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

Monday, August 23, 2010

Magic number 3…

i remember it all so vividly. like it really was only yesterday. i found out that i was going to be a mother. me. a mother. my husband brad and i had only been married a year and some change and here i was 22 and preggo with what was to become the greatest journey of my life.

my greatest love.

my greatest pain.

all wrapped up in one beautiful 7lb 12 ounce little joy my husband named Conner Reed Jones.

Man i was a nervous wreck. Handing him to me after a c-section two weeks before his due date, because he’d stopped moving, the amniotic fluid was getting dangerously low and with his health concerns (only knew of prune belly then) they didn’t want him to labor. didn’t know if he’d be able to handle that.

Scrubbing my hands as hard as I could just to get into the NICU to meet him after our brief encounter the day prior.

So tiny.

Hooked up to monitors and c-pap…my heart outside of my body.

perfect in everyway.

i knew the fight that was ahead of him.

but never in a million years did i ever see the possibility of him losing his fight.

I knew the odds were against him, but i also knew there was always room for a miracle.

Now i think about where we are now. where i am. emotionally, physically, spiritually, day to day, hour to hour, minute by precious minute. life as i knew it to be is done. the old sarah isn’t alive anymore. she doesn’t exist. i am a new person, in every single way I’ve changed. I don’t have the security and comfort of what my dreams used to be. i no longer believe that any of us are immune to losing a child. i’ve seen firsthand how a life can go from being afraid of losing a child, to losing him and then completley shattered of a person thats left in the wake of it all. it’s a nightmare.

if grieving death was a disease, it would send you to the ICU. You’d be in such immense pain from head to toe, but mostly in your chest that you would be unable to walk. to talk. to eat. to drink. to think. to even get out of bed. and you know what? nobody would expect you to. in ICU you get a free pass to heal. on your timetable and nobody elses. you can say what you want to say and people sympathize. people never tell you time heals all wounds or this too shall pass or other nonsense. because the pure definition of ICU is critical care. you are critical. fragile.

this is where I am. i’ve voluntarily checked myself into the ICU. grief is just like being there. except that people don’t really get that. they think the pain is internal or just heartbreak…but i tell you that each day my arms ache…physically ache to hold him. my chest tightens when i try to breathe and think of him simultaneously. my legs won’t help me get out of bed some mornings. I’m in ICU. and there are no discharge papers in sight. i’m no where near rehabilitated for the real world. not even one step in the right direction.

but by truly only the grace of God am i able to face each day.

I wake up and instantly think of him and the pain overwhelms me from my heart to my feet and back up again. to the tips of every toe…all consuming. never ending. not one part of any day is easy anymore. and i wish people could appreciate that. there simply is no better way to explain it than this.

i used to get up each morning, and wake up 3 boys. make 3 breakfasts, get 3 ready for the day, and now there are only 2 to get up…only 2 to get ready. only 2 breakfasts. i used to assemble and prepare all the medications and hours of therapy scheduled into each tiny bit of the day i could…and now i simply pass out a chewable vitamin, thats the extent of my daily medicine treatments. i used to have applesauce only on hand for enzymes so that he could eat and digest and my fridge and cupboards had a shelf that only his stuff was on and now it’s all gone. i have no clue whats in it’s place. i don’t want to know. but it’s gone and it’s different. no more elementary school. now my oldest child is in preschool…so i know logically i should be back to school shopping but then reality hits..oh wait, no i don’t anymore. he lost. once again a reminder. only 2 carseats in my car now, there used to be 3. he’s gone. only 2 kiddos laundry to fold and put away, he no longer wears any. upstairs used to be a bedroom that i’d lay in with him cuddeling him or loving him or caring for him but now i can’t go up there. he’s not there. his toothbrush still sits in the holder. but goes unused. his legos are strewn about the house but not because of him, but because Hunters playing with them now. every single thing i did was for 3 kids. 3. and now when i only have to count to 2 every single time i need to do anything reminds me he’s gone. forget the pictures laying around or the toys or special things that remind me of him. forget the memories that jump into my mind bombarding me at any moment bringing me to my knees helpless…forget all that. it’s always in my face. it’s pulling a bandaid from a scab…OVER and OVER again. from the time i wake up until the time i can finally close my eyes there is no escape from it. none. and that is why grief is so intensly difficult. cus there is no break from it. it’s all the time in your face…forcing you to surrender with your white flag for maybe a nap if you’re able, or to an early bedtime…or to just become ok with being in the ICU. helpless. fragile. defeated.

7 years ago i knew it was going to be an uphill climb…a year later with his diagnosis of CF I knew the chances then grew even slimmer. but honestly can i say. i never EVER thought we’d lose. that he’d lose. because life’s not supposed to be like that. parents are supposed to outlive their children. and now 8 Thursdays later…8 precious thursdays since i held my sweet Connerman one thing i know for sure…and really the ONLY thing i now know for sure…is nobody’s safe. no life means more than another. my pain can be your pain in a blink of an eye. i pray you live it up and love it wholly. i pray you enjoy your fight. enjoy your hugs and kisses. i pray that my nightmare never becomes your own but please…don’t take it for granted…

cus now there isn’t one thing i wouldn’t do to see him again. heavens never been farther away then it is tonight…

love love love



magic number 3


  1. Hugs, lots of them. Prayers, lots of them. Loves, lots of them.

  2. I don't remember how I found your blog and learnt of Conner's battle with CF. I ache for you and your family. Especially for you. I live in your town, you look familiar and I wonder, did I ever stand with you and your 3 sons in a grocery line, or at the bank or passed you in a store. Did I get to share a smile with you over the antics of your 3 little men and tell you that they remind me of my grandsons....most likely it is just wishful thinking that we've met.

    I'm so very sorry for your loss and the pain you are feeling. You are often in my thoughts and prayers.

  3. I teach. Last night I was talking about the unrealistic expectations of others from people who have profound loss. Whether it is a sole survivor of a car accident, the loss of a child to a tumor, a suicide, a combat fatality. I was all revved up with these company leaders about the insensitivity and down-right hurtful comments that we often make -- comments like you mentioned in your blog. I've done my fair share of grieving but have plenty ahead. I've done plenty of grief counseling of others. But if there is one thing that class took away from me last night, it is never to expect a person to be "the old you" that a person was prior to a profound, indescribable, heartbreaking loss. Your words echoed in my mind as I spoke. I believe we impacted 42 people last night.

  4. So sorry Sarah... I am sure there are other mothers, that are feeling the same way or have in the past. You have the ability to verbalize your feeling to others, and that my friend is a gift!! : )

  5. I can only imagine your pain. I watched my mom lose her first born son 2xs and the change in her, the lose of my father another change, the lose of her 4th born another change, the lose of her greatgrandson another change and the lose of a grandson yet another change. I have watched the change when a great grandson was diagnosed with CF at the age of 2 wks and now the change when another great grandson at the age of 5 has been diagnosed with leukemia. The changes that this things have brought into our lives as individuals and as a family. Forever changed!
    I am so so sorry for your lose. Grieve in any way you have to and for how ever long you have to. Thank you for sharing your pain with others. No one knows your pain unless they themselves have experienced it. Know that I am praying for God to continue to hold you & your family and to continue to comfort you all.
    love to you
    Betty Ann

  6. Every time I hear this song... I think of you and your son....

    It changes everything you've been
    And all that's left to be
    Is empty, lonely, broken, hopin'
    I'm supposed to be strong
    I'm supposed to find a way to carry on

    I don't wanna feel better
    I don't wanna not remember
    I will always see your face
    In the shadows of this haunted place
    I will laugh
    I will cry
    Shake my fist at the sky
    But I will not say goodbye

    They keep saying time will heal
    But the pain just gets more real
    The sun comes up each day
    Finds me waiting, fading, hating, praying
    If I can keep on holding on
    Maybe I can keep my heart from knowing that you're gone

    Cause I don't wanna feel better
    I don't wanna not remember
    I will always see your face
    In the shadows of this haunted place
    I will laugh
    I will cry
    Shake my fist at the sky
    But I will not say goodbye

    I will curse
    I will pray
    I'll relive everyday
    I will shelter the blame
    I'll shout out your name

    I will laugh
    I will cry
    Shake my fist at the sky
    But I will not say
    Will not say goodbye
    I will not say goodbye

  7. He is here with you, time will make it so you become numb and less able to grieve, but hold on to the pain, and memories for as long as you can. it makes you strong, and human. who could forget their precious little boy? when you cry, close your eyes and see his beautiful face, hold his red legos and thank the lord for his life, and painless eternity. cherish every moment of his brothers lives.

  8. Had issues commenting last night but luckily it saved it:'re a good writer. You always take me to some place visually like a good book does. I'm sad that this story is so heartbreaking and not fictional. I wish 3 didn't symbolize a loss or that there is in fact nothing one can say to help. However, I read and hope that every time you write some weight of the day is lifted. Catharsis is sometimes the only way out of nasty fog even if it's momentary. ♥

  9. No matter what happens, you will always be a mother of three.

  10. Hugs. You're not alone. Hang in there Sarah. You have an army of support from many of us readers. We may not be able to do much, except pray for you and your precious family, but we are still here. And I know God hears our prayers.

  11. Thinking of you, always. Praying for you daily. love, love, love

  12. Thank you for sharing your story of love and pain with us. This past Monday my newlywed and no newly pregnant daughter found out that her baby will be born with CF. Although it was painful to read about our loss, your words at the end gave me the inspiration to enjoy this baby, and all of the joy he will bring us, every minute of the day. My words of encouragement to my daughter is to stop worrying about the end and focus on the love this child will bring to our lives for however long he can. I will share your blog with her. I am hoping she will start a blog of her own as it can only help other families that are coping with CF. Please feel free to read about our family at Your family, and especially Conner, are in my thoughts and prayers.


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