a broken heart…

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

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…

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…

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…

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…

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…

 

A picture from exactly a year ago today…

I’m just missing him so much…

The Christmas tree…

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…

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

 

It’s the most wonderful time of the year

So what should’ve been a regular trip to the grocery store, broke the damn in my heart instead.

the oh so innocent villain?

CHRISTMAS MUSIC

CHRISTMAS DÉCOR

It overwhelmed me walking in and catching the smell of the holidays. Hearing how Its supposedly the MOST WONDERFUL TIME OF THE YEAR… really? I think last year I would’ve agreed. I loved shopping for Christmas decorations, my kids each year wanting a new Santa hat, and going there together finding new ornaments for our tree. How did I not know that would be the last Christmas of peace. Complete peace. It was the last year that I could keep those trivial sunglasses on that only see Christmas as a dinner with family, loads of presents and holiday travel. How could I have been so blind to it all?

I’ve always known the true meaning behind Christmas, but it was never tangible. Jesus has always been a person whose in my heart, yet so untouchable it seemed. Christmas, representing his birth, never truly sunk in till now.

Thanksgiving never sunk in till now.

It’s a whole new perspective. One that has so abruptly pushed me right SMACK into the wall of reality.

Our time here on earth is ticking.

it’s numbered.

it’s like dust in the wind.

Yet I never really GOT it till losing Conner.

God takes beautiful, strong, brave, weak, and overwhelmingly LOVED people each and every second…nothing is concrete.

I decided against my heart that was telling me to leave the store right then, and to go browse a bit in the Holiday section which is usually my favorite place to be. I didn’t even realize I was crying until the snot was rolling down my face in what I’m sure to others appeared to be a horrid disaster. I didn’t care. I didn’t even know it. but those aisles of holiday cheer brought me anything but cheer.

I watched as a mom and her older daughter picked out new outside décor, ornaments or something. I was so touched by that. I wish she could know how lucky she is to have had that moment…I turned the next corner and watched as a young mom fought her strong willed son over holiday candy…I wonder if she felt how lucky she was in that moment as well. I moved along the section, and something stopped me in my tracks.

a fake Christmas tree.

perfectly sized.

For a cemetery.

It stopped me in my tracks…it melted my heart…I just stared at it for what seemed an endless amount of time.

Should I? Should I not?

I picked it up and put it in my cart. I found a bunch of red ornaments and décor for the tree and even a tiny stocking in red for Conner. and I bought them all. A woman stopped me somewhere in the store as I walked away from the holiday stuff to the food area…and she said something like “wow…christmas already! it’s gone so fast” oh yes… I completely agree with that statement…I could only muster out “yes it has”

I find myself so many times in the day examining what others around me are doing. wondering if they know how lucky they are to be feeling ok, or have a cart full of 3 boys, or a child who looks 7…or simply a genuine smile on their face. I’ve become a pro at seeing the real smiles from the fake ones.

mine is usually a mixture of the two.

Brad and I have been discussing whether or not we want to decorate for Christmas this year. Halloween, which usually bears no weight on our year except that ONE night out gathering candy, about destroyed my heart. Thanksgiving I can only imagine will be so difficult. So Christmas? Handling more than ONE day of it this year may be the straw that breaks it all for me. So I am not sure that we will be decorating. but this is Conners first Christmas in heaven. It’s the first Christmas where his body is alone, cold, in the ground, useless and abandoned. He’s not there I realize…but his “wrapper” is…and I loved his “wrapper” just about as much as I loved his soul. So we’re going to decorate the tree and take it to him today.

I just can’t believe how blind I’ve been all these years of my life. how I’ve walked around during the “happ…happiest season of ALL” feeling so wonderful, so happy, yet so blind. how could I not see the pain in peoples eyes? I probably passed a dozen or so newly bereaved mommas over the years in that grand section of the store and never once noticed. I was so wrapped up in myself and my life. if only I could go back and hug those women. those dads. those siblings. all of them. and tell them with the purest heart I AM SO SORRY FOR THEIR LOSS…it is so monumental..and this season compounds it a million times over…I’m so sorry for your loss.

I have no clue how to navigate thru the grief during this season, cus it’s not like I was any good at it any other season this past year. but all I know is this holiday cheer makes the hole in my heart SO MUCH GREATER. It makes the blood that festers out of the wound run THICKER than ever. It makes my eyes sting with tears all day and all evening long. It melts my heart to my two living children…praying that I’m a good enough mom for them during all of this. It makes this void bigger than any canyon this world has ever seen.

EMPTY

VAST

Death is so final…and I’m so angry that I never got a say in this decision, in this “plan for good and not to harm”…but I didn’t. I won’t.

But my arms are so empty and hurt so much for Conner. I wish I could explain it well. They ache like I’ve been working them out with weights endlessly the past almost 5 months. In two more days…it’s 5 months. I swear I wish I could just be balanced. not sometimes happy and sometimes sad. Lord for my family’s sake why can’t I just be happy OR sad and not days of ups and downs. I feel people feel they can’t reach out or talk to me cus they never know which Sarah they’re gonna get right then. it’s so true. cus I have no idea either.

I could be in the back of a crowded room…would you see me?

I could be in the middle of the aisle at the store grieving the loss of needing applesauce for medications…would you think I’ve “lost” it?

I could be the joyful heart that stops to let you in while driving in Holiday traffic… and you would NEVER know…

Just like I can have the largest, most genuine smile on my face…but could you SEE or do you DARE to try to understand the pain in my SOUL?

UHG…I’m so tired of feeling so much pain. I’m tired of being jealous of people with all living children. I hate that I’ve been so robbed…and I’m supposed to find a way to be ok with the loss. I’m just so tired of this all…

I don’t want a stupid “awesome” tattoo for my dead son.

I want my son. ALIVE.

I wanna wake up to him crawling in our bed cus he’s not feeling good, or has had a nightmare.

I wanna hear that horrible cough that inevitably lead to his death. I miss that too.

I miss walking around, or into a group of people and not feeling alone…feeling people watching me…or worse yet having them tell me how they read my blog…but they don’t or won’t reach out to me beyond that. Knowing my pain but chosing to walk away from it. I feel that I HAVE THE MOST CONTAGIOUS DISEASE ON EARTH…but lucky for you..I’m the rarity. You’re the norm.

All I ask I guess is this Holly Jolly Christmas Season take a moment to touch someones life. Greatly. More than buying a present…TAKE TIME TO REACH OUT AND TOUCH THEIR HURTING SOUL…so many people are walking zombies of pain…and truly there is no feeling like it in the world…

Oh Lord you so promised it would be worth ALL OF THIS…I’m believing YOU that it WILL oneday be worth it…

 

 

Beauty in pain

Got my tattoo in honor of the bravest 7 year old warrior I’ve ever had the privilege of LOVE LOVE LOVING!!!!!!!!!!!!

no words…

only emotion and pictures.

ENJOY

 

 

(my good luck charm…thanks kayla)

 

 

 

 

 

 

 

and heres the final product without any editing

 

 

Love Love Love