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, September 6, 2010

labor day…

makes me think of just one thing today.


and delivery.

makes me think of connerman. makes my bones ache. makes my eyes sting, full of tears.

makes today worthless.

because i am a mother. missing one of my own.

the two i have could never fill that void and no other could ever replace that void.

i love them.

i love him.

and today it’s overwhelming.

camping was a nice respite.

a breath of fresh air for my soul.

not that i didn’t think of him, because i did.

i pondered how it would’ve been had he still been here…truthfully we wouldn’t have gone…but if we had it would’ve been so different.

and now i’m home, sitting in the stench of 3 days worth of campfire…long after two showers and a thorough clothes washing.

i still reek.

smoke makes my mind wander to cf.

it always has.

the way i get so disgusted that people chose to smoke and kill their beautiful lungs that my son never had a chance for, but would’ve given anything for. and now i’m covered in that stench.

saturated in it.





my heart is broken.

my pain is so deafening.
it overshadows everything i do, everything i attempt to do, and probably everything i ever will do.

i’m a mom desperate.

cut open.







all the business in the world could never take my mind off him.

i read back to blogs i wrote even a month prior to his death…i really had no clue the pain i would endure.

because of that monster.

i had no idea how death truly works…invading your life and space and leaving not one thing about you untouched.

it changes every little thing you do, and changes the way you are.


this is as close to a mid life crisis as i can imagine.

starting over.


but never feeling whole.

my heart hurts for baby b and hunter. they speak of conner each day now.

they are starting to get it.

they are hurting. deeply.

and just as i couldn’t save conner, there’s nothing i can do to make that pain go away for them.

because he is gone.

gone gone gone

never coming back

hunter asks why he’s the big brother now.

baby b says his name all day long.

stares at his pictures and says his name.

hunter wakes up crying, nightmares, missing him.

we love them, we hug them we rock them, we help to calm them down…but we have not much more to give them.

because their pain is ours as well.

we carry the burden of losing a child,

losing ourselves,

losing each other,

and losing our childrens innocent lifes.

and we’re helpless to do anything to stop it.

because honestly there’s nothing we can do to stop it.

he’s gone.

we’re not.

and we’re forced to make that connection again from point a to z.

but we’re stuck at only point b.


and hurting.

ive never in my life experienced such intense emotions.

where i know that if someone was to just see my face they’d know for sure what i’m dealing with. because my face is heavy with grief.

my heart is heavy with sadness.

and it is wide open and visible for the masses.

all the lucky people who will never know such pain.

i’m envious of you.

there are days where gods strength isn’t enough.

there are days that i wish so much to just sleep the pain away.

so i can meet him again in my dreams and see his sweet face…

but duty calls.

thank god for that.

thank god for that miracle.

i just honestly would give anything to be with him. i work so hard each day, so very consciously about my actions and my choices…

because i’ve lost him once already…

i can’t lose him again.

and though i know and stand confident in my forever life with him…part of me can’t grasp that concept.

it seems too far away to be true.

i wish that i could pack up the 4 of us and we could hop on the train to heaven and never come back.

be a family again.


and in love.

and safe.

and free.

there is not one thing i want more.

to be the jones family of 5…

not the jones 5 minus 1…

i could live without ever breathing this side of heaven again…

i dream of it.

get to a place where we can feel whole again. see him again. be a full family again. having an angel son may sound sweet to those who haven’t experienced the gut wrenching pain that comes along with that horrible title. but to me…angel is just another word that reminds me of pain.

deep pain.

cus he’s gone.

yes he’s still here with me…

but he’s gone.

i’m alone.

we’re alone.

i’m so tired of filling my days with business just so they fly by.

i need more than that.

i need meaning.

i need my family back.

that deeply intense grief i felt after he took his last breaths is back…and i’m afraid that it’s unpacked it’s bags and has no plans to leave anytime soon.

the thick lump in my throat and the tears that are constantly in my eyes are never ending…i just can’t imagine it ever getting easier.

i can’t.

i’m just a lonely, pitiful excuse of a woman these days.

i don’t feel like the sarah i once did.

i feel so low.

so helpless.

i couldn’t save conner…and i can’t comfort my kids in the way they wish i could.

its a very inadequate feeling.

to be a mom…a nurturer by name…and not be able to nurture.

to be so full of love for my family, my 5 minus 1…but not really be able to show it…cus i’m just so broken.

hunter starts school tomorrow…

he’s leaving me too…

it’ll be me and b and the silence.

and i’m not ready for that.

i don’t want that.

i want conner, hunter and baby b home with me all the time. i want brad home with us.

no hospitals

no medication

no iv’s

no treatments

no therapies

no pokies

no scales

no doctors

no g tubes or ports

no oxygen concentrators

no bipap

no pain

no rain

no cystic fibrosis

no pain

no pain

no pain

just deep, deep breaths full of love and life…and no worries…

and just love…love….love…

not this pitiful sad excuse for a labor day…

i feel like the oldest 30 year old in the world…









  1. Much Love sweet Sarah. I am so sorry.

  2. Gosh my words are so inadequate. Truly. I am so utterly sorry.

  3. Hugs and love, Sarah. Always in that marathon with you, always.

  4. Sarah - I'm praying for your heart and your family. Praying so hard. So, so, sorry.

  5. ♥ You're not inadequate, you're human! Humans grieve their pain whether it's a day or a lifetime. You're having a normal reaction to a death of your beautiful son, and don't let anyone ever make you feel like you "should be over it." Keep venting on your blog it's the best catharsis. HUGS!

  6. Thank you for continuing to fight to find a cure for CF. Your place in the community is appreciated and important. You have been an inspiration to me to continue to promote awareness. Through Conner's story, I have really learned the importance of awareness. Thank you for sharing his/your story with the rest of us.


  7. Sarah, I hope and pray that you find peace one day. I don't know how or when, just peace in your soul.. I'm so so sorry sweetie♥♥♥

  8. Here for you always, anytime, please remember this and never hesitate. I wish I could ease your pain in some way, but I know I can't, but I can just be hear as a friend, shoulder, listener, helper.

  9. I havent been to church in over 3 years, but after reading this last friday, i made it in time for the 7 oclock service and prayed for you, prayed for your family, and everyone else who has ever lost someone to this horrible disease. You have honestly touched a part of my heart. i will never forget your story and i want to thank you for that.

  10. I don't think anyone could wish for a better mum or wife than you.


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