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, August 31, 2010

2nd grade in heaven…

Today it is raining outside.

which matches my spirit perfectly.

i choose not to complain over the rain, it’s actually a welcome change and feels satisfying to my soul.

its easier to cry and be down in the rain isn’t it?

if people complain over the rain or how it affects their moods we get it. really it makes sense. it’s harder to feel sad when it’s beautiful outside.

well today is my lucky day.


rain outside.

rain in my soul.

a perfect match.

my heart is broken. my arms are empty. conners bedroom is stockpiled of crap we threw in there so we dont have to go in there.

the door remains closed.

so do the doors of my heart.

It’s not in my nature to feel so empty. it’s uncharted territory for me. and i don’t like it.

not one bit.


tomorrow conner would be starting the 2nd grade with his friends.

with his cystic fibrosis…

had it not robbed us of him.

his backpack would be stocked full of all his new goodies that he loved so much to shop for. surely it’d be filled with Ironman stuff…and lego’s. His little Grover doll would be right on top of it for security. He’d be so excited. He’d be talking non stop about getting to see his best buddies again, about being the big 2nd grader in charge of the auditorium filled with kindergartners and first graders. but he’d be the big boy. he’d hug his friends. he’d hug his teachers. his smile would melt their hearts once again. for sure he’d beg to be in his Kessler Comets shirt and matching green and gold swishy pants. he’d jump out of my car at 8:15am and kiss me and have a huge smile on his face. he’d be excited to see what was for school lunch. i’d spend my day with Hunter and baby B trying to fill the time and void in their day until we got to go pick him up at 3pm. We’d have to arrive early though to find parking. But who knows, he was getting to be such a big boy that maybe he would’ve chosen to walk to school instead, become more independent. Guess I’ll never know.

One thing for sure is I hate writing about it all in past tense.

It feels wrong.

It feels like a dream, honestly. Like a fog that won’t lift from my brain, my heart, and my soul. My mind is slowly coming to terms that he’s not coming back, but the connection between my head and my heart is broken…because my heart won’t listen. It won’t believe it. It gets angry each time my brain tries to make me remember that he’s gone. He shouldn’t be gone. This should be in the present tense. i should be rushing out for last minute school supplies, back to school clothes, lunch items, stocking the teachers room today with enzymes, inhalers and Boost to drink. I should be going over CF with the new teacher as I have each year explaining when to call me, when it’s normal, how he handles so much with maturity well beyond his years. how he sometimes doesnt have the energy to put his head up, how he may need to rest…but that he’d be ok.

he’d be ok…?

he’s not ok!

I’m not ok!

we’re not ok!

not one thing about this is ok!




He made it thru the last school year, then was gone…

we never had a summer.

Conner never had a summer break.

he got an eternal break…

and had to leave us behind…

and we have to figure out how to pick up the pieces while trying to grieve, raise our children, deal with the universes cruelist reality…alone. without him. without me. without brad. without our boys. because we’re the jones family, home to 5. 4 boys and me the queen…but not anymore. it’s jones 5 minus 1. so a new life has to be found. new hope, new reason, new dreams, new goals, new loves, new interests, new determination, new attitudes, new personalities, we have to learn to push what we now know as lifes greatest gifts to the forefront, and learn to let go of the temporary, unimportant “stuff” of this world. it is difficult. its unwanted.

i’d be lyeing if i said i didn’t want conner back. but truthfully, the only way i’d want him back, even for a brief moment was if he could breathe. if he wasn’t in one ounce of pain. and i know that could never happen. CF is painful. Breathing is difficult. I can’t imagine the pain it caused Conner. And what a miracle that he never once complained of it. I wish it were me instead…i’ve lived 30 years…God why couldn’t it have been me instead?

the simple joys of being a child. an innocent youth.


in the blink of an eye.

one day here laughing with me, sitting on the couch with me eating the “biggest bag of Starbursts they make” and sucking on the white and red circle mints together. cuddeling. loving. laughing. smelling him…snuggeling with him in my bed…listening to him whimper…hearing him yank off his bipap cus it was making it too hard to breathe! not able to make it to the bathroom. i couldn’t get mad. i knew it wasn’t his fault. i helped him. i cherished being able to serve his needs even in that capacity. as a mom my heart broke. i gave him my bad gene. unknowingly yes, but still the same. watching it unfold so rapidly…one moment laughing and loving, to helping him even make it to the bathroom to the next morning waking up to him pretty much in a coma. unable to open his eyes fully. the fear when he could. god that day sucked…

and now here i sit.

without him.


trying desperately to find balance. to maintain equalibrium. but how can i? a peice of my heart, one that created such a steady source of love and balance is missing now. and will ever again be there…so how can i be balanced w/o my entire heart? my entire soul? everything throws the scales off these days…school, sleep, medications, therapies, schedules, other friends, mommy friends, everything. it’s all off…

i can never feel whole again…never. because i never will be. sure maybe one day it’ll hurt a bit less, and maybe there will come a day that the first thing i think of will still be Conner but with a smile and not instant tears and heartache…but what about now? I will never be whole again…and i need to figure out how to try to even up the scales a bit. i know to my core that people are afraid of saying the wrong thing to me. but saying nothing is worse than anything one could say to me.

i know that people even family aren’t trying to project anger and unkindess onto me…but it’s born of their own fear of the situation…

but i miss him,

i miss his smile. i miss his sweet voice. i miss his laughter. i miss his sense of compassion and humor, i miss his divine love of god and all people, i miss his strength and depth, i miss his hugs, i miss him at my dinner table, i miss him lying on his side of the couch, i miss the humming of his oxygen concentrator, i miss the buzzing of his vest and neb treatments, i miss his interactions with friends and family, i miss the joy on his face while fishing, i miss hearing him love on baby B and his beautiful “squishy cheeks”, i miss watching him and hunter build and tear apart legos together, i miss hearing the annoying sounds of icarly or wizards of waverly or suite life on deck that he’d lay around watching, i miss his home health nurse coming by as part of our fridays, i miss calling the cf clinic for help or advice, i miss conner sleeping close to me throwing his arm across my chest and kissing me goodnight, i miss him complaining that dinner is disgusting or gross, i miss hearing him tell me that his breathing “is not good today mama”, i miss him asking me to “call dr link so he can make me all better again mama”, i miss hearing him yell “crack attack” or “moon shining” to make dr powers laugh louder than you can imagine, i miss hearing him call the cf nurse and dietician AND social workers Dr Ben, Dr Pat and Dr Wendy, respectively, I miss him walking while yanking up the waist of his pants so he always looked like he had high waters on, i miss the neverending sippy he had in his hands full of chocolate boost, i miss hearing him yell “RED ONE!”, i miss him explaining to me why he only eats the yellow popcorn and not the white ones, i miss his innocent tears, his innocent questions, his innocent behaviors…the ones natural for any young child not just one living with CF, i miss how our lives used to be full, busy, scheduled, but filled with joy and love, i miss him every second of every minute of every hour of every day of every week of every month…and that will never change.

i miss conner reed jones born april 14, 2003 to my hubby and myself. i miss our fight. i miss our wholeness and our love. i miss the constant worry and battle cus it made me feel alive. i miss the me i used to be, the we, we used to be…and i hate setteling for this me and we that we are forced to be and figure out now…

he should be going to school tomorrow…


and i’m dead inside knowing he won’t be…unless there’s school for 2nd graders in heaven…


  1. I bet there is a 2nd grade in heaven and I bet he has grover with him and a bag of red legos to play with. ♥

  2. Oh Sarah, I wish there was something I could say. Your post makes me feel so small which is good. It helps me saviour those little things that we take for granted. My child also goes through so much stuff, everyday, pain caused by this da%$ disease, no kid should ever go through any of that. But she is not the reason I'm posting here. The reason is my 10 year old, he can really drive me up the wall, he hates school, he hates homework, we fight every night. Tonight, as he was doing homework, drifting off and coming back to it, I was also reading your post. Everytime I nudged him back to his work, I did it with a very heavy heart but yet I was glad I was able to do it, I wasn't able to be mad at him, which I do almost every afternoon.

    Sarah, I know you have said that this blog is for you. I do have to say that you help those of us who are still in the fight, be CF, be just this cruel world we all share. I also have to say I wished I had your faith, I admire you for that, too and to a point I envy you.

    As the years have gone by and I have seen what this disease has done to my child, the many times that a picc line could not be thread or the time when the resident was so mad at me because I would not let her inflict more pain to my child or the time that I tell the doctor to wash his hands before touching her or the time that she threw up so much blood we could fill 10 sinks, my faith has wither at the same rate, I dare get mad though.

    Do know that many of us think of you, you do know that and many more of us are thankful for your posts...

    CF sucks...


  3. I love you because you are you! And yes I know your blog is about your feelings but I always get something good out of it. Your words helped me to know Conner better even though I never got the chance to meet him. He sounds so wonderful! Thank you.

  4. I was driving with my husband when Danny Gokey's "Will Not Say Goodbye" came on the radio. Listening to the lyrics, I thought of you.

    "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

    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"

  5. I bet there is a school in Heaven. Libbys entering Kindergarten up there. I have been told by friends that Sylvia Brownes "Life on the other side: A psychic's tour of the afterlife" is a very comforting book about Heaven. I am going to order it since I believe there is a beautiful after life awaiting us. Libby liked Dr. Link too. Thinking of you and praying for your heart to hold up during these hard months of "firsts". I am personally dreading Halloween :\

  6. I can hear the pain in your words and I'm so sorry. I remember the same things when my brother died. I was so busy before with seeing him at the hospital and taking care of myself as well. And the silence in your schedule, the calmness is deafening. You were so busy before doing doing doing, that you didn't have time to think about "what if" "what will I do when there gone" until that time does come and it hits you like a bus!!

    It was funny the part where you wrote about Conner hiking his pants up so it looked like he had high waters on. My brother did the same thing!! It was hard to find stuff to fit him so he was constantly hiking them up. I still remember him clear as day. The tiny things he did that made up his demeanor and personality traits.

    I also remember when it started to get better. I felt guilty the fist day I didn't cry. Like I'd moved on and left him behind. But now I know that was grief still working its way out. If I didn't dwell on him, then he never existed. But I couldn't live so sad anymore. It was such a hard time to work all that out. Our C-men will always be in our hearts. It will get better Sarah. I promise. Let the Lord do the work on your heart. You just have to take the steps to continue to seek him. But it will get better.

    Love to you and yours! And rays of warmth on such a cold dark day in your life. You were an incredible mommy to him. ;)

  7. Reading all the things you will miss makes me really wish I would have met your Conner. He sounds exactly like the miracle you describe him to be. ((Huggs))

  8. I bet school for 2nd graders in heaven doesn't hand out homework!

  9. I am sure that there is second grade in heaven. If there wasnt before, there is now, just for Connerman.


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