Lately I’ve been having the same dream almost every night….different situations, but always a common theme. They always feature a Dream-Noah that can walk and crawl.
And it always ends the same. I open my eyes and my heart hurts.
During the day, I see pictures and videos of the babies in Noah’s birth club. They are all crawling and some of them are even taking their first steps. Even something as simple as seeing a picture of a baby in a Bumbo, Jolly Jumper, or swing at the park makes me feel a little twinge of jealousy that I wish wasn’t there.
That’s the sad part. I love all of their babies as if they are my own. I am happy for them when they do awesome things like walking or saying “mama” for the first time, etc. But at the same time, I feel a sense of loss and jealousy. And then I feel guilty. I shouldn’t feel that way.
But yet I do. It constantly weighs on me to see everyone else’s babies doing awesome and mine stuck in a rut of development somewhere around the 2 – 4 month mark. Hell, even seeing pictures of my friend’s one month old om-nomming her teddy bear made me sad, because Noah doesn’t do that. He doesn’t reach out and grab things. He barely opens his mouth for his spoonful of solids, let alone a random object.
I hate it when I feel sorry for myself and Noah, but I hate it even more because it’s happening more often the older he gets. Even thinking about his birthday makes me incredibly sad because I decided that we would do cake smash photos before he was even born and I already know that he likely won’t be able to sit on the ground and smash a cupcake. The most we’ll be able to do is put him in his high chair with his special 5-point harness and put a cupcake next to him and take pictures.
Everything I want to do with him, I constantly have to adapt. If I want him in the kitchen, I put him in the computer chair with a pillow on either side of him, and even then he usually slides down and I have to keep propping him up. We still have him in the baby tub on the table, and I’m not even sure yet what I’m going to do once we have to put him in the big tub (which is very soon). We had to borrow a wheelchair harness from PT so that he could sit in his high chair. His monthly pictures have to be done in the corner of the couch. I figured out the best way to prop him up on the couch so I can clean up, make him a bottle, etc. The Jumperoo is essentially an exersaucer because he doesn’t jump in it, and I have to prop his little pillows around him so his head doesn’t go crazy. He has to be propped up against the couch in order to sit in the Bumbo or his head falls back. I bought a pumpkin to put him in to take pictures, and I already know that it’s too short so I’m going to have to figure something out to support his head.
The list goes on and on and on….and it sucks.
I wish that I could just spend my days with my boy playing with toys and crawling (or even rolling or walking) around. I wish that we could do BLW instead of purees. I wish he could hold his own spoon and even try to bring it to his mouth, even if it doesn’t have any food on it. I also wish that I could have normal playdates. I always feel like I take up extra room that should go to someone with a normal child, because Noah doesn’t play and therefore doesn’t add anything to the playdate. Even at Early Intervention play group we’re one of the few immobile ones…then again, they are mostly all at least 3 months older than Noah, some at least a year older.
Most of all, I wish we were normal. Completely unremarkable. That we didn’t have to spend a bunch of money every 3 months for his pediatrician visit in Edmonton. That we didn’t have therapists and specialists and whoever else coming to the house. I wish that I didn’t know what a NICU is like, and that we didn’t have to go to places like Glenrose and have reports sent to us laying out exactly what it wrong/slow/not-normal about our son. I wish I didn’t have a “story”, or that people wouldn’t stare at Noah when we’re at the store, etc, once they ask how old he is and they realize that he doesn’t act like a normal 9 month old.
I stay home because it’s so much work to take him anywhere, even the store. He doesn’t sit in the cart, and he’s getting to be almost too big for his Snugli and bucket seat. I honestly don’t know what I am going to do when we’re in Edmonton, just me and Noah.
Most days I wish that I could never wake up. In my dreams I get to see the developmentally normal Dream-Noah, and it makes me happy. As soon as I wake up, that dream, both literally and figuratively, is gone. It breaks my heart every single day.
I constantly wonder if there was something that I could have done differently, to change something and change our outcome to one where we would have never even known what the NICU was. And then I’m annoyed with myself because I know that I shouldn’t dwell on that. None of the hoping and wishing in the world will cure my little boy of his birth trauma.
I think it’s one of those things that I will never completely “get over” but I will eventually come to peace with. I didn’t sign up for this to get a “Special Needs Parent” badge; but I suppose none of us do. SOMEONE had to be the 1 in 3000, and for some reason that had to be us.