Sleep -last week

****This post was written last week a few days after starting Kai’s new pain meds. It was a ruff week and he was sleeping a lot and barely eating which all made us feel the end was near. It was a long hard week and I guess I forgot to post this writing so I am sharing it now.

Kai has been sleeping more and more the past few days. Strangely with all the extra rest we are getting around here, I have never felt more exhausted.
I keep second guessing myself. Wondering if he’d be more alert if I backed off on his meds a bit. Would he smile? Would he eat? Would he be feeling better now that the chemo has left his body?
His nurses have to keep reminding me that I am doing the right thing. They remind me that when he does not get the right amount of meds he is in pain. They tell me this is kind of how it goes from here. He will probably be sleeping more and more as the days go on and that that’s ok as long as he is comfortable.
As much as I feel the road to this point has been long and I am a bit overwhelmed by how quickly things seem to be moving now. Each day has been drastically worse than the day before. It feels like the moment we decided to stop chemo his body knew it was ok to let go. Of course I don’t want him to suffer any longer than he has to, I just didn’t think I would see him slipping away so fast.
The past few days he went to bed at 4:30pm and didn’t wake until around 6 in the morning. Today he was only awake a few hours before fighting to rest his head again. He still loves to be held but he is resting best in his dark quiet room laying in his crib. It breaks my heart to lay him down and walk away but he is telling me this is what he needs. Forcing him to sit out in the living room in my arms only to be woken by the dog barking or the phone ringing is selfish on my part and I am trying to do what’s best for him ( although I’m sure we will be spending hours of our days snuggling on the couch together, because unlike the hospital cribs I don’t think his crib will hold the both of us! ) . I
I would sit here and hold him forever if I could.
Every night after he is tucked away in bed, I find myself writing him little letters. You know the kind a mother would write to her son if she we’re dying of cancer. It’s not so much the advice for the future or the things I wish I got to say, it’s just the little things. A recap of the day, explaining away the choices I am making for him. Telling him how much time I spend just watching him sleep.
I’m not sure why I do this because of course he will never read these letters. It’s like I need him to know I have done what I think is best. Or I need to document this time with him so I can one day look back and prove to myself why I made these choices. Or maybe it is so I can one day share these moments with him again, just me and him in my head.
Kai has never spoken a word. I have never heard his voice, so I guess I realize that I have been his voice. So maybe it makes sense to speak to him and for him at the same time in these letters. It’s what I’v always done.

4 thoughts on “Sleep -last week

  1. Thank you so much for finding the post and sharing it. I want to think Kai is sleeping so much soley for the purpose of recuperating so he has the strength to continue fighting. I will continue holding onto that for you and for him. I will keep hoping and praying, Carrie, that soon you will see his beautiful smile again.
    You have been his voice, and are doing a phenomenal job of being it for your sweet Kai.

    Shari Butler

  2. Continuing to keep Kai, you and your family in my heart and in my thoughts. Sending hugs, love and feelings of peace.
    Mary Pat

  3. Kerri, you are his voice, his cheerleader, his coach, his comforter, his advocate and most importantly the most loving mother he could hope for! Thanks again for sharing!!

  4. Dear Kerri:
    It has been much too long since I last sent a message or commented on your posts…but please know that there is not a day that goes by that we here in Oregon are praying for Kai, for you and Mark. What an amazing gift you have been at every point of Kai’s life…there is a reason that God chose you for him. How I wish we were closer to give you some physical support through this journey yet I am grateful for the family and friends that I see surrounding you.

    We love you Kerri…and we love Kai and will continue to remember each of you through out each day.

    Love and hugs, Julie (Don and Caitlin too!)

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