When I was admitted to the hospital and put on hospital bedrest for the duration, M did what he could to make my room there like home. He brought me all kinds of things…a boom box to listen to my beloved A’s, a combination vcr/tv so I could watch movies, magazines, photos, a fan, the baby journal, and my Bible. Thanks to that fabulous magnesium sulfate, I could do little more than watch tv and movies. My concentration lasted hardly more than a minute. Reading was impossible. But my Bible was there. I spent a lot of time having conversations with God, granted much of that was bargaining with Him, but I did pray….a lot. After Big Man was born, the amount of time I spent praying doubled and tripled. As I’ve written before, I would hit my knees at home in his room, in front of his empty crib. My faith during that portion of our journey grew.
I’ve realized since we started down this road with autism, I have put so many walls up. My faith has floundered and failed. Prayers? Talking with God? Not so much. Or at least not what I know I need. I’ve turned away more than not. I’ve pulled back. I’m not even asking “Why?” much anymore. I’m too busy trying to survive, and trying to get my baby through each and every hurdle we’ve faced.
It is not an easy road, going it alone. I have lots of friends. I have people I can lean on, specialists, therapists, teachers, other autism moms. But doing this with that piece of the puzzle missing…it’s not working for me. Now I know not everyone believes. I’m not preaching here. I’m just talking about me, and trying to figure out why this time, in this circumstance, I have chosen to turn my back on God, rather than leaning in to Him as I did with Big Man.
There is no end to Big Man’s prematurity. He will always be a preemie. I will always wonder how things could have been different had he been born on time, instead of 3.5 months early. I will likely always be waiting for yet another shoe to drop. But we are past the terrifying, life-and-death portion of his prematurity. He made it out of the NICU. He came home. He has soared to heights I wouldn’t even let myself imagine thirteen years ago. E-man’s diagnosis is not going to go away. He will always be autistic. We can do all the therapies in the world..he will never not be autistic. It will affect him every day of his life for his entire life. I struggle deeply with that. I know he will be successful on his terms. Someday, it won’t take as much work as it’s taking now, but it will always be there for him. He will always have to fight against his nature to succeed socially and emotionally.
God held Big Man’s life in His hands. He could have taken him back with Him at any point. He did not. I don’t know what would have happened to my faith had He chosen to take Big Man Home. I can’t even wrap my brain around that. But E has a lifelong sentence. And I think I’m pretty dang angry about that, so I’ve pulled back. I’m punishing Him for this happening to my child. How’s that for honesty? He gave me a miracle in my first child, so why not in this one?
I’m finding it hard to be joyful and thankful at the moment. The book I just read (and recently wrote about) keeps poking at me….be thankful. Start with the little things, but be thankful. Maybe that’s exactly what I need to do to start towards the end to my hurt and anger. Maybe I just need to start at the very beginning. Maybe just realizing where I am is the first step back to where I used to be. I don’t know why I leaned closer to God with Big Man, and why I’ve pulled away with E-man. I’m working on that. Why one, and not the other?