A new Year…a new HOPE…

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!

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…

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…

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…