My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!



Love Love Love

Always Always Always


Tuesday, July 27, 2010

the fight

I went to see him today.

i couldn’t stay.

i started to have a panic attack.

i hate it there.

i can be there to take care of his flowers and balloons and to keep things orderly…

but i hate it there.

standing ontop of him. like he’s some kind of bug. like he never meant anything to anyone. knowing that i will never again get to feel the warmth and tenderness of his earthly hugs and snuggles…heavens never seemed so far away then it does today…so so far away.

i miss him.

desperately

it’s all consuming

overtaking everything i do

overpowering my every thought

overshadowing every activity

everything in my world revolves around him now.

i miss being needed in the way conner needed me. those with healthy kids won’t get that…but you out there like me, know what i’m talking about. cf is an exhausting disease with hours and hours of therapies and medications and treatments and appointments and iv’s and hospitalizations…it takes special people i guess to be able to juggle all of that and remain a teeny bit sane…i’ve never complained of doing the job of saving his life…because it meant we were still in the game. he was still alive. i miss being in the fight. while i still fight cf its changed now. because it had to. no longer weaponed with an arsenal of medications and machines, now i have only my two hands to type, my one voice to speak, and my heart to advocate for a cure. i miss the “life” fight…

i hate that life seems just too easy now. not emotionally but physically. day to day having only two healthy kids is almost boring. it’s just too easy. they have no medications. they have no breathing treatments. heck our biggest daily fight is what they’re going to wear that day…whats that? it’s nothing. i’m left no longer able to fight to save my sons life because i lost him, to now having to try to physically and emotionally raise these other two precious lives when i have no clue what the heck to do with them. theyre simple. never again will i be willing to hear some excuse of why people with healthy kids are late somewhere…it’s nothing compared to the fight conner and i had to fight each and every morning just to leave the house…up an hour early to squeeze in treatments to run am errands and home just in time for the next one…it was complicated. but fantastic. and beautiful. and cherished. because i was still able to touch him. to hold him. to kiss him. to hold his hand while he got blood draws. to play with him in the hospital, or to watch tv movies over and over and over again with. to enjoy pajama monday and library monday with him. to simply smell him…

i miss him whole heartedly and desperately today. and i’m bitter. how in the world did all of this happen…

i wish i was still fighting…

14 comments:

  1. I think about you and Brad all the time. I can't imagine, Sarah, what life is like for you right now. It is so unfair that he had to go...I just pray for strength and peace for your family. Love to you.

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  2. I like the part about being a teeny bit sane. There are so many days when I don't feel normal or sane. I am grateful for every moment I get to keep fighting against CF with my daughter. But it really sucks. I figured out 15 years ago my life as normal was over. and you are right most people won't get that. I am fortunate (and unfortunate I guess) to have two good friends who have helped their children battle cancer. I know not to complain about all I have to do for my daughter, because I know the reality.
    You are always in my prayers. thank you for continuing your crusade against this disease. Your voice is important.

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  3. My dear Sarah I also have a 6 year old with CF, and although I understand the CF fight, I can not begin to understand where you are now.... Honey you are still in the fight... You are now fighting for yourself.... You are now fighting for YOU to survive, and you are fighting to beat the bitterness everyday, every minute... Fight hard my dear one... My prayers are always with you....

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  4. I have no way of knowing what you go through, but in reading...you mentioned having to stand over him like he's a bug. Would it help to go and sit down and read to him any of his favorite books or something of the sort? Maybe it would peaceful? - I hope that your day looks up today and that the future visits are more peaceful than the most recent. And keep fighting for your joy and the peace of your whole family. ♥

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  5. as always, I come here, read your words and find myself at a loss for my own. I have absolutely no idea what you are going through but I do relate to a teeny part of how parents of healthy children will never "get" what any parent of a child with chronic medical issues goes through. I have been told so many things by such parents and it infuriates me to no end. I have heard "I know exactly how you feel because my cat had a seizure once" and "I know, Julie. we had a rough weekend too with a stomach bug". too?? as in also?? because I'm sure that your kids stomach virus was every bit as rough as my child seizing for upwards of 3 hours!!!! ugh! just thinking about how much those parents comments piss ME off, sends me over the edge. hearing it in your situation...well you must be a way better person than me because I'd be ready to smack someone!

    I'm rambling, as usual. but I comment sometimes 1) to let you know a stranger is praying for you and 2) because I think you're awesome and 3) because Conner's story has changed my perspective in ways I couldn't begin to express to you. to trust God's plan like you have is not of this world. it is proof positive that God is REAL as He can be. I have always known it; been sometimes bad to wonder but still sure that someone chose Jesus for the very first time because of Conner. I care if my kids do well in school, become productive members of society and do right as much as possible. but I care SO much more that they have Jesus in their heart:) You have inspired, in me, an outlook on life that had so much less fussing/yelling/getting flustered with my kids and much much much more loving/living in the moment/getting hugs and kisses and simply living this life instead of being stressed about the small stuff. if there was any way I could send you a huge, please know I would be there in 5 mins. you are amazing, Sarah! more so to my spirit than you will EVER know:)

    also, I contacted your friend several weeks back and gave her Tshirt sizes I wanted. hunter ended up in the hospital for status seizures 3 times that next week and I completely forgot to send my check. can I still?

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  6. I just wanted to tell you that I've grown to feel so much love for you...a person I've never met. A blog that I stumbled upon while missing my sister Katie, another CF angel who I hope has found Conner in Heaven. Each night when I pray, I ask her to keep an eye out for him. :o) I think of you daily and pray for your pain to dull. Lots of hugs to you.

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  7. i think about your family all the time...i look at aidan and am so fortunate that we're still in the fight. i will try not to complain about it anymore...if we're fighting, it means he's still here with us and that is all i could ask for. i pray for your family's healing through this..and i agree---healthy children are EASY!

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  8. I learn so much from your words Sarah. It's so strange. It's like you've walked out the back door while I'm walking in the front. Like reading a book backwards towards the front.

    We have five children. Our child with CF is the baby ~ age three. Our oldest is twelve. I thought as I read your words what it would be like to have done all I do now for our son from the beginning with our first child. I see how our children without CF begin to fit around the disease. And, I can only imagine how much more so that must have been for you with your oldest having CF compared to my youngest. I was thirty when we had our first child. You are thirty now.

    When talking about the insensitive things people say, I slowly learned that there are just some things that people don't "get" until they are there. Like having five beautiful children ~ homeschooling them all ~ bed rest during pregnancy ~ having a child with CF ~ and losing a child to CF. As you write, I can appreciate, (thought not fully understand) as I see my life filling up with the CF fight, what it must be like to see it emptying of the daily fight for life against CF.

    Sarah, you will find your niche in the battle again. I pray that that Jesus will comfort you through each moment of missing your Conner.

    Your boys are adorable. Just be in the moment with them. As their lives begin to unwind from around CF taste the bittersweet discovery of who they are. And, on my end, I pray that I won't loose for myself the ability to see each child independent of CF and its affects on our family.

    In HIS grip.....

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  9. Julie...yes you can!!! thank you all for your wonderful kind words...i needed them... <3

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  10. Sarah, done! I emailed Trish just a bit ago.
    As always, I am available anytime for venting about parents who "just don't understand". Good grief there's a ton of them!!!
    Love you to pieces girl - xoxo
    ~Julie

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  11. I just wanted to wish you peace. Thinking about you every day. Love and happiness to you, hang in there sweetie : )

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  12. My prayers stay with you. I didn't know you or Conner but I know the struggle to keep someone alive and how it feels when that is gone. My heart bleeds with you. Praying much!

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  13. Oh Sarah, my heart is so broken for you. I know you hear that all the time and compared to your broken heart, mine is nothing, but I am praying for you. Daily. We are kindred. I'm a "CF momma" too. I just wanted to say thank you for still fighting. Even though Conner's "life fight" is over, you continue to fight and continue to make him so so proud. He was so lucky to have YOU to care for him and love him so wholly. Your fight and your story has brought so many amazing things...people have come to Christ, people have gained a completely new perspective, awareness to this horrible disease, and a whole new meaning to the word LOVE. Thank you Sarah and we are praying; lifting you up when you don't have the strength to stand on your own. We are here. Your family of prayer warriors and family in Christ. God Bless you my dear. Love, Emily (Reese's mommy)

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  14. I know that nothing I could say would make you feel better... I just want you to know I am praying for you and thinking of you and your family, and wishing you hope and healing through this. I'm so sorry for your pain.

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