There has been this leuming finality to every day since taking Kai off chemo. Like with every day that passes and every decision I make I am loosing something close to me. Loosing a part of me. His life is in my hands and mine in his, and it is a scary place to be.
Early last week I was obsessed with cleaning out the house, packing up the toys I knew he would never use again. It’s hard to sit down at the end of the day and look around at all of the things he no longer gets to enjoy, all the while wondering if he was still breathing in the other room.
I just wanted to get rid of it all. Get things organized and cleaned out so I wont have to look at it anymore. I convinced myself that it would be easier to do it now, while he is still here, than to have to face it once he is gone. I felt like I was nesting but in reverse… It’s so strange how preparing for a life to start can feel so similar to preparing for a life to end. You can’t everreally be ready.
I found myself trying to say good bye to this life we have been living and the people who have been living it with us. I canceled doctors appointments, ended our early intervention services, backed out of respite, told Perkins we would no longer be able to attended, and forget about filling our PCA hours. I don’t need help, I should be with Kai at this point. It is time to hibernate, just him and I and savor every moment together. I resigned myself to the fact that this is where our life is now. I felt that I was ready.
Until all of a sudden I started to feel like i was giving up…
I do not need to continue fighting cancer. I do not need to put Kai through any more than he has already been through in his short life. I do not need him to walk or talk or ever say mamma. But I also don’t need to give up. He is still here now and we still have a life to share. He still has good days ( or good hours) where he can enjoy life and that I will never give up on.
I realized that Kai can still enjoy some life and he certainly continues to bring a lot of joy and inspiration to everyone around him. And as long as he is comfortable and content, that I will never give up on giving him all the good days we can steal out of this life for him.
Thursday one of his EI therapists, Erin, came back to see us after being gone on maternity leave. As I started my speech on how bad he has been doing and how we probably didn’t need her to come anymore, Kai looked up at her and smiled the biggest smile I had seen in days! Erin told me she is not going anywhere and she is just as much here for me as she is for Kai, and we love Erin so how could I argue with that! Later that day, when Paula came to see Kai, she held him and massaged him and he fell gently asleep while we talked. She is so soothing and calming for both Kai and I and I knew I wasn’t ready to let her go yet! One person we did decide to take off his service was Megan, his speech and feeding therapist. Of course Kai really doesn’t eat anymore so it made sense to free Megan up to help some other kids. But later that same day Meghan stopped by to hand deliver some homemade birthday cards for Kai that her church had made! She has only been with us a few months but all of a sudden I realized how much of an impact Kai has made on her and her on us. It just broke my heart that we may never see her again and I totally lost it right there in front of her.
And again today after talking with Linda (Kai’s TVI) I started to realize we can’t just sit here waiting for the end. Kai is still here taking in the world in whatever way he can. So with the support encouragement, knowledge, wisdom and love of all of our EI friends, we decided to LIVE on. As long as Kai is up for it I need to make sure he gets the most out of everyday.
Starting next week we will be back at Perkins. Kai will be starting at a new Respite center one day a week and we will continue with whatever early intervention therapies or comfort care Kai is up for. I have also decided to apply to go back to Camp Sunshine in October for another brain tumor session. Even if Kai sleeps through 90% of these things, the chance of enjoying the other 10% of life with him is worth the trip!
Paula, Pat, Erin, Megan, and Linda thank you for being here just as much for me as you are for Kai and thank you for helping me see the potential and happiness he is still capable of, even if only for a moment.