible am i?

and god.

Where is he in all of this?

he changes neither the acts of nature nor of man. we remain free. he created us free, and with that terrible freedom we live. but the moment we prefer the light, he transforms…HE TRANSFORMS NOT THE CIRCUMSTANCES, WHICH WE CREATE…HE TRANSFORMS US! He transforms how we see what has been there all along. it never changes. God never changes.

WE DO…”

I’m reading the most amazing book/journal. it is so inspiring to me and is helping me to not feel so different…I can read what other moms have gone thru losing their children and knowing that I’m not alone and I am not weird. I am normal. grief isn’t a one year or even five year process…it’s lifelong. I’m so thankful for this book. any mama’s out there needing a book of LOVE and understanding I highly recommend “Song for Sarah” by Paula D’Arcy.

Such emotions lately. So much going on bringing out pain that has been best left buried deep within me. only temporary those hiding spots are though. In this pain I’ve learned so much about life. I feel blessed to know these special secrets that only those in this “club” know. because before losing Conner I never would’ve gotten it. not even in the fight for his life. I thought that taught me a lot. not even close to now. a fight shows you that god is there. the fight shows you that people have a heart for good, or that they don’t. the fight teaches you that you are stronger and can handle more than you realized. but after the loss…that’s where push comes to shove. its so easy to pray for miracles and pray for peace. to pray for your childs health and for their pain and their life. that’s easy. it’s easy to have faith in god when your child is still laying next to you and the world still makes sense…

but after the loss…

the entire world changes. you’re not you anymore. you’re family isn’t the same family anymore…the missing piece causes an interruption in every aspect of who you once were. that person I used to be is a memory. a very distant one. each day I grow closer to who god is molding me and who he intended for me to be all along. after the loss, your forced to really chose god…or decide not to chose him. that’s where faith is tested and where you learn that there is no guarantees in this world…you see it just for what it is. you learn that you wasted so much time, even in that beautiful fight on things of such unimportance. because now…you have a full house it seems…only without that one it really is an empty house. everything becomes meaningless. it’s unimportant to your daily existence. here’s what I have now…a closet full of clothes taunting me. causing me pain. why? their only clothes…but they represent so much to me. His room doesn’t cause me pain. his toys don’t because the boys always shared all their toys so nothing is strictly his. but his clothes. hunter could fit into them now. but I won’t let him. I can’t imagine seeing his last clothes on anyone else. I’ve always passed clothes down thru my boys but these ones are different. they have so much meaning. I look at them and remember vividly him in them. even down to his underwear. I can imagine how silly it sounds. but what’s the importance of these clothes? it’s a lot like so much in life. we think is desperately important. like being on time. like having a perfectly neat and tidy home. like putting our kids in private school, never missing sunday school and making sure our children are perfect in the presence of others. while respect for others and manners do matter…the child matters more. you can’t understand it fully until you’ve lost it. I wish for you to see it now while you still have it. the child matters more. loving openly without regret. throwing the daily schedule out the door and living in the moment with your family. that’s what’s important. we put off so much for tomorrow…but friends tomorrow is not promised. do everything you can today to show your family what they mean to you. now the things that cause me pain taunt me. his clothes. his memory. like a fresh reminder of just what was a waste of time. what we put so much time and value into that in the scheme of life means nothing. now I have clothes, pictures, videos and memories. that’s it. how much time was wasted as he grew up…I was so secure in tomorrow. in the daily grind. I never truly got it. the no guarantees thing. now I get it. but now it’s too late. I get these dumb reminders in forms of clothing and photos of just how much I missed out on. how much I didn’t get it at all. life truly held no REAL meaning til Conner left. don’t mistake, my family and I have meaning…but not the shallowness of the previous…US. we’re different. we value a day. staring at drawers full of memories is a gut check. reality sets in. so much time wasted. spent on unimportant stuff.

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, ³ because you know that the testing of your faith produces perseverance. ⁴ Let perseverance finish its work so that you may be mature and complete, not lacking anything.” (James 1:2-4)

I live by that verse. it flows thru my head many times thru the day. I try to keep telling my heart that this journey is a blessing in disguise. And for all the pain we’re going thru the glory on the other end will be worth it. I know it will. I’m just tired of feeling different. of feeling this constant pain. the anxiety. the tears that still come many times a day, out of left field it seems. I just miss Conner. desperately. I wish I had one more chance with him. Just one more hour…hell I’d take a minute. just to feel him, touch him, breathe him in…love him the way a mother needs to love her child. I wouldn’t waste my time with him, I know whats important now and that’s LOVE. not toys, or parks, or books, or playdates. just loving. embracing always. loving thru it all. love love love…I’d give my life for one more moment to show him what I’ve learned from him. I’m tired of seeing everyone elses smiling faces and I try to keep one on mine…but inside there is no smile. I’m tired of the internal, heavy, permanent sadness. the emptiness. the confusion. this world is turned upside down for me…how in the world can everyone else keep walking like it makes sense? how can they not see all the meaningless things they do? I cringe seeing people treating their children the way I used to….”not now…just a minute…when I’m done….” but….I needed to learn I guess that life can change in just one minute. because it did. I am still haunted by how in one day my life as I knew it was over. I never could understand how this life can be so cruel and take away a child from his mother. a mothers job is to love and nurture…and without a life to love and nurture…what does that leave you? I’m tired of the world thinking that because you have other children that should be enough to help you get thru…truth is that one does not replace another. love for every person in your life is different and each relationship is unique. two living sons does not take away an ounce of the pain of the child long gone…it never can. it’d be the same as saying to someone who just had a leg amputated that they should move on cus they still have another leg. well guess what…that missing leg…that missing child represents the emptiness that only those in our shoes can fully understand. one does not equal the other. but learning now about whats meaningless in this world does make me a better mother to my two living. I hug more than criticize. I kiss more than ignore. I live more than I exist.

I’ve learned to surround myself with people who speak life and not death. I’ve learned you are who you associate with, who you’re friends with. each person in your life is there by your own allowances. your chosing that person. so if that person isn’t a person who will bring you up and speak life and love into your days then what in the world are you chosing for yourself? your family? I’ve learned to keep my inner circle smaller than ever before. not many have access to the full me. In the meaninglessness of this world I’ve also learned that there are many in this world simply living to hurt. to bring darkness and cruelty into lives of others who will allow it. but they’re crafty in their scheme. they know their game well. they lead you to believe they’re one way…then they show you just how wrong you were in trusting them. I never would’ve believed it a year ago. each day I still struggle with believing that others can exist to hurt, destroy and steal others joy. because I’m not that way it’s hard to believe it exists. but it does. keeping my inner circle very small has really helped. there is simply a handful of people who know every single thing about me. who’ve walked side by side with me thru this journey. I guard my heart and I hope you do as well.

see how much my mind wanders these days? what a disaster. I am still waiting for my brain to come back to me. the simplest decisions are so incredibly hard and I have to focus and concentrate so much harder on the simplest of tasks because my mind and heart are already consumed. trying to get my brain to take on anymore than missing Conner and dealing with the pain is impossible. I have to have people repeat themselves over and over. my brain just doesn’t get it. all that’s floating thru my head is conner…and the pain. I wish it’d get easier. but can it really get better? I don’t think it’s possible to get over his death. and I know that I won’t so I am not trying. I’m merely surviving. each day making it out of my house fully clothed and the kids with me is a miracle. you grieve deepest those who you love the most so I will never hurt any less…I believe it will always be there. the pain.

I just miss him.

I hate looking at his clothes hanging up in his closet unworn…

just reminds me how I failed.

I’m tired of this pain.

dearest Connerman…take care of me from the heavens…hold me like you used to, be so close I can feel you…because mommy can’t do this without you…

love love love

we got by with a LOT of help from our friends…

2011-06-25T23:37:00.001-07:00

It’s the 25th…well close to the 26th of June now…so my son has been gone over a year now. this was without a doubt the most difficult week yet. I don’t really have the right words to explain it all…I wish it just made sense. but not much does these days. he’s gone. we’re not. and making that transition is horribly difficult and incredibly painful.

his day was as nice as it could be. the very best of people surrounding us (with a few exceptions of people who were out of town) and pastor gary spoke a wonderful message. and the balloon release was breathtaking. we had a very relaxed day then at our home afterwards with the sounds of childrens laughter and family…

we made the most of it….

I’m very glad that this week is now over…

thank you to our family and friends (extension of our family) for being there for us from day one…we are so grateful for you…

Love Love Love

So many memories, so much heartache…

2011-06-21T23:11:00.001-07:00

I cannot believe it’s been close to a year. my mind keeps pulling me back to a year ago and what we were doing. he was alive, but struggling. he is free now, with a body not even I can imagine it’s perfection…but it doesn’t change the pain. I will always be grateful for the time I had with him. for being chosen to be his mother. I will be thankful that breathing is now easier than ever before for him. but I will always be broken that he’s gone. I will never be ok with him not being here in the flesh for me to hold. that’s a mother’s job. to love and protect. and what can you do as a mother if you can no longer love in the flesh the child that means so much to you…and what good is it when you’re a mother and you couldn’t protect him. he had to leave. his life journey was complete. I can’t lie and say that I’m ok. because I’m not. this week is no exception.

every day of this week I’ve been vividly remembering where we were a year ago. what we were doing. the fight that was nearing it’s end. I’ve allowed tears to come when they need to, regardless of where I am or who I’m with…I’ve accepted that I’m in my season of grieving. that I can’t keep faking the smile that covers my broken heart. that I need to feel the pain…and feel gods arms of comfort. I need him to protect me. I need his grace and compassion. his peace and understanding. his strong arms to carry me. because I am barely surviving right now.

do you even know how much I miss doing a neb treatment for him? how I’d do anything to have that annoying lineup of vials and syringes, and neb cups and medications laying out on my counter to prepare for him? to hear the humming of that huge oxygen concentrator. to see that sweet face. to hear his squeaky little voice. to feel his skin next to mine and smell the breath from his lips. his breath that represented so much pain and so much fight. I’d give anything for that again. to remember what he felt like and smelled like. to remember how his face looked when he’d tell me he loved me. I’d give anything to trade my day filled with denial and constant busyness for a day of determination and purpose. fighting that damn CF that invaded his lungs and took over our lives and left us empty handed. I’d give anything to hear Hunter and Conner fighting. I’d give anything for one last picture. I’m so sick of seeing new ones of my boys, and only having old ones of Conner. no more new pictures.

I’m trying to learn how to enjoy the journey and embrace the process. because there’s a reason my job on earth’s not finished yet. I just feel so far from Conner this week. Friday holds that dreaded date….but thursday is the actual day he passed. 365 days gone. two hard days in a row.

somedays I just wish it was all easier…

or a nightmare that I can wake up from…that my son will wake me up with a kiss and a hug and the pain would disappear…

Love Love Love

No it’s not right, and No I’m not ok

2011-06-14T23:00:00.001-07:00

It’s one of those nights where I just need to write. emotions hit me like a ton of bricks and I need it out of my head before it explodes. conner’s death-aversary, or angelversary, whichever you like, personally I hate them both, is next week.

I’m in shock.

I can for the first time look back to a year ago and truly FEEL the pain and the emotions we pushed aside or buried inside ourselves when we knew the end was looming. how else could we have made all those funeral arrangements and had a casket made if we didn’t bury the hurt? well I feel it all now. I feel like I’m suffocating. drowning in emotion. but somehow I function. I’ll admit getting out of bed the last month has been a chore I’ve never experienced. it’s like each of my limbs weighs a thousand pounds and my brain tells me to get out of bed, but my body won’t cooperate. many days I can barely get out of my comfy clothes…let alone my kids. if it’s not of the utmost importance, then it doesn’t matter…I’m in survival mode. in the last year I’ve maybe cooked 25 dinners. emotions have driven me to the point of exhaustion.

my son is gone.

really, really gone.

how cruel of a world do we live in where a mother is helpless to save her son from a disease and many people walk these streets without a care for anyone but themselves and their own instant gratifications without any reprimand. it just doesn’t make sense.

god’s plan.

I truly have become a better version of the old me…and I’ve learned so many difficult lessons about who I am, and who I am not….but wasn’t there any other way I could’ve learned these lessons? with my son by my side instead of under my feet at a cold cemetary? without having to watch him struggle, and gasp to breathe and die right in front of my horrified eyes? I will never forget the looks on his face of desperation that day. isn’t that unfair? cruel even? I will never forget it…

thinking that with my son’s passing, and getting rid of all CF related junk in my home, every nebulizer, all medications and supplies you name it…but not realizing that CF will never leave my home no matter how much I ache for it to. it still has power over me…even in his death. I thought it was gone, but I know now a year later that it’s more present in my home now then it was a year before. it’s everywhere. it’s tainted everything. everytime I ache for my son CF is there. everytime I find a leftover medication it’s there. when I grab an extra cup in the morning or a plate at dinnertime, it’s there. every single tear I shed on my pillow…you better believe it’s there. it’ll always be with me. some invisible glue that can never be undone. permanent. always there.

nearly every goal we reached this past year only became so because he’s gone. We’d never have had the time to do many of the things we do now because CF took so much of our precious time. I wish everyday for just a moment with Conner. just one moment. the love that I’d be able to give him in one moment now, is more than I ever could’ve when he was alive. heavens gain…my loss. and the biggest loss of my life. the most defining loss of my life. one death taught me right from wrong, hate from love, tears of sadness from tears of joy, important from unimportant, and even the meaning of living, not just existing.

ironically now…all I seem to do these last bits of time (seems I have no concept of time anymore) is exist. yet somehow god helps me to function just enough to fake it thru the day. “fake it til I make it”

survival mode.

he’s gone….oh Lord what do I do now….

cus he took my heart and my peace with him…

is this really all worth it in the end???? only God knows…

and since it’s the only way I get to be with Conner again…I’m gonna live to find out…

stop existing…stop making excuses…stop all the nonsense…be grateful, thankful, joyful and loving.

living is about so much more than merely existing…

cus anything can happen in the blink of an eye…life can forever change in one tiny moment

LOVE LOVE LOVE

Sooooo tired…

2011-06-06T23:21:00.001-07:00

I have not been sleeping well lately.

Mind has just been on a never ending thought rollercoaster. about everything. school, conner, summer, conner, money, conner…it goes on and on. it is so exhausting to say the least. I just cannot believe he’s been gone so long. see I can tell people he’s gone…and I know that he is…but my heart doesn’t connect it when I speak it. so it doesn’t hurt, that’s how I can talk about his death without tears…but when I stop and actually THINK about him truly being gone, I lose it. or if I’m speaking with someone…most times when I mention conner in a conversation, or his death, people just skip over it…but when someone actually is willing to talk about it with me, then my heart connects it. it becomes real. I thank god that he’s provided me with that protection. a coping mechanism. because if one had to deal with the full grief all at once, I don’t know if anyone could survive it. little bits here and there are hard enough to deal with….I can only imagine what it would be like all at once.

I lay in bed wide awake and I think about conner a lot. about good times, about hard times…but my mind won’t let me remember june 24th. the little bits and pieces that I can recall are like they happened yesterday. I remember where I was standing when I was transfering his care to hospice. I remember the chair I was melting into when the funeral director took my son out of my home covered in a white blanket. I remember the look in his eye…that will haunt me the rest of my days. I remember most everyone who came over, but so many people were in and out, and pastors came and prayed, and so I don’t have a clue who was physically around us just before he passed away and then after when they came in to say goodbyes…but anymore then that it is simply too painful.

even that is too much to think about cus tears are pouring down my face just remembering that. I truly, cannot believe it’s been a year. I dream of him often, he still leaves lots of red out for us in the most unexpected places, and sends remarkable people into our lives almost daily. it amazes me how much his story has impacted others, and how far across the world his LOVE has reached. I love to google his name and see it mentioned on many pages. it’s really what life’s all about.

leaving a legacy.

making choices each day to speak life or death into those around us. every decision we make, and every word we speak is an unconsious choice on how we will be remembered long after we’re gone. our legacy. I’ll be the first to admit that the me I was before he left is someone I’m so glad to have moved on from and left behind. I would’ve been ashamed of the legacy I would’ve left. and now…everyday I am very aware of my actions and words, and I’m very intentional in my love for people, especially those in hardship. I now know the power of our one life. the power in a legacy. can you imagine that a 7 year old boy with two horrible diseases could teach a grown woman these lessons? god is truly good. because in our worldly standards a kid is simply a kid…not always seen for their full value and potential. I’m proud to say that I had part in raising a fine young boy who knew his purpose, and left behind a legacy of love and not of hate. compassion for those who suffer instead of turning the other way. someone who made it 7 years beyond what the OB’s thought he’d survive to fulfill his purpose and leave his stamp on this world.

all that makes me miss him even more. imagine if I’d known while he was alive the power my little warrior carried. the knowledge well beyond his years he would bestow on thousands of people. the love he would show. the lives he saved. the many who returned to god after hearing of his story.

he left such a gaping hole in our lives. it can never be filled. though by our worldly standards a year should have us well on our way to recovery…or some even say not to let grief tear us down…to those people all I can offer is this simple thought. a child dyeing is something we will never recover from, yet we will learn to live with the pain everyday and we must let grief overtake us when it needs to. we are up and we are down…and it is healthy to feel it to try to make it thru the day. and though he was a small child in our home…he held a large presence in our family of 5. his voice was loud and happy, his medicines and oxygen buzzed thruout the house like background music, the laughter of 3 little boys has dwindled down to 2…and it’s noticeably different. it always will be. its unhealthy to deny the pain…and to deny it would be saying that he didn’t matter…that his life didn’t hold enough value for me to forever feel the loss and pain. and that is simply untrue…you grieve deeply those you love the deepest, and there is no greater love then that of a mother or father and their child.

what a legacy he’s left.

what a hole he’s left.

I’m just glad I get to chose to leave a better legacy then I would’ve before and I dare you to do the same…

now to try to get some sleep….

love love love

simplicity redefined…

2011-05-26T08:50:00.001-07:00

A simply bedroom rearranging. Something I do once or twice a year. New bedding, move the furniture, dust and clean…simple…

right?

that’s what I thought…

I started moving everything from under the bed and I had no idea what I would find…

hard, hard, hard…

a simple white bag with the name of the funeral home on it…what was inside about knocked the wind out of me…

The clothes he died in…

His death certificate which only exists to break hearts, because unlike a birth certificate nobody needs a copy of a death certificate.

and I found his box of school work from 1st grade, since he had to be home schooled the entire year because he was too ill…

that was hard to see…I wasn’t prepared for all of that.

I figured that I would have a lot of garbage under there to be thrown out, I never dreamed all of that emotional stuff would be under there.

then I found some stuff just from Conner to cheer me up…

and some of his hospital drawings…a heart cards for me and on the inside 3 hearts below HDB (Hunter, daddy, B)

and some other drawings…

(rainbows were his favorite)

and of course Transformers…

It really just goes to show that in losing a child, not even rearranging a room is the way it used to be. what should’ve taken me maybe an hour to do, took me nearly 4 hours to accomplish. it took a great deal of time to catch my breath after the wind was knocked out of me. The heartache is worse now than a year ago. But it’s different pain. initially it’s intense, overwhelming pain. where your body physically hurts, from all the stress and pain. but now…it’s an underlying sadness that is always there, settled in my heart, causing it to weigh me down. and it gets heavy to carry a broken heart. even with the huge chunk of it missing. the missing piece weighs more than all the joy and love that fills whats remaining in my heart. I can get by each day knowing the sadness because I’ve adjusted to it…I’m used to it now, and accept it as a part of the new me. it will never go away until I am gone. As a mom it is my job to love my children as long as I’m alive, not as long as their alive. since he’s gone, the love is still there, but causes such pain. it’s a delicate balance…I realize life is for living so I keep my head and heart held as high as I possibly can. but the sadness of his passing will be with me always…

but I do think that a simple bedroom rearrange should be able to happen without so much pain…I can adapt to the pain but that doesn’t mean that I want to all the time!

just sayin…

love love love

Walking towards a cure…

2011-05-15T23:12:00.001-07:00

Yesterday we walked a 5k for a cure to Cystic Fibrosis.

We walked in remembrance of our hero, our son.

Surrounded by those who mean the most to us…together we made it!

It was a day filled with many emotions. Conner’s Angels team was first to start the walk…and the entire time my heart was filled with mix emotions…I kept thinking back to just a year before…where we were…and how only 5 short weeks from then our sweet son passed away from the very disease we are trying to defeat…

Our team was much smaller this year, but I feel the most important ones were there…the ones who’ve really stood by us and really have walked thru this past year with us, no matter what.

I am glad this first is over.

I felt the signs that were posted at the mid point of the walk said it best…

and though our “reason” may be gone…we will never give up our fight in his honor…

we love and miss you sweet boy!

you continue to inspire us to be more and to never give up!

Love Love Love

Matters of the heart

2011-05-09T15:38:00.001-07:00

Grief is very interesting. I have been contacted by thousands of people over the last year, as Conner has touched their lives, or parents reaching out having lost a child of their own, or some asking how to relate to friends who have become bereaved. I feel honored to this calling in my life. I had to come to terms with the fact that Conners life journey was fulfilled so God called him home, and because He’s not finished with me yet, I have to fulfill the call He has placed on my life. That is why I still have breath in my body…

I feel I should reach out and give my overall experience this past year having watched my son pass away, and living and learning in the aftermath of it all, I feel that it may resonate with some people struggeling to feel “normal” after their losses, or relating to them as they watch their children pass away after a lifetime of struggle. I know my best form of help has been reading. I’ve read at least 30 books on grief this past year, and nothing has helped me more. no group. not talking about the loss. but finding validation in what I’m experiencing and that helps me to feel like I’m not alone…so I wish to try to provide that for some of you who have been reaching out to me this past year…

no particular order, not any one thing carrying more weight than another…heres been my lessons and insights…these are the things that I learned and have given my soul some rest in the mess of it all…

I will never be “over” it.

I will never “move on” without him, I will find a way to live without him, but never leave him behind.

nobody will ever need me the way he needed me, and that is ok. my living children need me and my husband need me, but having a special needs child that I nurtured in my body and fought for his survival since my 18 week ultrasound, I know it’s ok to know that his need for me will never be matched again in this lifetime.

I expect the ups and downs of each day. I’ve learned to go with the flow of grief.

I am not one bit embarrassed, nor do I apologize when tears fall out of nowhere, I’ve found confidence in sadness and pain

I’ve found perspective like no other situation on this earth could provide. who cares that gas has gone up? does it matter if someone talks about you negatively? NO! what matters, are matters of the heart. and I only focus on what I can control, and I only put my time into things and people that I love.

I’ve rewritten my phone book and address book of friends. I’m ok with those who couldn’t handle the pain, I love them no less, but I’m confident and I appreciate immensely those true friends who’ve stuck by me, or who came into my life this past year and have walked this step by painful step with me.

I don’t expect to really learn to live without him for years to come.

I know that grief can take years to heal and learn to live with, and I’m ok with that.

I’ve found great relief in distractions.

I’ve turned my eyes from this world to the heavens and I make every decision in whats best going to help me to get to be with Conner again.

I’ve learned that posessions of the deceased are important, but more than that, the memories and LOVE you shared uniquely is more valuable and can never be broken, destroyed, lost or taken away from you. I’ve had to deal with the loss of pictures I will never get back again amongst other things, and I found peace that in the great scape of life, the memories are still with me and the photos are simply proof of what I carry in my heart. not as important…

I’ve learned to not take people for what they SAY…but for what their really MEANING to say…

I’ve learned that if I have a servants heart and help carry burdens and pain, or reach out to those hurting that it makes my pain disappear for a moment and helps me to feel like I’m making Conner proud.

I’ve learned to answer confidently when someone asks me how many kids I have. I say three. I used to fear making others feel akward for saying that one child is in heaven…but I learned that by asking me that question, it puts me in an akward position as well, so I answer honestly…and let them know that I’m not upset they asked. I’d rather say 3 than 2 anyday…

I’ve learned a new definition of family and of love.

I no longer have “mommy guilt” for wanting a day or evening to myself…doing whatever…just to recharge my soul. I’d never take the time before but now I know how important it truly is to take care of yourself FIRST…

it used to shock me how people would see me and make a B-line across the street, or just turn around and walk away from me so they didn’t have to say anything to me. I used to get so hurt by that. it still stings I won’t lie…but what I know from that is, they don’t know what to say and more than that, those who are real and will become the most important people in your life will NEVER walk the other way…so cherish those people and let the others do what they do, afterall it’s not your problem, it’s theirs.

a hard lesson is that I’ve learned that I am and always have been more than just Conner’s mom. that one hurt…I lost my identity in caring for him and for fighting CF…I had to reclaim and rediscover ME.

I’m not the person, I don’t care for the same things, I don’t feel, think or love the way I did before I lost Conner. as he left my house covered in that white sheet carried by Rick Little into the hurse…the me I was, walked right out that door with him…and I had to find the ME of now…(still working on this…) but I had to realize that not only was I normal for feeling different…I had to embrace the journey to the new and improved ME…

if you’re trying to help someone in their grief here’s my advice to you…this is what we need and how we’re feeling:

please know that even though we may say somedays that we’re alright…we will NEVER be alright again.

please be ok if we cry…it can come from nowhere…trust me!

what has happened to us has changed our lives forever, we’re different people…please love us while we discover the new US. things that used to be important to us sometimes have no meaning any longer….our shallow worries or cares are gone.

don’t be afraid to say our childs name, and please be ok listening to us talk about them. we need to know that they were important and will be missed and not forgotten.

unless you’ve gone thru a loss of a child, nobody will know how we feel. it’s hard when others try to relate to us with losses of parents etc. every loss is different. a loss of a child is like none other. if you’re looking for words to share in our grief simply say, I’m sorry or just listen maybe.

know we will grieve for a very long time. please be patient.

**(this ones most important)** I put a mask on for the public. I have learned how to function to make it thru each day simply because I have to, I have no other choice. but when life is quiet and still the pain cripples me. it’s still there and is still very real.

**(2nd important)** just because I have other living children does not make the pain of losing one child any easier, nor should it be used as an excuse to “move on” or “get over it”

I found this quote and I LOVE it “when we honestly ask ourselves which persons in our lives mean the most to us, we often find it is those who, instead of giving advice, cures or solutions, have chosen rather to share our pain and touch our wounds with a warm and tender hand. the friend who can be silent with us in a moment of despair and confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not healing, and face with us the reality of our powerlessness, THAT is a friend who cares.” Henri Houwen

I’ve found that the term “heavy heart” to be real. it’s not something that can be put into words…but there are many times during every day where I can literally feel the heaviness in my heart. it weighs on my lungs and makes it hard to breathe. it’s not just a term to me anymore…it’s really, real.

even after almost a year without Conner, there are very few days that I can clean the house, I can’t keep up with the dishes or the laundry, on average I make one actual dinner a week. my body is so overwhelmed with stress, anxiety, sadness, pain, hope, and grief that my body is emotionally, physically and spiritually exhausted most days. if a meal is a simple sandwich who cares? if my house is dirty, what does it matter? if I wear the same clothes a few days in a row, the only person who will care will not be me, but you. because my life is still consumed with thoughts of Conner, thoughts of his death, the sadness of last June 24th, the pain from the people who’ve walked out of my life since then, the quietness most days when people don’t reach out…I’m simply doing the best I can. my children are fed and loved. my husbands heart is held safe with me and I cherish them all immensely…but beyond that, the rest is just details.

others have the luxury of not thinking much of Conners death, or our pain until they bump into us, or something remind them of us or him. But as his immidiate family, we walk in it, live in it every moment of each day. he had a voice in our home. he has a room he used to sleep in, clothes that he used to wear, a place at our families dinner table, a special corner of the couch, certain shows that would be watched and certain times, a schedule unique to him, favorite bath soap, his own cups and plates, his own smell, his own unique contribution to our home…and his presence is now absent. the silence is deafening. we don’t have the ability to simply forget. we have to cope and live thru each and everyday knowing that no matter what we do, no matter how badly we could pray or try to, he will NEVER be back on earth with us. and it’s a daily, hourly, minute to minute struggle to keep going. a choice.

no medication in the world could numb the pain.

no drink any bartender could ever pour would make the silence without his sweet voice one bit better

just because there are days that we look like we haven’t changed clothing, or find it hard to get out of bed doesn’t mean we’ve given up…we’re still trying.

each and every day still gets harder and harder to make it thru emotionally, shock takes so long to wear off, I know he’s not coming home one day, but my heart still finds it too hard to fully accept…and that’s ok. it’s part of the journey. I feel like our heart only gives us the tiny bits and pieces we can handle, over a very long period of time, because if we had to try to deal with all the pain at once nobody could live thru it. I think you’d literally die from a broken heart.

I’ve learned to guard my heart. keep my inner circle small. I don’t allow everyone into the depth of me…even in this blog as “deep” it may seem sometimes, it doesn’t come close to encapsulating the true me. I’ve learned that its so important to protect yourself. not everyone has good intentions. and while God commands us to love one another, there is a HUGE difference between loving everyone, and trusting each person with your heart. trust is earned, not a right.

I really don’t know what more to say. I just felt compelled to speak a bit of my journey thus far for you. my lessons, and what I’ve opened my heart up to learning. I know that the pain is like a sledgehammer pounding on my heart over and over again, making somedays so unbearable to survive…yet I’ve learned that I have nobody’s expectations to live up to. no timetable to follow. grief is a journey of the heart. and you make it one baby step at a time. and I’ve learned that people who try to rush you thru it, only do so because it makes them uncomfortable to talk about death and pain. and that is their problem, not my own…

Love Love Love

It’s here…and I’m done…

2011-05-05T14:20:00.001-07:00

I don’t really expect this to make much sense. I’m just gonna babble it out.

His headstone is in.

Installed in the ground.

above his bodies resting place…

and it’s become a permanent, REAL, harsh reality.

he is gone.

and we have been left behind to manage somehow.

grief has no timetable, infact the shock of his passing has just begun to lift.

he had a birthday he wasn’t alive for, forever 7 and never 8.

his headstone is in the ground signifying the end of his precious life on earth.

mothers day…and one of my babies isn’t here for it for me to hold him or receive a special craft from.

cf walk is next weekend. he will not be there to walk and hold his banner and wear his new shirt with us.

it’s almost been one year.

never felt so lonely.

never felt so broken and raw.

his headstone is beautiful.

and the ugliest thing I’ve ever seen.

CF Warrior Conner Reed Jones

Our son, our brother, our hero

hold your kiddos tightly…

Love Love Love

Are you aware?

2011-05-02T13:51:00.001-07:00

Are you aware that every single day a baby is born with Cystic Fibrosis? 1 in every 3000 live births is diagnosed with CF. Are you aware also that every single day a person with CF dies? Is that ok with you?

Are you aware that CF is the most common, deadly, genetic killer of children and young adults, attributing to 484 deaths per year, 40 per month, 9 deaths per week, and one death each and every day?

Are you aware that a median predicted age for someone diagnosed with CF is mid 30’s? Is that a long enough life to you?

Are you aware that if you are in a room of 100 people, statistically there will be 5 symptomless, unknowing carriers for this devastating disease? That’s more than 12 million Americans.

CF is not a faceless disease.

We all know people who are living, fighting and surviving with this disease. We all know at least one precious child, Conner, who didn’t win against CF’s death sentence. CF is very real. It’s very lethal. It takes ahold of a body and ravages it, devestates it, complicates even the digesting of food and leaves a family overwhelmed with therapies, medical bills and doctor appointments. are you aware of the battle these 1000 new families diagnosed each year face? Have you seen CF’s progression…if not take a look of what it did to our sweet boy…

7 years ago we first learned of CF. And now 7 years later we know more than we could ever care to know about the power this disease has…

CF allows for some family memories, school and normal living…

sometimes it’s generous enough to let you lose a first tooth or two…

slowly is starts to change your life…adding lots of medications, dr visits and hospitilizations…

it forces you to have to Make your Last big wish…

then it forces your body to work so hard just to breathe and survive that you can’t wake up and enjoy life…

it forces you to knowingly celebrate your last birthday alive at 7….

spend your last mothers day together…knowing the only thing you want, you can never have!

do your last family trip together…

you try with all your might to not let it stop you from living and enjoying life…determined to smile thru the pain…

but sometimes it just shows the damage and pain…

and you quickly realize your no match for it.

One day you wake up and it’s the day you’ve dreaded your entire life…

the last one together this side of heaven…

you stand by and watch, helpless to save him or stop death from stealing your angel…

but…you can’t.

and you’re forced to try to pick up the pieces of your shattered heart and move forward without him…one quarter of your life…but you can’t

you’re a family of 5 minus a beautiful 1…and life will NEVER be the same…

BUT…CF is still real! It’s still stealing lives and loved ones everyday…

So we continue the fight in honor of him….the one who taught us how to appreciate the little things in life and face each day with a brave smile…

and to try our hardest to stop this disease before is destroys another family like it did to us…

Great strides for CF is May 14th here in Vancouver, WA. Please help us find a cure! click the link to join our team, donate funds, and pass along not only to help CF stand for CURE FOUND, but to let CF parents sleep easy at night knowing that their child isn’t a walking time limit…nor a statistic…but a child who has the potential to live a very LONG and healthy life without CF stealing away their dreams! I’m keenly aware of CF and what it does and is capable of doing and I’m not going to let it keep destroying. I know CF is not a faceless disease but has many, 30,000 faces infact. And now…you’re aware too…question is what are YOU willing to do about it?

http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7136&idUser=134723

God Bless…

With broken hearts and LOVE LOVE LOVE

The happiest place on earth…

2011-04-21T21:53:00.001-07:00

Last week started like any other…

well kind of…

Monday was my birthday, and that in itself is not a big deal, except that this was my first birthday without my son. My mind keeps going back to a year ago and this time a year ago, I was on the phone with the docs often, they were trying to admit Conner, and I kept refusing, so Conner could be home for his birthday…so my heart was pretty torn apart on my birthday. Many flowers and cards arrived that day and they all made the day much brighter, great friends came to visit and the house was full of laughter for the most part…

I knew Conners birthday (thursday the 14th) was going to be even more difficult. I just can’t fathom celebrating his birthday yet. We associate birthdays with becoming a year older, and well, he never will be 8. So rather than sit in our house and mope…I planned a surprise trip.

not even Brad knew where we were headed…

SO wednesday I packed the car for our roadtrip…and when Brad got home we left….here’s our trip in pictures…Conner was with us for sure!

We hopped in the car ready for adventure with a beautiful sky…

Made it to our first destination…Trees of Mystery

then packed back in the car and headed to our next destination on Conner’s birthday…

(ya Bradyn doesn’t like people dressed up…even Goofy)

Day Two at Disney…

then on way home we stayed a night and left our hearts in San Francisco…

We were gone from Wednesday thru late Monday (or technically very early Tuesday am) it was perfect to get away and enjoy the sunshine, it re-energized our spirits and helped us smile, and not concentrate on Conner’s birthday and the sadness that brings for us. Conner was with us the whole way. Lots of hearts all over the place, stickers stuck to the ground in disney, and even three red heart shaped fireworks during the disney “dreams come true” display, there was eagles soaring over our car the entire way to Anaheim from Cresent city (10hr drive), the big tree at the end of the trail in trees of mystery that said I love you all topped off with a HUGE red lego. It was just an amazing trip, with our amazing family…and even Conner as well. We needed to get away, a vacation was long overdue after the year we’ve endured…and it was perfect that nobody knew we were leaving, or where we were…we just dropped from the world for awhile and spent time as a family, having fun, smiling, snuggeling in bed together, riding some rides and just spending the best week we’ve had in a year together…

because time is the most precious thing we have…and our only guarantee in life is there are no guarantees…so we spent time where it mattered most.

together…all 5 of us…

death may have robbed his physical body from us…but his spirit was and is still very much with us…

LOVE LOVE LOVE

Well it’s here

2011-04-08T21:48:00.001-07:00

IT’s the week I’ve been dreading next week. I have to admit life has been very up and down lately. The sunshine today though, and waking up with not one cloud in the sky was so refreshing! I JUMPED out of bed and we spent all of it outdoors soaking in the vitamin D and God’s rays of LOVE. I’ve been running more lately. I no longer do a 5k as my main run. Erin and I run 5 miles about 3 times a week, and yesterday I ran 6 miles myself pushing B in the stroller. can you believe that? a 10k! It was an amazing run. When Erin and I run our 5 mile run at 6am we complete it in about 55 minutes. Yesterday, I ran all by myself with B in the stroller and God speaking right into my soul…and I completed 6 miles in the same exact time it’s been taking me to run 5 lately! I was amazed. Running to me has been a time to just be still inside. To not have to think about Conner’s death, or stress or any of it. Yesterday’s run was just amazing though. The entire time God was speaking into my life, the themes that He kept speaking to me were “stay strong, stay focused, stay hopeful and positive. Don’t worry over others, I’m working on them, so you don’t need to fix any of it. I am fixing it…just as I am recreating you…stay strong in love.”

I was in awe the entire 6 miles. The sun kept peaking thru the clouds and warmed up my face. I’d close my eyes and just jog and I could honestly feel His unique love for me. For 55 minutes my brain got to forget, got to be silent, got to receive instead of constantly giving…it was perfect.

then waking up today to the sun was icing on the cake. birthday cake…

Monday is my birthday. my first without him.

Thursday should be his birthday…but he will never turn 8.

I can’t even fathom “celebrating” his birthday. Yes I’m so thankful for his birth and the life we created together, but in my heart I know that we celebrate birthdays as a year getting older. and he never will. The bible even says the day you die is better than the day you are born…so maybe June 24th we will celebrate his life, and try to find peace in his death. but honestly I can’t even imagine doing that. my heart is still so raw and fragile. so much has happened this past year. and you simply can’t “get over” 7 years of the greatest love in just one year. Honestly, I know that I never will “get over” it, and I’m not even attempting to. I’m just trying to find ways to keep a smile in my heart and find more days filled with joy and love then tears and sadness. it’s an everyday battle. its still as fresh and new as a year ago. it’s still good one minute then a mess the very next minute. I don’t know if that ever will change. He left and took a third of my heart with him. and that will never regrow or become whole again. it’s different.

so birthdays this week.

then mothers day.

then CF Great Strides walk.

then our 10 year wedding anniversary

then memorial day

then it’s june…

just trying to keep my head above the water with all of this upcoming stuff.

feeling alone in this has been so difficult. but God’s teaching me to stay strong…

one step at a time…

Love Love Love

OutRunning CF…

2011-03-20T20:33:00.001-07:00

Its so nice to feel loved.

To feel supported in something so dear to our hearts. I love how God brings people together for a very important cause to our family. To destroy Cystic Fibrosis. A year ago, I couldn’t have imagined the variety of people who were there with us today, and who wouldn’t be there any longer. it worked out perfectly. we gathered at the lake at 2pm to do a 5k in honor of our sweet son who lost his battle 9 months ago…Conner

my heart was heavy, as were my legs, as I ran, alternating running partners between Erin and Brandon…

and Amy…

this time a year ago, we were in the hospital for another CF IV cleanout treatment, we were talking with hospice and trying to figure out what is best for our child so he could die peacefully…something I will never be able to put into words, nor would I ever wish that upon anyone. finding the strength as a parent to sit in those meetings, constantly with a HUGE lump in my throat, and trying to be strong for Conner, and to honor his fight, and help him to pass into heaven in comfort and free from pain.

a year ago we were planning his last birthday on this earth. and now we can’t decide what to do for his first birthday as an angel…away from us. I truly hate this disease. it’s killed the dreams of so many innocent families, it’s robbed so many moms of their babies, so many fathers of their firstborn sons, causes excruciating pain that cannot be put into words…

it took a HUGE bite out of me, chewed me up, and spit me out in pieces…tiny pieces, that I still after 9 months cannot figure out how to put back together again. I’m numb. I walk around wounded. a very heavy chest. a tear threatening to fall almost constantly, and I do release it every once in awhile…but I know that truly once I start, I may never again stop. my heart hurts. I’m incomplete…

so, today, it was my HONOR to run for you families still in this fight. for you adults living the day to day grind, you parents fighting with insurance companies and sterilizing and going insane over sputum cultures. I run in honor of all the pregnant moms-to-be who will have a child diagnosed with the leading cause of death in children of any genetic disease, I run for the afraid, those on ventilators, those waiting for transplants, those families sitting right now holding their CF warriors hands, for the parents starting “those” discussions, those in hospice, those who are thriving, those who refuse to quit living…and so tonight my feet ache, but it’s a good ache.

a worthwhile ache.

today I out ran cf with all my might…

so that tonight I can rest my head knowing that someday we won’t need to outrun it any longer…

With Love & Broken Hearts,

can I do it…I dunno yet…

2011-03-10T14:53:00.001-08:00

my emotions are out of control lately, grief has washed over every part of my body and it refuses to let its grip loosen on me. I don’t know most days if I’m coming or going, if I’m helping or hindering, if I’m being a good mom to my two living sons or causing more harm then good, if I’m healing or tearing open the wound again…over and over and over. if you were to ask me when Conner passed if I could imagine such intense emotions and feelings I could never have fathomed this. never. I thought I had an idea in the beginning how this was gonna go, and play out. the pain was stabbing and sharp initially. it was all consuming and molding me into someone I never knew before. I embraced the process. I thought that it was all beginning to make sense and I was beginning to find balance. I thought, I thought, I thought…

truly…I had no idea what was to come.

while I no longer awake with a huge gaping wound, and while I no longer waking up hoping and praying that it was just a bad nightmare, though I’ve taken a step forward from all of that…man oh man I’d give anything for those emotions back again. not this. not what is the new normal. I cant hardly tell if this is normal or if I’m going insane from grief. I can’t find anyone who just gets it…to be honest with me…to tell me that infact I’m not losing my mind…because none of my friends know. they haven’t gone thru it themselves, so they’re along for the ride with me and I’m sure secretly praying that I’m ok. but I don’t feel ok.

nothing about me or this or any of it feels ok. I feel as though every nerve ending in my entire body is tingling and on the surface, even a touch sends me over the top. memories of whats transpired this past year push me far to the brink. I’m deep in despair…and I feel as though I’m a walking wounded…with my wound fully exposed to the world because I have to heal from the inside out. there is no scab. no magic bandaid. I’m fully raw and exposed. I cry. I wake up in the night with tears in my eyes. I’m tired of pity. I don’t want it, nor do I deserve it. it hinders, not helps. I’m sorry too. I’m sorry for all of this. I’m sorry this is my journey…that my son had to die. that I’d have to struggle more almost a year later than I ever could have imagined 8 months ago.

everythings a countdown. its march…this sunday I’m doing a race for his hospital, our home away from home, Doernbecher Childrens hospital. we just received an invitation from Doernbecher to a special ceremony honoring those Doernbecher hero’s who lost their battles in the last year. conner still gets mail from Lego that shows up and pushes me over the edge. I find myself getting upset when I see red now…because I don’t want red. I don’t want a stupid red lego. I don’t want any of this.

I want my son.

alive.

I want the pain to end. I want the nightmare to stop. I want to wake up and have found a way to learn these lessons and to allow God to mold me into who He’s designed me to be, but…WITH MY SON STILL HERE….

I can’t handle it all. spring used to be my favorite time of year…sunshine and flowers coming out and blooming signaling that life carries on into another season…I’m sure I’ll love it all again…but my mind wanders to a year ago. we were planning Conners last birthday on this earth. we were ordering Hawaiian Leis and palm trees…plans were being made with the Fire Department to deliver him his very own birthday cake. red balloons, love from family and friends, and a few that turned out to not be friends at all…people just along for the ride…it’s been a year almost. A year ago I was preparing my speech for the annual Chefs Dinner for CF, getting ready to talk about how my son is dyeing and how badly a cure is needed…and now…it doesn’t matter anymore for us. it’s over. done.

I’m tired of seeing nothing but old pictures of Conner. never any new ones anymore….cus he’s not here to take new ones. I have lots of new pictures of B and Hunter growing and getting so much bigger than a year ago…but I’ve seen every picture of Conner…I carry them engraved in my memory and forever in my heart. but he’s not getting bigger. he’s not taking new pictures. time keeps passing…we keep moving ahead…and he’s never going to. and as a mom, guys that’s devestating. that’s more difficult then I can put into words.

registering Hunter last night for Kindergarten and trying to keep reminding him that it’s Hunters Kindergarten each time he says its Conner’s. seeing some of Conners friends and how big they are now…almost done with 2nd grade…its almost too much to put into words.

he’s gone…

can I possibly keep up with all of this emotion and still function a bit normally? I don’t know. I’m trying, but I don’t know how well it’s working.

can I run this race on Sunday for our beloved hospital and make it thru without becoming overwhelmed with emotion? can I possibly Outrun CF the next Sunday with some of my best girlfriends…can I walk for Great Strides towards a cure for the very disease that is causing me so much pain? Can I Rock and Roll my way to the finish line of a half marathon coming up in June that takes place the very day after my sons “death-a-versary?” can I ….

I just don’t know.

because anymore…I can barely make it thru a day without tears and pain. living in the full knowledge and understanding that Conner’s time was done here, but mines NOT… for whatever reasons God has planned and in store for me, I’m still here…barely breathing…but here. and all this pain has a purpose and is part of this plan. but man on days like today I just don’t know how much more I can take…

I just don’t know…

chefs dinner, last year I had a reason to still smile…

LOVE LOVE LOVE

You are…

2011-02-24T20:58:00.001-08:00

I’ve been trying hard all day to not write.

to just get thru it, over it and go to bed and wake up to tomorrow.

I almost made it.

I don’t know how to say the feelings that have been going thru my mind all day. I’m sure they will sound bitter, or sad, or well, who knows really. there was amazing news announced yesterday about CF. I’ll spare the fancy scientific details, but the trial showed marked improvement in lung function, ability to breathe and making the sweat-chloride levels of those with CF taking this drug, appear normal…like they didn’t have CF. that is the very lei-mans description of it. it’s truly more complex than that. one amazing Cyster taking part in the drug even said that it was the first time she’s been able to take in a deep breath since decades before.

that is amazing.

the CF community is so excited. this is HUGE news! a giant leap in the right direction. it doesn’t cure CF, nor does it work with every mutation that causes CF, but the science there is truly remarkable.

being a part of the large CF population online, whether that be blogs or facebook I get to keep in the loop of how everyone (or their kiddos) are doing. I love that even though we’re spread apart across the miles that it’s like they’re right here in my living room with me as I read their status or blog postings to check in.

it also throws a lot of the bad CF back in my face. the regret.

it reminds me how I’m no longer a CF mom. A mom, yes, but a CF mom…no. My two living sons are perfectly healthy, thank God for that. It’s a true blessing. But for 7 full years I was a CF mom…and here’s where this blog truly begins…

CF moms…CF dads…even young adults with CF…

it is so critically important to not identify yourself as only a CF parent. or a person with CF. I know exactly what you all are going thru with the constant worry, IV”s, horrendous medication schedule, school IEP issues, ports, g-tubes, insurance denials…all of it. I know how we become germ-a-phobes and delicately find the balance between keeping things clean and disinfected and putting our child in a bubble. I know. I get it. I used to go out too, and read, or walk, or volunteer or whatever…thought my life was balanced.

it was no where near balanced.

cus I was volunteering only with CF specific tasks and groups, to help find a cure…which is so important, please don’t misunderstand. I constantly worried over germs and Conner getting sick or whatever, CF took over my life. There are parts of CF that need that kind of extreme attention…but not all of it.

I’m on the other side now and the hardest pill for me to swallow is how much of my time I wasted over CF. How I’d obsess over colds and stuff and skip out on some activities that were probably more than OK to participate in. How now after losing Conner, I can see exactly how much my life was consumed and controlled by CF. and how now…I have no real clue who I am. the me without CF. the me, that I never gave a chance to live and figure out on my own, until I was forced to.

see…I’m so happy to see such advancements being made in CF…and I know just like you do as well, that CF will be cured in the near future, in our lifetime. And that is important, and deserves celebration.

but don’t miss out on today, waiting for tomorrows miracle.

because TODAY is a miracle too!

each lung infection although it’s horrible…there really is purpose behind it. I know that sounds strange trust me…but I have the “gift” of hindsight now. each time I ran thru the house frantically packing our things to be admitted because Conner couldn’t breathe, all I thought about was how scared I was, and the anxiety filled me from head to toe. but now…looking back…while it still plays in my mind and I can see myself running across the house, calling people in a panic to come grab the other kiddos…I actually got a picture of a look that was on Conners face watching me do this.

I was scaring the be-jesus out of him. I was letting CF take over me. My stress. My worry. My panic. I was allowing CF to turn me into this panicked mom that I wasn’t. life was trying to tell me to slow down, to breathe…to stop panicking…to not let CF change who I was. but I didn’t listen. I thought I was doing the right thing. protecting him. helping him.

I’d get frustrated so often how long meds took. I used to dread the morning routine. how some families take for granted that they simply can get up and be out the door in 10 minutes. but not us. it was at least an hour to get all the enzymes, vest, IV’s, breathing treatments and inhalers done. just to start the day. then I had to pack his boost and more enzymes (always the enzymes!!) and inhalers and a change of clothes incase his stomach failed to digest yet again, and bolus extentions to do a feeding if he couldn’t eat, and then oxygen tanks etc. it was all consuming just to get out of the house. and now I can only dream of doing that again. I’d do it with a smile if I had the opportunity. I wouldn’t let CF cause me panic or frustration again.

I never knew it…but I WAS MORE THAN CF…

and I bet you never realized that you too, are more than CF. it’s important to take the disease seriously and get the treatments done that need to be, I’m not discounting any of that…or even volunteering for a CF event…all of it has it’s place…but what little life we are given…we are cheating ourselves if we don’t realize that CF will take over everything if you let it. It doesn’t wait for your permission to kill and destroy your life it just does it…and we don’t know any different. but CF life demands balance. Fully intentional balance. it won’t just happen. you have to make it happen. it’s easy to see others CF postings, of the bad day they’re having and then easily join that panicked state of mind…but I challenge you to be more aware of just what CF will take from you each day.

CF doesn’t just cause inflammation, tissue damage, and frequent infections. CF causes panic attacks, anxiety, doubt, fear, deceitfulness, unworthiness, stress, worry, fatigue, and unbalance. Stress is the root of so many health problems…and stress comes along with CF. But I challenge you to find an outlet. an UN-CF outlet. start to define YOURSELF. not you with CF. but the YOU without CF. Find friends that don’t know about CF that you can simply be normal with, you can talk a bit about CF because it does affect your life, but it shouldn’t ever determine it or dominate it.

Because now…being on that other side…that is one of the hardest things to find again…is me.

the me without CF.

and if I had the chance to do it over again, for sure I’d know who I was, and focus on finding many, MANY non-CF things to help define me. I don’t get that chance…my CF life is over now…but YOU DO. take care of the business of CF, celebrate in the advancements of the CF Foundation, and find good community with CF peers, it truly is an important part of CF life…but be so much more than that.

show CF clear boundaries. Show your loved one with CF that the disease doesn’t cause you to change who you are and cause you to be an anxious, fear driven parent. But that you are so much more than CF…because YOU ARE!!!

LOVE LOVE LOVE

Well I did it!

2011-02-21T12:12:00.001-08:00

After a lot of tears, I was able to register Conner’s Angels team to this years Great Strides walk for Cystic Fibrosis. I ask that you take a moment to donate (any amount it all adds up!), forward to all your contacts, join our team, or even create a Conner’s Angels team where you live. Let his legacy of LOVE shine on..

Love Love Love

http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7136&idUser=134723

I’m simply trying…

2011-02-17T08:56:00.001-08:00

He’s been gone nearly 8 months already.

it’s shocking how fast it’s gone, yet how it feels like it’s been forever since I’ve seen him.

I’m surprised how long its taken me to accept that so much of my life has or is in the process of changing. I have to roll with it all or it’ll roll right over me. I’m still shocked by how many days I am paralyzed in grief. seeing his face in pictures or even saying his name how it fills my heart with pain. and how some days it’s the exact opposite. it’s crazy how different I look, feel, and act than I did 8 months ago. how different my priorities are. but the pain…that hasn’t changed.

in the beginning, after the shock wore off the pain was intense and crippling all day long and my only escape was when I was sleeping. and now I still have those days of intense grief, probably two days a week, but I’ve learned to roll with it. it’s become the new “normal”, and between those days of intensity there is a constant underlying sadness that fills my heart, it’s always there. I’ve had to take a step back from CF. I’ve had to start being around people who don’t speak CF speak all day long. because it’s a huge trigger right now. I’m still staying up to date with those that I love, and yes naturally talking about CF is a natural part of the discussion….but I can’t just engage in CF conversation for no reason. Because I miss it. I haven’t mixed or prepared one CF nebulizer or treatment in 8 months. I haven’t heard the humming of the 02 concentrater, or hooked IV’s up, or held Conners hand while he was getting “pokies”…that life is dead to me, and it represents the loss of conner. and it’s hard to take.

I’m able to find so much happiness and love in the normal life that so many take for granted. I have two beautiful, healthy, vibrant children. there lives don’t revolve around clinic visits, medications and a constant struggle to breathe. how blessed are they? how blessed are we? Yet, this is a life that I’m not able to really grow accustomed to. I was created for more. I lived and breathed the fight for 7 years and my spirit is missing that determination. being a mom to two healthy children is a harsh, drastic change. how easy life is now in that respect. I love that my kids are healthy, don’t misunderstand, it’s just so amazingly different than life with a very sick little one. if my purpose revolved around fighting for Conner, and now he’s gone…I have to now look for my new purpose…my new fight.

Which is my family’s freedom.

we’d been forced into a life of income restrictions, limits, that was run by constant money issues. too much money in, and we risked losing Conners insurance. yet his illness was the reason for our penalties. which isn’t fair. we had to play that game for 7 years and now we determine our income. theres no limits placed on our lives any longer. we can truly reach for the stars and our highest potential and nobody is keeping track. in that respect its fantastic. yet in the back of my mind it represents a new life, moving forward, without conner…Im stuck wondering which is better? I know Conners up living the most amazing life imaginable, free of bondage and medications and constant restrictions, and he’s passing blessing onto our family…I just wish I could hug him again. I’m impatient.

the greatest growth stems from the greatest pain, and I’ve grown so much already that I simply cant fathom what else God has in store for our family. I have learned that there are many toxic things in this world and to get as far away from it all as possible. it can be jobs, people, relationships, situations, you name it. it is life draining. learning that gave me freedom. I’ve learned the definition of a true friend. and sometimes it comes from the least expected place you can imagine. so pay attention to those acquaintences that seem to pop in and out of your life just when you need them to, in a pinch you’d be surprised how much they rise to the occasion WITH and FOR you, where some you consider the closest to you draw FURTHER away. watching for those people who love me in the midst of all of this has brought me freedom.

it’s just hard to believe it’s been almost 8 months since that day he left us. we’re nearing what would be his 8th birthday in a few months and its just devestating to think back to where we were last year, how much we did for his 7th and final birthday on earth, and now how I’d give anything to throw him an 8th birthday. I’m trying so hard to be the best mother I can for these beautiful boys god has left in my care, and I can only hope that they see more smiles than tears, more laughter than sadness and more joy than sorrow. all I know is I’m trying…desperately…I’m trying.

Love Love Love

Me, just being…well…me

2011-01-30T23:40:00.001-08:00

I don’t waste anytime lying. What’s the point in that? So I will just spew about what I’ve been feeling lately. it’s overshadowed many of my days, a very intense, strain of complex emotions delicately intertwined with real life, gotta get up and get moving moments. it’s been beyond difficult. it’s taken nothing less than 100,ooo% FAITH. because faith is believing in what is unseen…and all I know anymore is that without FAITH, my son died in vain. His life, his struggle, his mission, his death, all of it would have been pointless. for nothing. So faith is not an option for me, but a necessity. a requirement. everything thrown my way each day I look at it and decipher my best judgement on it all, looking thru heavenly glasses, not ones based on this temporary life.

faith…

ah…didn’t George Michael have it SO RIGHT? “cus ya gotta have faith, faith, faith…!”

anyway…

its been horribly difficult. living in the emotion. life continues to go by, there is smiles on my family’s faces, we’re somehow managing. here’s how I think. it’s not at ALL that the pain has lessoned a teeny bit, but more that we’ve learned how to manage this life. People’s lives have gone forward. we’re at a standstill. we’re not ready to move from the anger, sadness and despair of losing our Conner, but in the “realness” of life we’ve moved forward. Hunters grown taller, he’s getting smarter, and each day he’s one day closer to going to Kindergarten and he’s beyond thrilled to get to go to Conner’s big school! Baby B, has had two haircuts and those beautiful curls come back, a bit more subtely but there none the less, he’s getting taller, he’s moved up two clothing sizes since losing his brother. He’s getting bigger and smarter. Brad gets out of bed each day and goes to work for our family. He extends himself to others to be there for them, and he continues to build new or deeper friendships. I’ve grown in humanly ways as well, but all in the temporary state. See, none of this really matters compared to heaven. we’ve learned to numb ourselves a bit to allow for some of these worldly changes. but our hearts are still so torn apart.

my mind works in reverse these days. constantly wandering back to this date and that date. usually always to where we were a year a go. because that’s all I got left of Conner now. memories. those precious moments that I will never get back. it is a very hard pill to swallow to know that Conner’s mission was never to make it to 8 years old. to never go to 2nd grade. to never move to middle school. to date. to get teenage pimples and puberty. to never fall in love. this is what life is “about” to us. we believe that it’s our right to live these days of our lives like what we read in a book or see on a fake tv show. and it’s hard to keep putting trust in the FAITH that allows for a 7 year old to die, and some other person commit murder and get away with it you know? it doesn’t, nor will it ever make sense because we don’t have the privilege of seeing the big picture. but blindly following God and believing in His plan to prosper us and not to harm us, even when the plan causes tremendous pain, is nothing short of a miracle of faith. an absolute miracle. because it doesn’t make any sense at all.

Conner’s been on my mind all day long, pictures of him popping into mind, and songs coming on the radio that have special meaning to our family constantly. and each day reality hits my heart that much harder like a sledgehammer knocking out a wall leaving me breathless. HE’S GONE. his plan was never to live a long life. but a short life full of love and FAITH. and now my job is to grasp that concept, live in it, accept it and to make the most of the mess it’s created.

I have some amazing days. where I feel great, and loved and confident in who I am, and where God’s leading me. and then I have so many days where it’s so overwhelming. there’s a huge difference in being overwhelmed and giving up, so let me be clear. I never have nor will I ever give up. it’s not an option. I rest my pain in the victory that has already been awarded to us. There isnt one person, thing, or tragedy that could separate me from God’s love and getting to Heaven to be reunited with Conner.

Yet, faith comes at a cost.

it costs you everything.

everything.

its being unwavered in your FAITH if Gods plan involves losing your son. It’s saying YES to so many hard circumstances. It’s not being ashamed to say that the plan of your life sucks at times, but that doesn’t mean you doubt HIS love. This life is all about pain and suffering. there are moments of sure bliss and times when you feel your on top of the world and full of worldly satisfaction…but it’s about knowing what to do when the pain comes. cus it does. it always does. its that tiny choice of whether or not to let out a curse when you hit your finger with a hammer…all the way to the most important choice of whether or not you have FAITH to stay the course and accept this world for what it is.

TEMPORARY.

Resting your faith in what is yet to be seen is so much more difficult than it sounds…but so much more profound than anyone of us can ever imagine.

Even knowing the truth of my future…the pain of today is still heartwrenching. Yes I know I will get to Conner oneday…not soon enough it seems, but in the meantime I have to accept that Gods not finished with me yet. Conner fulfilled his duties…he gets to sit by God and Angels and breathe with the most gorgeous lungs any of us can ever fathom, because he did his job well. but He’s not finished with my plan yet. My plan was always to outlive my firstborn child. To continue to raise two beautiful blessings with a husband who adores us all and to keep our heads afloat…always waiting with anticipation our next step. But even knowing that, and not just knowing it, but BELIEVING it doesn’t make it hurt one ounce less. I’d give anything to be back a year ago with our family of living 5…well 6 counting Grover dog…loving each other, making the most of each second. recognizing our blessings in each and every fraction of a second. Just LOVING and getting to hold him. Instead of now going back and forth over finalizing Conners headstone. and seeing the kids walk past our home each afternoon from school…knowing Conner should be there too. The pain will just never cease. and anytime I think we’ve made it a step forward…we truly have taken two giant leaps backwards.

there is purpose in pain.

that I know for sure.

but living in it…I also realize that just knowing my future in heaven doesn’t make the pain of today any less…it just makes me want to get to tomorrow even quicker…

Love Love Love

an award?

2011-01-20T21:26:00.001-08:00

RegisteredNurse.org

Just wanted to send a HUGE shout out and thanks for reading and keeping up with the Joneses. In Conners honor, i thank you ...

Love Love Love

2011-01-20T21:25:00.000-08:00

The making of a wish…

2011-01-16T21:32:00.001-08:00

Aloha…I feel I should say. today marks exactly a year since we flew into Hawaii’s Big Island for a week of everything Conner’s wishful heart desired. I can’t believe it’s been so long already. today brings me a lot of grief, seeing these pictures and remembering the emotions of that day. we left the hospital only two days before this pictures, unknowing if Conner would be ok to do this trip. I had many hard discussions with the CF doc and the Make a Wish staff, and it came down to 2 things. Doc said if there ever was a chance for Conner to go, it’d have to be then and the make a wish folks assured me that if he did happen to pass while in Hawaii, that it would all be taken care of. as much fun as and great memories we all have of that week, I intimately remember the constant fear I felt. watching Brad drag Conner’s o2 around, and someone constantly carrying Conner from place to place, his body was so weak and tired. I remember praying he’d make it home and this wouldn’t be it, and I still thank God everyday that we indeed get another few months with our son. the trip reenergized Conner, infact he stayed well for about 3 weeks after this trip, which was HUGE for him at this point in his disease progression. and when I look at this photo it tears me up to remember just how fast things faded after this. valentines to st patricks, birthday celebrations to a beach trip, to field day to his death. like the blink of an eye.

true grief is what this picture represents right now. because of the snowball that started with this photo. today I feel weak. I think that these past months have nothing in compare to what these next few months will be for me. his friends are turning 8, and he never will. it’s hard to accept that his work on earth was done so soon, and now we have to make the best of what work we have left to accomplish until the Lord says “well done” to us as well. I feel so much joy some days, life goes well, the kids make me smile and I laugh more than I cry…but I’m walking around with the largest lump in my throat. constantly on the verge of tears. I just can’t believe he’s really gone, nor can I believe how much life has changed these past 6 months. I look at this photo and remember some of the people I had in my life at that time that I thought were so much different than they turned out to be, and I remember all the people just acquaintances that have since stepped into a bigger role in my life that I am truly grateful for. so to me, this picture represents pain, and hope, tears and joy, laughter and sadness. so many different emotions, and it’s nearly impossible to give them all a voice.

I feel I’ve come so far some days, and others I feel like he just flew away yesterday. the emotions are on the very ending of my nerves at the tip of my fingers and on the top of my brain crowding every thought all the time without fail.

I miss him so much.

so much it paralyzes me in pain.

I don’t write for sympathy, so don’t feel you need to give any, I write to release it all. to give grievers validation. to cause awareness of just what CF has taken from me. From us all. A person dies each and every single day from that horrible disease, leaving crippled, paralyzed parents in it’s wake. and it’s more than I can bare most days. some days I feel lucky to have the truth behind what life is all really about. I’m thankful that I can separate the realness of this world and the details and drama that many may never get past. I’ve forged a genuine relationship with God that many may never get to and just settle for the fake, “safe” relationship where it’s all give, wants, demands and take, never thanks, and fully relying nor praising. so in many ways I do feel blessed by all that’s happened. and I give thanks that Conner is smiling and can breathe and visits me so often in my dreams and during each day. but I long to hold him. I get to hug hunter, B and brad all that I desire, but never again Conner…not until heaven. and my earthly body is impatient, torn apart and unaccepting of that restriction. there’s not one thing I can do to change that. forever he is dead to this earth. forever. I know the truth and the glory that one day I will be reunited with him and with God and feel love and the hugs and kisses that I’ve been waiting sooo long to do, but it seems a million years away from now. I remain obedient in my tasks that God has laid before me, and I keep my eyes directly on that end prize…the glory that we all deserve and have a right to attain…but…but… god designed us as humans. impatient, ungrateful, selfish, demanding, busy people who want instant gratification…I wish so much for peace from it all. I read back to a few of the posts just days before Conners flight to heaven and I just cry…I had no idea then the pain his death would cause, I thought I could imagine my life without him in it…but truly…I had no clue. I gave birth to that beautiful 7pound 12 ounce beauty and fought and loved him and enjoyed him and raised him and hugged him while he cried and held his hands as we prayed, and it’s done now. it’s been done for nearly 7 months and I’m still fighting that reality each day…every minute and almost each second I’m awake. I’ve met so many amazing people since he left and I can only explain to them how wonderful he was, what a joy he was, how sensitive and compassionate he was, how brave he was, how he made me a mom… but they will never know it in anymore depth than my words. the initial grief has worn off…the grief that is numbing and a little more surface and disbelieving. real grief has sunk in, and it is so hard to walk with. to breathe with. to feel with. it’s a very consious effort to find a smile or a ray of sunlight and love thru it. it penetrates deep into every cell in my body. my entire existance and soul screaming that it’s too much to bear alone! I can see why so many give up here. why some never step forward to try to navigate thru it. I see it because I too feel it. the world has moved on, and it’s just you and God. just the way God wants it to be for all of us. I wake up each day and say goodmorning to Him and I ask for him to make my feet light, and my soul at peace…and I pray for clear direction and for him to stick to me like a fly on fly paper. I can’t do it alone.

I just miss him so much….so…so much.

Love Love Love

Just one short year ago…

2011-01-06T15:09:00.001-08:00

We were sitting in the hospital…on day two of what would become a very long admit in preparation for his Make a Wish trip…we were playing with the DSi on loan to him and having fun…oh I miss him so much

I miss the person I used to be…I felt a year ago like life was great, complete. Now I’ll never be complete again this side of Heaven. Ever. Theres a huge gaping hole that can’t ever be filled or patched up. I miss the loneliness of the hospital…the sterile air and the sitting around watching the clock tick away. I miss the grind of it all, knowing what doc was coming by, which volunteer was on call, the nurses shift schedules, even the food in the cafeteria. I knew it all…how pointless now. I miss dialing the number to the CF clinic, I miss strategizing with them over what to do next. I miss the fight terribly. I see pictures now of Conner and my heart just breaks, and I have to calm myself.

He’s gone, truly gone.

I truly don’t understand how it can all be over so quickly. like the blink of an eye.

his death redefined my life in so many ways that I am both grateful and hateful for. I truly LOVE the “me” that I am now on the inside out. I’m more sensitive, secure, loving, compassionate, understanding, strong, faithful, prayerful, and more aware of the minute to minute details many will never see nor understand the importance of. I understand the meaning of this life now more than before. I’m no longer afraid of death…I’m in no way ready to be done on earth yet, but with all my heart I know that when it’s my time I won’t have one tinge of fear or any second guesses. no regrets. no coulda-woulda-shoulda’s. I live life…really LIVE it. and somedays it’s living for me to simply get Hunter to school and come home and clean up and put my feet up a bit and just sit in the silence and dwell in the house of the Lord. Just rest in his peace and grace. So many questions, not enough answers, and all the time in the world to simply wonder. I’m re-evaluating who I have been as a mom and who I am now and am working toward. hunter is challenging me every step of the way, both in good ways and not so good ways. but in it, I’m learning the importance of it all. life. love. relationships.

I’ve met new people who have become dear to me and my family…and I’m learning to stretch my wings a bit. I just can’t get past the first lesson of it all, that just sounds so cliché but I know it to be true thru and thru…tomorrow’s not guaranteed. Conner is proof of that. one day doing ok the next day in and out of a coma taking his last breaths of this earth.

the new struggles are difficult. they are character forming that is for sure. having to really trust in God like never before having been let down so terribly since this time last year…not just praying as a chore but as a conversation. living the best way I know how and trusting God in the details. learning to live with my heart on my sleeve like never before and trying to find ways to tear the walls down that have been built so high and up for so long…learning to trust after being burned. learning to reach out instead of being isolated and lonely. learning to find balance and structure, empathy, and love thru it all.

being thankful.

living in the pain.

accepting the pain may lessen a bit but will never fully be gone…learning to live in it and to function in it. no simple task.

grateful that many Thursdays come without the sting they once carried…the pain still there…but the dread lessening over time…yet knowing that it too will come and go…last Thursday was fine, today…Thursday I am broken hearted.

learning to hear people for what they MEAN and not what they SAY…two very different things…a lesson learned over time.

a year ago we were sitting in hotel de-Doernbecher Childrens Hospital to have IV’s to get Conner ready to travel to Hawaii…for his one heartfelt wish. and now a year later…all I can do is miss him and wish to hold him once more…

Love Love Love

a broken heart…

2010-12-27T11:55:00.001-08:00

I cant believe it’s been a year since I wrote about looking back on the previous year! How could a year have flown by so quickly? It seems just a month ago I sat down to write what I learned in 2009 and how I felt that it was the worst year of my life. watching conner get worse each day. needing more and more iv’s just to stay alive. watching him fight for breath when most people do it w/o even thinking of it, myself included. how can it be a year ago already?

here’s what I know for sure…

is my heart hurts more each day…I don’t know why, I would’ve thought that by now, 6 months after he’s gone, that maybe there would be even a tiny bit of healing. but there isn’t. I cry more each day then the one before it. my heart is numb. my head is confused. I’m nausiated. all symptoms of grief for sure. I think it’s never going to be easier to handle. I can imagine the day where I wake up and it doesn’t hurt so much as a day that is a true miracle. a miracle. now, 6 months later I know exactly what I’ve lost, where before, I knew I couldn’t see him or hold him…but not the magnitude of the loss. now I know it fully. and it hurts intensely. Its almost like he’s died again. it hurts that much. I’m acutely aware of all the extra time on my hands…without the 30 or so therapies and medications each day…it’s gone. a thing of the past. I fill that time loving on my two living children…and enjoying their love and happiness. they bring me so much joy and hope for the future. I’m so thankful to God that I have two living children to keep my head above water. I find myself jealous of others sitting in that dreaded, sterile hospital room with their kiddo. I wish it were me and conner again. even for a moment. I spent the other night with friends and hunter watching old videos of Conner growing up…we laughed together and I just listened to his voice. I miss that so much. it’s so hard to explain it…I’m used to hearing it in the background of each day like white noise…the constant squabbling of kids…of his voice, complaining about Hunter changing the channel from Zach and Cody or something trivial like stealing a milk cup. I just grew so used to that. how I’d shush it a lot. I was tired of the constant bickering. but now…oh how now I can only DREAM of hearing such squabbles again. I miss it. I find joy in it when I’m with other peoples children…it reminds me of how my life was complete once…not too long ago. 3 living children…one crying needing a new diaper, one veying for some sort of attention, the other hooked up to a VEST treatment with an iv going and a neb cup hanging out of his mouth, still able to watch his favorite Tom and Jerry cartoon. the house full of the sound of love. even in the bickering it was always about love. I miss that. theres a HUGE voice missing in the everyday squabble. Baby B and Hunter are loud, don’t misunderstand, but Conner was a very loud part of the Jones house of 5. a very important piece to the puzzle. and now he’s hardly mentioned by anyone. like he never existed. which intensifies my pain a huge amount over. he was alive. he was here. he brought our entire family and all of his friends joy and laughter, and hope…and taught us the important parts of life and to forget the details…he was real. I held him, I cried with him, I fought with him, I brought him into this world and I was there when he left it. and I miss him so terribly. so much more than any other time these past 6 months. because now I feel the full weight of my loss. I feel it all 100% more than ever before. he’s gone. I will never see him on this earth again. I have no say and no clue when I will get to see him again. I have to be ok with him being gone. but I’m not. whats the craziest thing to me is that in today’s world we talk about so many things that the previous generations never did. people sing and talk openly about sex, drugs, gay or straight, whatever it is…but nobody’s willing to talk about a child dying. still. and it happens everyday, and has since the beginning of time. maybe it’s because this day in age it’s not supposed to happen. we have vaccinnes and chemo, and medications, and surgeons who we deem as God, so to our children, it’s impossible for them to die….we think. but that’s not the case. it still happens each and every minute a child dies. and the silence that follows is deafening. some people can’t handle the pain of deaths aftermath and walk away…some people just pretend it never happened or that he never existed. its just horrible. how can we as a society be ok with watching shows on teenage pregnancy, glorifying it to the highest measure, or watching some spoiled real housewife of somewhere or another, or a vampire diary about racy sex scenes that make everyone in their right mind blush…but ignore those in REAL pain? I can only imagine how many people we each walk by everyday that are silently dyeing inside. who are facing a loss so intimate that they cant even find the words to explain it. their child is dead. and nobody cares the way they do. nobody wants to talk about it past maybe month 2. its done. its too heavy or too painful to talk about for others, so we have to become silent grievers. trying to bear the full weight of our loss, alone. thank GOD for GOD!!!!! He’s the only one whose never left our side. Just imagine the load you can carry for someone hurting. myself included. I try to walk beyond my own pain to reach out to others hurting, making my pain hurt a bit less for awhile each day. it doesn’t always happen, sure, but I try. that’s more than many of you all can say. is it right to read about someones life defining, and altering loss yet never reach out to them physically? to see the pain someone is in, yet turn our backs to them like it doesn’t exist? is it ok to fill our time watching fake drama and pain on tv for ENJOYMENT? when we know someone in the REAL world who is struggeling to cope, praying only for someone to listen, and yet do nothing for them? is it ok to watch and promote teenage girls having babies, throwing them on some unbelievable tv show and on the cover of magazines like it’s ok, when someone in a committed, loving relationship, just lost their angel and nobody cares for them? nobody reaches out to them? what I’m finding more and more by meeting so many parents who have lost a child…some losing their child a decade or more ago, the pain of the childs death is still so fresh…and the pain that hurts the most all those years later is the pain of nobody reaching out and caring. just being there. calling to just talk about the weather. a simple gesture of dropping of a coffee or tea, or a meal or stopping by just to hug them. but it for some reason doesn’t seem to happen that way. the biggest pain of all is the pain of silence. and I hear it loud and clear. I hardly hear Conners name anymore. I fake this stupid smile on my face cus others can’t take the reality of the pain. if they had a reality show on losing a child it’d be off the air in a day. its too heavy. too real. theres no entertainment value in it. but sex, drugs and rock and roll…sure lets feel good watching that instead while our neighbor suffers.

think about that. and not just about me. you’d be staggered to learn just how many people you pass each day have lost a child…by stillbirth, miscarraige or death. and they are forced to suffer in silence because death is hard to talk about. what a tragedy that is. I can’t imagine anything worse…walking away from a neighbor in their hour of greatest need because we selfishly can’t handle it. Jesus himself wept over such pain and cruelness. there are people in my life whove since Conner passed have confided in me having lost a child in many ways unimaginable. and I was shocked. these are people who look just like you and I, smiling on the outside…but dyeing on the inside because nobody will listen. just listen. they need to give their baby their “15 minutes of fame”, they were a living, breathing part of this world…and nobody cares. how heartbreaking is that? more people you see each day, then not are walking wounded. alone in their despair. just wishing and praying for an opportunity to speak of the loved one they lost and miss so much. do you know someone like that? I do. I know at least 5 moms walking in such great pain with a smile on the outside because that’s easier for others to handle.

reach out to them today. tomorrow. the next day. the following one too…keep loving them. because theres only one thing I can imagine worse then losing a child and the great pain that causes and the shift in life and hole it creates in everyday and everything…

it’s dyeing of a broken heart and nobody willing to care…

Q&A with Mr. Josh Mogren: The TRUTH behind the Not so Bright & Shinyness

2010-12-16T22:47:00.001-08:00

I’ve been looking for a way to do this for sometime now. I just didn’t now how, what or fully the Why. I try my hardest to be as transparent as I possibly can. But the truth of it all is, I did name the blog “Not so bright and shiny” not “happy happy joy joy”. so yes. I am glad to do this q & a and I truly hope it helps people understand it all.. Thank you Josh. Your friendship was so meaningful to Conner, you two have a love for those furry guys that not many others share. That is what drew him to you, and knowing you and meeting you this past summer with your wonderful wife, I can say that our LOVE for you (and your wifey) is what keeps us drawn to you.

From the bottom of my heart, thank you my friend.

( I will post my answers in RED of course!)

Hello Readers of "Not so bright and shiny" - an intimate look at one families journey through a double whammy diagnosis of Prune Belly Syndrome and Cystic Fibrosis.
This blog is filled with small moments of joyful light that breakthrough the thick clouds of sadness, pain, and ultimately the passing of their eldest son, Conner. These moments are shared through the eyes of Sarah - a brutally honest and loving mother who now uses this journal as a place to grieve and a place to educate people about the realities of two very serious illnesses.
The Jones Family and I met via my puppet, Moganko, who Conner adored and communicated with via videos and silly notes. Moganko gave Conner joy because - next to Grover - he was a confidant that understood his life. I am proud to say I've built a strong friendship with this family. I am astounded by their poise and, like so many, inspired by their will to live. Yet, something troubles me...
In the blogging world, people tend to think of the writers as one dimensional. That the way they write or the theme of their blog gives the impression that those words represent every minute of their life. I'm as guilty as anyone else of this. When I read things about public figures, I tend to imagine the words on the page as their final thought on the matter. Sometimes that is the case. In this instance, however,...with this family, it's different. Yes, what Sarah writes is real. Her heartache for herself and her family, particularly her sons, is very real. But it is not all that encapsulates their lives.
A few weeks ago Sarah and I discussed a Q & A blog post for her to provide explanation and answers to many of the thousands of questions she's received. She wanted people to understand that this sadness is one side of her life right now. A HUGE SIDE...but just one side. I declined at first because I didn't think it necessary for her to justify who she was to anyone. She knows who she is and so do the people who support her without fail. No one else needs the info. But then, when I go to her blog and read her posts and I continually see these heartfelt pleas for her and her family from concerned readers.
"Are they getting all the help they need?"
"Is she seeking help herself?"
I bet there are some people out there who have even thought (but never chose to write it):
"Geez, Sarah...time to get over it. You have two other children and a husband who need you. Suck it up and move on."
You know why I know this last one is true? Because I had a sister pass away from CF 17 years ago and occasionally, I still get that comment from people.
So I changed my mind. I've decided that if Sarah wants to let people know more and she is asking for my help, then damn it, I am here to help because that is what a good friend does. So......here are my questions for the "Mama Bear":

Dear Sarah:
Your posts are very emotional and somewhat distressing for your readers to read sometimes, you know. When you write your blog posts, is that how you feel every single day? Are you getting help with your grieving besides writing this blog? Wonderful question. I have spoken a couple times and even drew that fantastic diagram about how grief changes almost instantaneously. Your up one second, then the blink of an eye your way down, there are constant reminders of the loss that compounds the grief even farther. Most of the time it catches you off guard. Example. Today I spent the day with Hunter at his school with him. At his outdoor play time, I was running with him and SMACK!!! A child was wearing the same EXACT pj’s that Conner passed away in. it took my breath away. It is unpredictable, and the reason I started this blog was to get it all out. We had/have a caringbridge site for Conner, but I just didn’t feel I could tell my full emotions on it. I used it as a place for family and friends to stay up to date with all his medical stuff. I write in this blog on days and in moments where I’m kinda about to explode emotionally. Some people may handle their grief by running, or alcohol, or not getting out of bed, I chose to write.

As well as that, our family has been in counseling for nearly a year, each week, some occasions more than once a week. I am a HUGE reader so I have a libraries collection of books on grief, and we also are part of The Dougy Center childs bereavement program that is biweekly. I feel at this time that is adequate.

Are you able to be there for your husband and children? You seem so heartbroken and grief-stricken by Conner's death...how are you able to function for them? For yourself? Make NO mistake, my heart is shattered. Nobody whose ever or will ever lose a child will walk away from it unscathed. It changes perspective, beliefs, and leaves a HUGE hole that will never be fixed or filled. Yet from day one I’ve been keenly aware that my other two boys and my husband need me more than ever. People who are in the trenches of this with me will attest, from day one I’ve been doing many things without help. I realize the importance of receiving help from loved ones, and I also appreciate and value my own ability to remain a very functional part of the Jones house. So not functioning, has never, nor will ever be an option. Family first. Our house is filled with the sounds of laughter, and there is a lot of hugging, snuggling, kissing and words of appreciation shared. We know the value of making each moment count.
Can you talk about Conner? Do you like to talk about Conner? Should I ask you "How are you doing?" anymore? Sometimes we don't know what to say to you. We just want you to be okay and we have no idea how to help that happen. Our family talks of Conner as if he’s just in the other room. He’s still a very real and important part of our days. He’s not here visibly, but conversationally we talk of him all day long. I love when people say his name, I don’t want his name to ever represent sadness, he was a wonderfully happy child full of love and life, and that’s how he will remain to us forever. I’ve never been a big fan of “how are you doing” it’s pretty general, truly. Even long before Conners death I kinda felt it was a question posed out of necessity, to get that punch on your friendship card, you know? “well I asked” kinda thing. never felt it as a genuine question. But beyond that…right now whats most important is SIMPLY TO BE TALKED TO…AND NOT IGNORED…a child dyeing is taboo to say the least…but how are we supposed to ever fully move on if nobody can even talk to us about it? I’m ready for the elephant in the room to be gone. Our son died. We know that and will never forget it, trust me…so you can talk about him, just as we do…and even if a tear is shed IT’S OK, tears are full of healing…
How are Brad, Hunter, and "Baby B" doing?" Do they like to be asked about Conner? As I mentioned above we talk of Conner as if he’s still here. That’s something I’m sure may fade over time, when life changes and the kids grow past his dyeing age…but for the most part, our talk of Conner is not ONE bit about his disease…but about the real HIM. Bradyn unfortunately will kinda miss having Conner memories…he does point Conner out in pictures and includes him in his “blessings” at the dinner table each night…but that’s another reason we talk so much about Conner…we want Bradyn to know all about his older brother who loved him so much. Hunter is handling it all pretty well. He is in bereavement groups with kids his age who’ve lost a brother or sister and that helps. He talks of Conner much more now and how much he misses him, and even cries. so hes able to now put words to his intense emotions instead of physically acting on them. I’m very proud of him. Brad is the same as me…good days and bad days. there truly is no timetable on grief and it’s unacceptable to try to put one on someone.
Is there anything about you that people might be surprised to hear? Things outside of raising CF Awareness or Prune Belly Syndrome Awareness? HHhmmm…this one made me think a bit. First thing that popped into my head was that I betcha didn’t know my favorite meal on this earth would be Salt and Vinegar chips and a cold pepsi… he he he. Took me awhile to get past that cus then my mouth started watering. So I’d say one thing that people may be surprised to hear is that I feel I’ve become a much stronger person having to face all that we’ve faced this past year. I think I’ve become a person that I can look in the mirror and be proud of. That I’ve pushed past the anger that once weighed me down and realized that everyone will fail you. because we’re human. I feel I would’ve stayed the old me my entire life, satisfied, never knowing there was so much more to myself, and to life had I not been pushed to face change and learn from it. I hate so much that it had to involve losing something so precious to me…but I am so grateful and thankful now that I know what life is truly about and what it absolutely is not.
Do you ever laugh anymore? Every single day. Many times a day. I laugh far more than I cry. I’ve never been a big crier. I’m more vocally emotional, this blog is what helps me get it out. I cant just sit down and make myself cry…never have been able to. SO I write whats on my heart, and it usually leads to tears…and when I click POST I almost always feel so much relief and release. At a womens conference a few weeks back, each woman got a key that had a character trait on it…how fitting that mine said Laughter.
Is your marriage okay? THis is a very important question. We all know the statistics on marriage these days. Double that for a child whose died. It shatters your trust in everything. It robs you of security, that really you never should’ve had anyway. Life isnt guaranteed and not one thing is promised or owed to us. We see that now. I’ve heard many rumbelings about my marriage to Brad and I have to just shake my head. People never know what its like truly behind that closed front door. Nobody’s marriage is “wedded bliss” it takes work. It takes soooo much more patience and understanding for us having lost a child. when I have an up day sometimes that’s his really bad day…so we take each other with a grain of salt if we speak out in anger or impatience…we are very communicative now. we touch bases most days to see how it’s been. We respect each others need to grieve in ways that are best for each of us, men and women grieve very differently. My family has been devestated by Conners passing, I’m not about to steal away anymore of their joy…we work hard on our marriage and I can safely say that we are doing good. we’ll find the way one step at a time to navigate thru this…family is everything to each of us.
You have readers from all walks of life, but respect your strength and devotion to your beliefs. Your love and faith in God clearly grounds you, but since your son passed away does that make you question things? Is your faith still in tact? More than that, it’s grown a thousand times over. You have two choices in pain…face it with God or walk away from it, and walk away from God. You can say “woe is me, god DID that to me” or you can say “why me, and how will God deliver me thru this”. I believe that He is for us and not against us. That he has plans for hope and to prosper us and not to harm us. I believe it. I believe that all pain has purpose…not one tear of ours falls from our face in vain, nor without a price…afterall who else knows what its like to lose a son better than God himself? In saying that, I do at times question his plan for sure, or I get angry with him because the pain is so intense. but hes a big enough God to handle that, and He carries me thru it. I think God respects peoples honesty. He doesn’t want some uniform christianity. He wants authenticity and character. that’s why He created us each so individually…and knowing that I can go to him upset with the way things are right now, and he’ll love me thru it makes me lean on him and trust him even more…
Will you ever stop writing "Not so bright and shiny"? Your readers love your way with words and would certainly miss your wisdom and "love, love, love". Will there ever be a right time to walk away from this blog?

Yes I do feel that this blog is meant for a season in my life. to help me thru Conners last year on this earth and thru the grief of his passing. I never started this blog for anyone but me, infact I never gave the URL out for a long while…nor made it public for awhile as well. there is a season for all things…and this one day will end in it’s perfect timing…who knows when…I love to see how God is using this to minister to so many different people all over the world, and I’ve met some amazing people thru this outlet, many whom, like Josh, I never would’ve met otherwise, so to me it’s still a blessing…one day when life is so bright and shiny that you need sunglasses just to see me…then this too will fade away… ;)
Thank you, Sarah. On behalf of your readers, we treasure this blog, your words, and your message however long it lasts. Love, Love, Love. Always, Always, Always.
Peaceful Things and Lots of LOVE, LOVE, LOVE,
Josh

Before there were 3…

2010-12-16T11:34:00.001-08:00

He was so much more than a 7 year old boy with two rare diseases, combined in a rare way.

He was beautiful.

Loving.

Compassionate and sensitive.

He was a crack up…always good for a silly laugh that tickles you all the way down to your belly.

He was genuine and thoughtful.

He always put others before himself.

He loved his brothers with all of his heart and never liked if anyone was rude to them…except for him of course!

His smile was as sweet as I’ve ever seen before.

He had a sweet way of cheating while playing the Wii with everyone…Hunter says that’s what he misses most.

He was a very calm, happy and easy going baby.

He didn’t walk til his first birthday…

the first time he saw the gorillas at the zoo he exclaimed “DADDY!!!”

When we moved him from his crib to toddler bed he never got out of it at night…he enjoyed becoming the big brother.

he always wanted “to see baby hunter mama” and started to stay awake instead of nap when Hunter was first born.

always loved him.

always looked out for him.

he wanted to be with Hunter around the clock…they were best buddies

He loved to help around the house.

he adored his dad.

he wanted to be just like him…

He showed love and respect to adults, nurses and doctors.

he was extremely tickilish.

he loved school…and his brother Hunter hated to be away from him for those 3 long hours…

because they shared such a close, unique relationship from day one…

they were more than brothers, more than best friends…they truly are kindred spirits

a very close bond that’s hard to put words to but you can see it in pictures

I can see why Hunter is so stricken with grief. He feels the loss to his core.

His best friend has been stolen away far too soon. a 5 year old doesn’t get they “why”, heck I’m not even sure that I do.

Hunter balled himself to sleep the other night between Brad and I…that was heartbreaking…but I’m glad he’s getting some emotion out.

I was gonna talk more about Conner in this post…but I’m just so stricken by the relationship between Hunter and Conner that I will let that be the focus.

Oh Hunter dear,
I am so sorry for YOUR loss…

Love Love Love

Get in where you fit in…

2010-12-08T23:08:00.001-08:00

But what if you don’t know where you fit in???

Life has been “off” lately. Part of me wants to just shut my door to the world, turn off the phones, unplug the computer and just hibernate. Another part of me knows the importance of getting out of the house, into fresh air and to not be alone. And yet, another part of me wonders when this life of “newness” will feel old…and maybe not so fresh and new. My family is what keeps me going. My 3 boys (Brad included) keep life a little normal, and there’s a lot of love in our home. But I’m just tired of things being so different. I’m starting to do things now, new things that Conners not a part of physically, and it just feels like he should be you know? and doing all of the holiday decorating, and even picking out the christmas tree, that was difficult to do without him there.

things are evolving now…

and so some things have got to change…

it’s too hard to feel like we have to keep doing the things we’ve always done and try to fake our way thru it. Why? so others don’t see the obvious pain? that’s not being fair to us in our pain. so slowly, but surely we’re going to have to find our new way of comfortable living. doing only what we can physically and emotionally handle. nothing more. it’s so difficult to do. we’re creatures of habit and tradition…and I don’t know about you, but I haven’t gone and changed many traditions around in my lifetime. I cherished them. I still do. but losing him made me realize that the people that matter the most live in my home with me. those are who I live for. those are who I love most, and matter most to me. I feel I always knew that but maybe it’s just that you really don’t get it…you can’t appreciate it until something’s been broken that can’t be fixed. and our family has been shattered by losing Conner. Shattered beyond recognition. nothings the same. not one thing. so from that perspective it’s so easy to see now how easy it’s been to get swept away in tradition, especially this time of year.

I must say how much I LOVE the Dougy Center. I knew immediately how important their childrens’ bereavement program would be for Hunter, and Bradyn when he’s a year older…but I never put much weight on the parent aspect of it all.

it is fantastic and invaluable.

it is smack you in the face reality, and love, and tears, and unspoken understandings and laughter.

it is help with difficult circumstances and advise from people who’ve walked in your shoes.

even in the best of friendships there’s a void of understanding when it comes to the loss of a child. it’s a very difficult situation to maneauver in. there’s no way you can possibly know all the tiny things that trigger our tears or our joy cus you’ve never been there, it’s a do I talk about Conner or not talk about him, always wondering relationship. I am so grateful for those who are brave enough, not just for me but for any grieving parent, who are willing to step into that arena of unknowing. I can imagine it’s a scary place to be. learning while experiencing it. not always knowing what hurts until you’ve said something that triggers pain. how brave you are! Talking about Conner is so natural. He’s still very much a part of everything we do, conversationally. and believe me, I haven’t forgotten that he’s dead…so no worries that bringing him up will make me remember, cus I’ll never forget it. talking about him, not just me, but especially hearing other people simply say his name validates his meaning and his existence to me. that he truly was here. that his pain was for purpose. that others remember and think of him also. I love nothing more than to hear his name spoken out of others lips. I don’t ever want him to be forgotten. I can imagine that for others with similar loss it is the same as well.

I had a day of joy the other day. where I just felt happy for Conner. Imagining him helping decorate for the biggest birthday party of the year in heaven…CHRISTmas. I was just thrilled for him. But the pain of missing him still stings as much, if not more, then it did when he first passed on. it’s changing and evolving. and more and more it’s becoming more permanent. more real. he’s really not here. I can’t just hug him whenever I want to. or pick him up and dance with him in the kitchen like I still do with his brothers, or tuck him into bed in his room, or simply just hear him speak. just see him. breathe him in. smell him. each day he slips a little farther away in that realm, absolutly I know he’s Rejoicing In Paradise (I HATE RIP), but until I get there, this earth will never compare. it will never come close to having anything more in it that my heart desires more than my family. sending me signs of RED and LOVE is so heartwarming, please don’t misunderstand. I LOVE that he makes his precense known at just the right moments, but I’m human and I WANT MORE of him. I wasn’t done loving him yet. I wasn’t done teaching him about life and about love and about girls having cooties, and that its ok for a boy to cry if he needs to, or how to write in cursive. we were working on telling time and he was a fantastic reader and writer…but there was just so much more that we’ll never get. I see Hunter reading and spelling so well and it pains me…a part of me doesn’t feel safe in fully investing in any of it anymore.

EVERYTHING HAS BECOME SO TEMPORARY…

it can be gone tomorrow. and boy don’t I know that. look well one day, gone the next. watching Bradyn grow up, he’s speaking full sentences and is a total boy and Conner would just adore him. He always did. (I HATE writing in past tense!!!!) but in my heart I know that Bradyn won’t have all those memories of Conner. He says his name a lot and recognizes him in pictures…but like Hunter, well like all of us I guess, we’re living a life that more of it will be spent without Conner in it, than with him. there will come this time where he stops coming up so frequently cus we’ve moved into territory he’s never been in. there will come a time when others stop talking about him, as well as a time where my grief will have to become private and not so out in the open because the world has long moved on. it’s natural. I dread it. so part of me hates feeling this way. but part of me cherishes that I am still able to feel this way. if that makes any sense at all. grief is so up and down. so unpredictable. it’s a huge gaping wound that I have no clue how to fix, or even where to start. and I know it will never fully heal, nor ever fully close. permanent scar.

I know that Conners still very much with me.

But I just want more…

I SOOOO was not done loving him yet…

Love Love Love

Random acts of CONNER…

2010-12-06T22:00:00.001-08:00

So Conner boy has been busy lately.

Lots of visiting.

Lots of Love he’s been giving…

So I wanted to let you all know what he’s been up to…

*He’s been visiting many, MANY people in their dreams.

*Each day there’s at least ONE occurance of me randomly finding red where I’m sitting, standing etc. For example tonight it was, I was at a mixer event and was standing near the table I was representing, and I look down and my foot is standing right next to red paper of some sort…

*A few weeks ago there was red string in my blankets when I awoke in the morning, and just today his buddy Nate woke from his nap with red string in hand.

*His bingo buddy Matt is back in the hospital tonight. Matt got a Wii in his room and went to play a game and GUESS whose Mii’s popped up? All on one screen was Conner, Hunter, Mommy, Daddy, Bradyn, Grover and James (another CF buddy) I mean HELLO!!!

*A few weeks ago his other cf buddy, Miss Tessica was playing Conners favorite, Wednesday BINGO at Doernbecher and when she won, she raced to call in to be the first to win, but alas someone beat her to calling in, and his name was CONNER. (they were bingo rivals if you didn’t know)

*Too many red sunsets to count

*I was searching on Amazon last night for more books on grief and guess what book popped up? Here’s the cover..and tell ME that’s not from Conner

Red balloon and all…safe in the arms of God. Love it. Of course I bought it…

and beyond that He’s leading me to meet new people almost daily…and almost always leading me to talk about him and share his story of LOVE. It never fails that people will be touched and blessed by his love story. Our families love story. He’s put life into perspective for me and for so many people. Lives are forever changed because of him. FOr 7 years old, isn’t that amazing? You can google his name and you can get Conner spelled out and his full name will pop up Conner Reed Jones and there are pages and pages about him. blogs written. lives touched. perspectives changed. and to think that this was all part of Gods amazing plan for my family. Living in the greatest pain, and feeling so inadequate trying to fight that horrible beast, CF, and all along “his plans were to prosper us and not to harm us”.

amazing!!!

There truly is beauty in pain.

There truly is LOVe in death.

There truly is purpose and reason to hope.

Tonight, as I was reflecting back over all the ways He’s still with me…for the firsttime since his passing I just felt happy. SO happy for him. I wonder if he knew all along the plan for his short life…and if he knew the depth of meaning his name would carry. I wonder if he knew how greatly his LOVE would change this world?

I don’t know…but I will certainly find that out when my time here is done.

what I do know for sure though…is I’m one proud mama tonight.

my heart is glad.

there’s tears of joy in my eyes and a smile of LOVE on my face.

LOVE LOVE LOVE

in the kindest way possible…

2010-12-03T22:41:00.001-08:00

If only I knew how lucky I was a year ago…

I read back to some of my posts from this time last year and I do feel like I knew that I was lucky…but did I have any clue REALLY how lucky I was then? and lucky probably isn’t the appropriate word…BLESSED. that’s better.

a year ago if you’d asked I would’ve told you how there wasn’t one thing in my life missing (besides the obvious CURE)…but that I had great family, wonderful friends, a great handle on Conners care and needs, truly…life was good.

I miss all that guys.

I’m sick of all of this.

the hurt. the pain. the tears. the shortness of breath. the looks…or more like the stares. the ugly truth of it all, learning peoples true meanings, and yes the double standard.

I wish so much that I’d get to go to sleep tonight and awake tomorrow in heaven. this world has nothing for me. it is filled with people who for the most part are bumps on a log…they’re just going thru the motions…unknowingly wasting time away with their blessings that they may not even realize they have. and not everyone falls into that of course…but pay attention…everyone is out of their house this time of year, christmas shopping and traveling. so many empty faces just scurrying around from place to place…no real purpose.

I hate that for some, it’s not ok for us to have a pass this year. we love christmas. we love jesus. the kids love santa. and I never asked to cancel it all. but I wanted it to be celebrated in our family a way that we can make it thru emotionally…yet it wasn’t ok. our house is decorated, our tree is up, granted much of my usual holiday décor is still buried in the attic that you access in conners room…but theres lights outside. theres a tree. we’ve visited santa. we will take our annual drive to see the xmas lights soon. we’re making effort in ways that we can handle. I wish it could be enough. if I may be so bold as to speak freely I’m very tired of other people pushing their sadness over conners passing onto me. take it. it’s not mine to bear. I have my own. I can’t handle all of this. I feel I’m on the verge of a breakdown when it comes to what we as a family of 5 minus 1 need…because people ask what we need, but then don’t honor our honest answer.

they think they KNOW what we need…well you don’t.

theres no way that you could…you are not us.

it was a slap in my face tonight.

I’m trying.

really I am…trying my best to enjoy what we can of this season…but people…it’s not about presents. it’s not about giving toys. it’s not about receiving. it’s not about family and tradition. (this sounds harsh I know…even I’m cringing writing this!) but it’s not.

Christmas is about the birth of Jesus. The birth of the son of God who saved us from ourselves. It’s about His Love, and our inadequacy. Losing Conner, christmas, like many other things in my life, has taken on a new meaning. fresh perspective. jesus came as a tiny infant, who relied on his one of a kind mother, Mary, to care for him and nurture him, so that He could grow and bless others, LOVE others and heal others…and give up his life for others. and we as a family of 5 minus a beautiful 1 understand that. we cherish that. losing Conner has put Jesus at the forefront of each and every thought like you couldn’t imagine unless you lived thru this as well. nothing matters but getting to heaven. to get to heaven to be reunited with Conner, as a family of a heavenly 5…and getting there is all about LOVE, respect, integrity, compassion, nurturing, sharing just as Jesus himself did.

we understand that, we truly do.

so why is it crazy to want a pass from the hub bub of christmas that has NOTHING to do with Jesus’ birth? The most painful part of Christmas to us this year is anticipating watching our two living sons open up present after present of stuff they’ll use maybe 6 months then toss aside, and knowing that Conner should be there too opening his presents as well. but he won’t be. the only gift we desire for christmas, is one that nobody can give to us, so why pretend that it’s all ok? having divorced parents that means travel to 4 different places for the hub bub of it all, over and over and over again putting our hearts in a blender to make sure that our kids are enjoying their christmas too. I wish people could understand, they lost their brother too here. hunters best friend is dead. he misses him like crazy. we all know already how hard all of the hub bub is going to be…except those on the outside. saying that we need to keep things kinda the same so the kids don’t miss out on christmas. trust me here. as one of their parents I know for SURE that they too want some peace.

so we compromise.

and try to pick up the rest and push it out of our minds as misunderstandings.

that’s all we can do I guess. is do the best we can, to make the best choices we can, for our family and nothing else matters. for some, they’ve been grieving Conner for the full 5 months he’s been gone…for us…oh how to even explain it…but we haven’t. theres no way that we could. it is all consuming. it is intense emotion that each of us feel…so in our home…we do grieve each day…but not like others would think. it’d be too intense to grieve him so intensly 24 hours a day, 7 days a week, 20 weeks in a row.

so we’re just doing the best with what we have…and that’s all we can offer to anyone. our best right now may not be much to some, but it’s everything to us. it reminds us that our best is sufficient for Him…He who holds our dear loved ones hand for us til we get there ourselves.

so please…do a grieving family a huge favor…

and cut them some holiday slack…some holiday love…and KNOW that they can only do so much…and you shouldn’t expect anymore from them.

Love Love Love

Just missing him…

2010-12-02T21:01:00.001-08:00

A picture from exactly a year ago today…

I’m just missing him so much…

The Christmas tree…

2010-11-28T14:29:00.001-08:00

Yesterday we went for our Christmas tree. It was different in many ways…both good and sad. Hunters missing Conner so much right now he’s dragging Conner’s Grover doll with him everywhere in the house. So he brought Grover to help find the perfect tree. Bradyn kept stopping to eat leftover snow instead of looking for trees, although he did enjoy touching the branches of most trees as well. Santa and Mrs. Claus were on hand and Hunter wished for a Toy Story 3 Lego set with a train…a big one he said (huh?) and baby B just wanted to say hi to santa. We visited the goats and the reindeer and picked out our new ornaments for the year. Last year we changed our tree colors to red, white, silver and red…and this year we added to it…

red lego ornaments

Enjoy the pics, I’m off to keep making those cute Lego Ornaments…

Love Love Love

Different dining tables…

2010-11-25T09:47:00.001-08:00

Last year was the last year, Thanksgiving will ever come and go and not include sadness. I am slowly accepting that.

I am thankful in my heart, please don’t misunderstand. but pain overshadows it. I think of Conner and see that beautiful smile that was always on his face and I know he is where he is supposed to be. in a heaven where oxygen and IV’s, and medications don’t exist. I got to thinking about how different things are this Thanksgiving. Last year we had just gotten out of the hospital from another lung infection…and after having “the talk” with one of his pulmonologists…and Brad and I decided to shake it up a bit.

PIZZA THANKSGIVING.

Our home, our own family of 5…just us. We actually wound up eating a make shift Turkey dinner…but people dropped them by for us…so that was better than pizza! we stayed in our jammies all day, played video games, snuggled and just took time to love each other.

I am SO glad we did that. because this year we cannot…

We had popcorn for lunch that day too…we just filled it with love and left all the unimportant stuff out. Conner made each of us placecards at the hospital…andf we ate on our finest Chinet china…we were a family…it was beautiful….

Then I think about how this year, we will not be eating at our table. How we will not be in our jammies all day (but we will leading up til we have to leave), how everything will just feel so different.

I think about the Thanksgiving table Conner has moved up to.

WOW.

My mind wonders which new friend or what family members he will surround himself with this year…this is who I think

Grandpa Ben

Grandpa Ken

Great Auntie Sis

GG Shirley

GG Emma whom we never got to meet

Jenna Cassalina (and I KNOW they’re up to SOMETHING check your plates people!)

Angie Mogren (whose probably acting innocent but is truly the ringleader of the trio)

and I’m sure SO MANY more.

Because they’re sitting at the biggest table we could ever fathom.

This year Conner gets to sit with JESUS…

wow! that is powerful statement. Jesus himself. Because we all know how much Jesus loves the children…so I just KNOW he’s gonna be at the kiddie table.

sitting there in his presence…free from pain and the suffering of simply breathing…

I’m so happy for him.

I’m trying my best to have a thankful heart. well, let me rephrase that, I am trying my best to let my thankful heart shine THRU the pain that’s clouding over it. I hope it shows at least a little bit…but I know it’s there and that’s all that counts.

my facebook is filled with love today from across the country…my phone woke me up not to heartache, but to a wonderful friend Josh who told me how much our family means to his…and I am so thankful for that outpouring of love.

I try so hard to keep putting one foot in front of the other…and I’ll get there…eventually.

but today, I pray that it’s a day about more than football.

a day about more than a turkey and pilgrims

a day where you can come as you are and feel free to eat off the finest chinet china $5 can buy you.

a day where your free to take off that mask of happiness and allow yourself to feel the loss and the pain that may be overshadowing your joy

a day where sending people notes of thankfulness isn’t JUST cus it’s Thanksgiving. But simply cus you felt it and meant it.

a holiday, is a holiday, is a holiday. each day should be thanksgiving…and my new perspective in life has shown me that.

I am thankful for that new perspective.

but I’m also so thankful that I know in my heart that this day is going to be so difficult…yet there will also be joy being in a new place, sitting at a new dining table, surrounded by different people who know at anytime we may have to leave…and its ok to do so.

I’m thankful for the few people in my life brave enough to allow me to truly feel the pain that I have to feel to keep moving towards a day where the knife stabbing my heart isn’t quite as sharp.

afterall…one cannot TRULY feel grateful if they’ve never felt PAIN first…so think on that today. what is the greatest pain you’ve faced and conquered…I bet you it will lead you to one of you GREATEST thankfullnesses…

To new dining tables for us all!

and thankfulness AND pain.

Love Love Love