Next year will be different

Well I managed to get out of bed today.
The hospital was quiet but it wasn’t as weird as I thought to be here on thanksgiving. It was kind of special in a way, walking the halls smiling in at other families, feeling with just one glance that we are somehow all in this together. I get it, you get it, it is what it is. We will eat turkey and pie and pretend that this is all okay then tomorrow will come and it will be over until next year.
And next year will be different.
I hate to think that anyone else here is in our same position, nearing the end, but it would be naive to believe otherwise. Other parents will loose their children this year. This happens. We will all have to face the holidays next year and it will be different. There are families who faced today without their babies for the first time. This happens. Babies die. Kids get cancer, brain tumors… Life is fragile and not fair.
I though of those families a lot today. The ones i know and all the ones I never will. As much as I know it is true, right now its hard to believe we are not the only ones going through this.

After dragging myself out of bed and actually taking a shower I put on jeans and mascara and lead our entourage down to the cafeteria for the Turkey dinner.
It was a nice meal. The food was good, the company was great and it was nice to get Kai out of the room. I carried him in my arms the whole way down and then I set him up in his little wagon for a nap. He slept the entire time. It was hard to see him just laying there, but in some small way it was also nice to see him next to the other kids. People would stop and look at him as he slept peacefully among the crowd. Laying there sound asleep you could hardly tell there was anything wrong. He had no tubes or wires, he was wearing his regular clothes. The people walking by would smile at him and that made me smile.

Tonight i want to tell you all the things we are thankful for, but as we lay here next to Kai all I can think is how weak he is…listening to crackly labored breath. I want so badly to be thankful for our time today, but as much as I cherish every kiss, I can feel that he is not really with us anymore. His eyes are lost, resting somewhere else in the universe. His body is limp and weak and dry. When he dose open his eyes he no longer sees me and I can hardly see him.
Right now his breath is shallow and fast. I can see his little heart and lungs working so hard to keep his blood flowing.
My heart is racing trying desperately to breath for him.


38 thoughts on “Next year will be different

  1. Oh Kerri, I am at a loss for words. He might not see you anymore, but he knows you are there. His eyes might not look at your eyes anymore, but his heart will still feel your love and his skin will feel your touch. He knows that you are there with him, love him and hold him. I send you all the love I have. Hold him. Hugs, Anja.

    1. Kerri, a while ago I found this text, a part of a sermon by Henry Scott Holland, held 1910 at the funeral of King Edward VII. It is in some ways upsetting and in some ways comforting, the thought that your lovely Kai is not going away, even if the pain is just unbearable. Maybe it gives you the comfort I wish it will. Love, Anja

      Death is nothing at all.

      I have only slipped away into the next room.
      I am I, and you are you.
      Whatever we were to each other, that we are still.
      Call me by the old familiar name.
      Speak of me in the easy way which you always used.
      Put no difference into your tone.
      Wear no forced air of solemnity or sorrow.
      Laugh as we always laughed at the little jokes that we enjoyed together.
      Play, smile, think of me, pray for me.
      Let my name be ever the household word that it always was.
      Let it be spoken without an effort, without the ghost of a shadow upon it.
      Life means all that it ever meant.
      It is the same as it ever was.
      There is absolute and unbroken continuity.
      What is this death but a negligible accident?
      Why should I be out of mind because I am out of sight?
      I am just waiting for you, for an interval, somewhere very near, just round the corner.
      All is well.

  2. Never doubt that Kai can feel that you are there. He knows. This poem has always been a comfort to me. You are in our prayers.

    The Unknown Shore by Bishop Brent

    “A ship sails and I stand watching till she fades
    on the horizon and someone at my side says
    She is gone.
    Gone where? Gone from my sight, that is all.
    She is just as large now as when I last saw her.
    Her diminished size and total loss from my sight
    is in me, not in her.
    And just at that moment, when someone at my side
    says she is gone, there are others
    who are watching her coming over their horizon
    and other voices take up a glad shout –
    There she comes!
    That is what dying is.
    A horizon and just the limit of our sight.
    Lift us up O Lord, that we may see further.”

  3. Kai knows you are there holding and cherishing him. He will always be with you too his loving spirit will never be far from his mama that loved him so much. I am crying now too wishing it could be different for you and Kai. Know that all the mommy’s in the world are praying for you and sending you strength as you face the coming days. Your village will hold you up and we will continue to pray for your beautiful Kai. God Bless you and wrap you in his arms to give you comfort.

  4. To the mama. I do not know how u feel or what your thinking except that this may be hard. I just want you to know that the lord is with u every step of the lord. All ur friends r here to catch u when you faLl. I know its hard but I would have wanted to hold my baby in my arms at home! I wish I cld be there and help you in so many ways. When its just u and kai talk or tell him stories. Play music for him and just hold him and hmm. We love u and u r strong. Many hugs and kisses.

  5. You are clearly his rock, his angel on Earth and your spirits will always be together because you will always be his mom, and he your son. Wishing you peace!

  6. I want you to know he knows you are there. Of that I am sure. I give you so much credit because I went through this 5 years ago and don’t think I could find the strength to write. You are truly an inspiration and a model. I bet you that he might not be with you and hugging you in the flesh but he is holding you in his arms in spirit!

  7. Kai you have done so much in the short time you have been here. Little guy, you have changed people whom have never met you. Be safe… Find peace…. Mommy is strong and she will carry on your mission. Carry on as her angel… Much love and prayers of comfort.

  8. I have no words but love and prayers in my heart. Kai has touched so many people in his short life- I am thankful to have met him, and to be a part of his village.

  9. there are no words…we love you and Kai and only wish we could hug and hold you both in person…sending our love and prayers for peace and comfort.
    Melissa, Earic, Heather, Leah and Nathan Royer

  10. Kerri- Please have no doubt Kai can still hear you, even if he can’t see you…When our friend Bridget was dying, Maureen Hancock came over to visit her, and told her mother that Bridget was hovering between the two worlds, ours and the spirit world…and that she was just fine, taking her time to transition over…This will not fix your immense sadness at losing him, but I hope it brings some peace to your heart, knowing he is just fine, and that the BT Angels are near, helping him cross over…I went running this morning and asked my friend Carol who died this time last yeart to give Kai a HUGE hug when he arrives !!! She LOVED giraffes and died with one by her side, and she gave the BEST hugs, and she LOVED kids, having been a superior Auntie to many !!!
    We LOVE you, a candle is buring in our house round the clock for Kai, and we are praying hard….
    Love, alice, emily, lexie and Max

  11. Thinking and praying for you and your sweet boy. I cannot even fathom what you are going through, just hearing your story has affected me so much. You have truly touched my life and I will never forget. You are amazing. Kai is amazing. I hope and pray for peace for you, your family, and your precious boy.

  12. As always, your words are so filled with wisdom, beauty and heartache. My heart feels heavy, and tears stream down my face. You are in my thoughts and prayers. I hope you can feel us all holding you as you hold Kai.

  13. I’m so glad he was able to go to the cafeteria in the cart so you could all have a Thanksgiving dinner together. That is a beautiful photo.

    The way you keep perspective in a time like this is incredible. I know you will lose it from time to time, but it’s a real testament to your strength that you have it at all.

    I hope to never be put in the position you are in, but I have seen what you are describing physically happen to my father-in-law. He became ill quite suddenly and when aggressive treatment didn’t work, we had to agree to step back. I remember the physical deterioration and cannot imagine having to watch it happen to my baby. But I am so glad for Kai that he will leave this world surrounded by so much love. ❤

  14. My heart is broken for you. This is all so unfair. It was sweet of you to be thinking of others during this difficult time. My heart and thoughts are with you and your family, and al of the families celebrating their first holidays without their loved ones.

  15. Dear Kerri –
    Continuing to keep you and Kai and your family in my heart and in my thoughts. Kai may not see you, but he feels your presence. Your words are filled with beauty, wisdom and love – thank you for sharing. Sending hugs, love and peaceful thoughts.

  16. Kerri,
    I do not know you personally, but I have been following your and your son’s journey for the past few months. Your son is a glorious gift, and though he may be in your life for only a short time, the lessons he teaches and the unconditional love he gives will be his everlasting gifts to you and to everyone he has touched. My heart is with you and your son, and although there is nothing anyone can say to comfort you at this time, please know that Kai has touched my heart and my life and I am grateful both to him and to you for allowing me to walk this path with you, as I, too, will be facing a similar journey with my daughter. Blessings to you, Kai, and your family.


    1. Amy, it is so sad to hear that your daughter is ill. Please accept my wish for strength and that you get love and support. All the best, Anja.

  17. Sending you and Kai so much love and peace. You amaze me with your strength and clarity. Your words are so beautiful and touching – a beautiful tribute to Kai. His love has been felt by so many, and you both are such an inspiration to others. Love and light to both of you.


  19. Kerri, I have watched you care deeply for Kai from close and afar. Your heartfelt and candid comments over the months have touched me and so many of us quietly on the sidelines. I know, along with thousands of others that Kai has been blessed to have such a caring and loving mother- Kai’s loving angel.

    I pray that he floats away peacefully with a slight smile on the blanket of love you have provided him. Peace and love to you and Kai.

  20. Kerri, They say that hearing is the last to go. Kai may be between worlds but he hears every word you speak. I believe that is God’s gift to us so that our comforting and loving words can be with our love ones as they travel. We are never alone. I do believe Kai will be waiting for you. Your souls were connected even before his birth. Once connected always connected. Yes next year will be different, but I pray that with continued love and support from family, friends, and Kai hopefully Thanksgiving will be joyous for you and your family. Thinking of you.


  21. Kerri, I am a fellow “tubie” mom. Tonight my heart is crying for you. I wish your family peace through this period- that which you are dealing with is for most of us our worst fears. I keep hoping and praying for your family.

  22. I am so very, very sorry for all you are going through.

    Although I don’t know your little boy, I have experienced losing a close family member…watching them slowly fade away – while doing my best to say everything I needed to say- before it was too late.

    I am glad you have this time with Kai.

    Wishing you as much peace and comfort as possible as you embrace your little boy. He is a brave soul and you are an amazing mom.

  23. Sending prayers for peace and strength – may the love of those around you sustain you through this passage. Many thanks for sharing your thoughts.

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