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


Wednesday, June 23, 2010

Breathe in, breathe out repeat…

I don’t know where to start, or where to end.

I don’t know if there ever really was a beginning, or if there will ever be a real ending.

There are no words.

no words.

this pain, this intense pain in my chest, this pain that is stinging my eyes is undescribable. I’ve never EVER had a day with such intense feelings.

emotions.

each and every day this week conner’s deteriorated.

every single day.

i have no clue what he will look like in just 24 hours from now.

i’m trying so hard, so desperately to enjoy the today, for i know all to well that tomorrow is going to be horrible.

more horrible than today.

conner’s been crying or whimpering all day today.

his breathing.

labored.

intense.

pain. pain. pain.

i had to even hold him up while he went to the bathroom. he didn’t even have the ability to sit up to do that.

even with his bipap on he’s not getting good oxygen.

the carbon dioxide must be taking over.

forcefully.

i’m losing him.

i can’t believe i’m losing him.

i can’t believe a life can be over at 7 years old.

SEVEN.

my soul is breaking.

my firstborn child is losing his fight.

i can’t believe there is nothing i can do for him.

not one thing.

loving him alone, doesn’t seem adequate. it seems like a slap in a mom’s face. wanting desperately to help him. fix him. and i can’t. can you imagine how inadequate that makes me feel? how helpless? Look I know i’m losing him. I’m not denying that. I’ve known for quite some time….we’d get to this point. I have faith the size of a mustard seed and I fully know Gods holding conner and us in his hands. And He said all we need is faith of a mustard seed.

It’s all I can muster anymore.

But it’s not enough. It feels like it’s not enough. I wish so much to be done with this horrible lesson. I wish so much as horrible as it may sound for Conner to not have to suffer anymore. For Brad and I to not have to watch him suffer. It is like slowly slicing off our skin with a butter knife. There is no pain as horrible, as intense, as helpless, as deep and as raw as this. he’s laying next to me in tears. He can’t say one word without taking a breath in. he is being slowly suffocated by this horrible disease. This devil. And my faith KNOWS…I really do KNOW that God is with us and for us and is carrying us. but it doesn’t seem to make a difference. it doesn’t make it hurt one ounce less.

i knew he was dyieng. the CF docs explained to Brad and I how it happens. We’ve been prepared. Or so we thought. NObody told us about this suffering. This long drawn out suffocation…that our angel, our firstborn child will have to endure all of this pain.

I had our monthly CF Family council meeting tonight. We go around first and give updates on our CF’ers.

I passed.

I have no update.

There simply are no words.

Walking into that hospital that we’ve spend collectively over a year and a half of his lifetime in, I realized we haven’t been there in what seems like forever. Truly, it’s only been i think a little over a month…but we’re used to being there all the time. Seeing the CF nurse, the CF social workers…it was overwhelming to me. They are our team. I can handle the horribleness of the disease, I can talk about it with strength…in the bad is where i seem to be able to be brave…but when they started talking nice to me, saying how much they think of us, how much they miss us, how much they admire our strength…thats where i break down. I’m used to them being like a dragon slayer team you know? Come out guns blazing full force…ready to beat this disease to a pulp.

What a reality check tonight was.

I realized now for the firstime that we’re no longer fighting CF.

We’re done fighting it.

We’ve moved from fighting for life to fighting for a pain free death.

I hate that the last 7 years we’ve worked hand in hand, talking nonstop to the CF team, being on firstnames with the docs, there so much we know the rotation, we know the nurses rotations, we know the cafeteria rotations…we know it. and now we’re done.

can you possibly grasp how much it pains me to say that?

that we’ve dedicated every second of every minute of every hour of every single day of Conner’s entire life fighting this disease. With a team that is family to us. They send me personal emails letting me know they’re thinking of us. They call when they’re on call just to check on Conner. They have 300 patients but they are so extremely dedicated to Conner. I think our loss is just as much there loss.

and now we’re no longer fighting the disease.

we’re fighting the pain.

my throat is acheing from the huge knot stuck in it. Tears are threatening to flood my room. My heart is as close to out of my chest as I could’ve ever imagined.

There are no new lungs waiting for my son.

we’re on no list.

we’re simply on our way to becoming one of those statistics that have kept the 30,000 number of people with CF at that number for as long as i can remember. It won’t go down. There will constantly be 30,000 people with CF because we lose so many lives to cf every single day.

everyday.

24 hours in one day.

CF death statistics on average are 484 deaths per year, 40 per month, 9 per week, 1 per day

those numbers are way too high.

This so is not a game to me.

it’s no laughing matter.

and it is not a joke.

this is my son.

my dream.

my husbands hero.

our baby.

it’s not ok.

i can’t take listening to him whimper and cry. I hate that each day is worse then the day before. I hate that we can no longer travel…I pray he’s had a full enough life. I pray that his heart is full of peace. I pray that he dreams of God and of heaven. I pray he’s not afraid. I need to tell him that it’s ok to let go. That we’ll miss him terribly, but we’ll be ok. We’ll still love him. and talk about him. and do things that we did with him. He’ll always be our son. a brother. But I wish i could say those words and truly mean them. because I don’t. how in the world am I going to be ok? How in the world is our family going to make it? How will we go on? How can we be strong enough to guide our living children thru this maze of grief so it doesn’t negatively affect the rest of their lives? How do we honor Conner? oh lord…

how am i gonna live without him…how will it feel to wake up and realize he’s not there. to look at his seat in the car, his empty seat, and not miss him? how will i go upstairs and see his bedroom and not wish i could hold him as he slept? how? my life will never EVER be the same. never. never. never.

that’s enough.

i’ve had enough.

I cant talk about this anymore for now…

Love Love Love

         Sarah

 

50 comments:

  1. CF is a son of a bitch. We are strong, but it is stronger. Conner is Stong! but it is stonger.
    I am a CFer i know him. He appreciates all that you do. We all do.
    Peace

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  2. No need to write, to speak, to talk, or to explain anymore. Love to all of you, especially Conner.

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  3. Oh Sarah, Each day I ready your post and I never know what to say. Well today I sit hear in tears reading this and know exactly how you feel. My son only got to live 7 1/2 months with CF. I wish that we had 7 years. We never got to take our some home from the hospital. He is our second born son. His big brother will look at the photos all over the house and just go its ok mom he is in heaven and we will see him again soon.
    After Ethan died we could not even drive3 on the freeway past the hospital without his brother getting upset. Ethan lived in 3 hospitals in his short life and the first 4 months he was in the NICU so his brother got to see him once. But the next 2 1/2 months they got to be brothers at the hospital here in town. and that is the hospital that he feels his brother is still at. When we walk into the hospital he will go to his room there and look for him, It breaks my heart when I and the nurses have to tell him thats hes not in there he is in Heaven.
    We spent the last 2 weeks in seattle childrens. We were there to get a new liver, intestines and pancreas. We went in for a bowel blockage, a simple surgery the told us. Well he never came out of surgery. We kept him on life support for 2 days until all family could come and say there goodbye.

    Ethan was diagnosed with something else before birth and the told us he would not live. So im my mind when he lived a while it was a big thing and I Miss him each and every day we think and talk about him every day.
    I did a family photo shoot of all the cousins and it looked so weird that he was not there.
    Sorry to ramble but I just wanted you to know that it will get better. Each day after that child passes it will get better. We went to a group called grief share. you can look it up at griefshare.org I think it is.

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  4. Sarah,
    I do not know you, but I feel like I do. I have cystic fibrosis, but I cannot begin to fathom what you have gone through in the past 7 years. My family will be praying for you and your family and Conner in this hard time.
    God has a plan, and though it may be hard, just remain faithful in Him.

    Love,
    Carly

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  5. I can't even imagine. I hate CF so very much. I'm so sorry.
    xoxo

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  6. Sarah,

    My heart breaks for you. I wish I had the right words. Please know that there are many of us out here who are hurting for you too. We are not his mom but we can imagine what it is like to lose a son.

    I know that someday I will lose Ricky. I can't face it now but someday I will have to.

    I just don't have the words.

    You're in my thoughts.

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  7. Sarah, I cannot even begin to understand your pain. I have no children, but I do have CF, and I hate it as much as every other person, but this I just cannot fathom. Every time I read your blog I get a taste of just how hard things are for you, but I know in my heart that it is just a taste...this isn't the full picture.

    I think about you and little Conner man and the rest of your family often, and I am sure that Conner appreciates everything that you have all done for him.

    I'm sorry, I don't know what else to say, but you will stay in my thoughts xx

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  8. Sarah

    As a mom that has lost her first born son to this horrible disease, I know the pain that you are feeling. This pain is something that can't be described and a pain that will be the worst you will ever experience in your lifetime. For me now, there is nothing else that can ever hurt me, nothing else that will bother me, everything is so minor now compared to what I've been through and I'm sure will be the same for you.

    There's nothing one can say to ease your pain Sarah but know that there are so many people that are praying for you and your dear Connor at this time.

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  9. Sarah,

    I also don't know you and have no idea the immense pain you are feeling. I share in common with you my hatred for CF and a child with CF. I wish that there was something I could do or say to make you feel even slightly better. I think of you, Connor and your family everyday. I pray for all of you and know that God is with you.

    Becky, Mom to Hayley,6, with CF

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  10. Praying God's comfort of all of you. No words - just prayers.

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  11. Several times each day I read your blog and say a prayer for you, and Conner, and your whole family. Words cannot adequately describe what is in my heart, but know that special prayers are being sent for all of you. Through this blog, you have ministered to so many people and you are such an inspiration to all of us whose lives are also touched by CF. God is holding each of you close to Him - may you feel His strength and love always.

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  12. Your blog showed up in my google reader suggestions. I have only read a bit but my heart is breaking for you. I pray that God brings you and your little ones peace.

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  13. Sarah,

    My love and prayers go out to you and your family. May G-d comfort you. I am a stranger but I do think of you all many times a day. If only I could do something for you. All I can do is pray.

    Hugs
    Jacky

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  14. I have no words -- I just want you to know that I'm reading, hurting, aching, knowing that someday I will be where you are. CF sucks and being a CF mom is unbearable. I'm so so sorry. I wish peace and no more pain for Connor.

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  15. To clarify above... I'm hurting and aching for you and your family AND knowing that someday we'll be there too. Sorry I didn't mean to sound selfish, I am thinking of you and your family.

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  16. Praying that God helps Conner find peace. Praying that God continues to hold you and your family during this difficult time. Love and prayers to you and your family.

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  17. We are thinking of you and our hearts go out to you with your struggle. Conner sounds like one amazing kid and you sound like an amazing mom. I hope you have people there for you as you have been there for Conner.

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  18. From one CF Mom to the other. I know we don't know eachother...but I want you to know that I love you and your family.

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  19. Sarah,
    No words today or any day will fix your hurt. I know, I'm watching my big sister go through the same hurt as little conner man. And I know I will be there one day too. I cannot imagine your pain as a mother but I do know little conner man will always love you. No matter where he is or where he isn't. And its love that gets us through the day. So today I am sending love. Lots of Love. Love. Love. Love.

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  20. Still reading and praying for peace and comfort. I continue to hold you all close to my heart every day.

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  21. Sarah, I can't even begin to understand the immense hurt that you are feeling. All I can do is pray, pray for comfort for Connor, pray for strength in what must be exhausting to endure....just pray. Gentle hugs and love to your family,
    Jenn

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  22. Praying the Lord comforts you all and eases Conners pain. I can't even imagine the intense heartache you are in. (((hugs)))

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  23. Love, prayers and hugs from our family.

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  24. Praying for you, your family and Conner, Sarah.
    Love and hugs,
    Amanda

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  25. All my love and thoughts to Conner and the family. I will NEVER be able to understand what you're going through but just know that I will NEVER stop spreading awareness in the hopes that other families don't have to feel this unimaginable pain.

    Ronnie

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  26. I don't know you but I'm praying for you and your family. I can't even imagine what you are going through and hope that I never have to be in your shoes. There's nothing that I can say to make this better but I would like to say that you are truly an amzing person from just what I have read on your blog. Conner is luckly to have you as his mother. I will be praying for you and your family, take care!

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  27. From one CF mom to another. I am so sorry. No words can help. I am praying for you all.

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  28. at a loss of words for you. just tears and a broken heart that is not even as close to as shattered as your and brads. I'm on my knees praying for you, for each minute for each small step. praying that right now the Lord is holding you all in his arms as he carries you through this tough time. thanks for being so raw and open. My son Levi is 4 and has CF so I can only imagine what you are going through and my heart hurts so much for you. We will continue to pray for you all!

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  29. No need to write anymore Sarah. Just love, love, love. Just hold him, and kiss him, and love him. My tears fall, realizing that this may too one day be my pain. I will pray for you. My faith will cover you, and angels will greet Conner. My love cf mommy, my love

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  30. ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥

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  31. (((((hugs and love your way....sooo much love your way))))) Praying for Gods grace...

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  32. My prayers are with you and your family right now. I lift sweet Conner up and pray for Gods peace and comfort for him. I pray that the peace that passes all understand will guard your hearts and mind today and always. Your sweet Conner is an inspiration to so many. You and your family are too, and remind us to never take one day with our children for granted. May your pain to to peace soon.
    Love
    Kim Dunham

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  33. Hi Sarah. You don't know me but a friend linked me to your blog. I lost my 8 yr old daughter in January to a status seizure. We fought her seizures her entire life. If I can help in any way or if you just want to talk to someone that knows all about that indescribable pain despite having faith that God knows what He's doing please do not hesitate to contact me. Your family is in our prayers. Marcey Chapman martc70@yahoo.com

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  34. I am standing here with tears streaming down my cheeks.. you have opened the windows of your soul and laid bare all of your fears and faith.. how you have touched me with your words.. the beauty and pain within conners little life.. seven years.. thats never enough life to live.. but what an amazing love and life he has had with you are your husband to watch over him.. he is blessed as are you and I see that and feel it in your words.. though they drip with sheer pain and sadness I see the mustard seed.. I see y our strength.. when you wake in the morning and look in the mirror and breath in.. thinking one more day just one more day.. may the lord carry your family on wings of eagles.. may he bless these days with peace and his mercy.. Nicole Ingalls

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  35. i'm so sorry...I don't even know you...a friend of mine who's daughter is 7 and has CF posted this link to her facebook page. I have just managed to pull myself together enough to type. I am the mother of 3 (ages 3,5,6) and my heart aches for you. I can't possibly begin to imagine the pain you and your husband must be feeling, nor your son. Know that strangers are praying for you, and loving you as you go through the unbearable. I don't know how you'll get through this, but one this is certain, you will. God Bless you...

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  36. You dont know me but I know of you and Conner. I have never been in your shoes and I hope that I never am but I have thought about how I would feel in that position. My son has a mild PBS and had a kidney transplant recently and I have feared what you are going thru. Please know that I pray for your peace and his peace.

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  37. Dear, dear Sarah... Today was the first time I visited your blog. My cousin changed her profile picture to one that said "for Connor". Her baby has cystic fibrosis and she posted a link to your blog...

    All I can say is that I am truly heartbroken and cannot remember the last time I cried this much.. You don't know me and I doubt we'll ever meet, but please know that I am desperately praying for you and your beautiful son and your family. I pray that God will bless you beyond your imagination and that if your precious one is to go with the Father that you will have such a peace.. Be so blessed.

    Love,
    Katy

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  38. Dear Sarah, You don't know me but I have a good friend that has CF and she posted a pic of Conner and I clicked on his picture and read your story.I can barely see what I am typing because I am crying so hard thinking about your beautiful little boy and all the pain you are going through.My son was hospitalized for a MRSA infection in his sinuses back in November and had to have surgery.That was the worst couple months of my life.I was soo terrified everyday of losing him.I cannot imagine the heartache and pain that you have to endure right now.I am so sick to my stomach just thinking about your suffering.I will pray for Conner and your family everyday now.I will pray that Conner has no pain and that you will find some kind of peace through all of this.My heart goes out to you right now.GOD BLESS YOU!

    Love,
    Melanie

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  39. You do not know me and I do not know you. I found your blog thru another child with CF that I follow. Your words have touched me and have made an impact that I will have the rest of my life. I am praying for you, for Connor, for your boys. You are living the fear that every mom has I am praying that you feel the loving arms of Jesus wrapped around all of you.

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  40. You and you're son are absolutely amazing. And beautiful. You're whole family is. I admire the strength you have and how you poured your soul out. You will never leave my prayers and thoughts.

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  41. I just wanted to tell you that I know for sure he IS dreaming of heaven, and that those visions are giving him comfort now, and will embrace him when the time comes. Love, Beth

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  42. My heart is breaking for you and your family. My heart breaks for Connor. What you're going through hits home for me. I pray for peace and comfort for all of you. Much Love!!

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  43. You and your family will be in my prayers. Peace to you.

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  44. As I read this, my heart broke. You have lived the worst fear of every parent, let alone every CF parents. Sometimes it is so hard to read your blog and know that this is the road that we are on, and that this too may someday be our reality. Yet, God has used you to inspire, encourage, remember to be grateful for the difficulties of the hard days with CF (knowing that there will always be more difficult ones around the corner), and to live life to the fullest. You have been amazing!

    I am so very sorry for your pain. Thank you so much for letting people see a glimpse into the world of CF. You, Brad and Conner have made a lifetime difference in the world of CF and know that through your heart the fight goes on towards finding a cure. Our family will continue to pray for you guys. May you be able to rest in God's goodness and peace.

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  45. You are a strong mother, Keep your head up high and just remember all the good times you had with him, all the laughter that he brough apon you. He maybe gone from sight but will always be with you telling you that you are a great mother and thanking you for everything that you have done for him. I send my love and prayers for you and your family. Stay strong.

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  46. May God add joy and peace to every memory you recall of your son.

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  47. There is nothing one can say to such raw pain and sorrow. Nothing.
    I am sorry. God wrap your arms around them so tightly they can feel it and let them know that their little son is indeed ok now. Give them a gift a sign.
    I have never been here before. I came over from Nathan's mom. Sarah I am so sorry for your loss and your pain, for your son's pain. I know that God will not waste this. You said it all so well. We believe but we suffer. our faith doesn't make the pain go away and it doesn't make it alright. It's the rock that we cling too so we don't vanish completely in the storm.

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