After a completely exhausting day I find myself laying here at 10 after midnight wide awake or maybe just to numb to sleep.
Its hard to even remember where we were this morning, or yesterday or last week. So much has happened since then. I no longer know what day it is or how long we’v been here. I don’t know who I told what or how we ended up here. It’s all a blur.
All i know for sure is that waking up this morning with Kai pressed against my chest was a gift. Holding him so close, feeling his breath with my heart, feeling his heart with my sole.
I am so grateful for the nurses and doctors who are doing everything they can to keep him safe and comfortable so I can just lay with him. We went back and forth a few times with the idea of taking Kai home for this last journey but I am honestly grateful we are here. I don’t have to keep track of meds or wonder if I have done the right thing. I don’t have to worry of whats to come. I don’t have to be Kai’s nurse anymore. I am so thankful for that.
And although we are not home, we have been completely surrounded by comfort and love.

Early this morning when it was just Kai and I, I cried quietly into my pillow as I held my little boy like nothing outside that room, that moment, existed at all. I tried to cry quietly so he would not feel my pain but only my warm tears sliding on to his warm face. It was the hardest and most beautiful part of my day.
As the early morning went on it was becoming obvious that a lot had changed overnight. More than I was expecting. He was in a lot more pain and we were not managing it as well as I would have liked. At one point he was so on edge that moving him, holding him, touching him made him wince in pain. Even in his sleep he had a slight whimper and whine with every exhale.
I was not expecting it to get this much worse this fast.
Once his doctors heard that I was afraid to touch him they immediately made a new plan. But as soon as we felt like we got it right, a few hours later we’d be chasing the pain again. By this evening we started him on a morphine drip. He is till getting other meds but this seems to have made things a lot more manageable. He has had times of alert wakefulness where he has not in pain. He have been able to hold him and see his eye again.
We got our new room back in the 9th floor, back with the nurses and staff who has cared for Kai for the past 16 months. We had waves of visitors and messages and the night was filled with love and peace.
After the early morning hours I spent most of the day pretty well composed. I played with Kai, smiled, laughed, kissed him. I shared photos and memories from his life with anyone who came to visit.
We had moments of tears but there was a lot of laughter in this room tonight.
And then when everyone was gone and it was quiet again and Kai was resting peacefully next to me, I read the hundreds of messages you all have been sending and I let myself cry.




93 thoughts on “Friday

  1. I am thinking of you two every minute of the day! I truely admire how strong you are. It was a pleasure to be able to meet Kai at Moco and have time for Owen to play with him. Your are an amazing mommy and you and Kai are each others angels. You make us all truely realize how to appreciate the small things in life.

  2. Kerri,
    I am holding you and Kai and the rest of your family so close to my heart. Praying for comfort and peace for both of you. I am so sorry you are all going through this.

  3. You and Kai continue to touch me deeply. My family prays for you all and those proessionals who support you for this chapter.

  4. Love and hold him every minute and love him all you can–he knows your touch–a Mother’s touch and when it is time for him to go tell him it is ok!! Praying for peace!

    Sent from my iPhone

  5. Kerri,
    I am so thankful that you have let me into yours and Kai’s life. You both have truly become a part of me. You have always been the strongest person I have ever met and I’m glad for once you can just let yourself feel all the emotions you have held back for so long. I have not stopped thinking about you or Kai and I really hope that you both have been staying strong. Kai has touched so many peoples heart. I love you both to the moon and back.

  6. You and Kai are the strongest people I have ever read about. I don’t think I could be so strong. Sending all my prayers your way that Kai can enjoy every moment next to his mama.

  7. Holding you close to my heart and praying for your peace and strength. We are all thinking of you and sweet Kai, you are not alone…your bt family is with you always.

  8. Hi Kerri-

    I heard about Kai through a mutual friend from somewhere else, and read your blog only to discover that we are fellow Perkins Infant Toddler group parents. We go to Tuesday group; I am guessing Kai did Thursdays? If there is anything the Tuesday group can do – food, laundry, fund donations, etc., please let me know or Ruth know so she can pass it on to us. Much love to all of you.

    1. Also, looking at your pictures, I am pretty sure we were in the same parent support group at the Perkins Early Childhood conference this past April – the one for kids with “other issues”. Optic glioma rings a bell from there.

  9. I have watched for your update knowing that many hours have passed between then and now. So glad you can hold Kai close and cry with him. Remember we do not dissolve in years, we share them. We are with you in every way we can.
    Love to you,
    Carol Lee

  10. Kerri- thanks so much for sharing your moments ..your story ..and all the pictures -so beautiful. After reading all your posts I am always left in tears – I admire your strength, your beautiful words, your courage,..you are truly an angel and an amazing person..I can’t emphasize that enough. Honestly words truly just cannot express… I hope one day I can be as great a mother as you are to Kai..he is a precious angel. I think of you all every moment of every day and am sending lots of love and prayers. xoxo

  11. I pray for all of you each day, I lite a candle for your family. You are a amazing Mom. I just want to say, you make me and I am sure everyone who reads this realize how petty peoe are. Things that matter, things that don’t. As I read you journal I have learned south from you. You and Mark and of course your beautiful son are always on myomere almost haunting like. I pray for you all. I send my love to you. Lorraine

  12. We met once last fall in a MoCo playgroup, but through a few mutual MoCo friends I have been hearing updates about your year, your struggles, and your incredible strength. I know I barely know you, but I just wanted to write to say that you and Kai and your family are in my thoughts and in my heart. I wish for you and Kai love, peace, and comfort . Again, I know we don’t know each other but I am in awe of what a strong, loving and wonderful mother you are. I am sure Kai has felt this incredible love and known how lucky he is to have such a truly amazing mother.

  13. Kerri my thoughts and prayers are with you as they have been my friend. There are no words for what you are going through. I wish I was closer. I wish there was something I could do but I know there isn’t. We love you and are so terribly sorry. We will continue to pray for comfort and peace for all of you. Love Aimee

  14. I hugged my boys a bit more tightly than usual last night. I also looked into their eyes a bit longer, and silently sent you and Kai waives of love and peace. I do not know how you stay strong. But, I do know that your story and the story of your beautiful boy has created ripples of love, inspiration and courage in other people. You, Kai and your family are in my thoughts. Etel

  15. I’ve never met you but my heart breaks for you. There are just no words that can express our sorrow for the devastation you and your family are forced to endure right now. I hope in some small way sharing it with the rest of us and receiving our love and positive energy helps. I wish I could turn back time for you and make it all better. It’s just so unfair. Kai is just so lucky to have you as his family fighting for him and loving him so deeply. I wish you peace and what comfort is possible. Your village surrounds you and will help any way we can.

  16. Thank you so much for sharing your family’s struggle. I once heard a man say that our tears are a gift we give to the world around us and that we shouldn’t be afraid to cry. I won’t wipe away these tears for you and Kai. He’ll be in every one of my prayers. Much Love to you and Kai. Aho mitakuye oyasin.

  17. Kerri, I have thought of your family everyday since the day I met you and Kai last summer. My fight club bracelet is always on my wrist. When people ask me about it I tell them about this brave little warrior I met and his strong mommy that keeps him safe and comfortable. Don’t ever doubt yourself, you have done all you have with love. I hope to see you at camp this summer, I will have hugs and love waiting for you. May the next few days bring you and your little warrior peace.

  18. I do not know you or your precious baby. As a mother of 4 I wish I had the words that would comfort you and your family; if only there was something even a stranger could do. Please know that your baby and your family are in my prayers and your words are inspirational to all mothers. Much love to you and your family.

  19. Hello Kerri~

    You are in my constant thoughts and prayers. I so wish I could do something to make this better. I know that Kai feels your love. He is so lucky to have you. Please let me know if I can do anything.

    Sending love~

  20. Kerri – thank you for sharing with us so openly. Your love comes across so clearly in the words you write…you are an amazing mom and Kai is such a special boy. We feel so thankful that we were able to meet you both this past summer in Maine. Continued thoughts of peace and love.

  21. Kerri,
    In reading your words I sense the brilliance of your love for Kai that only mothers are able to understand. I truly beleive that Mary the Mother of Christ is wrapping you and Kai with her sweet gentle arms and keeping you warm and loving you on this journey. My prayers are for calmness and strength.

  22. I just found your blog yesterday. I spent the day with it, from your first entry to the present. Words can’t express the depth of my pain for you, your precious child and your family. Wishing you peace and comfort in the difficult times ahead.

  23. Kerri,
    I learned of your story through Jeannette from MoCo. Know that you are in the thoughts and prayers of so, so many more than you know. I’m praying for peace and comfort and strength for all of you as you move through the next days.


  24. Your pictures and words are beautiful as is your precious son. The beauty of love seeps through them. Your story has touched me deeply as it has so many people. You are Kai’s angel, there is no stronger love than that of a mother for her child. May you feel the comforting embrace of all the love that is being sent to you and Kai. Praying for peace and love for you all.

  25. Kerri, you are so strong and amazing. You have fought so hard and been such an advocate for kai, he is blessed to have you on his side and i am so glad to hear you are being supported and you and kai’s needs are being met so you can stop fighting and and concentrate on being his mom and maybe not being so strong and leaning on those who love you and kai. Be at peace. Love you , Kelley

  26. A friend just sent a link to your blog about Kai. Sending lots of love and light to Kai and your family. In an earlier blog post you mentioned having professional photos taken. If you haven’t had the chance & still want to have them done, there is a beautiful organization of professional photographers who volunteer their time & photos to take photos of terminally ill children and they will do them in the hospital or in your home. There are many volunteer photographers in MA & New England and a photo shoot can usually be arranged within a day.
    American Child Photographers Charity Guild


  27. Kerri, My thoughts and prayers are with you, Kai and your family. I am here if you need anything. Much love to you and Kai at this hard time. Love Jaime & Dylan Niedzwiecki (from moms group)

  28. Kerri, I came across your blog via a mutual friend. All I can say is that Kai is so fortunate to have you for his mama. He is a beautiful boy, and he has all he needs with you by his side. I am holding you close in prayer as you go through this next phase of the journey. God bless.

  29. I don’t have the right words. I’m holding you, Kai and your family in my heart. Sending lots of love and peace your way.


  31. You have been and will continue to be in my thoughts and prayers. Praying for peace beyond understanding and joy amoungst the pain. Holding your heart in mine, along with a lot of other mama’s.

  32. Hang in there buddy, since my wife told me about this story I can’t stop thinking of him. Stay strong. My prayers are with you and your family.

  33. Kerri, my heart aches for you. You are such an amazing person and Kai could not have asked for a better, stronger, more loving mom. You are all in my thoughts and prayers.

  34. Kerri, this is the most beautiful love story I have ever read. Thank you for sharing it with all of us. I continue to pray for your family. Hugs!!

  35. I recently learned of your story and wanted to let you know that you are in my thoughts and prayers. Wishing you moments of peace with your sweet little boy.

  36. I recently learned of your story from Jeanette. I wanted to let you know that you are in my thoughts and prayers. I wish you some moments of peace with your sweet, little boy.

  37. You all have been in my thoughts constantly today. I pray Kai is not in pain and resting comfortably. My heart aches for you all. May God watch over you and give comfort.

  38. Keri,
    My heart aches for you and your family. We are part of the Boston tubie group you started. You are an amazing mother and Kai is a little fighter. Big hugs and kisses from one mom of a miracle to another mom of a miracle. We are chosen to be the mom’s of these little ones for a reason. Love and hugs
    The Potts Family

  39. You’re an amazing person and Kai is so lucky to have you. We are all lucky to live in a world that has had him in it. We’re thinking about you and your family every day and sending love. Lots and lots of love!

  40. Sending love and light your way. You all are in our prayers, thoughts and hearts. Keep holding that sweet little guy. We have all been blessed by knowing him and you! *hugs and hugs and hugs*

  41. I am brand new to your page, found it through a mutual friend so I do not know your story beyond what you have shared this wk but there are no words to describe…. You will constantly be in my thoughts and prayers add the rest of this journey unfolds.

    You are an amazingly strong momma and he is beyond lucky to have been blessed with such a living family for hisjourney

  42. My heart aches for you and Kai. Sending all my love and prayers to all of you. Your writing is amazing and beautiful. Kai is such a lucky boy for having you as his momma. Love Ann and Sofia (MoCo mom)

  43. Kerri-I am so sorry you are going through this. You and your family are so strong and amazing. My heart breaks for you. I’ve worked and sat near your mother for 15 years and I think and talk about Kai all the time.

  44. Hello, My name is Lisa DeLuties, I am the cousin of Kristen Nicholson who informed me of what you and your little boy are going through. You are an amazing writer and Mother. There are no words to express my sorrow… Please know that people you have never met are praying for you and Kai. What a beautiful little boy & Mother.

  45. Although we have never met, I feel close to you by reading your entire blog from
    4:30am-7:30am this morning. I feel your pain, sadness, loss, and am just so very sorry that you are losing your precious, innocent boy. Through your blog, I can tell you that your strength, your instincts, your dedication and amazing mothering has been so inspirational to others. You have lived through hell and I just wish a miracle could have cured Kai. My prayers are with you as you endure this last leg of Kai’s journey.
    My son has aplastic anemia and is weaning off immune suppression. I have experienced some of the worries, agony but never to the extent you have. Please remember how amazing you are and what a fabulous mommy you are. I hope one day in the future you will share a bond with another baby in your life. You have so much love to give and you deserve some normalcy and a second chance at motherhood.
    May Kai go peacefully without pain into heaven and always be your sweet guardian angel and rest in peace.

  46. Dear Kerri, Kai & family, I’ve been out of town and missed Thurs & Fri’s posts till now. My prayers are with you. This is all so difficult, there are no words to convey all our heartfelt thoughts and prayers going up for you and your incredible son….. prayerfully, terri (gage’s mimi) & family

  47. I am very sorry the pain and struggle that you your boy and family are going through. My thoughts and prayers are with you and kai. God bless. Keep your head up. Xo

  48. We all cry with you and admire your strength and his strength. To share your story, Kai’s story, is a gift to us and a testament to him and to your love. There are thousands of people across the world that are praying for Kai and for you, even many people who you have never met. Kai is touching their lives and that’s powerful. Sending you a virtual hug, from many thousands.

  49. So glad that you are able to be close to Kai, and that the two of you have these moments together. We are thinking of you always and sending you lots of love. I am so happy that for now your only job is mom…

  50. My heart aches as I read this journal entry! Your strength and love for your son is amazing. To share your moments with us is a wonderful testament to your love for him and to share him with the rest of the world. I wish that he was not in so much pain. . . There are so many people lifting Kai up with prayers . . . please know that you are not alone during this part of your journey! Our hearts are there with you! Treasure the moments that you have . . . make them special and your own! You will always remember how wonderful it feels to have him in your arms . . .to have shared special moments together and just have that wonderful bond that a mother has with her son! Thank you for taking us along your journey with you! I pray for comfort and peace for Kai . . . I pray for love and support for you! HUGE HUGS! ❤

  51. You’re on my mind and I’m sending my
    Deepest heartfelt love to Kai and to you mama!! I heard about your story through PNF and saw your story posted on some mutual friends facebooks, Kai is a beautiful, amazing, strong human being who I’m sure got all these traits from you.. I will continue to pray and think of you. E.M

  52. I want to give you a hug right now and hold you along with your son. My heart just balls up inside of.me thinking about what you’re going through. I can only imagine and the imagining makes my heart hurt bad enough. I held my own son the first time I read your blog on Thursday and just cried. He’s 3 months old. I always tell myself if anything happened to him, I’d be okay. I’d be strong. I will get through it. But I would never choose that road if I had the choice. And I’d say I’m sorry you’re where your at, but that doesn’t fix anything. Nothing will. But I do know that little boy will be so much happier wrapped in Jesus’s arms than we can even fathom. Just know that because of you and your sweet son I’m holding mine a little tighter thankful for every breath that he and I breath. Cause I know it can be gone in a heartbeat. Lots of love and prayer for you. How I wish I could do more. Lindsey

  53. Kerri,
    I don’t know you, but I wish I did. I have spent hours over the last two days reading the blog – I have smiled, wept until I can’t see, reflected, and prayed. This is a beautiful love story – one that I will share with my own children. Our family will continue to keep you and Kai in our hearts now and probably forever. I walked through Boston yesterday and saw babies everywhere! And, in each one I saw Kai, and in every mother, I saw a bit of you. I think in some way it will always be that way – I hope so. And, I hope it is for you also. I wish you strength, I wish you peace, and I wish Kai comfort and warmth as you continue your journey. Much love.
    Mary Ann

  54. Dear Kerri – I havent stopped thinking about you and Kai since I read your blog for the first time on Friday. I am so glad he has you. I am certain that he knows the vastness and force of your love and in that important way, I think he is lucky. I hope he has a good night tonight. I hope you have a good night tonight. I will be thinking of you both.

  55. Another MoCo mom here to let you know how much you have profoundly effected so many. Thank you for sharing your story and your strength. I don’t know you personally, but wish I did. Please know that there are hundreds, maybe thousands, of us sitting vigil for your family. Lighting candles, saying prayers, shedding tears. Sending you all the love and light we can.

  56. My 5 year old son walked in and saw me sobbing as I read your blog. He asked me what was wrong and I showed him the picture of you and Kai and explained that he way very sick and would be with God soon. We both dropped to our knees and prayed for your beautiful boy and your broken heart. We have all fallen in love with you both and hold you up in prayer god bless you

  57. I haven’t stop thinking and praying for you all day. My heart breaks for you. Kai will be among the angels to run, play, and forever dance in your heart. You are a brave woman who has done everything for Kai, especially keeping him safe during his last journey here on earth. Much love and prayers.

  58. Kerri & Kai,
    While I have never met either of you, your story of courage and love truly inspires me. Praying for Kai’s peace and comfort every night.

    Danielle & Lucas (Worcester Area Mom group)

  59. Kerri,
    You are my hero- you have so much love, courage & genuine pureness in you. Kai has had you as his personal angel on Earth and your beauty & adoration will forever be imprinted on his soul. His last two years have been filled with wonderful memories of your unwavering support. The images that will flash in his eyes will be beautiful loving eyes & smile & they will provide the soft sweet comfort of peace that he needs to cross over. You have be my hero plain & simple because most could not with stand what your life has brought you and yet you remain pure not bitter. Thank you for allowing my one and only daughter to be a part of both of your lives. You’ve taught her lessons I could never have & have also permanently taken a space in her heart. Hold on to every last moment & open your heart to all the love we continue to you both. Love Lori

  60. Thinking of Kai and your family. I have spent the last 2 days thinking about you and praying that Kai is comfortable. Kerri you are an amazing mother giving your child the best gift of all..love, comfort, strength, and the gift of making his final journey peaceful. My heart aches for Kai, you and your entire family/friends. May God watch over you all.

  61. Life is not fair.. i will pray for your hero who even when he sleeps fights the pain, and for mommy who is a champion by staying there for every heartbeat you can share with him. Most would not have the courage/will to endure what you are experiencing. Myself, Maya, and Savannah will b sending our prayers, and love. Danny

  62. Kerri,
    Hopefully you are all sleeping peacefully as I type this. I have been thinking about you all non-stop for the past week and am praying for nothing but peace and comfort for the three of you. There are so many mamas like myself who have only met you once or twice who are so in awe of your strength and devotion, and completely humbled by the intensity of your love. So many prayers for all of you!

  63. Yesterday I started reading your blog. Since then,I have been thinking how cruel God can be, but at the same time have been praying to take away all the pain from Kai’s body and give a smile instead. He’s soo cute, just love his big bright eyes. You are so lucky to be his mommy. I wish I could hold him tight.
    Praying for the little warrior and the amazing mommy….

  64. Kerri, your love for Kai has been an inspirationfrom the moment I met you. You have all been on such an amazing journey – thanks for sharing it with all of us. Thank you for bringing Kai into this world and sharing your experiences – love is strong, powerful and continues beyond this earthly experience. I wish you all great peace during this transition. You are being held by all of us, just as you hold Kai.

  65. Kerri,
    I can’t stop thinking about you and your beautiful Kai. You and your family are so strong, and an absolute inspiration. Please know that you, Kai, and your entire family are in my thoughts and prayers. I wish you nothing but peace, comfort, and love as you move through this transition.

  66. I am sorry that your beautiful little boy, you and your family have to go through this. You all are so incredibly strong and brave and I hope you know that there are a lot of people out there praying for you all. I hope you get to have more days where the pain is under control and he gets to be a “normal” little boy to where he can laugh and giggle with his loved ones. God bless you all and remain strong.

  67. We have a mutual friend, who has shared your story with me. Please know that someone you have never met is out there holding you and your precious baby in her heart. From one mother to another, my prayers are for you.

  68. words can not come close to saying the feeling I have in my heart right now, I have read some of your blog and I am in awe of your strength. know that even though we do not know each other, that I am praying for Kai also for you and Mark, that God will give you both the strength you need to carry on

  69. Although nothing will ever make things better, you should know that your story has touched many people, especially those of us who are moms. Thank you for sharing it with us. We are all loving our children better than ever and are letting go of things that really don’t matter. Your story has made all of us thankful for what we have. Although we have never met, you and your son will never be forgotten. Kai will forever know how much you love him, will forever know all that you are doing for him, and will forver love you for it. Peace.

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