I have been over the last few days trying to literally savor every moment...I can feel the tension as each day slips by...and I know that I've said to Mark over the last 2 days ...please let time slow down. I am not looking forward to Monday, as I have said 100 times I know in my brain that this surgery must be done, that at this point it is our only chance at getting Kyle off the IV TPN and move him forward but in my heart I can't stand this. For 5 years I have felt that failure feeling ( I know my MOD friends are going to jump all over me here) like I should have been able to protect him more...I drive Mark nuts...every time we go inpatient or we meet a new dr we get the same question, "so why was Kyle born premature?" What most don't get is that it's like a knife in the chest...and as hard as I try every time I get that question it makes my heart ache all over again. Kyle was a preemie because my body failed him, I know..I know...but it hurts. While we were meeting with the surgeons in Boston one of them looked at us and said, this is not all prematurity related there is something else wrong. My brain started to scramble and I could feel myself start to panic, while we have always known that Kyle's medical issues are not all prematurity related it was hard to hear that there is more going on here. For years we were told that Kyle would outgrow his prematurity, so many dr's telling us how lucky we were that Kyle was still with us, that with everything he has been through he still is so forgiving...so kind, so sweet.
I was talking to one of Kyle's dr's the other day, we were talking about next steps and treatment plans, I started to cry...and of course instantly apologized. She was of course amazing, and said...."Kate it's ok.....it's been 5 years..."
It has been 5 years, and I can't say I wouldn't change some things...but I do know I would never change who Kyle is and what he's taught me. There are days that this all seems like to much, and then I hear his giggle or see his sweet face, and it's energizing. He is energizing.