I Hate Reality.

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.


5 thoughts on “I Hate Reality.

  1. Hugs to you. No one knows what this must feel like and no one can tell you how to feel. Get mad, get scared, get pissed off and terrified. Then come back and remember that the world will never throw something at you that you can’t handle. Noah’s lucky he chose you.

  2. Oh Olivia, my heart is breaking for you…
    I could never begin to imagine the anger, pain, and guilt you are experiencing, though I do understand it. Having a healthy baby and thinking about the uncertainties of THEIR future, is hard on its own. I couldn’t imagine what it would be like for you. I think about Noah constantly. I think about him when I look at my son, born just weeks before Noah. I look at him, and the things he ‘does’, and eagerly await the exciting news that Noah may be doing it too. And sometimes that news comes. And sometimes it doesn’t. And it makes me so. sad. It makes me think how quickly and unexpectedly things could have been different for US. It makes me feel guilty they weren’t. It makes me wish that I had SOMETHING to compare to, though I am so fortunate not to have it. It makes me wish I were the only one hurting and NOT YOU. These things have taught me that you can not take the ‘little’ thing for granted- you can’t sweat the small stuff. Yeah, my 8 month old wakes every 2 hours still. I think of it as extra cuddle time, and know that naps are now just a regular part of my day.
    I know life is hard, and thoughts of the future, harder. I also know that you are an incredibly strong person, and getting stronger. Stronger with every milestone hit. Stronger with every one missed. Strongest yet, in your ability to embrace motherhood, despite your experiences. And never seeking sympathy, although anybody in your position has every right to.
    I am so fortunate to have met you, Olivia. My heart explodes with love for you and your family, and I am so very lucky to be here with you on this roller coaster of life. I offer you my undying support, in any and every way possible, as you grow and face the challenges this experience and motherhood in general, has to offer.
    Stay strong, mama!

  3. Sending love and hugs…I have no idea how you feel or what to say. I think of you and Noah daily. And someone should be punched for that comment…children are not all about being “cute”…they have identities, personalties…and I think you have already seen glimpses of Noah’s!

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