I've spent the last two years trying to convince myself that I don't have any more stress than anyone else. Yes, I'm stressed at times, but everyone is stressed in different ways, right? I know if Elijah was developing typically, there'd be plenty of things that would cause us stress. Back talk, potty training, sleep deprivation, and temper tantrums – all those "typical" parenting things are certainly stressful.
But, here's the difference…when it comes to Elijah, we can't take anything for granted. I hope that Elijah will one day speak, but there are no guarantees that he will ever say anything more than what he's said already (which, if I'm honest with myself, is basically nothing). I'm pretty positive that at some point we'll be able to teach Elijah how to feed himself, but he may never pick up a spoon and feed himself all of the calories he needs. I can dream of a day that includes no more diaper changes, but it's possible that our little man may never be aware enough to know when to use the potty. Do I believe in my heart of hearts that he'll do all of these things? Yes, I do. But, there are simply no guarantees that he will learn any of these things.
I know what you might be thinking…there are never any guarantees for anyone.
And you'd be right, there are no guarantees. Any one of us could drop dead tomorrow or get ill or become disabled. But those are the "what ifs." Andy and I are already living in another realm – a world where the "what-ifs" have already become a reality. And you know what? It's stressful to raise a child who has disabilities.
I suppose that's not a profound statement. It seems kind of silly to even write it, but I don't often let myself admit that our road is a hard one...that many don't envy the shoes that we must wear. I know what has brought this on: it's having more than one doctor ask Andy and I recently, "How are you guys doing?" We say we're doing okay and we are. We're managing this special needs world the best we know how and learning as we go.
Today we saw Elijah's neurologist and he asked us if we make time to get away, just the two of us. We said that we do get away occasionally, but just like any other parents it'd be nice to get away more often. "Yes," he said. "Most parents would like to have more time away, but you guys also have more to deal with than most parents." And there you have it. Acknowledgement of something we already know, but don't often admit even to ourselves…parenting a special needs child is tough sometimes.
I can't help but notice the parents everywhere I go and think, "Wow, they seem so calm." I can't help but notice the parents having conversations with their kids. Con-ver-sa-tions, people! I can't help but notice that parents can sit and relax at a gathering while their children play nearby – at the same time Andy or I are constantly watching Elijah to make sure he doesn't walk off a curb or run into a tree or....(fill in the blank). Relaxing isn't really part of our vocabulary when Elijah is awake. And while I'd like to think that we don't have more stress than other parents, I'm kidding myself. I'm constantly wondering if I'm doing enough, constantly wondering is this "just Elijah" or is it a symptom of his hurt brain? Is that movement "just" his cerebral palsy or did he just have a seizure? Speaking of seizures, the neurologist reconfirmed that Elijah will always be at a high risk for seizures. We don't think he's had any seizures since his NICU days, but Elijah will always be at risk. We'll never be able to fully relax. And yes, we're stressed. But you probably already knew that. I guess I just needed to admit it, for me.
I just can't write something so overall negative without reminding everyone that it is an absolute privilege to be Elijah's parents. He's so easy to love! And while we are stressed, we are as equally blessed. I never forget that.