Oh Night Divine

It’s been 11 days since we were told Sophie had a week(ish) left. For most of those days, she’s been alert and comfortable watching movies, reading books, taking walks, and singing LOTS of songs. We have been surrounded by the people that love her and us the most. Our friends and family have showed up in a HUGE overwhelming way. It’s been the hardest but, most fulfilling 11 days of my life.

Christmas was just another Monday up here but, we celebrated the birth of Jesus without presents but, with a new appreciation for the TRUE meaning of Christmas. Because of His birth, His presence with us, and then because of his sacrifice on the cross Sophie will soon be running and dancing at His feet. She will have no more owies, no more pokes, no more chemo, no more laying in the bed day after day. She will be perfect. Because of Jesus, we will see her and her big brother or sister again one day. Oh thank you Lord for your Son and what His life and death have done for us. I’m honestly quite jealous of the celebration that awaits her when she gets to Heaven.

Jonathan and I have felt such peace with every decision we have made over the past 11 days. Discontinuing chemo and therapy was a hard but the right choice. She was full of poison for no good reason. We also decided to get a post death tumor biopsy so that Sophie’s tissue might further Aggressive T-Cell research and treatment for other kids one day. We are also hopeful that we’ll be able to find out what caused her cancer and why it was so awful and aggressive. Finally, we know moving back to Children’s was 100% the BEST decision. We instantly were surrounded by nurses and doctors hugging and loving on us-that has continued each day we’ve been here. They love us and Sophie SO MUCH and that’s why we came back here. They even threw us a little New Year’s Eve party last night with decorations and snacks. Truly, this hospital is full of the hands and feet of Jesus. Our lives wouldn’t be the same without them. We look forward to one day being able to come back here and to give back to the family that has given so much to us.

As far as how we are doing…..

This is impossible, horrible, and devastating, yet it’s also sweet, fulfilling, and oh so precious. We’ve had sweet moments as our little family of 3. Jonathan and I have told her infinitely how much she’s loved and how proud we are of her for being so brave and strong. We’ve told her that Jesus and her older sibling are waiting for her and that she has lots of relatives and sweet little friends ready to meet her. We’ve sung all of our favorite silly songs and recounted sweet memories of our time as a family. We’ve also told her that we will take care of each other and she doesn’t have to worry about us. They’ve been some of the sweetest moments of my life with the 2 people I love the most in this world. I won the absolute lottery with them both. My life will be so empty without her but will still be so full with Jonathan. I’m so thankful we’ve been able to grow together instead of apart through this.

A lot of that is in huge part to our families. Without them, we’d have fallen apart months ago. We have truly been experiencing Immanuel, God with us, in this hospital room over the past 11 days. We have cried, remembered, prayed, laughed, sang, and above all-we have WORSHIPPED our good Father. We have praised and thanked Him for Sophie’s life and for His complete plan for her life and even for her death. We believe He is and will continue to use her in a mighty way. We will never understand and it will never stop hurting but, we take comfort knowing she will be perfect and complete and that His plan is perfect and complete for us all.

Sophie is not in pain and is on oxygen that is keeping her from struggling to breathe even though her oxygen levels are slowly dropping. She is on pain medicine and is very comfortably sleeping. As soon as she’s ready to let go, we know Jesus is waiting with excitement and open arms for her. Until then, we’ll keep loving and kissing on our brave girl.

Please pray for our time. Pray for more sweet time as a family of 3 as we help walk her Home. Pray that Sophie would remain pain free and sleeping comfortably and that when her time comes, that she won’t suffer but will skip peacefully into the arms of her Heavenly Father.

Thank you for walking this with us.

33 thoughts on “Oh Night Divine

  1. I work in hospice. It’s been the most rewarding job I’ve ever had. Letting your loved ones be pain free and at peace is a beautiful thing. Prayers and hugs to your sweet family of 3.

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  2. I have followed your journey for a while now. You don’t know me and, in this world, our paths may never cross. But I wanted you and your husband to know what an impact your journey has had. I have a two year old granddaughter that is the joy of my life, and I think of Sophie each time I’m with her. Your family’s faith in God is one of the strongest I’ve witnessed. Sophie’s life has impacted so many and I pray that you feel and understand how amazing and impactful her little life is. May God bless you and your family in a most unexpected way. I know that the joy little Sophie will feel when she leaps to the arms of Jesus will surpass all that we can imagine. But it truly is your faith through the pain and your steadfast love for Christ that gives me chills. You and Jonathan are special, and God has great blessings for your future.

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    • I couldn’t have said it better Tina! I feel the same way. I have been following Sophie for some time now and I think of her and her family daily. She has impacted my life and I have never met her or her family. Last night I prayed so hard for the Lord to bring peace and comfort that only he can do. ❤️

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  3. Sweet Sophie, you will have my sweet Nevaeh up there waiting for you to show you the ropes. I promise you as much as it hurts, Heaven will show you what beauty we have ahead and you will see that no tears will be needed. You will be home soon and later on in life- mommy and Daddy will be there too when it’s their time. Protect them sweetheart, it’s going to hurt them terribly. We love you – the whole world does my sweet friend. Sending you love and peace and comfort xoxo

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  4. I cannot imagine your pain but your strength & faith are amazing! I can barely see as I type this but I’ve grown to love Sophie & you reading about how brave you all have been thru this awful journey! May you continue to find God’s strength & infinite love!! Prayers of comfort & peace!

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  5. Blessings to you three. You continue to amaze with your eternal perspective. We see life from such a dim and limited perspective but the Father has given you a glimpse of eternity. We are praying that the Lord’s mercy will continue to wrap you in peace as you await Sophie’s heaven bound departure. Grateful that you trust Christ Jesus’ work to deliver your precious baby whole. Love to each of you.

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  6. ‘The Brave Little Soul’

    Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, ‘Why do bad things happen; why is there suffering in the world?’

    God paused for a moment and replied, ‘Little Soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.’ The little soul was confused. ‘What do you mean,’ she asked. ‘God replied, ‘Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.’

    The little soul began to understand and listened attentively as God continued, ‘The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle – for the good of all humanity.’

    Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, ‘I am brave; let me go!! I would love to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!!’

    God smiled and said, ‘You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.’

    God and the brave little soul shared a smile, and then embraced. In parting, God said, ‘Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.’

    Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. People checked a website and sent notes of encouragement. People made and brought meals to the family of the suffering. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened.

    God was pleased ……

    (By John Alessi)

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    • I don’t know who this was originally written for, but it most surely describes Sophie and her entire family. God sent this special angel to this family for such a short time to leave his Blessings of Peace and Love to all of them.

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    • Thank you for sharing this poem with all of Sweet Sophie’s family and friends. You put into words how we all see this beautiful family.

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  7. Bless you and your sweet family of three. Such a great Mama doing the hardest thing ever imaginable. Walk her safely into the arms of Jesus and rest knowing that she is always with you. Always keeping you safe❤️
    #pediRN

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  8. What very devastating to read…but touching and precious words. Your family of 3 have absolutely left me speechless. I know for sure the Holy Spirit is speaking through you to speak to all of us about the faithfulness of our Lord through even the most horrendous circumstances. None of us who have spent these months praying for sweet Sophie and y’all know what the future holds. You have showed us in so many ways that Jesus will always be enough…no matter what we may face. Your words have put so many things in perspective for many of us. You have taught us what is important…even those of us who thought we knew. So incredibly thankful that you and Jonathan know the Lord and have introduced Sophie to Him. She will definitely know her Savior the moment her eyes meet His. What a day of rejoicing that will be! Just one look at His sweet face…all pain, tears, and confusion will be erased. He will kiss her cute cheeks and say ” Well done, my brave Sophie!” Big hugs and continued thoughts and prayers.

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  9. I have followed Sophie’s journey from the start. The faith of you all humbles me. I continue to pray for a peace that passes all understanding. My heart breaks for you all but yet you are finding a way to help others through the biopsy of the tumor. I believe her short life has made a very long and lasting imprint on the hearts of many. God bless you all.

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  10. I can’t imagine your pain but I am amazed of your faith. May god keep showering you with strength and peace and keep sweet Sophie pain free and in peace till god calls her home. Prayers your wayz

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  11. I’ve often asked my self why do I keep following these stories of children and adults with cancer on fb. Why do I read every story, & comments that goes along with these families and these poor innocent children with this deadly disease. I personally don’t have a answer, but my heart sinks and my eyes gets teary, every time I read a post stating that a child has died or the doctors hasn’t given them long to live. I haven’t followed your story that long, about your beautiful angel Sophie . But I truly want you to know that your beloved Sophie is in my heart and prayers. and that i pray god gives you the strength and comfort you will need in your time of loss. My prayers dear love,& also with your little angel Sophie.

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  12. Many prayers for you, Jonathan, Sophie and all of your extended family who love you all so much.

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  13. You all are a living a Testimony if Faith in our Lord! I have been Praying for your Sweet Sophie as well as your other 2 Children & you as a couple! I am Praying Sophie is able to enjoy her days here on Earth as pain free as possible & that when God calls her to Heaven it will be as easy on her little body as possible!
    God Bless you as you engulf every second you have with her & make sure the Tooth Fairy comes tonight!
    May you continue to lean into the arms of God for the Peace you need in these coming days, weeks & months that He gives you with Sophie!!!

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  14. Praying for you to feel the presence of the Lord and may He bring you the peace that passes understanding.

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  15. I just can’t find the words to describe how I feel about what Sophia an her parents have been though, my words are in everyone’s letters. As I follow her post my heart just gets more heavy, if I’m feeling down an her story pops up, nothing I’ve ever been though would compare to the pain of this Family, so instead I think of my blessings and how fortunate I am to have my family close by & healthy. On that day when Sophia goes to be with Jesus, my family will be shedding many tears for your loss, & some happy ones that she is free of suffering. God Bless you All ..your strength is AMAZING!

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  16. Thank you Shelby and Jonathan for sharing Sophie’s journey with so many people. Your love for Sophie has been a testament to our Savior. Sophie opened our hearts to receive your messages of God’s Love and to acknowledging that we don’t always understand the why that things happen, but, to understand that it is all within His greater plan. I stand by your side in love as you prepare Sophie to find eternal peace in the arms of Jesus and on the playground with your and ours who went before her. She will be beautiful wearing her wings she earned so valiantly. Many prayers and much love.

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  17. Many thoughts and prayers for you and your precious family! Thank you, for sharing your beautiful journey.

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  18. Dear Heavey Dather,
    I pray that Sophie’s homecoming is sweet and perfect just like she is, I pray that she leaves with a smile on her heart and perhaps on her face! I pray that her parents continue to find peace and understanding in this situation and that their hearts be light. I pray that God uses Little Miss Sophie as a huge lead in research, that she has not left us in vain but for a meaningful purpose. Thank you Jesus for the opportunity to meet this beautiful family, I feel like I know them personally and they were put here for a signifanct reason. They have touched so many lives and have eased our own pains in so many ways. Because of them, I don’t take life lightly, I don’t take the time with my children for granted, because of them, I count my blessing each morning and every night! Father, makes this transition a smooth one and give them a blanket of comfort the entire time.

    In Jesus name I pray….
    AMEN

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  19. I am so profoundly humbled and awed by your fierce faith during this most impossibly difficult time in your lives. I, too, have followed your journey with your amazing Sophie and have prayed fervently for all of you and for some sense of “peace that passes all understanding”. Sophie will be completely healed and be with God and so many others that have the great fortune to be healed and in heaven, too. I can tell you she has one amazing Grandma (my mom) there to welcome her with open arms. My heart aches for you as a parent, but my heart is full, too, knowing your faith is so phenomenally strong.

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  20. Bless you all, I am praying for Sophie to be able to enjoy what time she has left and to know it is O.K. to cross over when it is time. I’m praying for your strength to be there for one another when she crosses. Cancer changes peoples lives, I had it last year and you learn to look at everything differently. You learn to enjoy every day together instead of looking so far ahead. Every day is precious. I have been following Sophie’s story and praying for her every day. She has such strength and so do the two of you. You have strength just in sharing this story with others so they can also learn from it. God Bless all of you. Thank all 3 of you for sharing your story.

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  21. As I sit here and cry and ask myself why does stuff like this happen, it is clear to me now through your strength that something good is going to come out of this. And god is going to open so many eyes as it has opened mine. I believe your family of three has inspired so many, I pray for peace and comfort for you in these final days.

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  22. Prayers for your small but mighty family of three. My heart breaks for you. Your faith and the thoughts that you have shared are a beautiful tribute to such a brave, courageous and sweet little girl. Much love and prayers to all of you. 💟

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  23. My heart breaks for you all every time I read one of your posts. Thank you for sharing this most difficult, heartbreaking time in your lives. I pray for the strength that you all need to carry on. Your beautiful Sophie is in good hands.

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  24. My prayers and comfort to dear Sophie and your family..the hardest journey yet..have followed Sophie and her brave fight..this sweet girl has the prayers and tears of many like me who have never met Sophie..but feel that we do know this dear soul through your generous updates.. God bless..linda RN

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  25. How brave you and your sweet baby are. I lost my dear husband of 47 years yesterday to this awful disease. Unlike you, my friends and family stayed away. But I had my son, DIL and God and Jesus. Like sweet Sophie, my husband was so brave. He finally said no more and died in a beautiful hospice. Only God, Jesus and I were there but he peacefully took his last breath while holding my hand. I loved him with all my heart and feel his presence around me with God and Jesus. How happy he must be! Free of all pain,stress and worry…with God and Jesus, his beloved parents and all his other loved ones and friends. I know I will be with him some day for beautiful eternity.
    Sophie is so beautiful. Such a beautiful angel she will be. I know you will always love her with all your heart. Jesus is waiting for her with open arms.❤️

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  26. I’ve got two little ones up there waiting on sweet Sophie too. What a day that will be when her Jesus she shall see! Love y’all and praying hard for all of you!

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  27. You don’t know me, Kyle Planas is our connection. I dont Have the words, just please know that Sophie’s journey has a huge Following and we are all not only praying for all of you, but you are raising our faith by your words, faith and strength. Sophie has brought me closer to my faith, what a blessing, because she has touched many others the same way. I can’t do much, but I will make blankets for the babies at Children’s in Sophie’s name. God is good

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