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Bed time

Kai and I are all tucked in and ready for bed tonight. He had another sleepy day today. He has barely been awake a few hours total. He is so tired he just can’t keep his eyes open. His breathing is also changing. Yesterday I noticed a few gasps, and then again his morning. By tonight there where more gasps and his breathing has been a little erratic and shallow. He is getting weaker and skinnier. When I pick him up now he feels so fragile and frail. His skin seems so thin and delicate and he color is changing.

We have been working on getting his pain meds back through his g-tube rather than IV to make it easier at home, but honestly after seeing how today went I don’t think we’r going to make it home.
I had the nurse unhook his hydration line for a few hours this evening so we could just hold him. He did his best to keep his eyes open and entertain our constant kisses and touching. After about an hour he began to get irritated with my constant prodding to see his eye, constantly checking his breaths, constantly rubbing his checks to mine. He just wanted to rest, so here we lay. I am still starring at him and kissing him and touching his cheeks and every now and then he will open his eyes just enough to glare at me as if to say that’s enough! I told him I am sorry and that its ok to rest. I told him that it is enough! I told him I will be here anytime he wants to open his eyes, but it is okay to sleep.
So for now i will snuggle up close and hold his hands in mine. I will sleep with his head tucked gently under my chin. I will try to not to stay up counting his breath or heartbeats
but just be here with him, holding him close, trying to convince myself that it is ok to hold on and it is ok to let him go.
Good night village
hold your babies tight xox

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78 thoughts on “Bed time

    1. YOu truly are both amazing. Just today a friend called me, someone I didn’t even realize had seen something I wrote about Kai, or you, or the village. She told me that Kai changed her perspective on working so many hours and not seeing her kids (something she pretty much has to do at the time), and that instead of crying about it, she’ll cherish all the time she does have with her kids on weekends and nights and mornings. It’s not fair that you have to see your son’s health fade in order for others to cherish the health and wellness of their own family, but, man, Kerri, you and your family and espeicially Kai really HAVE made a difference. I truly do believe everyone is sent here for a reason. Thank you for sharing your journey!

    1. I’m sending you my thoughts, love, light and the strength for Kai and you to bond for a few moments more. He will forever remain in my thoughts and heart, as will you. You have been a wonderful mom to Kai. I’m so sorry that this is happening.

  1. Tearing up… Such a beautiful, and sad, post. Keep cherishing every moment with your dear, sweet, Kai. And know that your village is here for you anytime you need us. Love you.

  2. I promise to hold my babies close, to not take a moment for granted. I love you and your Kai and i am sorry i didn’t get to see you while we were there. Prayers for continued peace. Thank you for sharing your journey, your Kai, your beautiful words.

  3. Thinking of you often, or let’s just say every day. Praying for peace and comfort of Kai, you, and your family. Your words are always so beautifully written. Sending love and prayers each day. xoxo

  4. Kerri,
    May God hold you and Kai peacefully in his arms tonight. What an amazing mom you are to an incredibly brave little boy. You demonstrate everything a mom should be and it shows in Kai 🙂 Prayers and hugs being sent your way with lots of love too 🙂

  5. I havee been following your precious baby for a couple weeks. He’s beautiful and I am so beyond sorry that your family and he has to go through this. He is and has been in my prayers every night and every morning … God bless your family ❤

  6. I have no words Kerri. All I can offer is friendship, love and prayers for you and your family. Kai is such a special little man and so lucky to have you as his Mommy.

  7. Mama I hug and love u! You r so stronger then u realize. I know its hard I am sorry I am not closer to help. I am here I am usually just quiet and try to look. I just want you to know I am here. When u fall we will catch u and hold u tight. U r not alone.

  8. That is the most beautiful thing I have ever read. You’re a wonderful person and Mother. We should all be so grateful. My Family will pray for you this Thanksgiving. Such a beautiful moment with your son. Enjoy! Sleep well..together:)
    You are always Kai’s Mommy! And that is something no one can ever take away from you.
    Lisa D. -praying for you in Middleton, Mass:)

  9. Although we’ve never met, my heart breaks for you, Kai and your entire family. My thoughts are with you and I wish you continued strength and peace.

  10. Sending hugs, thoughts and prayers your way! Thank you for sharing your increditable journey- Thinking of you both! Hugs!

  11. My heart breaks for you, Kerri. I can barely see what I’m writing because my tears won’t stop flowing. I will continue to pray for a miracle and for Kai to be comfortable and at peace. I promise you I will hold my son tight and close. Your and Kai’s story has completely changed me as a mother and a person. I continue to think of you both often throughout the day.

    I know that there are no words that can take away your pain and sadness, but please just know that you are both held close in all of our hearts. There will forever be a piece of my heart that belongs to Kai, reminding me to cherish every moment I have with my loved ones.

    Rest well with your sweet little guy. Sending both of you big hugs and tons of love.

  12. Kerri,
    I am just one of the hundreds that are praying for you and Kai and the rest of your loving family. We all pray for a peaceful and comfortable night for you as you hold each other close. Kai is a beautiful gift, even though his journey here is too short. But you, in turn, are a most beautiful gift to him. You both have taught us all the true meaning of love, devotion, strength and courage. May God give you, Kai, Mark and the rest of the family peace, comfort and strength in the days ahead.
    Love, Susan R.

  13. I am sorry for all that u r going thur ,but I think I WOULD DO THE SAMETHING U R DOING SO I COULD SPENT EVERY MOMENT WITH KAI ,U HOLD HIM AND KISS HIM AND ALL THE THINGS U THINK U MAY MISS ,THESE R YOUR SPECIAL DAYS WITH KAI ! I HOPE AND PRAY FOR PEACE FOR U SOMEDAY WHEN ITS TIME ,U R A SWEET BLESSING FOR ALL OF THE OTHER MOTHERS OUT HERE LETTING US READ THE LOVE STORY BETWEEN U AND KAI , AND WE R PRAYING AND HOPING FOR A THE LORD TO ALLOW KAI TO BE PAIN FREE AND TO ALLOW U AS MUCH TIME AS POSSIBLE , WE LOVE U GUYS TRY TO GET SOME REST ! ❤

  14. I don’t know you personally, but I wanted to tell you how much your story has touched me since your blog was posted in the mama’s group. I’ve been reading your entries hoping for a miracle for beautiful Kai, also knowing the reality of this situation. I’m wishing you and your little warrior lots of love, light, and peace at this time. It’s been an honor being a part of Kai’s village. And I am holding my baby as I type this.

  15. Kerri, I am praying for you and kai daily and thinking of you often. You are a wonderful mother and kai is lucky to have you. Thank you for sharing his story with all of us but just know that we are all here for you and our hearts are hurting with you although we truly do not know how you really feel ..just know we are here. My life will be forever changed because of you and kai..I will be holding my babies closer and never taking their life for granted. You are an amaizing mother!
    Cherry

  16. My heart breaks thinking of what you and your family are going through. You are an inspiration to us all. Thank you for sharing your and Kai’s life with us. He is such a beautiful, beloved little boy. I think of you both every day and are wishing you peace and comfort through the days ahead.

  17. I am sitting here and taking your precious and priceless posts to heart. Please know that your message is so clear and so heartfelt. Thank you for your endless truth as you are going through this process of holding tight yet letting go. We all are supporting you even if we do not know you. I am a mom sending my love to you. I hope you realize how remarkable you are.

  18. Sending peaceful thoughts to you and Kai. So glad you can hold him close in these moments. No one should ever have to go through this but you are a special family to share these hours with all of us. You are both so brave. The hardest thing as a parent is to love your child enough to let them go, so we are with you too on this journey. Hoping you feel our strength when you need it most in the coming days and little Kai’s heart with you always. the picture speaks more than 1000 words ever could.

  19. Continuing to keep Kai and you in my heart, thoughts and prayers. Sending you love, hugs and peaceful thoughts. You are a wonderful Mom and Kai knows it.
    Love,
    MP

  20. Kerri,

    Mary Pat is right , Kai knows that you love him. He is lucky to have found you. I am sending my most positive thoughts and many prayers your way. My wish for you and Kai is peace and comfort.

    Much love~

    Sarah

  21. Beautfiul and so very sad….thanks for keeping us all on the loop…you know we are praying, all our people are praying, all the time…and you and Kai are surrounded with warm peaceful light and love…Megan told me to tell Kai that Lucas and all the other BT Angels are hovering nearby, waiting for Kai to need them…I told him and he looked me in the eye, so I knew he heard me….Hug him tight for us…Love you Kerri…
    alice, emily, lexie and max

  22. Sleep peacefully little boy. Kerri I may have been a mom longer than you but your experiences have made you wiser beyond your years. I cherish what you have taught me about true love and devotion. And about dealing with what God gives us. Your strength, your tears, your love. You have touched so many. God was so right in making you a teacher. And I am honored to call you friend. Love you all.

    Jen

  23. My heart goes out to you and your family and your sweet boy. I am so sorry for what you are going through. I cannot even begin to imagine. Sending love and prayers your way. I am thankful I found your story and I promise you, I will hold my baby girl extra close tonight.

  24. I have been reading Kia story via Sarah Hamilton. I am so sorry for the pain you are going threw. May God be with you and your family. I am sending prayers your way, peace and love!!!

  25. Kerri, you and Kai are in my thoughts daily. I am thankful that you share your story with us, you remind us all to not take anything for granted. You and Kai are both amazing.
    Peace and Love, Danielle

  26. My heart breaks for you! I can’t imagine trying to hold on to every second you have to try to remember every moment and every touch with him. You have so many prayer warriors lifting you and your beautiful family to God!! You have a beautiful son and you should be so proud! YOU are so amazing and strong! Praying for comfort, love and peace for you and know it will be there forever

  27. Kerri, you and Kai are teaching us all so much. Thank you for that. The love that you share with Kai goes out into the world and it is a better, more gentle and loving place for it. You were meant for Kai, and he for you. You are in my prayers and my thoughts. I pray so deeply for peace and comfort. God bless.

  28. My thoughts were with you both all night. I can’t imagine how hard it is to see him like this and to stay strong for him when your heart is breaking. I continue to pray for peace and comfort for you both, and am sending all the light and positive energy I can. Lots of love to you and Kai!

  29. Kerri, We’ve never met but I heard of Kai’s struggle through the MoCo group of ladies. Many prayers of peace and comfort you Kai, you and your family.

  30. Praying for you all. My heart breaks for you and your sweet baby boy. Keep holding him close and loving on him. I think you are in the right place. You have the comfort of knowing his physical needs are being cared for and you can just take care of the love and comfort that he is so obviously drinking in. He looks so peaceful and content in your arms. You are and always will be Kai’s amazing mom and he will always be your sweet warrior son. True pure unconditional love Kai has been a gift to us all. May God bless you both as you continue this journey together.

  31. Kerri, I’m just another mommy, who never met you, but know you through the amazing circle of loving people around you (Laura-Lynn is one of them).
    I read your story and it brings tears to my eyes, everytime I read. Please know, that you touch SO many souls, even of the ones you’ve never met before, like me. I have so much respect for you, dealing with the disease of your presious son Kai. None of us can imagine how hard and heartbreaking that must be. I’m sure Kai feels loved as no one before with YOU by his side!
    Through your writing, your emotional experience, you wake up every mom around you. You let us know that we have to be SO unbelievable thankful of our children and the fact that WE can be a loving mom to them! This is worth a million, no matter where you’re going through!
    You’re an unbelievable strong and warm loving momma, even if you think you can’t do it any longer. Know that there is a circle around you, who prays for you and Kai, thinks about you and Kai, send their love and peace to you and Kai. Feel blessed in being that special person for Kai, to support him, to guide him, to love him without limits! That’s all he needs to go through this all!
    I’m unbelievable proud of you and Kai, fighting trhough life. I say this from the very from bottom of my heart, with tears in my eyes.
    Love, Sandra van der Geer

  32. Kerri, we’ve also never met, but I am part of the MoCo/Babies in Common group who is praying for you many times throughout each day. Kai is so lucky to have you as his mommy. This is such a beautiful, yet sad, love story. Everyone’s comments above are so eloquently written, I don’t know what else to say. By sharing your family’s story, you have helped me become a much more grateful and patient mom, and person in general. Thank you for that. Even though we don’t personally know each other, I am here as part of the village to help with whatever you may need. Lots of love to you Momma.

  33. So much love is surrounding Kai and your family. I hope you feel it, and I wish you love and peace from our family as well. Our son Colin is also battling a brain tumor, and so I understand the ups and downs, the fear and relief, the anger and peace, and I truly know how strong you have to be to see him through this, especially now. You are amazing, and little Kai will live in our hearts forever.

    Love, Elizabeth Spinney & Family (North Grafton)

  34. We are thinking of you, your husband, and Kai, hoping that you feel all of the love and support that surrounds you.

  35. Sleep my child and peace attend thee,
    All through the night
    Guardian angels God will send thee,
    All through the night
    Soft the drowsy hours are creeping
    Hill and vale in slumber steeping,
    I my loving vigil keeping
    All through the night.
    While the moon her watch is keeping
    All through the night
    While the weary world is sleeping
    All through the night
    O’er thy spirit gently stealing
    Visions of delight revealing
    Breathes a pure and holy feeling
    All through the night.

  36. I hope I am not intruding if I advise you to think carefully about going home if you feel safe and taken well care of in the hospital. Every case is very different, and if you want to ignore this post, just do. But I was very thankful that we were in a children’s hospice when my baby died, and that a doctor was there when he died. I know it can happen very peacefully, but in our case it didn’t. Sending love and hoping that what I am writing doesn’t apply to you. Be where you feel most comfortable

  37. I read your posts and I commend your strength and courage to share your journey. I cannot even begin to imagine what you are going through and my heart goes out to you. I pray for peace, comfort and continued strength for Kai and for you.. Your little boy is so precious and cleary so loved.

  38. Thinking, praying and wishing with all my heart that you and your sweet boy didn’t have to endure this. Not a minute has passed since I learned about Kai that you haven’t been on my mind. I have so much love for both of you and would stop at nothing if I could help alleviate some of your pain.

  39. What a beautiful boy with the strongest spirit I know-love and prayers to you! We think of you guys often and keep you in our hearts!

  40. I don’t know you but your story has reached my little town in nh and we are all praying for your family and Kai. What a gift you have given all by sharing such personal moments. You will treasure these intricate details of your days.

  41. I was sent your blog a few days ago by a dear friend who was moved to share it because if your undeniable love for your sweet boy. I now follow you to and cry with you as a mom a can and as someone who knows that children can teach us so much, no mater their age. I pray for you all and hope you can feel God’s loving arms around you.

  42. I can’t tell how much I am truly moved by your strength and courage at this most difficult time. My heart breaks for you all. I continue to pray for your sweet baby boy. Kai has touched so many people. Please know we are all thinking of you with love and support.

  43. Dear Kerri and Kai
    Thank you for sharing your story. Words cannot describe how much I feel for you and your lovely little boy. It is most amazing with what strength you go through the ordeal of your little boy. Your last entry left me in tears, you describe your love in such touching words. How well I can imagine that you want to cherish every moment of feeling these soft warm cheeks and hearing every breath he takes. I feel incredibly blessed to have a healthy daughter, and your patience and strength make feel embarrassed about every irritation I ever felt when my little daughter acts up. I found your blog by coincidence, through the facebook entry of Positive Parenting Solutions. I wish you all the strength, love and support you can get, I admire you and most of all, I send warm and gentle hugs to your little boy, that he may have peace and enjoy your love much longer.

  44. I’ve seen the links to your blog posted by a friend. I know you do not know me…but I have a little boy too and your story makes my heart feel so sad. I just thought you should know that there are strangers out there who are praying for you so much. So hard. I am sorry that your little one has to go through this. I am holding mine tight tonight and we are both sending prayers your way. God bless. Kelly and chase

  45. Lifting Kai in prayer for his peace and your strength….our hearts are aching for you. Please know we are all with you in spirit and your bt family loves you and we care. Kai’s village has limitless members and we are all praying. It’s OK to do both, to feel both…I can’t even begin to imagine. Kai is with you and will be with you always in your heart and soul.
    xoxox
    Melissa

  46. Praying for you and your precious beautiful boy Kai. I look up to heaven and ask for peace and comfort during this difficult journey. I cry with tears of happiness when you post his pictures and then those tears turn to pain as I think about what he has had to endure. I have never met you or Kai, but I see my children in his face and when I look into the eyes of my children I see Kai. You have unwavering strength and compassion and the love for you little warrior is so amazing, there are just no words to describe it. I am striving to become a better mom, wife and friend because of you.

  47. Wishing you a peaceful night and saying a prayer with my 5 year old boy who is equally moved by Kai’s story and asks God everynight to make your sweet Kai feel better. He asks to see his picture and prays to God for his health and kisses it to make Kai’s boo boo go away. Praying for your peace.

  48. You are a true MOM and you and your beautiful little boy are in my prayers. May God watch over your family and bring you peace whatever the outcome. A piece of my heart is with you/ God Bless!!

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