Saying Goodbye

Update: we’re having a memorial service for Samuel on Saturday, February 4th, 2017. All are welcome. See our invitation for details.

Samuel David Kniley passed away peacefully in our arms today, Wednesday, January 25th at 4:30pm. We didn’t think his health would worsen so quickly, but today worked out much differently than we expected.

Samuel was doing well his first day, and was scheduled for surgery at 11 this morning, but overnight his breathing capacity started to decline. This is a common occurrence in Trisomy 18 babies, but Samuel started down that path sooner than most.

The medical staff started to give him increasing amounts of breathing support as his numbers worsened. In the morning his changes were gradual, and they thought he might make it another 24 hours or so.

img_4371But after lunch he took a turn for the worse and needed increasingly frequent additions to his oxygen support. He rapidly approached the upper limit of what the medical team could provide, and we agreed the best thing we could do was hold him and keep him comfortable.

Joanna sat in a chair next to his bed and we handed Samuel to her for the first time since right after she delivered him. Our wonderful nurse gradually disconnected his wires and tubes as they became unnecessary, and Joanna got to hold our beautiful little boy as his breathing became less frequent.

Eventually we sat together, and Joanna graciously let me hold Samuel for a long time. Joanna carried Samuel for nine months and delivered him into this world, and she allowed me to hold him as he left it. His heartbeat continued for over an hour, and finally stopped at 4:30pm.

Most of our family joined us in our room to hold Samuel for their first time and cry with us. Our nurse helped us make some memories and keepsakes, and Joanna and I got to pray and enjoy Samuel on our own after our family left.

img_4415img_4446img_4503We are so profoundly thankful for the gift that Samuel has been to us. We had 38 hours with him and are heartbroken beyond words to have lost him so soon, and we will grieve his absence for a long time to come. But he will always have an incredibly special place in our family as our second child, and we will cherish his memory forever.

We’re on track to come home from the hospital tomorrow. Our plan is to lay low for a while, and we’ll probably have a service in the next few weeks to remember and celebrate Samuel’s life.

We’re sad that we didn’t have time to share Samuel with so many of our friends and extended family in-person, but we’re so thankful for the many people who read this blog and express so much love and support for us. We might not be able to respond to every message we get, but please know that we receive all of your love with great affection and kindness in this difficult time.

Thank you for standing with us. We are thankful, and devastated, and grateful, and blessed, all at the same time.
– The Knileys

102 thoughts on “Saying Goodbye”

  1. Oh! I’m so so sorry. My heart breaks for you. Praise the Lord for the 38 hours you had with your precious son.

  2. Grieving with you all. Holding you in our hearts. We love your family. Love, the Ostrander’s.

  3. My heart breaks for you and words are quite inadequate right now. You are not alone, your sorrow is shared by me and all your brothers and sisters in Christ (as are your times of joy). God be with you.

  4. My heart is saddened by your loss but my faith is and has grown stronger by your very own faithfulness. Your love of Samuel is evident only second to your steadfast faith and love of God. You are all an inspiration and testimony to Christ our Lord. Peace of Christ be with you.

  5. Bob and Joanna,

    I’m speechless.

    I’m also in awe at the preciousness of a life.

    I’m astounded that you were able to communicate such deep emotions and profound happenings, as clearly and sweetly as you did.

    I’m hurting so much for your loss.

    I’m praying for each of you in the family.

    May our wondrous Lord Jesus Christ hold every tear, and transform them into nourishment and anointing for others.

    Sharing your sorrow,

    Cynthia LL

  6. I don’t know you, but I know this pain. My son, Joshua, died in my arms when he was 1 1/2 weeks old.

    I pray for peace and comfort for you. I pray that God will answer your biggest question for you…why? I pray that no bitterness will enter your hearts. I pray that God will be glorified in this tragedy. Amen.

  7. Continue to pray for your family, we are so very sorry for your loss, may God bless you and shine his blessed grace around each of you

  8. You are in ny thoughts and prayers during this difficult time! Thank you for sharing Samuel with all of us… he has made his mark and is in the hearts of many and will not be forgotten!

  9. Samuel is safe in God’s arms now. May His arms surround you both and help to ease the pain of grief as you celebrate Samuel’s short life. I know that you will treasure the experience all three of you have been given. My thoughts are with you and may God grant you the solace of those memories.

    Aunt Priscilla

  10. Im so sorry to hear that you had to say bye for now to your sweet Samuel. I just heard about your story the other day through the MOPS page and have been praying for your family since. I too have a son that after 18hrs went to be in our heavenly fathers arms. He had Trisomy 13. As I read your last post as you said goodbye it was like I was reading my own from 11yrs ago. Those moments you had with him are priceless! Praying Gods peace that passes All understanding continue to fill your minds, and the joy that can come only from above fill your hearts as you rejoice in the moments you had with your sweet angel. Some of us have to live our whole life to accomplish our purpose, but then some complete it in hours! His life will touch so many and your testimony that through it all God is faithful will change peoples lifes! God Bless you and your family!

  11. Our love and prayers are with you and your family as you mourn and process the gift of Samuel. May God’s grace, presence, and comfort be known to each of you..

  12. I am so heartbroken for you. I’m praying for you all as I write this. I pray for an overwhelming sense of peace to come over your hearts and I want you to know how deeply touched I am by your journey.

  13. God Bless you through this time of letting your angel fly back into the arms of the One who created him.

  14. Samuel is loved, and you spent your hours with him wisely. You and your family are so strong- even if it might not feel that way right now. Your faith will see you through.

  15. So, so sorry for your loss. I’ve been praying and will continue to pray for your family. He is in his Father’s arms.

  16. No words. Such beautiful pictures of your little family, together until you meet again at His feet. Sending our love and continued prayer covering.

    Love, Connie and Harry

    Sent from my iPad


  17. You don’t know me. I am a friend of a friend. But I have been praying for you and your family. I am so very sorry for your loss and I will continue to lift you up in prayer.

  18. I am truly sorry for your heartache for having to say goodbye to Samuel. Even though I don’t know you, seeing your pictures connects me to you. Now Samuel has history with the Elim family and so many others. Thank you for sharing your lil darling baby boy. You are in my prayers! Sending love and comfort.

  19. So sorry for your loss, especially so soon!! Prayers for peace in knowing that Samuel is perfect and free of any pain or struggle as Jesus holds your precious son. Prayers for comfort as your journey through the mourning process. Prayers for hope and joy in the midst of your sadness knowing you will see Samuel and be together in eternity.

  20. Wow I’m so amazed you were able to write this. Thank you for doing so. I’m sure no matter how much you prepare for something like this, that the reality is much more difficult. Your continued faith in the Lord through one of the hardest things that can happen in life will be a testimony to many who are struggling. Grieving with you, sending love and hugs.

  21. I started reading your story yesterday and feel as though I’ve been part of your journey forever. Thank you for having the courage to share Samuel’s life with all of us….the Angels must not have been ready to part with his perfection.
    Sending love and peace knowing Samuel’s life on earth, though too short, has touched so many.

  22. My heart breaks with you. Thank you for sharing this journey and beautiful boy with us. He is dearly loved. You will continually be in our prayers.
    John & Anna

  23. I am so sorry for your great loss. I also lost a son when I was 5 months pregnant. I know from experience how difficult this path can be here on earth. I thank our Lord and Savior JESUS CHRIST who abides in us for bringing you and your family through this loss. My prayers and thoughts are with you.

  24. Bob and Joanna,
    My deepest sympathy for your loss. May our Lord grant you and your family His grace, comfort and peace as you grieve your loss.

  25. My heart breaks for you guys. Joanna you are the most amazing women I know and so gracious in this time. u know it’s hard know but it says god will not give us anything we can not handle. Take the time you need to heal as a family. My love and prayers go out to you and your family. Rip little angel

  26. My thoughts and prayers are with you all. Thank you for sharing your love and grief with all of us.

    Thank you also for sharing your faith in God. You are a blessing and example.

    May you feel God’s loving arms wrapped around you during this difficult time.

  27. Bob & Joanna: (From Morelia, Mexico) Connie has been forwarding your postings and I have been praying for Samuel and will be praying for you.
    Harry Vellekoop

  28. ((HUGS)) and prayers to you both. May you feel Jesus walking close to you as you go through this time. Take care. ❤

  29. I am so sorry for your loss. This is the first I have heard of you and your situation, and I am crying along with you. Will pray for the Peace that passes understanding to continue ministering to your hearts as you grieve.

  30. I am a stranger to your family, but Baby Samuel has been in our thoughts, prayers, and hearts for some time. I am so grieving with you today and pray the peace of God that surpasses all understanding is with you.

  31. Kniley’s

    The foxes in canandaigua love you and are thinking of you in this time. We are here if you need us. And though we don’t know you personally, we extend our hearts out to you. If there is anything you need we will be here.
    God bless you.
    Jessica, Ryan, and Oliver

  32. My heart aches with you. Praying that you experience the comfort of God’s arms wrapping around you as you grieve precious Samuel’s life. Know that you are in my prayers and thoughts. ❤️

  33. We love you guys so much! I’m so happy that, although it was not very long, you were able to have such precious time with Samuel. It has been so inspiring to see both of you walk through this time with the grace and strength that you have.

    Those picture of all three of you holding Samuel are so precious. And I love the joy that Daniel brings. Praying for you.

  34. We love you guys so much! I’m so happy that, although it was not very long, you were able to have such precious time with Samuel. It has been so inspiring to see both of you walk through this time with the grace and strength that you have.

    Those picture of all three of you holding Samuel are so precious. And I love the joy that Daniel brings. Praying for you.

  35. Shedding some tears for you all as I read this. Praying for strength and peace for you. It is not an easy road. Sending you all our love.

  36. I sit here with tears in my eyes and praying for a family I have never met. Please know that support for you goes way beyond the body of Christ that you have met. Praying for peace at this very difficult time.

  37. Our hearts ache for you. Praying for comfort beyond our comprehension and the presence of the Holy Spirit to flood your hearts and the air you breathe. Love…….. to all of you. You are amazing people of faith.

  38. I am so in awe of you. Your family – the grace and strength that you have displayed is stunning. Thank you for opening up what I can only imagine is one of the my difficult experiences of your lives and sharing Samuel with all of us. He is loved.

  39. Sending heartfelt condolences to you and your family. My heart aches for your loss but celebrates one of God’s newest angels. Thankful for all the blessings and answered prayers and sad God chose to bring him home so soon. He is now where he can be free from all the pain and challenges of this world. Saying good bye is never easy, you and your family will continue in my thoughts and prayers. 🙏🏻🙏🏻🙏🏻❤

  40. Thanking Him for the precious time you were given. Our continued prayers for comfort and peace.

    Patrice and Jimmy

  41. Bob and Joanna, I am so profoundly heartbroken for you both… And for your families. This is a pain noone should ever bear. Know that you are loved and lifted in prayer… ❤

  42. Please accept our deepest sympathy. Samuel was beautiful. May the God of peace comfort you during this time. Love and prayers,
    Evan and Laurie Boyer

  43. We are so sorry for your loss. I’m blessed you got some time to be with him. Thanks so much for sharing your story.

  44. I’m a friend of Gen and Mikes and an attendee of New Horizon.

    Through the difficulties you’ve had to face since you first found out about Samuel’s illness and all the sadness and heartache you’ve endured, I find myself in awe of how incredibly strong you both are. You are living out every parents nightmare and somehow you’ve manage to do it all with complete grace. My heart is so heavy for your family. No one can possibly imagine what it is you are going through but I hope it brings you some comfort to know how many people are thinkin of you and sending their love to you.

    I pray that it is true… that there is truly a reason for everything and that God is truly in control of it all. I hope Samuel is being held in God’s arms now and that He will hand him back to you someday.

  45. We are so sorry for your loss. My heart breaks with yours. We love you guys and are praying for your whole family.

  46. We will continue to lift you all up in prayer and we are heartbroken with you. May the promise that you will see your precious Samuel again in heaven comfort you as you walk through this time.

  47. The two of you have been such a beautiful example of grace. I’ve been amazed by your strength and obedience. I can’t write this without feeling terrible pain and heartbreak for your family. Even though Samuel may not have been whole in this world, he’s perfect in heaven. We lost a son at 17 weeks and while our situations are tremendously different, I know that my arms still ache for him and I miss him every day. I pray for peace, for the pain to eventually give way to joy. But remember to allow yourself this season of grief. Find rest in the love your family & friends. And when you’re ready- please let us know if there is anything to need! 💕

  48. I am grieved and honored to have been allowed to know Samuels story. You are in my thoughts and prayers. May God bless and keep you abs may his face shine upon you. God bless you all.
    Warmest regards, Michele Koomen

  49. Bless you and the family. We had two miscarriages before we had our first. I am saddened with you and Praying for you and your loved ones. The good thing in this is you get to see him again in glory like we get to see those two that we lost. My heart goes out to you.

  50. I do not know you but my heart breaks for you. I’m sending you all of my love and prayers during this difficult time.

  51. With tears of sadness we grieve with you. May the Holy Spirit continually comfort you in your loss. May your transparent lives and courageous faith bless and encourage many. Hugs and love!

  52. our prayers are with you. our hearts ache. I pray the peace and comfort that only Jesus gives be overwhelming now and in the days ahead. we love you.

  53. I have been following your story and was so sorry to hear of your loss today. Bob, you and your wife are blessed to have such a strong relationship with each other and God as you have faced these challenges with such grace. My thoughts and prayers are with you and your family.

  54. May you be comforted by the prayers of so many who share in the heartache of the loss of your Beloved Son, Samuel.

  55. This is beautiful beyond measure. I pray for your comfort. From one bereaved parent to another I think losing a child is the hardest thing you will encounter in your life’s journey. But God walks with you. Though you will never stop missing Samuel, I promise the horrible grief you feel now DOES get better in time. Be kind and gentle to yourselves. Much love to you.

  56. Your faith and peace during this time encourages me greatly. I’m so sorry that you lost Samuel. Thank you for being so open and honest and heartfelt. I have never even met either of you but I can sense a strength that can only be from the grace of God blessings to your family.

  57. Heavenly Father, please wrap your arms around this family and let them feel your peace and love right now. As a sister in Christ, my heart grieves with them. Please show them that they are not alone. Sweet Samuel is in the warmth of Jesus’s hands just like my sweet baby and if we trust in the saving grace of Jesus Christ, we can rejoice in the truth that we will one day see them again in heaven. Amen.

  58. Dear Joanna and Bob,
    We both love you dearly, and as you know, have been praying for you both, and Daniel, and all the rest of your family members. Be assured that we will be continuing to do so.
    Hayden and Esther

  59. I don’t know you, I’m just a brother from the south of Spain. I just happened to read this post because it was share from one of my US friends that I made when I attended to bible school ten years ago.

    I’m expecting my second child (he is supposed to arrive next month). I cannot imagine the pain and sorrow that you must be going through right now. But know that your thoughts and the hope which comes and emanates from your words are both so encouraging and humbling.

    What an example of real trust and love for God in the mist of trouble. Thank God. In the mist of sorrow and pain, you are reflecting Jesus in such a pure way.

    All respect, love and blessings from this side of the world.


    PS: sorry for my English, I’m trying my best to improve

  60. We love you all so much, and you are in our hearts and prayers. If there is anything we can do for you, please call on us!! David & Marie. We are here for you!

  61. Thank you so much for modeling trust in our God and submission to Him. Our prayers are that God continues to grant you peace and even joy as you journey on through this grief. Yes, be exceedingly tender and kind to each other.

  62. Heart hugs and prayers your way,for their are no real words to describe the degree of pain and grief you must be experiencing . May His arms and love be around all of you . Sincerely, Josephine Ayers

  63. I am so very sorry to read of your profound loss. I hope you can know that a community of people, larger than you know, is thinking of you, grieving with you, and praying for you at this difficult time.

  64. Eric and I are so sorry for your loss. Thank you for sharing your journey with your son with us. Our prayers and tears are with you.

  65. We are so sad for you. This life is precious yet changes in an instant. Gratefully our God is constant and His love is forever. Samuel is loved and we thank you for sharing your story and your faith. You will never know the hearts you touched, but God will and the love goes on. Prayers still lifted for your peace and comfort. Jenny and Jim

  66. With tears streaming down my face, I read your heart-wrenching yet beautiful story of love. May God’s comfort be with you and your family as you go through this time of grieving.

  67. I grieve along with your family and friends. I know the pain of losing a child as I recently lost my firstborn son after 18 years. All life is a gift. We cherish the gift of life we were given. May family will keep your family in prayer.

  68. Thank you for sharing your precious Samuels story. Our hearts ache for your loss. We love you and are praying for you during this difficult time. Ron and Robin

  69. The pictures are beautiful. Samuel is so precious. So glad you got to hold beautiful Samuel and that he got to meet you and be a part of your family. Our sweet little Esther had Trisomy 18, – a precious gift from God. You said it well, “We are thankful, and devastated, and grateful, and blessed, all at the same time”. I understand. I’ve been praying for you and will continue to do so.

  70. Dear Joanna and Bob,

    We were so saddened to hear of Samuels untimely death. You are in our thoughts and prayers as you face the hard work of grieving and moving forward. May the Lord comfort and strengthen you.

  71. We are so sorry for this loss and your family will continue to be in our prayers as you grieve. How good you got to spend some precious hours with him, though I’m sure it went all too fast. Thank you for sharing the journey with us, and allowing so many people to pray, and rejoice and sorrow alongside you. You wrote that you are sorry you didn’t get to share Samuel with more people in person, but we are so touched that you were willing to share him and his story through this blog, and allow us all to know him a little bit this way.
    -Bill and Liz

  72. What a beautiful family you are. What precious pictures you have of him. There are no words that suffice. Praying for you. The Damdars

  73. God bless you all and thank you for sharing this heart wrenching experience with all of us. While i can only guess at your feelings, i am thankful you know the Lord intimately so that he can help you thru . Love and prayers and Blessings to you all and to grandma and grandpas too.

  74. You both are so brave to bare your hearts while going through such a difficult time. I am devastated with you and praying for you as you have the Memorial Service next Saturday. I pray He comforts your hearts and speaks to the deep hurting places, not only in the days ahead; but in the years to come. Our son is Samuel also… God has heard. I know He was with you and Samuel through each part from conception to His passing. He won’t stop hearing: Hearing your pain, Hearing your memories, and Hearing your love for Him, Samuel, and one another. You are strong.

  75. I’m so very sorry for your loss and the pain you feel. Please know how much you’re loved. I’m praying for you and asking God to give you His comfort and hold you tightly in His hands.

  76. This picture brought me to tears. It brought back the loss that I had and it’s something that holds on and it’s our minds that can find the blessings. Thank you for sharing your families joys and loss.


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