Wednesday, 22 May 2013

Hope's Perfect Heart

Yesterday evening, Hope finally received her perfect heart.  She fought hard and waited patiently for God to provide a new heart for her here on earth, but last night He chose to take her home to Heaven instead.  It happened quickly and was not only shocking, but truly heartbreaking for our family.

On Tuesday morning I arrived at the hospital and found that Hope was more lethargic than the day before.  She did not look well and was fighting to stay awake.  She threw up a little and had some diarrhea as well as poor colour and no energy.

The doctors decided to draw some bloodwork and the initial screen showed that her inflammatory markers were sky high, likely the sign of an infection.  As soon as she spiked a fever, antibiotics were started which required a new IV and an echo of her heart was ordered.  The culprit was thought to be a line infection, something we have battled with Hope many times.

In the afternoon they made the decision to send Hope to Edmonton.  Her heart was weak and this infection would make it more difficult for her to fight.  They felt she would be safer in Edmonton.  Shawn and I talked on the phone and he felt that it would be best for me to go up with Hope and he would follow me on Friday with Sadie.  We've done this so many times and assumed that this trip would be long and it was best for him to stay behind to work as much as possible.

The doctors decided that with Hope being lethargic, it was safer to transport her intubated.  I was not prepared to watch them do this alone and called Shawn to come right away.  He arrived shortly after the tube was in and was able to sit with me.  We left the hospital at 4:15 pm to get home so I could grab some clothes before leaving for Edmonton.  A friend had agreed to drive up with me so I wouldn't be alone.

There was terrible traffic leaving the hospital and it took 45 minutes to get home.  I started to get very impatient and almost crashed our car at one point in my rush.  Shawn asked me to calm down and I disrespectfully refused.  I felt a strong sense that I needed to hurry but could not explain it.  Once I was home I had everything packed and ready to go within 30 minutes and was on the road.

Upon entering Edmonton outskirts, the doctor in Edmonton called to ask where I was. I told him and he told me that I needed to speed up and get to the hospital immediately.  He told me that Hope had turned a bad corner and was fading quickly, they weren't sure if I was going to make it there in time.  I called Shawn in hysterics to hurry to the hospital.  I was so hysterical he asked to speak with Katie as he could not understand what I was saying.  I raced to the hospital and left Katie and our car at the front door as I ran through the hospital.  As soon as the elevator doors opened to take me up, the doctor called again to tell me to hurry.  I ran down the third floor hallway to PICU and found the doctor waiting at the door for me.  He told me they'd been doing chest compressions on Hope for 13 minutes and had lost her, but her pulse had come back very weakly.

I stood next to my little girl all alone, with a room full of doctors, as they told me there was nothing more they could do.  I screamed 'No' over and over as I stroked her face and lay my hand on her tummy that continued to go up and down with every breath.  I called Shawn again and told him we were losing her and that he wouldn't make it.  He asked me to kiss her.  The surgeon came to see me and told me that he would take her to try ECMO (life support), but it would take 2 hours to even attempt to connect her because of the clot in her neck and he was positive she didn't have two hours.  They began giving her shots of adrenaline every 30 seconds to keep her alive. Finally they told me that she had come back long enough to see me, but was now only alive because of the adrenaline.  They stopped giving it to her and told me that slowly her heart would stop beating.

They agreed to let me hold her and moved a couch into her room and took out the bed.  I asked them to bring in my friends; Graeme, Carissa and Katie from the waiting room.  I sat with them and cried and held my girl as her heart rate slowly dropped for the next hour.  At 9:30 they came in and removed the breathing tube because her heart was nearly still.  At 9:45 the doctor came in with the stethoscope and told me she was gone completely.  I held her just the same and knew that I would not give her up before her Daddy got to hold her one last time.

Shawn and James arrived at 10:30, shortly after my mom arrived from the airport as well.  They were all able to hold her and say goodbye one last time.  The staff came and took plaster casts of her hands and feet for us.  We made foot and hand prints and were able to bathe her ourselves and wrap her in a new blanket.  We held her in that cold room until midnight when a security guard came and walked Shawn and I down to the morgue with our nurse.  At the door of the morgue, Shawn handed our baby girl's body over for the last time.  We knew that she was already with Jesus and although her body would spend the night without anyone there, her soul was with so many in Heaven.

It was late, but I couldn't bear the thought of waking up in Edmonton to this sick reality.  We made the drive home and crawled into bed around 3:30 am this morning.  I thought I would sleep forever and avoid this nightmare that is now our lives.  I woke up less than 3 hours later and soon felt the bed shaking from Shawn's tears as he thought about telling Sadie today that her sister is gone forever.  How do we explain something so difficult to a child so innocent and loving?

We are shattered and broken.  Her life was full of purpose and God used her to reach so many.  Her fight simply seems so unfair when she would never get a chance to run, talk or laugh with her sister here on this earth.  This journey is now beginning again for us, a journey of grief.  Today I will have to call a funeral home and plan a funeral for our child, a task no parent should ever have to do.  Today the reality will set in more deeply as the shock fades.

We believe that God is good, even when he doesn't give us what we wanted.  We believe that He is loving, even when He takes those that we love.  We know that we will spend eternity with Hope and that she no longer has scars, clots or damaged organs.  We know that she will never be poked again and that she is running free.  Yesterday we got our freedom back as well, freedom from this suffocating journey and all we want is to be trapped and have that freedom removed again.  Please pray for our family.

266 comments:

  1. I have been following your journey and praying for your family almost from the beginning. I just lost a pregnancy this past sunday afternoon. Losing a child is never easy. My husband and I will continue to pray for you guys as you walk through the grieving process. So, so sorry.

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  2. Amy - there are absolutely no words that can be said to make this any less of a nightmare. I find your faith truly amazing & know that you & Shawn will be able to draw on that over the next hours, days, months. I hope it's some comfort to know how Hope & your family touched so many in such a short time. My prayers are with you all.

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  3. I am so very, very sorry for your loss Amy.

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  4. I've been following your journey & praying for your family through my sister, Kathryn Elliot. I'm so sorry for the pain you are walking through now and asking God to be extra close to you and your family.
    God bless you,
    Angie

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    1. Dear Amy and Shawn:

      I am crying with you. Be assured of Ian's and my prayers for you all. I will pray that God will come to you both in many ways over the next weeks and months to comfort you as only He can.
      Gerda

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    2. Iam so very sorry your family has gone through so much pain but your little angel did bring you joy and sunshine for just over a year. God is good and does have a plan. Believe in him and you will find peace.

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  5. I have been following Hope's story through Amber Chatten, a cousin of my boyfriends. I'm so so sorry for your loss. Last night, when Amber let me know of Hope's journey to Heaven, I dreamed of a little girl smiling, and woke up with goosebumps this morning. My thoughts, prayers and whatever strength I have are all with your family. Rest in peace, sweet Hope.

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  6. Amy,
    a friend shared Hope's journey with me and I'm sorry to hear that you are now without her for a time. Our friends lost their little girl last weekend to HLHS after only 15 days with her. I will be praying for your family that God grants you peace and draws you closer together and closer to Himself.
    Sarah from http://sudryandspecific.wordpress.com/
    (You can see Noel's story (our friends daughter)here if you wish.)

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  7. So sorry for your loss. We will continue to pray for your family.

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  8. You will be uplifted by SO many in prayers for days, weeks and years to come. This is one hell of an awful journey :(

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  9. Thank you for sharing your raw and words of your life's journey. How my heart aches for you, your dear husband, and yes little Sadie. Prayers will continue to sustain you all....I am so sorry for this loss. Can't even begin to imagine your pain, your feelings of deep despair....
    May God be near you, love on you, shelter you, bring you peace, and give you the strength that you need to walk this new jouney of hope.
    What a wonderful little girl you had...she was so precious, beautiful, and sweet. thanks again for sharing all the feelings that you have had in this journey...you authenticity has ministered to others, and we Praise God for allowing us to pray, watch, read, and feel a little of what you have all gone through.
    May God bless you all....

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    1. Could not have been better said. My thoughts exactly.

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    2. Agree totally & very well said. Amy your pain is felt by so many of us who never knew you personally but through this blog you made us all one. May God be with you all through the years. Thank you for sharing your story , helping so many understand how good our God is , letting the world know how important organ donors are and bringing out the incredible reality of all of us just how lucky we are. You are such a wonderful inspiration to many. May You , Shawn & Sadie have beautiful memories of Hope as she lives forever within your hearts. R.I.P. Angel ... HUGS & LOVE TO YOU ALL.

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    3. I am so sorry for. your loss,my prayers are with you and your family

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  10. No words can comfort. Sending prayers from Belfast. Laura

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  11. My heart is broken for you and your family. I will continue to pray for you as your journey continues. May God wrap His arms tightly around all of you.

    Gayle

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  12. I pray that the loving arms of Jesus that are holding little Hope in heaven will also surround you, Shawn, and Sadie and hold you tight.

    God Bless
    Rebecca van Arragon (friend of Melanna Heebner)

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  13. I've been following your journey through a friend. Your family has been in my thoughts and my heart. I am deeply sorry for your loss. Hope was a blessing for all of us. She has taught us all so much! I can't even begin to tell you how much you all mean to so many. We will be praying for your family. May God be with all of you in your time of sorrow & grief.

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  14. Hi Amy,
    I have been following Hope through a friend of mine for awhile, my youngest daughter is just a few weeks older than Hope and I cannot imagine what you and Shawn and Sadie are going through. I have been praying for each of you and will continue to through this time of loss. My heart goes out to you! Rest in God's comfort.
    Sarah

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  15. thank-you for sharing your story with us. I've been following it and praying for your family since a Burlington friend first shared it. Sorry for your loss of your precious little one. Will continue to pray for your family in the coming days.

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  16. A friend has been posting your blog on her facebook and I have been following it for some time now and praying for you and your family throughout. Thank you for sharing your heart with so many, God has truly used you, Hope and your whole family through this. Thank you for sharing your heart with so many! I am so sorry, and am praying for you.

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  17. Sending thoughts and prayers to your family. ((hugs)) I'm so sorry for your loss

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  18. Prayers and so very many tears for you all. Thankful that Jesus' arms surround your sweet baby now...that she is free from pain.

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  19. As people have written above, there are no words but just wanted to send you some support. Thinking of you and your family.

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  20. I have been following after Caleb's parents linked to one of your posts. I read through everything from the beginning this past weekend.
    I am so sorry for your loss. My thoughts and prayers are with you, Shawn and Sadie.

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  21. I have followed your blog from the very beginning. I will continue to think about, and pray for, you and your family in the days and weeks ahead.

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  22. Sending you strength and love as you mourn the loss of your precious Hope. We've never met but I am inspired by your strength, the strength of your family and friends and most of all by the strength of Hope. She has touched so many lives and will continue to do so.

    May you find the strength to get through the next hours, days, weeks, months.

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  23. I am so very sorry for your loss. I cannot imagine your heartbreak, but join in with you in the celebration of where Hope now resides.

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  24. My heart hurts so to read this. A Mama should never have to bury her baby. I am thankful Hope has her perfect heart now, but my heart aches for the loss and sadness you and your family must be experiencing.
    I am praying for you guys as you walk through this true valley of darkness.

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  25. I am so sorry for your earthly pain today Shawn and Amy! I can not even begin to express to you how heart broken I am for your family! God will carry you, you know this....but that does not mean the pain will not be there for a long time. We will continue to pray for your family as you walk to healing and peace! God is cradling Hope today and for always! Praise God for his perfect plan.

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  26. Although you don't know many of us, we've all prayed for you and been touched by your family's journey. I am so sorry for your loss.

    (((hugs)))

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  27. I have followed your blog though a friend for many months. I have thought about and prayed for Hope often. Please know that my thoughts are with you and your family. I am so sorry for your lost. May it bring you some comfort to know that Hope is at peace.

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  28. Chrissy & Mike Eshelby22 May 2013 at 07:55

    I am very saddend that you have to experience the loss of a child in your life time. The strenght both of you have shown during this journey has been incredible. Mike and My thoughts will be with you today and the days to come. Lean on your family for support as they surround you. Always remember that she is in a better place, has a whole heart and what she has taught you and brought to your life in the last year. XOXO Chrissy & Mike

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  29. I have been praying for your little girl and you for awhile now, I am just so sorry...praying you will find peace and strength in HIM as you continue to walk this journey. Your little Hope has touched a lot of lives, and will continue to do so. May you feel HIS arms of comfort around you today and always.

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  30. Grieving with you, though I can't begin to know the range of emotions you, Shawn, Sadie, and your entire family are feeling. Thank you for sharing your life and your family's love for Hope and for the Lord. God has her, He has her. Oh Amy, I am praying for comfort from our great God who comforts us in all ways. May his love be ever present and ever evident all around you, always. I am so sorry for your loss. I will continue to pray for you and your family.
    With love in Christ,
    Karen

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  31. Amy, Shawn and family - there are not words - just hugs and prayers as you mourn the loss of your precious Hope.

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  32. Karen Richardson22 May 2013 at 08:08

    Oh no... I am so sorry and deeply saddened... Praying that the Father of compassion and God of all comfort will comfort you in all of this...that you would feel surrounded by His everlasting arms.

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  33. Praying for your family. Praying that God will give you His peace that makes no sense in this time of debilitating grief. Feel his arms around you as He sobs beside you. Know you are loved.

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  34. What a heartbreaking journey <3 I pray His presence, peace, love, strength and comfort for the days ahead.

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  35. My thoughts and prayers are with you and your family during this time. As many have said, there are no words to say but I wanted you to know that you are an amazing woman and you and your husband are incredibly strong people and deserve the parents of the year award. Thank you for sharing your story here as it was a true inspiration for me as I struggle to raise my two boys with some simple things. Hope and your family were a constant reminder that helped me stop and appreciate the time I have with my boys. When I came home late last night and saw on Rachelle's FB page that Hope was now with Jesus, my heart broke in half. We had just had a rough day with our 8 mo old and were feeling really frustrated. I immediately went to his room and picked him up (even though he was sleeping) and just held him and kissed him and thanked God for every minute I have been blessed to have him. I then went to my 2 1/2 year old's room and did the same.
    Hope was an amazing little girl and has truly touched so many hearts and as did your family. There were so many times when I felt frustrated that I stopped and thought about Hope and her fight and I suddenly had a bit more strength to get through my frustration.
    I have no doubt that God is close to you and your family right now and will help you through this tough time. May you soon be able to get through the grief and be able to look back and remember every little smile and positive memory you have of Hope. You now have a very special angel watching over you and taking care of you and your family.

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  36. My deepest, deepest condolences. I have also been following your journey through friends in Calgary, and this morning, I had to remove myself to cry in the bathroom for a few moments. I didn't realize Hope had embedded herself so deeply in my heart. What an angel. I am praying for all of you today and in the days, weeks and months to come. May you feel God's strong arms wrapped around you.

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  37. Dear Amy, Shawn and Sadie
    My sister and I have been following your blog from Ireland and the UK and are terribly sad to hear this news today.
    We've both been crying our eyes out for you all and for your lovely baby Hope.
    We have our own babies and can't imagine your pain and sadness.
    She was a beautiful little girl and I hope she's in a happier place now.
    Your blog has been amazing and I hope it brings you happiness in the future. You're an amazing mummy and incredible advocate for your little angel during her time in hospital.
    May she rest in peace.
    xxxxx

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  38. I am friends with Aleina and James and have been following your blog for awhile now. You are such an incredibly stong lady-- your blogs have driven me to realize that life is way too short and we need to appreciate every single second we have. You have such a beautiful family and your faith in god is amazing!! I am so sorry for your loss and pray that you find peace with knowing that Hope is with Jesus.

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  39. I have followed along with you on your blog through a friend during these weeks and months and have cried along with you as you have shared your heart. Thank you for being so real, open and honest! No words can prepare you for this day! Having lost our first daughter at her birth we take comfort in knowing that those same "everlasting arms" that are under you and holding you up are gently caring for Hope until you are reunited in His presence. We will continue to uphold you in prayer through these next few very difficult days and through the weeks, months and years ahead, as I know that it gets easier over time but you will have painful and difficult times as well! Blessings on you, Shawn, little Sadie and all your family.

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  40. I started following your family's journey through a friend and just recently finished racing through all of your blogs. Your faith through this has been such an inspiration and, fittingly, gives me so much Hope. I truly know that she whole in Heaven and can close my eyes and see the smile on her face. I will continue to keep your family in my prayers. My heart aches for your family and I am so sorry for your loss. Lord, please carry Amy and Shawn through the next few day. Give them the strength they need to say their good-byes to Hope and begin their journey without her on this earth. I pray they will feel your arms around them and know that you are walking beside them in this journey. In your name, Amen.

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  41. Amy, I continue to pray for you and your family. Your faith-walk is inspirational and we all so appreciate you sharing your experience through your writing. May God's comfort and blessings be with you in your grief.
    Helen & Paul

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  42. I have followed your blog throug our friend Laura. Reading this news made me so sad... I wish you and your family all te love and straight. I will pray for you.

    Johanneke

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  43. Praying for you and your family. May God give you the peace that only He can give during this time.

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  44. Amy, Shawn, and Sadie;
    I am so terribly, terribly sorry for your loss! I pray that our God will give you, your family, and friends peace and comfort right now and in the difficult days ahead.
    You have all been so incredibly brave. Amy and Shawn, I cannot imagine walking the road you have had to with as much grace and humility as you have. I don't know you, but I'm incredibly proud of both of you for the many ways you have shared God's love amid difficult circumstances. Great is your reward in heaven!
    Hope was such a precious jewel! I know her life and death have already blessed others and will continue to do so! Praise the Lord that she's with Jesus now! I so look forward to seeing dear Hope one day in heaven.

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  45. Hi Shawn and Amy,
    I read your blog for the first this am through 2 friends. I prayed for you both this am a verse that I love in Isaiah 40:10, "He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart, He gently leads those that have young. I am praying that you will feel the loving arms of the Saviour around you, holding you close and knowing that He is hurting for you as you are hurting. I have added you to my prayer list and will continue to pray for you through this terrible time and also for dear little Sadie.

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  46. Amy, Shawn, Sadie and family, I'm so very sorry for your loss. I have been following your precious Hope's journey from her birth and thank you for sharing her with family, friends and strangers alike. My heart aches for you and I wish you peace as you travel this most difficult road. May Hope rest in peace with her perfect whole heart.

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  47. Amy, Shawn, Sadie,

    I commented yesterday because I knew about Hope's passing but hadn't yet read it in your words. I am so, so sorry for your loss. All the wishes in the world won't change the reality but my heart aches and grieves for you and your family. The pain of that last moment at the Stollery is so incredibly familiar. I wish no parent to know a moment like that. I am so sorry my dear. This is the hardest road.

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  48. A friend of mine has been sharing your blog and I have been following and praying for you. I am so sad to hear today's news and will continue to pray for you and your family during this time. Your story is truly inspirational and has reminded me to cherish each and every day we have with our children and loved ones. Sending hugs your way.

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  49. Amy, you and I went to school together when we were younger. I've been quietly following your blog and I want you to know that my heart has rejoiced and broken with yours over and over. Hope has made an impact on all of our lives and she will continue to do so for many many years to come. God is good, and he has given Hope the gift of strong loving parents who have advocated for their daughter since she was the size of a plum. Hope makes me realize what I take for granted every day, my health, the health of my family, the happy and those not so happy moments with my child. I'm praying that God will lift you and your family up during this painful time, that as life goes back to the new normal Sadie will remember her little sister and look forward to meeting her again one day in Heaven. I look forward to meeting Hope one day in Heaven, and until then it will be an honour to think of her often and share her legacy with others. God bless you and your family, you're in our thoughts and prayers.

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  50. I have only just learned of Hope's story, and my heart is breaking for you and your family during this difficult time. I am so, so deeply sorry for the loss of Hope and I pray dearly that healing finds you along this new journey without her on earth. We lost a son in January in utero, though I know every loss experience is different and I can't begin to imagine what you are living with. There have been many moments that I've spent questioning my faith, unable to understand why God had to take him from us or why he led us down a path that ultimately didn't give us a chance to save him. But even just in your last post, your steadfast faith and trust have reminded me that He is where we will find peace and healing, and denying Him means that we deny ourselves of this. I may continue to struggle, but please know that you have helped me to be strong, even if only for a moment. I will continue to follow you along your journey as I pick up the pieces of my faith, and learn more about Hope's life here on earth. We are lifting your family in prayers, and blowing kisses up to sweet Hope. Our son, Jude, knows that he has made a very special new friend in Heaven. Much love to you and your family.

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  51. I am so sorry for your heartbreaking loss. I know you will see her again and that she is in a happy and safe place now. My prayers are with your family as you mourn her loss. <3

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  52. Shawn, Amy and Sadie,

    I have been following your journey/blog through Amber. I'm extremely sorry for your loss. I had a cry this morning as I gave my kids a cuddle in Hope's honor. Thank you for sharing your difficult stories, I would read in awe of your strength and never fading hope. I wish your family continued strength through your healing process, and I also wish you allow your heart to be filled with warmth from all those you have touched through your online outlet.

    Take time to heal.

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  53. I am praying for you, Sean and Sadie. You have been through so much, you are an example of unconditional love and trust in Christ's bigger plan. My heart broke to hear that your story took a turn away from earthly healing to heavenly healing. One day at a time, may you sense His presence near you during these days.

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  54. I've been following your heartbreaking journey with hope for a long time and have never commented before. There are no words to comfort you, I can not feel your pain but my thoughts and the thoughts of my family are with you and yours as you go through this harrowing journey. May your strong sense of faith help guide you through this, you are truly an inspirational mother and this blog will be very special for Sadie as she grows up so she can know her sisters story.

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  55. I do not know you, but I have prayed and continue to pray for you and have cried for your pain. Our Father in heaven holds your dear Hope close to him, safe and free of pain. There are no words, nothing that can be said to ease the pain. You and your family will be lifted in prayer by my family daily. May the peace that passes all understanding be your breathing and living strength for the days to come.

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  56. I have seen a few posts that friends had posted on Hope's story. I just want to say my thoughts and prayers go out to you and your family during this time. My son has CHD and we have thought battle after battle to get where we are. These children are angels, that is for sure. Lots of hugs sent your way!

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  57. I am so sorry for your great loss. I never told you this but I lost my half sister just weeks before her 18th Birthday. I feel your sadness as I never knew her well due to not knowing my father. I knew her for maybe 5 years. I had so much hope for what was to come...sadly God had other plans. I can't imagine how ou feel right now. It is true you shouldn't have to bury your own child. I want to thank you. I am a survivor of abuse...and often the Christian community negates my feelings. You shared the good bad and ugly of your feelings thus reminding me ALL feelings are ok. You have allowed me to feel. Your journey has not ended I know. Grief is hard...no matter who you grieve for. I am so sorry for your loss...yours and Shawns and Sadie's. Please let Sadie deal with this how she chooses too. My niece made my sister Mel a fairy. That was the way she could understand Mel's death. I/we will be praying for you and all your family. I am so glad they are all there with you. Knuffels.

    Naomi host of The Butterfly Gang in Ontario

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  58. Amy,
    you are truely inspirational! Such a strong woman, parent, and wife. Your undying faith is so foreign to me and incredibly inspiring. Thank you so very much for being so raw and sharing this journey it is courageous of you. You and Hope have helped put a little more faith in my life and I am sure many others as well. I am completely heart broken for you and your family I am so sorry to hear about Hope passing, I will hold you and your family in my heart! God bless <3

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  59. Amy, Shawn, and Sadie,

    Thank you so much for sharing Hope's story with us all. Your family has, and will continue to be, an amazing inspiration to many of us. Your strength and love has taught me so much about life. I will never forget Hope and your story.

    I'm so sorry for your loss. I can only imagine the pain you're feeling now as a family. Take care of each other, and get what support you can from your friends and family.

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  60. Thank you for the journey and sharing the small window into your lives. Your family has been used to drive change in so many other peoples lives. I truly feel sorrow for your family, you have my deepest sympathy. I will be praying for you and wonderful little family.

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  61. My heart is breaking for you and for your family- i'm praying for you! Sending sympathy and hugs.

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  62. A little angel has returned to heaven

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  63. This morning I woke up praying for Hope. As soon as I found out that Hope had gone to be with Jesus I could feel the tears welling up in my eyes. Our whole office is saddened by this, as we were praying for her. I remembered something that stuck out to me during SBFM... That as Christians we serve a God who created each person in His image. Because of that we fight for life. This is something our world has lost, an understanding of the value of each person created by our Father. Amy and Shawn... your journey of valuing, fighting, loving, and losing Hope is a fight that screams that our God is real! Because as you know right now, this fight is very real, because our God is real. Thank you three for fighting for Hope and not giving up on her. Thank you to all the doctors and nurses who fought for Hope. Praying that the Lord will be there beside you, mourning and comforting. Words are a feeble comfort int his time, praying the Holy Spirit, your comforter, to hold you.

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  64. I have been following your journey through a mutual friend's posts and your blog. I am absolutely crushed that Hope was not able to find her whole heart here with your family. I am crying right along with you.
    I read a quote yesterday as I sat in a meeting at work, which made me surprisingly think of little Hope, though we have never met but she has touched my heart in a way I could never explain. I want to share this quote with you and know that by you sharing your journey and Hope with the world, you have made a change within all of us that can never be quantified.
    "We are reminded how short life really is, and how we are just passing through. So, all the people you haven't told you love lately, tell them, and live your days like you mean it. - Hal Sutton"
    May you be at peace little Hope, for your short time here has made a world of difference in lives further reaching than your arms could ever dream of reaching.

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  65. Simply no words. Just tears and silent prayers offered up by the saints. Praying that you experience His strange peace.

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  66. My heart is broken by this and I am crying as I sit and read. My God grant yoy faith to believe in him. I have been following your blog and will pledge to pray for you!

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  67. I am very sorry to hear of your loss this morning. I will be praying for your family. There are no words that myself or anyone can say at this moment to make things better or more bearable. I thank you for sharing this journey with us all. Not only did Hope touch so many, but the faith that your family has had throughout has remained unwavering. God most certainly is good, and may His love continue to be upon your family as you go through this time of mourning. God Bless you all.

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  68. My own heart breaks for you and your family. I have followed your story of incredible strength and love for your amazing angel Hope. Continuing to pray for you and sending comfort from the Yukon.

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  69. No words can express my sorrow for your loss. Praying for God to overwhelm you with comfort and peace in the days ahead, and to carry you in a way that you have even yet to experience. Praying for His Presence to continue to be your rock - as it has been all along.

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  70. We have been praying for your family since Erin Brophy started linking to this blog. My family will continue to pray but now our prayers will be for strength and, eventually, peace. -The McKenzies-

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  71. My tears fell for you this morning as I read this blog post. Sending you my love to you and your family during this difficult time. Thanks for the reminder that life is precious and can not be taken for granted. <3

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  72. I keep typing and deleting... I was saddened beyond belief this morning and can not even imagine your pain. Sending you, Shawn and Sadie love and prayers to mend your own broken hearts. She has left an indelible mark on mine and will be truly missed.
    Sharla

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  73. Tears and prayers. Know that your story has touched so many around the world. It makes us appreciate all the little things in our lives. Baby Hope's story has brought awareness of this condition to so many who never knew it existed. Our prayers will continue for your family. <3<3<3

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  74. Amy, I don't know you, and I can't remember how I came across your blog, but I have been following silently for the past few months. You are inspirational. I thank you for taking the time to share your story with all of us. You're a beautiful writer, and Hope's lessons will be with me always. I am going into nursing school this year because of her and others whose stories have changed my life. I am so terribly sorry for your loss.

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  75. Dear Shawn & Amy,
    As I was praying for you last night, I found myself singing this old hymn:

    My hope is built on nothing less
    Than Jesus’ blood and righteousness;
    I dare not trust the sweetest frame,
    But wholly lean on Jesus’ name.

    On Christ, the solid Rock, I stand;
    All other ground is sinking sand,
    All other ground is sinking sand.

    When darkness veils His lovely face,
    I rest on His unchanging grace;
    In every high and stormy gale,
    My anchor holds within the veil.

    On Christ, the solid Rock, I stand;
    All other ground is sinking sand,
    All other ground is sinking sand.

    His oath, His covenant, His blood
    Support me in the whelming flood;
    When all around my soul gives way,
    He then is all my hope and stay.

    On Christ, the solid Rock, I stand;
    All other ground is sinking sand,
    All other ground is sinking sand.

    When He shall come with trumpet sound,
    Oh, may I then in Him be found;
    Dressed in His righteousness alone,
    Faultless to stand before the throne.

    On Christ, the solid Rock, I stand;
    All other ground is sinking sand,
    All other ground is sinking sand.

    I hope it gives you comfort at this very difficult time. May you find solace in the absolutely gracious Love of our Lord, and let nothing ever shake your faith and trust in Him.

    Continuing in prayer for you and yours.

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  76. My heart aches for you. We will be praying for your dear family.

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  77. I watched 100 Huntley Street last night and saw Hope's Grandma. I promise to pray for your family. May God's great love surround you always! Sheila

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  78. Sharing tears with you and praying for all of your family. Thank you for sharing Hope's journey with all of us.

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  79. My heart is breaking for you and your family as I hear about your precious girl going to be with Jesus. I am so sorry for your loss. Prayers for all of you in this difficult time.

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  80. Aimee,

    This is Mrs. Tapper - Jeremy and Stephen's Mom. I have been reading this blog since before Hope was born - sometimes I can't get through it because of the tears. There are no words for what your family has been going through. We here in Alabama have been praying for you.Your little girl has touched more people in her short life than many of us will do in our whole lifetime. Hugs to all of you.

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  81. Amy, I am so sorry for your family's loss. I am touched by your bravado in sharing your story while the pain is so new and fresh.
    I believe she will find peace now, as will your family.
    Blessings to you on your journey to healing

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  82. I am sorry for your loss. I have been following your story and you seem like the most beautiful family. May God give you peace that passes all understanding.

    “Each new life, no matter how brief, forever changes the world.”
    - Unknown

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  83. I have been following your blog for quite some time, and was so saddened to see the news this morning. I can not imagine your grief. Your baby girl is free of pain, up in heaven now. Take comfort in that, and the arms of Jesus that are holding you and your family tight.

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  84. Praying for you, your family - and all the lives that have been touched along the way :)

    Maranatha Song "My Peace" ....

    My peace I give unto you
    It's a peace that the world cannot give
    It's a peace that the world cannot understand
    Peace to know, peace to live
    My peace I give unto you

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  85. I am so, so sorry for your loss. Weeping with you and praying for you...

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  86. I am truly sorry for your loss. Our thoughts and prayers go out to you and your family. May God keep you strong and help guide you through this difficult time.

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  87. I am so sorry for your loss, Amy. I have a 2 year old son and 5 week old baby girl. I started following your story when my daughter had a shadow in her heart at 18 weeks in the womb and I feared the worst. Your story brought me strength as you are so strong and courageous. I have prayed and thought about you many of times. I do not know you but am grateful you shared your story. My thoughts are with you and your family and friends as Hope becomes an angel.

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  88. Amy,

    I have been praying for you throughout this journey. As I prayed last night I was reflecting on how much your story, Hope's story has taught me about hope, that through all of the ups and downs and miracles and heartbreak of this story that there is always hope to be found in our God who is loving and sovereign. Thank you for so faithfully sharing your heart, your story and your unshakable hope in our God. Your story has touched my life, and strengthened my faith - you are truly part of my cloud of witnesses. Praying for you as you grieve, may you experience His peace and presence.

    Jenn

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  89. I see so many comments about how Hopes story has touched peoples hearts, we hurt for you, cannnot begin to imagine the pain, and weep tears at the thought of it. But I cannot help but think what this small girl did with half a heart, by touching so many lives, many of us can only dream of doing with a whole one. I saw her grandma yesterday on 100 Huntley Street talking about people who have been saved because of her journey... and I think about the sparkly crown Jesus is placing on her head today. Though her journey was short, her work was eternal, and today she hears the words "Well done, Good and faithful servant".

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  90. Amy, I am so sorry for your loss. My heart aches for you. I don't know you or your family, but know that there are many unknown souls holding you and your family up in prayer today and in the days to come. Hope has touched many lives and I thank you for sharing her with us.
    Love and prayers in Christ

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  91. I'm not sure if you've read Megan Crowell's blog about her son Christian whom lost his battle with cancer in January. She gave a great analogy in her last post yesterday. She explained feeling like she was in a dingy lost at sea during the battle and eventual loss of her son. If a life boat came to rescue you and only had room for one, wouldn't we all as parents throw our children to safety and tell them we will join them soon. Your daughter is now on Gods life boat, safe, healthy, free and loved. While you may remain here rowing in the sea of life, you may face other storms, but He will calm your seas, He will pull you ashore and walk our to meet you when the time is right. But for now, remember Hope is Home.

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  92. I am so sad to read this... my heart just aches for you and your family. I will be lifting you up in prayer as your go through the days ahead..

    May God Bless You and bring you comfort in this deepest pain.

    Amy, you are an amazing mother, and you have touch my life in your words... God bless you.

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  93. I've been following your story for awhile through a mutual friend. My heart hurts for you all... So sorry. Praying God will comfort you during this difficult and heartbreaking time.

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  94. Dearest Amy,
    I am crying with you.
    My heart pounds and aches along side yours.
    I will pray to God to heal and reassure you that your little girl is with him, happy and waiting for you. Keep your eyes focused on eternity Amy, because our short lives here will be over in a heatbeat, and you, your husband and your family will soon be reunited with Hope, in Heaven.

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  95. I am so sorry to hear this! But we KNOW that God will take the best care for her and she is now pain free and forever young and innocent. Prayers to your family , always

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  96. I just read ur updated blog re: Hope's passing! I m numb & stepping up my prayers for u & ur family. Especially for u the young greiving mother so suddenly! I am so sorry for ur loss Amy & Sean! my tears r flooding my iPhone screen so I better go.
    From ur sister in Christ, Barb from northern BC

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  97. There aren't enough words to tell you how truly saddened for you and elated for her I was to hear of Hope's journey home. Praying you find comfort in each other, family and friends as you celebrate her short life on earth and the knowledge that you will once again hold her in your arms. For now, she is resting in the arms of her creator.
    Love and prayers to you all. <3

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  98. Amy,

    I am one of the many, many people who has been praying for your sweet Hope and your family for quite some time. I am heart broken for your loss. I can't imagine. Like so many others, I want to commend you on your strength and faith in the Lord throuhg all of this. Please continue to hold onto that and stay close to Him. Confide and abide in Him. The Lord and time will heal you. God has mended sweet Hope's heart and will, in time, mend you and your family's hearts as well. Your dear little lady is having the time of her life now! How wonderful it is to know that you will all be together again one day! I never got to meet Hope on earth, but I look forward to meeting her one day in Heaven! I hope she gets to play with a little baby I lost this year. Stay STRONG!

    God Bless!

    Stacey

    Matthew 5:4
    “Blessed are those who mourn, for they shall be comforted

    Proverbs 3:5
    Trust in the Lord with all your heart, and do not lean on your own understanding.

    Matthew 19:14
    But Jesus said, “Let the little children come to me and do not hinder them, for to such belongs the kingdom of heaven.”

    2 Corinthians 4:16-18
    So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

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  99. To the Family,

    Praying for you all as you grieve the loss of your little girl. It has been a long battle and a fight that Hope has fought valiantly. May it comfort you to know that she ran the race, she fought the good fight...she lived for a purpose and that was to glorify our God and Saviour. She was loved. Her fight was touched by so many. Now she is free from pain and she is with her Lord and saviour. Praying the Lord will give you the peace that passeth all understanding ...knowing that she is where she needs to be.
    What is your only comfort
    in life and in death?
    That I am not my own,
    but belong—
    body and soul,
    in life and in death—
    to my faithful Savior Jesus Christ

    "For I am persuaded, that neither death nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God which is in Christ Jesus our Lord." Romans 8:38,39

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  100. Gone From My Sight

    I am standing upon the seashore. A ship, at my side,
    spreads her white sails to the moving breeze and starts
    for the blue ocean. She is an object of beauty and strength.
    I stand and watch her until, at length, she hangs like a speck
    of white cloud just where the sea and sky come to mingle with each other.

    Then, someone at my side says, "There, she is gone"

    Gone where?

    Gone from my sight. That is all. She is just as large in mast,
    hull and spar as she was when she left my side.
    And, she is just as able to bear her load of living freight to her destined port.

    Her diminished size is in me -- not in her.
    And, just at the moment when someone says, "There, she is gone,"
    there are other eyes watching her coming, and other voices
    ready to take up the glad shout, "Here she comes!"

    ---------------------------------------------------------

    Even though the pain of losing the physical presence of Hope can not be healed, today I hope that the thought of her in Heaven, being happy with God, crawling, walking, jumping and laughing gives a little joy to your heart in the middle of this sadness. She gave us an incredible lesson on strength, she endured what the majority of us never had to suffer, and she is sending all that "out-of-this world" strength to you and your family, and so is God.

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  101. So very sorry for your loss. When my husband and I lost our Olivia we mourned deeply and you will too, but His ways are higher and he does have a plan for your lives and it is perfect. We had a few songs we clung to "Blessed Be Your Name" was one, He gives and takes away, my heart will choose to say Lord blessed be your name, so many times I sang that through tears in a whinny voice. It brought healing though because it is a choice. Your daughter's life had purpose and meaning. Whether a year or 4 months there is purpose. Praise God for life!!!! Olivia was with us for 4 months. Now we have twin 5 year olds and a 14 month old. God is good! Prayers for you and Shawn and Sadie. Praise Him in this storm.

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  102. Through tears I recall God's promise that one day He "shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain..." That's the Blessed hope of the believer in Jesus. (You named your daughter so well!) May you all feel His comfort and love today and always.

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  103. I have been following your story through Jennifer Payne Dunnett, and I have offered prayers for your family through this difficult time in your life and your struggle with Hope. I, too, believe that God is good, and obviously He has a wonderful purpose in heaven for so pure and innocent a child. Remember how Jesus suffered on the cross to teach us all about love. Hope has suffered, and because Jesus loves her, He has called her home. I will continue to pray for you, Shawn and Sadie and all your extended family and friends as you prepare to honour and celebrate your daughter's life. She has taught you to never to give up, to be brave in the face of adversity and to have faith, no matter what. Her little spirit will be with you always, watching out for you and loving you from beyond, until you are reunited one day. God Bless You, Amy. xo

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  104. My heart is truly broken for you and your family today.... so Sorry for your loss. Sending much love and healing your way.

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  105. To Amy and Fmaily... Thank you for sharing your feelings through this trying time, I too have been following this for some time... You have shown through all of this that He is good. Praying for you and your family.

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  106. There are no words to help at this time, nothing to ease the sickening heart break.
    So I'll write of what I know for little Sadie.

    I lost my sister Quanah to a heart condition 20 years ago at the age of 4. I at that time had great peace with it all. I knew Quanah was in heaven with God, she was an angel. She no longer needed surgeries, she didn't need needles, she wasn't in pain anymore. I was genuinely happy for my sister.

    I got to say goodbye at the viewing and it didn't seem real, my sister obviously wasn't really there. I smiled at the funeral for I knew she was happy.

    I saw her in dreams telling she was ok. Her toys would go off randomly when I needed a smile or a hug.

    It didn't set in that she was really gone for good until I was about 7 or 8, then it got hard.

    I don't know how Sadie will take it, but I will pray for her and you all. Nothing will ever take away the pain, but Hope will NEVER be forgotten.

    I want to do something for you all, I feel so helpless and that the tears I cry are not enough.

    "Captivate" starfield

    You say, strength is found in weakness
    Peace in incompleteness
    So why do I hold on?

    You look, For a heart that's open
    For beauty in the broken
    So why am I withdrawn?

    [pre-chorus:]
    My soul's screaming out
    To be found in You

    [chorus:]
    Spirit draw me to my knees
    Captivate all of me, all of me
    Here before You honestly
    Captivate all of me, all of me

    I'm so messy and distracted
    Undisciplined and tactless
    Here on the inside

    I thought age would tell the secrets
    But the secrets are still secret
    And the years are passing by

    ...
    Teach me to wait in the moments of my need
    Teach me to hear the melodies of peace


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  107. Amy,

    I have been following your blog through a friend via facebook. I am completely heart broken over the loss of Hope. Her and your family's journey has been part of many conversations with my family. It has made me take more appreciation for my own son. Things like him taking forever to fall asleep at bed time cuddles, leaving a mess on the floor, or being picky over dinner seem like nothing. I'm so blessed to have him in my life and definitely hug him extra tight.

    While I am not Christian myself, your complete faith in God is incredibly heartwarming and inspiring.

    Know that you, Shawn, Sadie, Hope and your entire family are in my thoughts and heart.

    Love from here in Calgary

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  108. I am so deeply sorry for you immense loss sweet mamma. I buried my husband 4 years ago at 37 and my worst fear is that I would lose one of my children as well. My heart breaks for you. You are right what you are doing no parent should ever have to experience. I am deeply, deeply sorry. I wish your darling child was in your arms. My prayers are with you and may the peace, comfort and healing of Christ be with you. Warmest hugs to you.

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  109. Dear Amy, Shawn, and Sadie,

    My husband and I had been silently following baby Hope's story through our mutual friend Kimberley Farley, and whispered prayers for your precious Hope. Last night we were deeply saddened by what we learned. We grieve with your family even though we are strangers to each other. We know how it feels like to watch your precious child slowly fade away in your arms, right before your eyes - we experienced that too with our first baby years ago. No words can describe the shattering pain and no way of forgetting. I prayed that no parents should go through what we went through but....

    may you hold on to the knowledge that nothing can separate us from the love of our God, that His strength is perfected in our weakness and darkness. His comfort, peace and healing are already coming your way. It will take some time, but it's coming your way. God will carry you through, He will see you through. We hug you in our prayers.

    http://huntpearl.blogspot.ca/2009/08/struck-down-but-not-destroyed.html






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  110. I am saddened by your loss but rejoice full at the same time. I have been following Hope's story for quite some time and have been sharing your blogs on my Facebook. I have been getting responses from so many people about how much your story has touched them. This is truly God continuing to do his work. I pray for peace and comfort for your family at this time....

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  111. I am so heartbroken to hear of your family's loss and I am at a loss for words. There is a song that has had great meaning in my life and I hope that it might speak to your heart as well. With this song I send you love, thoughts and prayers. Thank you for sharing your journey.

    With Hope
    by Steven Curtis Chapman

    This is not at all how
    We thought it was supposed to be
    We had so many plans for you
    We had so many dreams
    And now you've gone away
    And left us with the memories of your smile
    And nothing we can say
    And nothing we can do
    Can take away the pain
    The pain of losing you, but ...

    We can cry with hope
    We can say goodbye with hope
    'Cause we know our goodbye is not the end, oh no
    And we can grieve with hope
    'Cause we believe with hope
    (There's a place by God's grace)
    There's a place where we'll see your face again
    We'll see your face again

    And never have I known
    Anything so hard to understand
    And never have I questioned more
    The wisdom of God's plan
    But through the cloud of tears
    I see the Father's smile and say well done
    And I imagine you
    Where you wanted most to be
    Seeing all your dreams come true
    'Cause now you're home
    And now you're free, and ...

    We have this hope as an anchor
    'Cause we believe that everything
    God promised us is true, so ...

    So we can cry with hope
    And say goodbye with hope

    We wait with hope
    And we ache with hope
    We hold on with hope
    We let go with hope

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  112. Amy,
    my heart grieves for you and your family. A heartbreaking end to a long battle for Hope. And yet, not an end for her, but a new and wondrous beginning, healthy, whole, and most importantly, safe in the arms of Jesus. I can't imagine the depths of your grief. We don't know you personally but you will be in our prayers. May the Father of mercies and God of all comfort, comfort you in your affliction.

    Thank God that we have eternal life in Christ.

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  113. I've been trying to think out a comment to express my sadness and sorrow, but I can't think of the right words to say. I can't be sure why this happens, or why the sun continues to shine after such a thing happens, but I hope every morning when you see the sun rise, you believe that it's her telling you to get up, to keep going. I pray for healing in your family, She is safe in God's arms.

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  114. Been following you through Jenny Rottier. I am so sorry for your loss. Please dont stop blogging..this blog will help you in your grief.

    Haven has gained an angle.

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  115. I saw your blog through a friend of ours, Christina. I have only tears to share with you as I read through your journey. Your courage and hope are truly inspirational. May you feel Christ's comfort and love as your journey continues. May God bind up your broken hearts.

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  116. I am friends with Monica so I've followed your journey closely. As a Mother of 3 girls age 7, 4 and 1 my heart aches for you and the loss your family is having to endure. Your strength as a Mother and the support of your family speaks volumes to the love all of you have for each other and for little Hope. She is a brave little girl who has left her mark in the lives of everyone who knew about her journey. Thank you...for your bravery and for sharing your story.

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  117. I do not know your family, but have been following your post for months. I cannot even begin to express my sympathies for your family. Having young children of our own, I can only imagine how heartbreaking this must be. You have been a truly inspirational mother. Your dedication, love, trust in God and postive attitude are truly remarkable. I think you have made every mother and father hug their babies a little tighter and truly embrace every second they have with their children. I have shed many tears reading your blogs, and just want you to know how amazing you are and what an impact Hope and your family have had on so many people. Sadie has the perfect role model to aspire to be like. Sending you love and prayers from our family.

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  118. There are no words to comfort you for your loss.

    Our hearts are heavy with grief and sorrow - we will pray for you and your family.

    Our sincerest condolences,

    Chuck and Stacey

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  119. I just discovered your story through baby Grayson. I am so incredibly sorry for your loss, Hope is absolutely beautiful. This entry is so similar to our story, it was very hard to read. We too lost our little messenger angel Griffin, he was with us 7 amazing days, and reached sooo many in such a short time. We didn't get to say goodbye, the day they took him off of the ECMO they didn't wait for us to get there and we were stuck in traffic. They gave him a bunch of adrenaline to get him through the procedure but his heart just couldn't take it, and by the time they finished, he was gone. I was so incredibly thankful to read you got to hold your little princess before she was gone, I was scared reading it, hesitant that I would read she was gone before you got to hold her. Thank you Jesus for that, for getting to say your goodbye, I am just so, so sorry you had to say goodbye at all. I know what you feel, and what you have to face, and it is not going to be easy. The only thing that has gotten my husband and I through this is God, and all the wonderful people we have been sent by him, to help carry us on this path. If you need someone to talk to, I am just a message away. You can find me on FB- Phoenix Frost-Ulfhamr, or through my email phoenixfrost13@gmail.com. My hubby and I are passing your story along, you have many just in our area who will be praying for you guys. Heavenly Father, we ask you to pour comfort and peace over this family right now. You know the pain they feel, and only you can lift them up truly and give them joy. We ask that you hold them close and carry them while they are too weak to walk on their own, and bless them in more ways than they could imagine. We know Hope is healthy and happy and safe in your arms God, but it is still so hard when she is so far away, so please ease their pain while they wait to join you guys in Heaven and be a whole family again.

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  120. I have been following your story for quite awhile now, and am very saddened to hear of your loss. My 5 month old nephew passed away 10 years ago yesterday in the very same hospital with a rare heart condition...I like to think that he is with Hope right now. Take comfort in the time you had, the joy she gave you and the sister she left behind.

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  121. So very very saddened by your loss. Praying for His peace to be poured out on you in a mighty way today and in the months to comes.

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  122. There are no words sufficient. It is an incredible blessing to know you and Hope through your blog and I am so so sorry for your loss. You will be in my prayers and I look forward to knowing you and Hope when we reach Heaven. Sara (friend from way back of your cousin Megan F)

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  123. Amy, words can't express how sorry I am for this devastating loss. Prayers and love are with you all. God bless your sweet family.

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  124. May God comfort you and your family! May he fill your hearts with his love, joy and assurance that your precious little girl is safe with him.

    Grieving with you as I am sending prayers from Austria

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  125. my dear amy....my heart aches for you and your family. i am so sorry for your loss and the difficult time you will now have to endure. thank you for openly sharing this journey.

    praying that you will be surrounded by God's peace and know that HE IS FAITHFUL!

    have been singing and praying this hymn for you since i read the news....

    When peace, like a river, attendeth my way,
    When sorrows like sea billows roll;
    Whatever my lot, Thou has taught me to say,
    It is well, it is well, with my soul.

    It is well, with my soul,
    It is well, with my soul,
    It is well, it is well, with my soul.

    Though Satan should buffet, though trials should come,
    Let this blest assurance control,
    That Christ has regarded my helpless estate,
    And hath shed His own blood for my soul.

    love,

    ruth

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  126. I am so sorry... I know hope is up in heaven thinking about how blessed she was to have such a loving family who loved and supported her through her life, that she was able to live Bexuase of you! Rip hope.

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  127. Hope's life touched people all over the world. Amy's blog brought people closer to God, and that is how we store up treasures in heaven. When I close my eyes, I see God with a chest full of treasure for Hope. As a mom, I love giving gifts to my children. I think God had so many amazing treasures in heaven for Hope, he could not wait any longer to bless her with them.
    I am praying for peace for those left behind, and praising God for using Hope to bring people closer to him. I know I am closer to God because of my prayers for Hope.

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  128. We are heartbroken with you!! So deeply sorry for your loss!! Lots of prayers & thoughts of comfort being sent to you & your family!!
    May the Lord be your comforter & may He provide you the strength you need to go forward!! God bless you & your family!!

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  129. I weep with you, as there are no words. We know that God's plan is His, sometimes not ours. He will give the strength for each new day, day after day...we will pray for peace, comfort, and Hope for each NEW day as we continue to walk in His way.

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  130. Amy, Shawn, and Sadie...our mutual friend, Katie shared your story with me a long time ago and I have been following your journey ever since. I have never wept so uncontrollably for people I've never even met. I am praying for you all, as you go through something no one should ever have to endure. And I am so unbelievably encouraged to see you glorify Jesus and declare His unchanging goodness amidst all the pain. Through the way in which you have dealt with your circumstances, you have pointed me and others to Jesus. He is revealing His glory through your family and it is absolutely beautiful and humbling to witness. I am honored to have heard your story and my life is different because you chose to share... Megan M

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  131. I was honored to be taking care of Hope while she was at ACH. Very heartbreaking to learn the news. Hope lived a short but filled with love life. Your strength is inspirational! I pray God to give you piece and I know that Hope is in much better place where all little angels belong.
    Mourning with you as many other nurses at ACH.
    K.M.

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  132. May God bless you and your family. Hope was an angel and is in good company in heaven. Thank you for your insight, inspiration and faith during this journey- you have been an inspiration. I will pray for you.

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  133. I am a childhood friend of your sister-in-law, Christen. You don't know me, but I have read your blog every day for the past year. Your story has touched me and my family and we are so deeply sorry for your loss. Hope was so lucky to have you as her Mommy. My hearts are with all of you. Much love from Ontario <3

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  134. You are all in our thoughts and prayers.

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  135. So sorry to hear of your tremendous loss. I am reading this through a link that a friend of mine posted on Facebook. As a Mom of small children I can't begin to imagine. God has your sweet babe, love to you an your family.

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  136. Oh Amy. My heart is aching and broken for you. I recently discovered your story through some of your friends. You don't know me but I will be praying for strength,peace and Gods loving comfort for you and your family. I have a friend who lost a baby girl at the exact same age who had a heart condition as well. I can't imagine your sorrow.I can however envision all the little children happy in heaven together with our Lord. Thank you for writing your blog and touching our hearts. May God be with you as you walk this next path.

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  137. I can hardly write this. Words are so inadequate to convey how we feel. You have done that so eloquently and with such honesty in this blog. We will continue to pray for you as you walk out this next part of your journey. You have touched us in ways you will never know. Your baby girl will continue to have an impact here on earth because of her fight! Rest in peace little one...'Love Brian & Elaine VanRyckeghem for Hope for the Island

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  138. Dear Naomi, Shawn and Sadie

    I. am so sorry for your loss of little Hope. I am so glad that you have the hope of seeing her again and knowing that she is in the arms of Jesus. I am praying for you all.
    love : Jolene

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  139. Wow. I cannot even imagine what you're going through. I have kids of my own, and my heart aches when I read your story. I don't know how I would process it.

    I pray that you and your family will be comforted and healed, and that you will know in your heart, without doubt or fear, that your precious child is safe in the arms of the one that has given her a new body - a perfect body - and with that, perfect peace and joy.

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  140. There are no words sufficient. May the prayers of others carry you through the next hours, days, weeks & months.

    I am so very sorry.

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  141. As I began my day by reading your blog this morning, my hand covered my mouth, my heart began to race and I began to say NO!
    I started to cry and I was not prepared to read the words you had written,Amy.
    I did not want it to end this way for Hope or for you and Shawn and Sadie, after all you have gone through.
    I am so sad today for all of you and even though we have never met, I wish there was something I could do to ease your pain. My deepest sympathies go out to you and your extended families.

    Amy, you did such a beautiful job of loving Hope each and every day of her life...may you take comfort in knowing that. You were
    the best mommy she could have ever had.

    I am praying that Jesus will hold you and Shawn and Sadie so tightly as you face the coming days and that you will experience the comfort He promised and it will be unmistakably from Him,
    as He carries you through this journey of grief and tenderly heals your broken hearts.

    Thank you for allowing me to share in your journey with your precious little Hope. I will never forget her or your courage
    and trust in Jesus...

    Love Fay








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  142. Hello, my name is Lindsay and I live in England. I have been following your blog for some time now. We have never met, but your daughter's life has touched me deeply. Hope's strength has touched the world. She has done more to connect people and bring family, friend and strangers together than some people do in 80 years. Love to you and your family.

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  143. Amy,

    Your story has meant a lot to our family. We are grieving and crying with you and your family in this difficult time.

    Hope's journey has taught me a lot as a parent and as a child of God. I admit to not really believing before I started following your story but I truly believe he has a place in my life now.

    I am so proud of your family for going through this journey with such strength and faith. Hope has truly reached her final destination and brought many hearts along with her.

    RIP dear Hope, you are truly a beautiful little angel now.

    Much love.

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  144. Hope and your entire family have been such a testimony of God's grace in the midst of suffering. I am so sorry for your loss. My heart breaks for your family and I will continue to pray for you all. Laura

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  145. I have been following your story with Hope since I met your sister. I am shocked and crushed for your family's loss.
    I just wanted to share with you in regards to Sadie... I lost my older brother when I was 6 (to cancer), and though you are absolutely heartbroken to tell her and mourning the relationship they would share, i want you to know how resilient little ones are, and how their innocence is their strength. It will swallow the grief, even though you feel like you are taking it from her. I do not remember my own tears for my brother. What I remember is how much everyone loved him and what wonderful things they always spoke of him. Hope's legacy will live on in your memories and photos, and Sadie will only process as much as she can comprehend in her little world right now. Experiencing loss at such a young age equipped me with a life wisdom and strength that I often don't even see in my peers in their 30s. I don't know how to explain it, and I know it may be no comfort while everything is still so raw. But her love for her little sister will remain perfect and innocent, and she will grow up to see life as a little more precious and a little more meaningful, knowing she has a sister in heaven.
    Prayers for you and your sweet family. Been thinking of you often today.

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  146. Amy, Shawn and Sadie,
    My wife and I have been following your family story for a while through updates from Melanna Heebner. We are so very sorry to hear of your loss. Our thoughts and prayers will continue for you and your family.
    Jeff and Jaclyn

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  147. My sincerest condolences. Please know that Hope's story touched many during her brief time in this world. Thank you for having the courage to share. You and your family are in my thought. Susan

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  148. There are so many things in my heart that I want to say but they seem so shallow at a time like this. You and your family are part of our extened family and we love you as our own. Please know that my heart aches with yours, I cry both tears or sadness and joy.You and your family will always be in my prayers and I pray now that God will give you peace and joy in knowing that he is watching over you and most of all that precious little angle he now has in His loving arms in Heaven. Maggie Laskey

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  149. I'm so very sorry for your loss. I am heartbroken thinking of what you and your family must be going through. I spent the morning in tears and am still having difficulty functioning through the day thinking of Hope - and we have never met. We are all grieving with you. Little Hope is a beautiful baby angel with God now. Just know that you will see her again. Praying that you and your family will have the strength you need to heal through this sad time in your life.

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  150. My heart is breaking for you and your family. I pray that the knowledge of your precious Hope being held safe in Jesus' arms will help to bring you comfort and healing to your hearts. Sheri

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  151. Your strength and utmost reliance on God through this journey has been inspiring. I cannot imagine the pain of losing a child, but God had a purpose for little Hope. She has touched so many, many lives around the world - something many of us will not achieve in our lifetime. Thank you for sharing Hope's life with so many of us - I know I am blessed by Hope and your family. My prayers continue to be with you all.

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  152. Peace to you, sweet ones. May the prayers of those who journey alongside you (from however far away) lift you up on the long road ahead. Praise God for Hope. She is free...I hope she's praying for us now who are still in chains.

    Love,
    North Dakota Smiths

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  153. I think it is important to say that you really need to give all of your attention to your live daughter. Your constant fight to keep Hope alive may have taken some precious time away from the her sister. As shallow as it may sound, Cry for Hope in private moments, but be happy and strong around Sadie. She will really need you both right now. She needs to be your number #1. When the time is right perhaps another Creation with hope's grace will be born. Until then know that you are right in saying that she is now free from all pains and issues she was scarred with from earth. She is now always with you. I lost my son after a long battle with CP and seizure disorders. He was 12yrs. I agree that no parent should have to bury their young child. But we have to be strong and give as much love as we can to the ones that we can hold right now. EXTRA LOVE is even better. Please tell her how much you love her everyday!!!!! whatever you do, don't let yourself get too depressed and lose sight of the life in front of you. Now is the time to celebrate Hope's life!!Keep positive and many good things will follow. Peace be with you <3

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  154. Though we have never met, my heart is heavy with grief for you. Hope's journey and your telling of it on your blog have touched my heart, that of my family and have challenged my faith. Thank you Amy. Thank you Hope!

    Hope did so much for so many. One day she will not only be reunited with you, but also with the so many (many!) people she ministered to. Oh the treasures that little girl stored up in heaven during her short stay on earth! Until that joyous day when you are together again, I pray for comfort and healing as you mourn.

    As I read your entry this morning the song "Clouds" by Zach Sobiech came on the radio. And as my eyes overflowed with tears for you, I couldn't help but think of your precious Hope up, up, up in the clouds sitting on the lap of her Saviour. Hugs and love and comfort and peace.

    XX
    Lacey

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  155. Amy;

    I watched you mom on 100 Huntley Street yesterday. I cried when she was telling her story about Hope. I can't even imagine how you and your husband are going to tell Sadie. Just know that Jesus is with you all, your entire family. I wrote a prayer on a friends Facebook, Gayla. I hope you don't mind but I want to share it here....

    "Lord Jesus, we come to you broken, hurt and in pain. We know that you are doing things that we might not understand at this time or ever understand. We ask you to be with Baby Hope's Family today as they start this long hard road of grieving. Be with her sister Sadie, and let her know, that her sister Hope is okay and is now with you. Be with her parents, as they plan the next few days. Give them peace and comfort in kowning that Hope is healed and that she is no longer in pain. Give them strength to do what they need to do. Most of all lord, even though we are sad, broken and hurt that Hope is no longer with us, we know...that you have called an angel home. Amen!" - Jason Rehberg

    Your family Amy is in my prayers and my wifes. Along with our whole growth group from our church. God Bless!

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  156. Amy and Shawn, I'm so very sorry for your loss! My prayers are with you and your family.

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  157. I pray for strength and peace in this time .my daughter has followed baby hope story and
    has kept me updated I haved been praying also love and hugs for. your family. my heart is breaking also

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  158. I am so truly sorry to hear about little hope's passing!!!! the time she was here on earth will always be remembered and her short life will never be forgotten .
    Hope will always be a part of your life and now is your little angel in heaven where she is able to look down on you and your family and she will watch over you . RIP Hope , you were a fighter !!!

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  159. I weep for your loss, and pray you grieve your loss with Grace and know your little Hope is coddled in Gods embrace <3 Ashley Gonzales, WA

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  160. You are now in the midst of a nightmare that all "heart parents" worry will some day be their own. I just know that there is nothing that can be said to ease the intense pain you are deeply in the throws of right now ... nothing.

    Blessed are those who mourn for they WILL be comforted.

    Be blessed.

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  161. A precious entry. What an example of faith and trusting in our Great God. You are loved.

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  162. Amy, Shawn, Sadie,

    Deepest condolences on the loss of your precious baby Hope. I have been quietly following your blog through a mutual friend and I want to say thank you for sharing your journey and Hope with us. No words can express the true sorrow of the situation, but take a small comfort knowing that your words have inspired many. Through you, Hope has inspired many. Through your generous words this past year, Hope has gained many fans. Take a small comfort knowing you are not alone and your grief is shared by many. Your strength, resilience and selflessness during your journey with Hope, one filled with highs and lows, is not only impressive, but inspiring. You continued to advocate for Hope's quality of life and you were her biggest cheerleader. Hope fought the good fight and she was lucky to have you along the way in her life and to know you, even if it was for a short time. Every person that your story has touched, that Hope has touched, can think of a special person gone too soon that will be looking out for Hope along her next eternal journey.

    Now it is Hope's turn to take care of you during this new journey ahead. To lend you the strength that you will need in these difficult times ahead. To lend you the knowledge so you may know that it is okay to feel sad, as you have lost something very dear. To lend you the courage that you will need to continue to raise and support Sadie to her fullest potential. To be the protector of your family during times of weakness and vulnerability. She may no longer be in the present, but her spirit lives on. Memories are what you have now and what you will cherish until one day you meet again.

    Until then, it is better to have loved and lost, than to have never loved at all.

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  163. I'm so sorry for the loss of your precious Hope. I can't begin to comprehend the profound loss you must feel. God bless you all and our prayers are with you.

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  164. Amy and Shawn, I can only think of Psalm 46:1: "God is our refuge and strength, an ever present help in trouble." My prayers are with you.

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  165. When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight. K. Gilbran

    Although we have never met...we share a kindredness of soul as we too lost our precious baby girl...our delight...our Grace in 2009.

    Praying for the good Shepherd to comfort you in ways only HE can in such a time as this.

    Nelia

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  166. i am so so sad to read this. i have been following your story through my friend alissa. <3

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  167. May you feel God's loving arms around you at this time. Many, many prayers for your family. You are a strong family and truly an inspiration to all. Hope's heart is full and beating strong now. I am so sorry for your loss.

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  168. I weap for the sadness of your loss (I am the first time mom or an almost one year old.) But am so touched to think of your sweet little girl running free with our Father in Heaven! What joy on the day you get to see her again. My thoughts and prayers are with you and your family.

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  169. May the God of all comfort be your strength these days. Thank you for sharing your very long hard journey with us. You don't know us but my daughter Jes has kept us current and we have prayed for you and Hope every day. You and your family are an amazing and godly inspiration to us. We continue to pray for you all in this very sad time. Joni Dekker

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  170. Amy, Shawn, and Sadie, I have been following your blog for many months, through a mutual friend. I have shed many tears for you today, and there are no words I can write to express my heartbreak for you. May you all receive the comfort you need as you go through this terrible loss. Amy, your honesty, your passion, and your faith and trust in God is truly inspiring.

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  171. Crying for you. Praying for you. My deepest sympathies.

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  172. While you do not know me, I have been reading your blog on and off since your precious Hope was born. I came across it thanks to Baby Lukas' facebook page as she was a classmate of mine. On top of all this, I am a NICU nurse in Calgary. These lives are so precious and it is amazing the way God works. While I cannot imagine being a parent of a child in the NICU, I have just recently had my first child and I must say, it is that much more amazing what you parents endure for your children. My thoughts and prayers are with you through this tough time after your precious little girl has gone to be with Jesus. But do not forget that despite all the hard times the last 13 months have given you, she brought your family light. Do not give up, do not suffer, for you were given the best gift of all, to be Hope's parents for her short time here on earth. She got to be loved, and cherished by you and her sister. Her purpose was served, to be your little girl. She was beyond blessed to be loved by your family, and all the individuals following you. May your hearts mend and joy be brought to your family to have known such an amazing little fighter. Sending you as much love and many prayers as possible. You will not be forgotten precious little Hope.

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  173. My husband and I have also been silently and prayerfully following your story through friends of ours. We can not begin to imagine the magnitude of emotions that you must be going through right now. I am a nurse who used to work on one of the units Hope was in, and from reading posts and comments of fellow nurses, who have shared this blog post, I can see that you, your family and Hope has been a testimony of Jesus' love and grace to all around you. The hospital can be a dark place, and I am amazed by how you have persevered, fought for your daughter, and authentically lived and shared the reality of what you've gone through, as well as how you have been able to cling to the love, hope and sovereignty of God.

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  174. John 11:35: “Jesus wept.”

    As we all do for you and yours, Amy and Shawn.

    I pray that you will allow Jesus to carry you all on his shoulders until each of you are truly strong enough to stand again on your own.

    Every tear accompanied by a prayer.

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  175. It is with a very heavy heart that I offer my most sincere condolences for your incredible loss. I'm sure that your little one is grieving her loss of an unbelievably dedicated and tirelessly loving mom and dad. Sharing your very private moments and deepest thoughts with all of us praying with you is Hope's legacy. She will live on as we remember the great battle she fought. Now pain free, healthy and happy, Hope likely knows that someday, you will all meet again. Thank you for sharing your story.
    My thoughts and prayers are with you as you get through this time of sorrow and grief.
    Hugs,
    Susan (you're neighbours mom)

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  176. From one mother to another...my heart aches for you. Thinking of you and praying for your family.

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  177. Dear Amy, Shawn & Sadie, there are no words that anyone can say that can ease the unbelievable grief and pain you are feeling. I have followed your facebook and blog over the past year, have prayed for precious baby Hope journey, as well as you & Shawn. Know that your lives are a testimony to the amazing power and grace of God. You have stood strong and believed God and pointed people to the Father along the way. We praise God for the privilege and honour of being able to be part of this journey, praying and interceding and crying out to God for you and a heart for Hope that she may be able to live in divine health. We will continue to pray and the Father will carry you through the hours, days, weeks, months and years ahead until you meet in Eternity. How wonderful it will be to see the fruit of Hope's life in eternity. My tears are many for you. I'm reminded of the scriptures in Isaiah, the characteristics of God's Kingdom ch65:17-25. Every tear will one day be wiped away. Precious Hope does have a new heart and body, she is dancing with Jesus.
    Until then our prayers are with you all. I'm reminded of the song "I can only imagine" by MercyMe - this is the first verse
    I can only imagine
    What it will be like
    When I walk
    By Your side
    I can only imagine
    What my eyes will see
    When Your face
    Is before me
    I can only imagine
    I can only imagine
    Surrounded by Your glory, what will my heart feel
    Will I dance for You Jesus or in awe of you be still
    Will I stand in Your presence or to my knees will I fall
    Will I sing hallelujah, will I be able to speak at all
    I can only imagine
    I can only imagine

    Praying that Our great and merciful Father will pour out His peace and comfort every minute of the journey ahead.
    Our love from Meg & John Sbrocchi. Australia

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  178. Such a long and tiring journey; yet I can understand you long for just one more day with the restrictions in your freedom just to hold her one more time. May you feel God close in this time.

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  179. Amy and Shawn – I heard of your story through a friend and have been following your blog and praying with you since your journey began. I was deeply saddened to read this post – my heart aches for your loss and I am grieving with you from afar. Thank you for sharing your story with us…your family and little Hope have encouraged so many by allowing us to share in your journey, and your courage and strength has been an inspiration. Hope could not possibly have had better parents – your love and commitment to your little girl is absolutely incredible, she was very fortunate to have you as parents. I pray that God will bring you a peace and comfort during this time amidst your sorrow and pain, in knowing that Hope is free from pain and rejoicing in Heaven with our Lord. May God be with your family during this time.

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  180. I do not know your family or your precious daughter, but were aware of her situation. Over the months, my 4 year old daughter and I would pray for Hope when she went to bed at night. My heart is breaking for your family...I can't imagine how shredded your hearts must be. Our God is holding Hope in His arms and your precious baby is completely healed and free of all pain. May this truth bring you peace until you are able to be reunited with her one day. It is a terrible feeling when you can't help take away someone's pain, but we will continue to fervently pray for your family in the days ahead. Many lives were blessed by your daughter and I believe she taught us all to treasure every single moment with those we love. That is a special gift to the rest of us.

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  181. Dear Amy,Shawn,Sadie,and family,

    The Lord is my shepherd;
    I shall not want.

    He makes me to lie down
    in green pastures;
    He leads me beside
    the still waters.
    He restores my soul;
    He leads me in the paths of righteousness
    For His name's sake.

    Yea, though I walk through the valley
    of the shadow of death,
    I will fear no evil;
    For you are with me;
    Your rod and Your staff,
    they comfort me.

    You prepare a table for me
    in the presence of my enemies;
    You anoint my head with oil;
    My cup runs over.

    Surely goodness and mercy
    shall follow me
    All the days of my life;
    And I will dwell in the house
    of the Lord
    Forever.

    The 23rd Psalm

    I pray at this time, that you will experience the love, peace, and comfort of our faithful good Shepherd, in a way that is more real than you have ever known before.
    I pray you will find rest in His green pastures; peace and restoration for your souls through His faithfulness and in the precious memories of Hope's beautiful life.
    And I pray hope in the promise of a glorious family reunion one glad morning.
    I pray the anointing oil of His Spirit, overflowing in your lives, along this difficult path of your journey.

    I am in prayer for all of you.

    Thank you for the courage you have had to share this journey of such a remarkable and precious life.

    Peace, love, comfort.

    Janice Berard

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  182. Amy and Shawn -
    I have been following Hopes journey ever since I saw it on two mutual friends facebooks. Thank you for posting your story. I am grieving with you and your family at this time.

    Lamentations 3:31-33
    "For men are not cast off by the Lord forever. Though he brings grief, he will show compassion, so great is his unfailing love.For he does not willingly bring affliction or grief to the children of men."

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  183. Dear Amy and Shawn: I am praying for you with all by being, that you will be able to find some peace and comfort. Hope was an incredibly precious little girl. You have had such a roller coaster of a journey and yet the strength that you have found, when at times I could only think that there was nothing left in you. My heart is hurting and tears will not stop flowing as I think of all of you and your family. Amy I am grateful that you were able to be with you little Hope and hold her in your arms; that she is now pain free and now has a whole heart. I feel these words are so inadequate and it is impossible the find the words that could even come close to expressing my deep sorrow.

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  184. My heart aches for you...I have a child with HLHS and lost another child to a similar heart defect. Its impossible to understand why but I pray that you have strength to carry on.

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  185. I am so sorry for your loss. I started following your blog when I saw the link on a friend's Facebook page. I have been praying for baby Hope and your family for the past several months and even more so in the past few days. May God continue to uphold you, love you and give you peace.

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  186. Prayers abound for you in this season of grieving.

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  187. I've never met you but have several mutual friends and have been following Hope's story for several months. May the God of peace comfort you in your sorrow as you grieve the loss of your beautiful girl. Shortly after reading this post I heard the lines from this song and thought of your incredible faith. "Christ alone. Cornerstore. Weak made strong in the Saviour's love. Through the storm, He is Lord. Lord of all!" xoxo

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  188. Dear Amy, Shawn and little Sadie,
    This is a fresh reality for your family, you may not even read all of these posts right away. I have been following your story for a short while. Your blog was a share on Facebook from a friend whose son was also born with HLHS. Tonight I have wept for you as I read of your loss. You may feel right now that your own heart has been ripped away. Grief. Disbelief. Numbness. I pray God will heal your wounded hearts as you begin your grief journey. Love, Sharon K. Guelph ON

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  189. Amy,

    I am so, so sorry for the loss of your sweet baby girl. My friend Charlotte Seehawer was the one who first told me about Hope, and I have been praying for her and for you and other loved ones. I truly believe that God is gracious and merciful, but it's still so hard to reconcile that belief when you grieving. I know that Hope is safely home with Jesus and that one day, you'll all be together again.

    Please accept my condolences. May Hope rest in heavenly peace and may your hearts find peace as well.

    Pamela

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  190. Dearest Amy, Shawn and Sadie,

    Even though we've never met, I mourn for your baby girl like one I know dearly. Words cannot convey my gratitude for you allowing yourself to be so vunerable and honest along this journey with so many people. Your life and faith is a testimony and reminder of God's grace, faithfulness and steadfastness.

    All my love to you and your loved ones. I will be praying for your peace and acceptance and healing. I pray also for God's immense blessing be on you and your family.

    x Cath (a friend of Ryan and Christen) x

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  191. I lost my baby recently. It is very difficult. But God showed me that we are only here for such a short time on this earth. Eternity is bigger.

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  192. Though we've never met, my heart breaks for you. Your story reads as any parent's worst nightmare. I'm so sorry that you've had to endure it but trust that God can somehow work this for His glory. Praying for your family as you deal with your loss and trusting that she's running and laughing with her Heavenly Father.

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  193. Praying for your family. We've followed your story through a friend, and I'm just so sorry to hear things turned out like this. Our thoughts are with you all.

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  194. Sarah Vander Munnik22 May 2013 at 19:06

    Mourning with you and your family. I wish I could understand God's Perfect plan but I know we never will until we can see things from His perspective. Love and prayers sent to you on this very difficult days and in the days to come.

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  195. I am so sorry that you have lost your baby. I have followed your family's journey. I don't know you but your amazing strength and resolve have helped deepen my faith in God. Hope truly has given hope and she has affected many lives, many strangers like myself. Will continue to pray for you and your family.

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