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

Sunday, April 18, 2010

God, Love, and lifes true meaning...

We have admitted Conner to the childrens hospital now. I woke up, read some of my great book which I HIGHLY recommend to those with end of life kiddos called Glorias Angels at Starbucks, attended church and then brought Conner man in to the hospital. Uhg. The smell of this place. Gets me right in the stomach. Is it bedtime yet? I'm emotionally exhausted. My mind is racing around 1,000 times a second...thinking of things I wish nobody had to think about, worrying, wondering, sadness...overwhelming sadness. I believe in God, and I fully know He's holding us so close to him that he's carrying us right now...but man...I wish that gave me peace. A sense of relief, anything...but the never ending "why's" don't go away just because you know and trust God. Kids shouldn't die, plain and simple. Parents shouldn't have to be thinking these things and filling out DNR's and shopping around for fairly priced funeral services. It's not natures order. It's the complete opposite of order. I feel very loved from my friends, family and the CF community as a whole...I really do...but I need to allow myself some honesty.
I'm pissed.
Beyond pissed.
Why in Gods name is my seven year old son dyeing...while there are so many other idiots in this world trying to kill themselves selfishly? Why is that dumbass down the street smoking, and KILLING his lungs to look cool yet MY SON is lyeing in a bed, barely breathing, because he doesn't qualify for new lungs. Why do people complain about the stupidest, small, insignificant things....I mean really?! Lets put life into perspective people. Stare at the face of your precious child, or your very closest loved one...gaze DEEPLY in their them, feel the absolute LOVE that you have for that person...feel how you'd do ANYTHING for them...really FEEL IT. Close those eyes of yours and reopen them and now see them as desperately ill...and feel the helplessness in not being able to do one damn thing for them but watch. It's a feeling so hard to explain but allow yourself to feel it. It is horrible. And no words could ever do it justice. People stop complaining over the stupid, insignificant small shit. STOP IT. it doesn't matter. Don't allow yourself to get caught up in the unimportant parts of this world. You and I were made to love. Whole heartedly love. To have amazing relationships. To put another before yourself, well ALL others you meet above and before yourself. This isnt a dress rehearsal and it sure as hell isn't high school anymore people. We are not indestructable. We bleed. We hurt. We die. It's true and it's horrible. but yes, it's true. Accept it. But don't accept the untruths of life. Don't accept that life is about stuff. It couldn't be farther from the truth.
Life is ONLY about one thing....LOVE.
I'd do anything humanly possible for my son...but truthfully...I'd do anything humanly possible for anyones son. For anyone. I've learned more in the last horribly stressful year about life and I know for SURE that if God gave his sons life for us, that we had better start respecting that. Start living in that. Each and every single person you see every single day is someone who God knows, created and loves deeply. He would do anything for them...every single one of them. So I've learned that our job...(well I can't speak for you...)but that MY job is to do any and EVERY thing possible for anyone. anytime. always. I see someone crying and I pray for them, not much but something. Someone drops a paper, well gosh the LEAST i can do is show them love, Gods love, and pick it up for them. See this is all that matters.
Acts of service.
Acts of respect.
Acts of pure love.
I hate being stuck here in this hospital, and I'm scared to death about whats to come, MUCH sooner than I ever thought acceptable or possible...but then I look around and I'm stuck here in this huge hospital and there are hundreds of people much worse off then I am. Much. So how can I waste a day complaining about everything...
Heck, even looking at my son is a slap in my face. I have breath. You and I were made for something that cant and won't make any sense until our last breath. It doesn't make sense now. but one day it will.
I can't allow myself to get caught up in all the unimportant parts of life. It's not what life is about. I feel your love. I feel your support and your prayers. I feel it. Deeply. With every fiber of my being I feel Gods love and trust in His plan even though to me, it's so cruel. and so heartbreaking and devestating. but I know it will make sense.
In the matter of one week I've met over a thousand new people. I've recieved thousands of emails, messages, and phone calls filled with love and support. My blog went from maybe 3000 views to over 14,000 views...Conners story is being told and he's being prayed for in many MANY countries and in many states and in many different languages, people have shown up in their truest form, doing everything they possibly can to bring a smile to my dyeing sons face...showing him LOVE. If thats not Gods hand, I don't know what else is. My heart is breaking...yet at the same time it's being restored. So complicated. So confusing.
So God....


  1. No words for you Sarah. Just LOVE, and RESPECT, and TEARS! Which prompts people like me to ACTS OF SERVICE.

  2. I wish I could put into words what I feel reading this. You're an amazing writer, and I'm so very blessed to know you. It looks like you already know everything that you could be told in a time like this, so I just want to tell you that I'm continuing to pray, reading every update you post, and sending so many hugs, and so much love to you and your family. Keep us updated as much as you can, and take care of yourself right now.

    Lots of love

  3. I just posted something on your caring bridge, but I will say it again have God shining through you! To be a Christian is to model Jesus and I think you do this well.

    I wish there was more to do than pray for you and I know you are feeling the love and support from all these people.

    Continue to shine, Sarah!

    Love always,
    April Luyt

  4. Momma hold on to that little man of yours. miracles still happen. Both myself and my 5 year old daughter Annika have cf. I have walked this journey too. this disease makes us face realities that no parent ever should have to! I will pray for Conner. Know that we will be wearing red, in addition to our hair dyed red for Eve Markvoort, in honour of Conner. Hugs

  5. I pray for Conner, and I pray for your peace every day. You don't know me, but I heard about your family on the Cystic boards. My son has CF and extreme short bowel syndrome. He was evaluated for liver/small bowel/ pancreas transplant last year. I have been somewhat where you are. Not to the point of signing a DNR, but to the point that I did not think my child was going to make it through the day. Doctors told us to say our goodbyes before they took him to surgery. My baby is still fighting, now 11 months since that day, but he's alive and thriving, by God's immeasurable miracles alone.

    I also know that God uses every circumstance. Even if my son had died, He no doubt would have allowed me to be a witness to other families who went through the loss of a child. God will do the same for you. You've gone through this gracefully, and you are a witness to all of us. Take care. You will be in my prayers continually.

  6. You already know this, but I will say it again. You are all so loved. And unfortunetly that is the only comfort I can give you. And I know, right now, it just isn't enough. But one day when you need to borrow a little strength, I'll be here to give it to you.

  7. praying for peace because you should have it. i am sorry you have to go through this and praying for conner.

  8. Sarah: Your words, even during this terrible time, are beyond beautiful. Beyond inspiring. Beyond gracious. To take your situation and see it as a call to LOVE, as a call to serve others, as a call to be grateful for all that you have, is a sign of grace beyond measure. You and I were made to love, indeed, and you are an embodiment of that calling. Love, pure and simple. It shines like a light from everything you write.

    I don't know that any of us will ever be able to express how much Conner's story has touched us. WE WILL CURE THIS DISEASE, and that cure will forever be a part of his legacy. Because he is a part of our collective story, a part of us, and a huge part of why we fight.

    Thanks for all the lessons. Prayers, love, and light coming your way as always.

  9. I'm so glad that you can feel the love that is being sent your way by our CF community. I'm glad you know God's prescence in your life, and are allowing Him to carry you, even if you don't always feel it.

    I'm glad you are allowing your self that anger. It is justified and healthy to express it.

    I'm going to the craft store tomorrow to buy all the red ribbon they have. I'll be making red ribbons to give out at the two Great Strides walks that we attend. THere'll be a little card attached that says "Pray for Conner."

    You will be in my heart!

  10. Im sitting here staring at my 2 little boys and cannot even imagine the feelings you are feeling right now. Please know that my heart is breaking for you and yours. Seeing Connor for the first time today on your blog and watching the precious movies that you have created has made my heart swell 1000 times larger. I have thought about your precious boy all day long and I pray for peace to you and your family. I pray for a miracle and I pray for peace. I will ask my family and friends to do the same. God bless you & God bless precious Connor.

  11. Every since I came across your blog I think about you guys. I too am going through a really hard time. This post is sad because of the things you have to think about right now, but I enjoyed reading it because everything you wrote is what I feel. I know that I am not going through the same thing you are going through, but I can relate to what you wrote because I hate CF right now and everything that it has brought to me since Nov.

    I admire your strength and the fact that you still have faith and trust God. I wish I still had the faith that you have, and could trust God the way I used too. I wish it wasn't you going through this and it was an evil person in this world. I wish Connor was sleeping at home and running to your bed in the middle of the night instead of you watching him sleep in the hospital. I wish Connor, myself and the rest of us CF patients didn't have CF.

    You are in my prayers and thank you for sharing your life with us and putting into words the pain that many of us feel yet we refuse to express.

  12. I am praying for the peace you so deserve and the strength you have already shown. We will all fight harder to cure CF in Connor's name!

  13. I can not begin to understan the place you are right now, it absolutely breaks my heart... and there are no words I could begin to say, just tears.... Praying for your family.... and sending love...

  14. Stay strong Sarah. You are going through so many emotions, quite the roller coaster. You have a huge support system behind you. Praying and holding your family in my thoughts.

  15. I've been inspired to look at my kids with longer gazes, be grateful for our functioning lungs and bodies, and rejoice in the days I have with them--because of Conner and your words. And this has been happening since I met you... and now even more so. Thank you!

  16. Sarah your strength is beyond inspiring and your words could not be more true - life is love and thank you for reminding us all of this. Sending you and Conner and your family LOVE! Look after yourself, big hugs xxxx

  17. I am amazed at how you could put those beautiful words together in such a hard time. I wish so much that things could be different for Conner. My prayers are with him and your family.

  18. My thoughts...

    Praying for Conner and your family...

  19. Thank you for the reminder of giving thanks. I arrived here from Confessions of a CF Husband.
    Keeping you in my thoughts.

  20. You are an amazing woman and mom Sarah Jones. I am inspired and given strength through your courage. Although, I have never met you, we have many mutual friends who speak just as highly of you. I am sorry for what you are going through and although my sons medical needs don't even come close to what you have gone through with Conner..I know your pain of being scared and just not knowing. I will continue to pray for your family that through all of this you can find peace.
    Madonna Underland
    (a veteran LCC MOPS mom)

  21. Sending all of the loving prayers possible to you and your family, Sarah. You are a wonderful person and your kids are so lucky to have you.

    A friend of a friend,
    Karri Boyd

  22. HUGS & PRAYERS! You are truly an amazing woman and I appreciate you reminding me of what is truly important in life. Sometimes it is so easy to have pity parties...then we see there are others who are truly hurting. I am so sorry for your pain Connor and your family is experiencing. Your family is in my thoughts and prayers. Stay strong!

  23. I found you through a friend of mine, and after reading the first blog and watching the videos, I have not been able to get all of you off of my mind, and I come back to check on Conner almost everyday. I said it before, but I'm so sorry you all have to go through this. My son is almost 9 months old and I can't imagine what you or your family is going through. Stay strong for your little man. Send Conner our love. We'll continue to check back on his status and continue to pray for him! God Bless

  24. Hi Sarah,
    I found your story on Ronnie's page. I have a two year old daughter wCF, Izzy. Today, we watched Conner's montages that you had posted. I told her that Conner has Cystic Fibrosis too but that he was very sick and had to go to stay at the hospital. She said that she is sorry that Conner has an owie. She also offered to kiss it better. How I wish that all owies could be kissed better. Your faith in the face of such adversity has been an inspiration to my family. Your love for the world shines through your posts. I just wanted you to know that Izzy, Jordan and I are all praying for your family. My friends and family are all praying for your family and we will be carrying red balloons for Conner at both of the Great Strides walks we participate in this year. I will post pictures following the walks. May you and your family be blessed with peace and love.


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