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


Saturday, June 26, 2010

24 hours…

Wow…

what an amazing, excruciating, painful, relieving few days it’s been. Conner’s been breathing free and deeply for 24 hours now…and it’s just surreal. More for my memory than for your information I need to write out all that has happened. It’s been the most powerful, life changing few days of my life and I don’t want to forget one second of it. Ever…

My mom must’ve had mental telepathy or something…she called me Monday and said she had taken the rest of the week off and just wanted to help us out and be there for us. Sure I said, C’mon down…She arrived Tuesday evening.  Conner took a long bath that evening, and was leaning on the bathtub edge but oh he enjoyed the water. it really soothed him. Wednesday there was alot of running around for me since i had my mom to sit with the kids because Conner was in no mood for travel. I spent the day getting an A/C because it was FINALLY warm here and with Conners oxygen concentrator running 24/7 the house was staying pretty warm. He was running off and on fevers so I wanted to make sure he was comfortable. Wednesday evening I went to CF family council and after the meeting I sat down with Ben and Wendy from the team and discussed pain control issues with Conner and we exchanged good information and they gave me specific things to look for etc, but at this point Conner wasn’t great, but he wasn’t dire that would come later, unknown to me. I made it home and Connerman and I snuggled in my bed as we have been bed buddies for the past few weeks now, Brad has been sleeping upstairs with Hunter boy. Time very well spent in my opinion for both brad and myself. That night Conner was whimpering off and on and he even was pottying in his pants because it was too much for him to get up to go to the bathroom. His breathing was rapid but it was still on the “normal side” for him. This went on all night and we didn’t get much sleep at all (conner and I). He ripped his bipap off that night as well saying it wasn’t giving him enough oxygen. That was a first sign.

The next morning, well probably only about after 3-4 hours of sleep things took a horrible turn. and I mean HORRIBLE. His breathing was so rapid and so struggled that with each breathe his body shook the bed with the energy needed just to breathe. I called Ben first thing about the bipap to see if we could switch settings to help him out. we did. it still didnt work. I called Conners home nurse, Correna to come out to see him cus i wasn’t sure if this was really happening or if I was overseeing things. She came out and took one look at him and I just knew then that it was now not a matter of days weeks or months…but hours. I prayed at that exact moment that when Conner passed that it would be in the evening. Past the time most people are awake so there would be no nosy gawking neighbors, or commotion, our other small children would be sleeping and wouldn’t be scared when it happened. I’m so greatful that Conner gave us that one last amazing gift…thats our boy. at some point here conner looked at me in bed and just kept saying “why why why why” that was almost unbearable. I had no answer to soothe my son. so painful. Noontime came and Hunter returned home from VBS and brad and I brought him into our room where we were with Conner, and told him that today would be the day his brother would meet Jesus. Hunter understood very quickly, he laid next to his best friend and he didn’t want to touch him so he wouldn’t hurt him (although was reassured over and over he wouldn’t hurt him) and then ran outside to play. The family had already started arriving for help and support and to say their goodbyes. Dear friends were there coordinating our lives and house and things really were smooth.

Time from here is very foggy. The last time I remember was noon and that was because hunter came home from vbs. i think one of our dear pastors came out that morning as well, leaving vbs to be with us. to pray with us, for us, and he and conner had a very private prayer time. At this time forward Conner was mostly out of consciousness. He was there but not really there. He was only taking oxicodone and ibuprofen every 6 hours then. Brad and i were with him almost the entire afternoon holding him, talking to him, resting with him, loving on him. and every once in awhile he’d open his eyes and his eyes would be frantically searching for something so i’d tell him “mommy’s right here” or “daddies right here” and he’d settle back down. There was an hour that he was completely lucid. He all of a sudden woke up and asked to be moved to the couch in the living room to be with everyone. Balloons with a stuffed animal arrived just then from his dear buddy Mason Grahl in Wisconsin. Perfect timing. We’d been trying to keep his mouth moist and clean since he’d stopped drinking the night before. Conner asked for an Otter pop, he ate two. Then he wanted watermelon and he ate a slice, he wanted mini marshmellows, and ate alot, and then finally a banana. His last meal on this side of heaven. Such a great menu for him…

A little later he asked to be moved back to our bed. So Brad carried him back and we got him all situated and comfortable. His home health nurse Correna came back by to check on him and we talked with her about doubeling his pain med dose. She left and called Ben to talk with him about it, after checking his sats and at best they were 85 by then. Awhile later Ben called me and said that legally he can’t up the dose since nobody is in the home as far as a licensed nurse to be there for administering it. He suggested that if our ultimate goal now was to keep Conner pain free then we should make the switch to hospice. I think at this time of the day i was feeling a bit more optimistic or in denial of it all since conner had just been wide awake just a few short moments before. We decided to have Ben switch us to hospice.

BEST. CHOICE. EVER.

Here’s a bit of disapointment. As a CF mom I’m used to having insurance companies deny Conner a med like it’s a fun game, or make us jump thru hoop after hoop to get a prior authorization for things. Ben called hospice, made the referral, hospice then called our insurance to get the mandatory prior authorization and it went thru LIKE. THAT. that hurt my soul. Insurance is so backwards. Not the point. Anyway. hospice nurse came out at this time and was in our bedroom with brad, conner and i, as our bed had become our couch, table and bed over the hours of the day. i signed the consent forms and Brad and I watched as the nurse showed us how to administer the morphine and the lorazopam into Conner’s port. We then gave him his first dose as the RN was there since he was just about due for oxicodone. He was comfortable within minutes and was able to actually fall asleep. which was such a huge relief to us.The script was for those meds every hour at the small doses, or every 4 hours at the highest dosage prescribed. We stayed with the low one since he’d lost SO much weight and wanted to be cautious with narcotics. we hate them.An hour passed and we gave him a second dose. i walked outside to sit with family then for a bit since brad was in with conner. we alternated being in there with him so he was never w/o his mommy or daddy. i think this may have lasted around an hour or so. i have no clue.

What I remember next is that all of a sudden I looked at the clock in our room and it was 9:30pm. Conner was half hour past his dose of morphine. Almost immidiately I asked Sonja our dear friend and nurse to draw up the meds so brad and I could stay with Conner, he started moaning a bit. it wasn’t really like a cry, it was more of like a deep humming sound that started off very faintly and then grew louder and louder. It seemed to take Sonja forever with the meds and Conner in a matter of seconds had rapidly become very uncomfortable. I yelled for Sonja to hurry. Brad and I kept our faces low to Conners and kept whispering words of comfort and love into his ear. After what seemed like forever (but it I’m sure wasn’t!) Sonja came in and gave C the meds. A.M.E.N. After a bit the moaning stopped but then his skin had started paling and his fingernails were turning blue as well as his lips and his chest. His breathing became intense. It was very intense. It was heartwrenching to watch. I don’t wish that on the devil himself. Nobody should EVER see their child in such pain, distress and misery. Slowly people began gathering in our room with us. talking with conner, telling him how much they loved him. People came and went, I have no clue who all was even there. There was so much my friends were doing behind the scenes. They all were so amazing. So amazing.

It got to a point around 11pm where everyone was gathered around him and praying and conner would stop breathing then start again like 30 seconds later. After about ten minutes of this we asked everyone to leave. It was just Brad and I and Conner, just like the day he was born. Perfect. He kept fighting off death, I think more for us then for him. He kept stopping breathing and then a bit later would start again. Brad and i kept whispering love into his ears, telling him we’ll be ok without him, that we just want him to be out of pain, that it’s ok to go.  He just seemed worried about us. Bless his heart. He’s an amazing child. Brad and I were laying with conners arms on us. He was in the middle of us and we each had a hand and the other hand was either touching conner or holding each others hands. It was beautiful. really. powerful. The time came when he finally stopped doing the gasp for air after stopping for a period, this time his body tensed up, he squeezed our hands and instead of inhaling he exhaled. silence. then a short while later again he exhaled. He was gone. at about 11:40pm our firstborn son died. I knew he was gone but denial told me otherwise and so i asked brad if he was gone and he said yes. the pain that ensued at that exact moment is simply out of this world. indescribable. I’ve never, EVER nor will I ever again feel such deeply intense pain. Every nerve in my body was tingeling. My heart felt like it was going to burst from my chest it was on fire. The tears and moans were intense, loud and simply horrible. There simply are no words really. Brad then went and told the people in the living room that he was gone…they all came in. I heard voices but my eyes simply wouldn’t open. I kept screaming out to God, I remember screaming for someone to just turn off the oxygen concentrator since I heard it buzzing still on Conners face and it just infuriated me. They did. Whomever that was, thank you. I remember hands all over us, hugging us, rubbing us, consoling us…then I remember Brad telling me that I needed to open my eyes to look at Conner, He said that he was beautiful, looked so peaceful and pain free. I fought that for awhile, I simply wasn’t ready, and I was scared of what death would look like on our child.

I opened my eyes.

He was breathtakingly beautiful.

He had a Conner smile in the corners of his lips so I know what he saw as he was leaving this world was good. amen for that. He looked like an angel. truly.

We spent time with him, everyone said their goodbyes to him and gave him a kiss and then at some point the hospice nurse came in to record what she needed to for the death record. She did so without disturbing brad or I, a true gift. She was exceptional. Our funeral home that we’ve been making arrangements thru was called, and at some point a few hours after conners passing Rick Little showed up to take Conner.

THAT’S WHEN MY WORLD STOPPED.

The intense feelings of just him being in our home, in a wonderfully tailored suit at 2 or so in the morning. That made it all the more official. Brad and I gave Conner some last loves and kisses and left our room to the living room and told Rick we were ready for him to take Conner. What a man. He made sure to leave the stretcher outside, out of view. He didn’t put Conner in some horrible black zippered bag. He simply draped him in a white blanket, but I noticed that it was tied on either end so his body wouldn’t show. A true gentleman, where brad and i were sitting, literally being held up by friends mighty arms, he made sure to carry him out in such a way that we couldn’t see much of him. As he walked out of our home Brad and I simply cried, screamed, whatever. This would be my first night without Conner. Since I was with him at the hospital for each and every moment, and arranging all of his therapies, appointments and medicines for his entire life…seeing him leave this house that we bought for him to be closer to the hospital…my dreams kind of died. My dreams for my firstborn son kind of walked out the door with him. i simply couldn’t breathe. i was gasping for air. Brads head was buried in my lap, he didn’t want to see it all unfold. Our wonderful family and friends were all around us holding us together as best they knew how, yet allowing us to simply express our grief. Rick came in after he placed Conner in his vehicle. He knew our family. He knew and prayed for Conner. This hurt him as well. He gave us his hand and looked into our eyes and expressed his deepest sympathies and said “i’ll take good care of him” and left.

People were already called of course but there was one more call to make. To the CF doctor on call. Mary called to wake up Dr Wall and told him of Conner. Then she brought the phone to me…he expressed his deepest sympathies. He said in his almost 30 years of being a peds pulmonologist that he’s seen unfortunately many with cf pass away. He remembers vividly very few. He said Conner would be forever in his memory. He has a picture of Conner and his bingo buddy Matt (mary’s son with CF) hanging on his wall at the hospital.Since they could never be that close, we photoshopped them together and made a picture. Mary’s family did that. He asked about services…and said that he would let the entire team know and all of the nurses and respiratory therapists and child life people on floor 9 know. The school teacher even. I know that he did. At some point Brad and I fell asleep, him on the couch and me in our bed hugging Conners Grover doll. I was woken up by Hunter around 9am asking where Conner was. I said in heaven now..Hunter looked at me and then smiled and said “no more oxygen mom” then he ran off to play. thruout that morning there was a flood of help in our home. I stayed in bed for quite awhile before I would brave going out. Dr. Link among others called. I had a friend call the home health company to remove all medical paraphanalia out of our home. I wanted to see nothing of it. Bless their hearts, as I walked out of the bedroom dreading what I would face, all of Conners meds, nebs, tubes, syringes, needles, feeding bags, boost, EVERYTHING was gone. Out of sight. What was unopened was placed in a large box and already was arranged to be given to families with CF who have no or little insurance. We had just reordered pulmozyme which is expensive and even had almost a full months dosings of Cayston which is around $5000. I feel so good to know that more than $8000 of meds would be given to those with CF who need it most. Conner would be thrilled. Obituary was turned in and will appear in Sunday’s paper in town, in Olympia, Vancouver and the Long Beach Peninsula as well.

the rest is simply details…

Dear friend so close to our hearts Dana, gave us the most amazing gift…she took pictures of us with Conner on his last day on earth…these will simply take your breath away. We will cherish these for a lifetime.

_MG_7688 Moms hands with Conner

_MG_7694-1 Mom with Conner, my tears running down my hand.

_MG_7704 dad and son

_MG_7707

_MG_7715 Conners hands on daddy

_MG_7736

_MG_7743

_MG_7712

just as I kept whispering in Conners ear…

Love Love Love

Sarah

85 comments:

  1. May the God of all comfort continue to keep you and strengthen you, holding you up with his mighty hand. I am praying for you.

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  2. Praying for all of you... Again thanks for sharing Conner with all of us. This post brought many tears to my eyes. Just know that we all love you. You and Brad are such great, wonderful and STRONG parents. LOVE LOVE LOVE

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  3. There are no words. "I'm so sorry" doesn't even scratch the surface for the depth of my grief for you and your family. Just know that all over the country (and world) there are people thinking of you and conner and your family and sending you strength at this impossible time.

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  4. thank you for sharing such an intimate time in your lives...praying for you all

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  5. Thank you for your vulnerability, Sarah. It took lots of guts to share the depths of your soul. I consider it a priviledge to have been part of your struggles the last few months through our connection on FB and our roles as mothers to children with CF. I pray you will truly feel the love and comfort only our Holy God can give you.

    From my heart to yours----love,love,love,
    Linda in Louisiana
    Mother of Mandy (with the angels and Connerman) Kyle, Hunter and Brady wo/cf and Jamie 24 yom w/cf

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  6. I wish I had words for you, but I have nothing. I cannot even begin to imagine the pain you're going through right now. The pain, the ache, the misery, it is all too much for me to fathom. Thank you for sharing your precious Conner with us and for being so vulnerable and real. You are an amazing lady and Conner is so blessed to have you as his momma. Praise God that he is dancing with the angels and walking through streets of gold.

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  7. God be with you all. As Conner watches over you forever remember the place he is now in. Pain free, breathing easy, running & playing in a way that he once only dreamed of. Your family will forever be in our thoughts & prayers.
    Sarah, thank you for sharing with all of us this wonderful, eye opening, life impacting blog. As you stated in your first post this blog was for you to be open & honest with you. So that you will never forget. Bless you for sharing it with all of us. God Bless you Jones Family.

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  8. God Bless You and Your family.. You are all in my thoughts and prayer.. You are a wonderful Mother.. Thanks for sharing your amazing son with us.. He is Breathing Easy....

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  9. Dear Sarah

    I have never felt so overwhelmed with sadness since losing my own dear son to this horrible disease. Thank you so much for sharing this final chapter of your dear Connor's life with us.

    How I wish I could wrap my arms around you and tell you everything is going to be ok and little Connor is so happy that he is breathing with ease now. He's surrounded by loved ones and is watching over you now and will do so forever more.

    When you are able to, Sarah, write, write, write as much as you can about your dear Connor. Little scars from falls, his favourite foods, colors, the funniest things he said......anything and everything you can possibly remember. I was given this advice when my son passed and am so glad that I did make such a list. Oh what memories......

    My heartfelt condolences to all of your family.

    Sandy
    (((hugs)))

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  10. Thank you for sharing with us, Sarah. I know recording these days will be a comfort to you. It helps us know how to understand other's pain around us. (I don't have a child with CF, I have CF myself.)

    My prayers are with you.

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  11. What courage to share your last earthlty day with Conner with us...people from across the country that are praying for you. I am honored to lift you up in prayer....my life is forever changed because of your story.

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  12. What a beautiful and perfect gift you have given to us, Sarah. From one CF mom to another, I will be forever grateful. Thank you. You are loved.

    Fly Free, Conner! We love you!

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  13. Sarah, thank you so much for sharing the end of Conner's journey with us. We all love him so much! I know to you that probably sounds funny and you are probably like "who are you and how could you love him when all you have seen or heard about him is from what I have posted?" Well, it was enough. He captured our hearts with his beautiful smile and couragious heart.

    As I was reading this post, I couldn't help but feel like I was there with you the whole time. I cried. I thought of my own CF son. I cried some more. Your words touched me.

    You are a GREAT mom! Conner was so lucky to have YOU and Brad! You did your best and now God is doing his best until you are reunited again. He is in GREAT hands still... breathing like he never breathed before, laughing like he never laughed before, playing like he never played before with anticipation to show you some day and say "See Mommy! Look at me! I was fine this whole time I was gone! You had nothing to worry about! I'm better than ever!"

    With much love and continued prayers,
    M
    www.acure4lilchris.com

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  14. Conner is an angel and a hero to everyone who knows his story. I know it doesn't even halfway dull the pain, but know that you have thousands thinking of you and praying for you and with you. My 2 co-workers and I wore red in his memory yesterday and proudly told his story to anyone who joked that "we'd gotten the memo". God bless you and your family...You know God already had him by the hand.

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  15. prayers for you and your family going up from Nebraska. you are an incredible mom.

    Chris

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  16. many many many hugs to you all from New Zealand.. rest peacefully now Connor xx

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  17. still praying for you all
    LOVE LOVE LOVE <3 <3 <3

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  18. May God bless your family with comfort and peace. Thank you for sharing your very personal story...it touched my heart.

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  19. My heart aches for you. I don't know that there could be a harder trial to endure in this life.

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  20. II Cor. 12:9-10
    But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

    That verse helped me today.

    Much love.

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  21. I am holding you and your family so tight in my heart right now. The pictures of you with Connor brought memories of holding my sister as she passed away. We were both born with C.F. and were 16 months apart. She was my everything and I related to every word of your post, from the hospice to the last breath. My mom and I sandwiched her in our love on her bed and held her as she passed and like you although it was the hardest moment in my life, it was also beautiful and full of love and hope and joy that she would not be suffering any more. That was 15 years ago and I still think of her every day and am so grateful for the lessons she taught me and for her presence that is still felt often. Love and prayers for you and sweet Connor, Sharlie

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  22. Thank you for sharing this experience. I have never lost a child, but I have lost a mom and a step-mom to cancer. There is something special about being present when someone goes to be the LORD.
    I continue to pray for you and your family. Please keep writing to let us know how things are going for you all.
    You have some very special friends and family.
    God is good.

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  23. I heard about the loss of your son from Frank Walker, an old High School friend. What a heart breaking but incredibly beautiful story. Thank you for having the incredible strength and bravery to share Connor's story with us. The pictures are incredible.

    Connor and your family will be in my thoughts.

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  24. I only found your blog about a week ago and have been reading it...daily...praying for you all. I am so sorry..although that doesn't even begin to scratch the surface. Your story is so beautiful...and I truly am blessed to have found it. Praying for you...

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  25. The Jones Family
    Thank you for sharing, you have experienced a beautiful angel in your life. Now he is in heaven for all of us to be blessed by. I can hear his red angel wings now. My prayers go out to you. I will share your writings with all I know!Hugs
    The Hasson Family

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  26. Thank you for sharing you experience. My heart goes out to you. Wishing you peace and love and strength. You will forever be in my heart and prayers.

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  27. God is holding him now.. just waiting for you to come take him. He truly has angels wings. God Bless your family.

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  28. Thank you for sharing these final moments with everyone. What a blessing for me to read it. I'm in agony for your family... peace to you.

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  29. I sit here with my oldest, crying as I read your experience. You are an amazingly brave family. Thank you from the bottom of my heart for sharing your story! You are all in my prayers. Breathe easy, sweet Conner!

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  30. My heart is aching...I know this pain, I wish that it had turned around. But I know that he is happy and breathing now, running like he never could. I wish I had something helpful to say, I guess all I can say is I pray that you find peace and know that he knew how much you love him. Know that you are all in my prayers. Breathe Easy Conner! You were so brave!

    Love Victoria and Garran

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  31. Absolutely beautiful photos, what a wonderful gift, what an inspiration Conner's life was and will continue to be...thank you for sharing such personal moments....you are indeed a wonderful family, I feel blessed to have followed your journey xxxx

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  32. I, too, feel blessed to have been reading and following your journey. Even if just for the last several weeks.

    Your son is a true inspiration. May God shower you all with comfort, healing and grace.

    Be gentle with yourselves.

    jade~ vancouver, bc

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  33. Sarah, thank you for sharing Conner's last day with us. I feel honored to be a part of Conner's life. I am so unbelievably happy that Conner was awake and feeling well when our present arrived. What a miracle in itself. Mason was so happy that he was able to enjoy it. The pictures your friend took of that day are amazing. So beautiful and precious. Conner's journey is not over, but continues on in so many hearts. Even stranger's hearts because of your words and your selfless love. You and Brad will be in our prayers. Hugs!! Love, Anne

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  34. Thank you so much for sharing these very intimate details of your final day with Conner. May God wrap your family and friends in comfort in the coming days, months and years.

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  35. My heart is breaking for you and I am in tears as I read this. I somehow found your blog on Wednesday. Conner is amazing. Please know my thoughts are with you.

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  36. Thank you for sharing Conner's story, your story. It was beautifully written, full of love for your precious son. My prayers are with you and yours, that the Lord will mend your hearts and bring you comfort.

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  37. As I read your post I cried ~ still am. Thank you for sharing these tender moments with us here. I know that your words will have an impact in my life as a mother of a beautiful son with CF. My journey has just begun in the last six months.....as this chapter in yours has come to a close. My home is filling with CF medical equipment and meds as yours is emptying. My goodness what a brave and special boy Conner is. He rests easy now with Jesus. I've only been following you here a short time. I want to begin at the beginning of your story. God's comfort to you all.

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  38. What a beautiful gift you have given all of us CF mamas, to know that even in the end there is beauty. Thank you. I feel so privileged for having witnessed your lives through this blog. Sweet Conner, breathe easy. Love to your family. xoxo Elise

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  39. Oh man that post was something out of this world. I cannot imagine being you and knowing that it was for the best and yet not wanting it to happen. I hope typing it out was somewhat cathartic. I wish there was something articulate and noble I could say to comfort you, but I don't know what. I suppose if I knew you personally I'd hug you...so *hugs* - To ppl I care about I always say hearts... so hearts for you and your family. ♥sss

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  40. PS. I love the gift of pictures your friend gave you. They are beautiful... It was very giving of you to share those.

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  41. You are an amazing woman. While you admit you wrote this more for yourself, I thank you so much for sharing with us. You have been so open with your journey. Please know we are all still here with you. This CF community will always lift you during your darkest hours. I continue to pray for your peace and comfort during this difficult time. I ask God to hold you and the rest of your family close.
    Prayers and hugs from NJ.

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  42. The tears stream down my face as I read this, my thoughts are with you and your beautiful family. Thank you for sharing this with us and the beautiful photographs.
    Conner is very lucky to have you as his Mummy and he is smiling down on you all, he is now at peace. <3

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  43. Love and hugs and kisses to your whole family, Sarah. You are an amazing, loving person.
    The Boyds

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  44. Thank you so much for sharing Connor's journey with us. It was an honor to read. I'm a pediatric palliative care student and know I will take this with me in my future work. On a personal level I have also lost someone to CF so send as much love as possible - from one member of the CF community to another. I also think what Connor saw as he moved on was good. I feel he would have been embraced in the loving arms of not only his ancestors but also those who had CF during their time in this world but breathe easy now. Much love to you all.

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  45. What a Beautiful post! Little Conner was So Blessed to have wonderful parents who Loved him deeply! And I can see he touched your lives so deeply! May God streghten your family in the days ahead! God Bless and I will be praying for ya'll!

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  46. Finally got the courage up to read the latest blog entry. Mama, you are unbelievable. How can anyone be so strong and have so much faith? We can ALL learn from you. My eyes are so blurred from the tears. My heart aches for you and your family. God Bless you and R.I.P. sweet Connerman ♥

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  47. I am so, so thankful that Conner is not in pain anymore. Thank you so much for sharing your love for him with the world, and I truly hope that writing the words down help with the pain. I will be praying for your family during this hard time.

    Much love from a Longview native,
    K.

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  48. Wow! What an amazing entry. I am still in tears from reading it and want to thank you so much for sharing Conner with the world and sharing all of these experiences. I know that you have helped so many just with your words. I truly believe that Conner is in heaven watching over all of you and breathing with no effort and no pain. My thoughts and prayers are with you and your entire family.

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  49. Prayers and love from a Mother in Tennessee that thinks you MUST be the most amazing mom ever~

    My words would never be enough. Please know that I am praying for you.

    ~Julie

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  50. Love, Love, Love...Conner is someone I never knew but will remember forever.

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  51. Thank you so much for sharing this beautiful story.... I do not think I have ever read such a beautiful story in my life.

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  52. I'm angry and utterly heartbroken that you ever had to write such a post, but I'm also incredibly touched and grateful that you did. Thank you for sharing everything with us. Conner's story is such an inspiration to me. Much love to you and yours...

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  53. Thank you so much for sharing Conner's story with us. My heart is in a thousand pieces for you and your family. God Bless You.

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  54. I didn't even know him, but I feel as though he's touched my life. I wish you and your family the best. He truly is an angel.

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  55. Sarah, thank you for writing this out. I know it was for you but I feel blessed for having read it. I am in tears sobbing for your family. Your love for your son and your family is incredible, but your love for God is even more astounding.

    Thank you for sharing your journey with us. I am so sorry for your loss, I cannot fathom what you are going through, you are in my prayers.

    Thank you for letting us get to know Connor.

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  57. Though I only just came across Your Blog, Your Story has had a Profound effect on my life. Your family and Conner have shown the true meaning of life, love and Living. Know that Conners life has and is changing the lives of others around the world. My Brothers son Phoenix Was Diagnosed with CF when he was weeks old, hes is now 2 years old. Thank you for sharing, My thoughts and prayers are with you.

    Candace Johnson, Huntville, Ont. Canada

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  58. Dear Sarah & Brad,
    How beautiful & special you are. It's no wonder that you had such an amazing son. Conner will be forever remembered because a mom's love chose to share her son's life with us.
    I cried as I read this entry into your journal and can't help but think of my own grandson, Lil Chris.
    When we have a relationship with Jesus Christ, there is a hope & peace knowing that one day we will see our loved ones again even though there is much pain now.
    Thank you for this beautiful entry and for sharing your precious son's life.
    Much love & prayers to you all
    Betty Ann (from NJ)

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  59. I am wiping away tears - my son is sleeping in the other room - I want to wake him up and hold him. You are one of the strongest women I know - you truly are an inspiration to me. You are extrodinary!

    My thoughts and prayers are with you.

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  60. The the Jones family:
    Please accept my deepest sympathies for the loss of your precious, beautiful, strong, adoreable son Conner.
    Thank you for sharing your incredibly love for Conner, through his very last breath. I am honored to know his story through your blog and facebook. I am 38 and have CF, and don't understand why a child so young must suffer so intensely and succumb so young to this disease. The love and closeness of your family, even to the last photos, shows how the energy of love is what made Conner's life worth living, even in 7 short years. All my love and prayers, Isabel Stenzel Byrnes (stenzeltwins.com)

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  61. I am so sorry for your loss, I will be praying for your family. I also thank you for sharing, reading about your last moments was so touching and intimate. I can tell from your writings what a wonderful mother you are, how lucky Connor was to be blessed with you.

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  62. I know there is no way you will get to read all of these, but I wrote a tribute to Conner that @nursekelsey called "wonderful," so I thought I'd share it for anyone who wants to read it.

    A Brief Pause in Memory of Conner Reed: http://www.cffatboy.com/?p=1062

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  63. Weeping for you as I read this & reflect upon your words, your time, your son. I want to thank you for sharing Conner with others. This post was simply beautiful. The pictures were breath-taking. The story, heart-wrenching. My love & prayers go out to you & your family. Am so grateful to the Lord that he has surrounded you with tender, caring, and helpful family & friends. While I know there is that relief that Conner is no longer in pain, and that hope that rests in know he is with our Lord Jesus, I also know that your hearts must be breaking. I cannot imagine your grief. Just know that one more stranger is out here praying for God's grace & tenderness to rest upon you as you begin this new journey of mourning, grieving, and (in due time) healing.
    Having lost my nephew, I know nothing will go back to how it once was, that it will be a new you (individually & as a family) that emerges from this. My heartfelt prayers are with you.

    PS~I heard someone once say, that when we are born, God breathes His life into us~that first intake of breath; a kiss from God. And when we pass, we exhale out, giving that one last sigh of breath back to God, kissing Him back, before we see him on the other side. How intimate for you to be there as Conner kissed his Lord.

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  64. There are no words. My heart breaks for you and your family. I just learned of your blog today through another blog, and have scrolled back through some of the older posts. How kind of you to let us all get to know Connor. Of course, that is just a fraction of how you knew him, but from what I read, he was a magnificent little boy, wise beyond his years. And what a lucky little boy to have a special mother and father like he did. You loved that little boy as much as possible, and that love made his short life so wonderful. Your angel will be looking down on you from Heaven. It won't be the same. You won't be able to hug and kiss him. Feel him. But, when the shock passes, and the grief calms a bit, you will be alone, and you will suddenly see that you are NOT alone. Connor will always be with you.

    Like I said, there are no words. Nothing can ever FIX this. It is unfixable. But you will grow stronger, day by day. You and your family are in my thoughts and prayers as you continue to navigate through this difficult time in your life. It will get easier. it will NEVER EVER be the same, and you will NEVER EVER stop loving and missing that little boy. But one day... hopefully sooner, rather than later, you will smile first, rather than cry, when you think of him.

    You are in my prayers.

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  65. Yours posts are so touching, they have changed my life, I am honored to have been able to read them and I thank you for sharing them. Though I never knew Conner, my heart aches for him, I tear up when I think of him and your family. No more pain...AMEN I hope the days ahead get easier with time and that his little brothers remember the smiling little Angel, that I have seen in all your photos. Your last photos have truly touched me deeply, I am so glad you were able to preserve your final moments with Conner, on film. The Jones Family will forever be in my prayers.

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  66. Sarah, we've never met but I feel like I know you and your family. I've cried so many tears for your family, and will continue to pray for all of you. Thank you for sharing your son with us, what a beautiful little boy. Team Asher all wore red ribbons for Conner at the Great Strides walk, and we've asked so many people to keep you in their prayers. I wish there was something we could do. Please let us know if there is. Lots of hugs and love to you all...

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  68. My heart is breaking for you. I will treasure every single moment with my children.

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  69. I just wanted you to know that we are thinking and praying for your family today.

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  70. We've never met, but little Conner has touched my heart so deeply. I cried so hard after reading about his last day on earth, trying to comprehend how your heart must be breaking as a mom. I immediately went and snuggled my 5 year old - never to take another moment with him for granted. I can't get Conner off of my mind today, I'm wearing red in his honor, and I can't wait to meet him someday in Heaven. Conner is basking in the presence of His Creator, running on Heaven's shores, breathing celestial air, holding the hand of God, walking in Glory and calling it HOME. I bet he and Parker Underwood are having a wonderful reunion. Our hope is in the Lord who promises that this time of separation is only temporary - soon and very soon we will have an eternity together! But until then, you're in my heart and in my prayers.
    Margo
    Orlando, FL

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  71. Praying special prayers of comfort and healing for you and your whole family today. Praying for God's grace and peace for you always.

    My grandson is 2 years old and was diagnosed with CF at 9 months. Today he is happy and healthy and we pray that he will continue to be healthy for a long, long time. Through you our family has been inspired to do all we can to fight CF and find a cure. Thank you for your wonderful inspiration!

    Love and prayers always -
    Sheryl ("Gram" from TX)

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  72. We are wearing red today for Conner. We made red bracelets to wear everyday for Conner too. I bet Conner loves it!

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  73. So sad for your family. Thank you so much for the story though, it really makes in impact to read what you have gone through versus just always hearing about CF patients passing. Wearing Red today for Conner. Lots of love, Kristen, sister of CF patient Kelsi

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  74. hi just wanted to let you see this...http://www.facebook.com/home.php?ref=home#!/pages/For-the-LOVE-of-CONNERMAN/139037866108647

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  75. Thanks for yours and conners story. It really touched me. Praying now for your family at this awful time of loss.

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  76. I am so sorry for your loss! This post is beautiful! You are amazing!!!

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  77. To Sarah and Brad,
    This is the third or fourth time that I have read this, and am still in tears. Thank you Sarah for being so grounded and strong and being an excellent example for all mommies. Your story, your expressions have touched me so deeply, despite never having had the priviledge of meeting you or Conner. I have to tell you that this has awakened me to alot of the things I take for granted with my own little ones, and I have to say that I will do my best to stop taking those things for granted, and like you said in another post, getting upset with my children for small things, instead of appreciating the bigger picture. I am truly humbled. My prayers are united with others for you,and I offer you love and support of another mother, and human being. I don't know you, but I offer my help if you should need in the future. May God continue to bless you. Love, Ury.
    (ury@sheridanayala.com)

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  78. I am so sorry for your loss. I thank you for sharing your story. I never knew what CF does to children and I am so sorry that your son suffered such an awful disease. Your story has deeply touched me and I will be praying for everyone dealing with CF and that someone would find a cure soon. I will pray for your family as you must now live life without such a precious member of your family. I pray God's blessings upon you.

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  79. I am so sorry for your loss. This beautiful story made me cry like a baby. I am truely touched. Your son is one of the reasons I started making Bracelets for a Cure. You should be very proud. Will all the love. Kirsten

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  80. You don't know me, but I know a friend of a friend of a friend, etc, and stumbled upon your blog. The story of Connors passing will stay with me forever. Your son is an inspiration to us all. I send my heartfelt love and admiration to you and your husband. God bless you and all three of your sons.

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  81. Sarah,
    You do not know me, but Connor's journey has me in tears. There are no words to say how much your story means to me. I was a sister to a brother who lost his fight with Smith-Lemli-Opitz back in 1991. I miss him everyday. Your story helps me in my own situation with my mom and how she has coped for a long time with the loss of her first born.

    You are an amazing woman, your angel will always be looking down on you. God Bless you Sarah and God Bless your family.

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  82. I need your help with something. My 23 year old sister just passed away from CF and I read here where you donated your son's medicine and equipment. We have plenty of brand new meds and a Vest machine that we would like to donate but we are having trouble finding where we can do that. Can you help me? We want to get rid of all these things as soon as possible. Please email me at krystalbobbe@hotmail.com . Thank you so much...I admire your courage and understand your pain all too well now.

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  83. I am the father of a 9 year old son and 8 year old daughter who have CF. Live in Canada. A FaceBook friend linked your blog for CF awareness month and I have been reading through your incredibly painful journey. My heart has broken for you and your family today. May God continue to bring you peace and give us all strength to keep fighting this thing until the day CF becomes a footnote in medical history.

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