Kai’s breathing has been labored overnight. Every time I wake up it sounds like more of a struggle. His nurse just came in and told me his heart rate is still good but the last time he checked his respiratory rate was 16 breaths in a minute. He is breathing more from his belly. You can see, feel and hear the change. He is struggling.
He was awake with me a little while ago and we just snuggled as we always do in these quiet morning hours together. I held him and kissed his face.
I’m started to get scared that one day I won’t be able to do that. Iv known this fact for a while but its only now starting to scare me. One day I won’t feel his weight in my arms, his skin on my lips, his warm hand in mine. I won’t be able to wiggle his little toes and play with his hair.
He is so presciouse and beautiful and soft. You look at him and he just looks perfect. He’s always looked just absolutely perfect.
How can all of this terror be going on inside this perfect little body?? He is such a good boy. All he has ever wanted in this world is to be held and loved. That’s always been enough for him, just to be held and loved…
In all the time we’v spent in the hospital we’v never been here for a holiday. It’s quiet around here. Yesterday was quiet. I didn’t expect it to feel any different from any other day, but it does. Anyone who had any chance of going home has gone. Even kids who will be back by Friday have left to be with their families today.
Our family will be here in a few hours. The hospital has a full thanksgiving dinner in the cafeteria at noon. We will eat there, with the other families of the hospital whose children can’t leave. I will try to see all I have to be thankful for, which I do believe is a lot.
Most importantly I am thankful to have this time with Kai. To wake up with him in my arms every morning. To feel the love from so many people surrounding us, holding us, lifting us up. I am so thankful for all of the tender love and care we receive from all of the amazing doctors, nurses and staff here. I am thankful for all of the things that are happening at home to help us that I don’t even know about still. I am thankful for all I have learned in these two year Kai has been in my life, and as much as my heart will never be the same I am thankful for the person I have become because of all of this. I am thankful our family is willing to leave the comforts of their homes and spend the holiday in a hospital so we will not be alone.
But right now laying here next to Kai listening to him struggle to breath, I’m not sure I can even get out of bed.
I’m not sure I can face this day, share this day or even acknowledge there is anything else in the world besides him and I today.