Tomorrow (well, technically today) we have a meeting with Early Intervention. Our worker is doing her official assessment of his development, something she’s put off thus far in hopes that he’d catch up a bit more. But now, at almost 7 months, it’s time to see what we’re dealing with.
I’m not going to lie, I am absolutely terrified. I think that he is around the 3 – 4 month mark (almost entirely based on his neck control, but that’s gotten so much better in the last few weeks), but what do I know? He’s started grabbing things a lot more in the last few weeks, which is great. But I’m scared that she’s going to tell me something worse than what I thought. Maybe even the dreaded words of “I think he has cerebral palsy”, which is a very real and very scary possibility right now.
I know, I know, I’m lucky that he’s even alive. That is true, but at the same time, I’m so sad that I have to deal with this on a weekly basis. I don’t think anyone knows what I would do or what I would trade for Noah to be completely healthy.
When my milk came in at 5 days post-birth, I didn’t pump to relieve it because I wanted to feel even a fraction of the pain that Noah was feeling. I wanted to get a mad case of mastitis and HURT and to feel like I was at least bearing a little bit of his pain for him. I wanted my leaking breasts to be a constant reminder, my cross to bear, while preparing to say goodbye. It was the only thing that was an indication that I was a mother, since all I had at that point was a (supposedly) dying baby and the thought that I’d never bring him home.
I replay those first few days over and over again, even now, almost 7 months later. I wish that things could have been different. And I wish more than anything that I could have done something different. I would trade a scar across my belly for that healthy baby I looked forward to my entire pregnancy. I would trade mastitis, a raging infection, my soul, ANYTHING.
But alas, that’s not what happened. I healed from my vaginal birth perfectly, my breasts didn’t even hurt when my milk supply came and went (both times), and Noah, unfortunately, is “at risk”. As perfect as he looks, underneath is a sick baby.
He’s got water on the brain, his fists are usually clenched, they only occasionally come to his mouth, he can’t quite hold his head up consistently, his legs curve in, he curls his toes and feet in instead of being flat-footed or tip-toed when you stand him up, he rarely lifts his chest up with his arms, he can roll front to back, but not back to front, he more often than not will fold like a sandwich board if he tries to sit, and he still does the “over-stretch” where his legs and arms will go completely straight and he’ll freak out.
That is my baby, and the reality that I live with every day. It’s especially hard when compared to his birth club…..there are some very advanced babies in there! And as happy as I am that they are doing things, I can’t stop the pang of combination sadness/jealousy when I read about babies picking up Cheerios and putting them in their mouths, when I know that Noah won’t be able to do that for months.
It’s just very, very hard to “live in the moment” when always thinking about what he’s going to be like in a few months or years.
Will he ever be able to feed himself, go to the bathroom by himself, or even go to school? Will our reality be like the doctors said initially, that he’d live in the hospital, feeding tube, everything? One of the things they said that most stuck in my brain is, “it’s cute now, but what about when he’s 12?” and then they went on to talk about changing his diapers, carrying him up the stairs, feeding him…..will he EVER be able to do anything like that for himself? Will Caleb and I be his only friends because none of the other kids want to hang out with him because he’s “weird” and handicapped? Kids are mean, I barely had any friends and I am fairly “normal”. I can’t even imagine how hard that would be for a kid who’s mentally and/or physically handicapped.
On the other hand, it could be the flip side. Maybe Noah might take a little longer to get there, but maybe he’ll be perfectly fine in a few years. Maybe everything will be sunshine and rainbows and this “blip” in his life will just be an interesting story to tell.
Realistically though, it’ll likely be more of the former than the latter.
And that’s why tomorrow scares me. I know that he’s behind, I’m just scared of HOW MUCH.
Sometimes I wish that all I had to worry about was making my baby sleep through the night, or how he’s going to react to his needles, etc. You know, the normal stuff.
But in any case, I have to “live in the moment”, even if “the moment” is depressing. So tomorrow, we find out what we’re dealing with, or at least we’ll have a better idea.
I’m keeping my fingers crossed for semi-good news.