Yesterday was very interesting. He is very tired and I know we have a long road of healing…but… yesterday was very, very interesting. I don’t really know how to write it. Part of me is absolutely devastated and the other part is so happy. Here is goes.
As I told you in my previous post, he is starting to recognize and remember people and things. I started noticing all the little things. How he didn’t want to leave my lap or let go of my hands when we were sitting. How when I spoke, his head would go back and forth until he found me - then a big smile would come. It hit me – I have been here before!
Picture in the “way back machine” when your baby just woke us in his or her crib. They would sit there and cry or play, Noah played and turned on his music. You would spy. Just staring as they looked at things in wonder, touching their blankets, stuffed animals… then you would tiptoe in… and say “There’s my baby!” The baby would look around, then “catch you” with their eyes and get the biggest smile. There you are Mommy. Well, That’s now.
All day, he wanted to be snuggled up, laying on me or he was in amazement with everything I showed him. And…wow… lights and beeps. Go back to where we just were and remember those crazy Baby Einstein DVD’s that were just shiny toys spinning for hours, but babies couldn’t take their eyes off. He is memorized by the lights and beeps of his IV pole.
We have gone back in time. My Noah came back to us, but for right now, he is our baby Noah again. I am having flashbacks like you wouldn’t believe!!!!
What’s strange is, it’s not total baby – he can read. (Of course, I’ve been testing everything!) But then, when I wheeled him outside and when he saw a cloud!!! I was like the first time! “Mom, look at that! Mom, what’s a cloud?” He knew what it was, but it was “amazing to him.”
I want my baby’s genius mind back (yes, I had that tested too after his initial surgery.) I want my Noah at 8 back. I want my Noah unit he is 110! But, since I’m not in control of this situation, I’m going to enjoy the memories. I’m not going to panic. (maybe) We have our baby, baby boy. I told Dennis that we get a parenting do-over. No TV, nothing “Villain” or crazy. I’m going back to classical music and books, books, books.
The other side to all of this is that I am considering this past weekend a major blessing.
Hindsight is 20/20. In the past month, on this ridiculous protocol, I think Noah has had many tiny seizures at night and I wrote them off as talking in sleep or chemically induced dreams. If he wouldn’t have had this one in the daytime hours, today we were supposed to start a 5 day cycle of intrathecal chemo, putting more chemo in his brain. We would have been in a much, much worse situation; one that I won’t type. God stopped the nonsense. I knew in my heart that we shouldn’t have done this protocol, but He made sure that we would listen this time. This was an unbelievable blessing. We are home with him (and Him.)