A dose of reality

Let's interject a little reality into the blog today about being a special needs parent because the past few days have been a little dire around here. We're back to seizures and psychosis since Sunday night. She sleeps (knock wood), but life hasn't been easy. The worst of it is we have no idea why this round is happening. November was, we think, due to Covid. December/January was due to J. being gone and her tooth being knocked out. This month? No idea. We're changing her seizure meds a bit, but that should result in fewer seizures, not more. It is disheartening.

Actually, let's be truthful and admit it is more than disheartening. It is demoralizing and frightening and depressing. I'm sure she feels the same way. But you know what? Sometimes it can be difficult to put yourself in your child's shoes because you are also a mess. Usually I am pretty good at not catastrophizing, but three weeks of this in as many months has kind of done me in. I find myself fretting about whether this is going to be my life from now on... three somewhat good weeks (and that is a relative 'good' that I'm using) followed by an atrocious one where I can only keep her regulated by sitting on the couch next to her. Will I ever be able to do things? Will I ever have a life outside keeping tabs on this child? Will J. and I ever be able to go somewhere the two of us? Will one of us be able to go somewhere without causing the other to live on the edge without someone to tap in for them? I just don't know. 

Then, when you are stressed and worried about a possible bleak future, it makes you less patient than usual. And patience for me is a pretty limited commodity to begin with. I have been known to announce to children that my patience has been tapped out and they should plan their lives accordingly. So then you are not a terribly patient parent which then gives you a heaping dose of guilt on top of the heaping dose of worry you are already battling.

All of this then causes existential questions of why did we do this? What if we hadn't? You know, those helpful sorts of questions that are the emotional equivalent of picking a scab. They do no good, it often hurts, but you just cannot stop yourself. It's not been good around here inside my head.

Now, I want to make it clear that I do love this child. I will do battle with anyone who dares suggest that she is not worth the time and love and patience that she requires. But I also know that life can be complicated. You can hold two very conflicting feelings at the same time. Great love and great frustration and fear can go hand in hand. Knowing you are doing something vital and important for a child while also wishing you had more freedom are not mutually exclusive. Feeling trapped does not mean you do not love the person you are caring for. It is very, very complicated.

And the trouble with the 'oh, aren't you so wonderful' narrative is that it makes the parents out to be some sort of unworldly saint; that they are always happy and content and peaceful about parenting their child. It does not allow room for the less than wonderful feelings that come part and parcel with parenting a challenging child. You know what else the narrative does? It absolves others of the need to do anything to help. You know, because those parents have it all together. It's not true, but there is that tacit assumption in the statement. Parents of special needs children are just as human as anyone else. I'm sorry if that ruins your personal narrative that only special people are given special needs children to raise. We do not always enjoy parenting our children. We are not always good at it. We sometimes fantasize about what it might me like to not have these responsibilities while at the same time we horrify ourselves at even thinking something like that. We can't even win inside our own heads. 

I warned you I have been a bit short tempered recently. R. seems calmer this evening. maybe she will sleep all through the night and I can sleep without clenching my teeth all night and thus not wake-up with a splitting headache. (On day three of this, it grows rather old.) I know life will calm down and I will be able to regroup. I also know that this moment in time is just that, a moment, even if my emotions feel we will be stuck in this moment for forever. But I thought it might be useful to write out the garbage currently swirling through my head, and give those of you looking in a dose of reality and maybe give other special needs parents a moment to know they are not alone. Plus, this blog is actually my personal therapeutic outlet (along with my horses and riding), and there was truly not anything else I had to write about. I can only do top ten lists so many times in a row.