I can click and get access to the internet; drive through a fast-food restaurant and get a meal; aim and point a remote and get a movie; push a button and have popcorn in 2 minutes and 30 seconds; or hold down a button on my iPhone, and be connected. Is it any surprise that I have been conditioned to think that when I get a diagnosis for my son, I should receive an instant cure?
Seizures are scary business. People can offer support and shock but at the end of the night, when I’m tucking my son in bed, it’s just us. His seizures are happening silently. No signs. No tells. So, how am I supposed to know what will work to stop them, or if they will stop, in fact? How long is it supposed to take?
You may be wondering if I put him on medication or not, and why. It’s the big elephant in the room, isn’t it? Would it really make any difference, at this point, if I told you? Medication does not work like the microwave, Netflix or the good internet connection. It takes time. The right med. The right dose. The right effect. And none of that is instantaneous.
I’ve read a lot of posts about whether the parent of a child with autism has chosen to medicate for a variety of reasons. There are definitely different camps on the issue. There are those people who believe no one should use any kind of medication. There are those who will take any medication prescribed by any doctor. And then there is the rest of us, who all fall somewhere in between.
As for me, I am afraid to give my child (or even myself) a medication because of the side effects. But regardless of my “feelings”, my duty as a mom, is to rationalize and balance the objective facts with my subjective fears, use observation and intelligence and achieve a reasonable outcome. And that is what any of you, in my position, would do.
As I walk myself through this decision making process, I find a well worn path ahead. Others have walked this path before me. Some are veteran guides who share their knowledge of the way. By doing so, they’ve mapped the road and warned of the dangers. I recognize and understand what looms ahead. I know what it should look like. Knowing where the dangers are and how to navigate around them, if they appear, helps me to feel a little more in control.
But I haven’t ever actually seen any of these dangers. I worry that I might not recognize them, or they might deceive me. I think I see them and then they disappear, leaving me wondering if I am seeing a mirage. The guides don’t know my son’s stamina. They don’t know whether his little body can walk this path or how far he will get.
But now, if I try to look back, or turn us around to run the way we came, I find that the road backward is gone. It’s simply and cleanly cut off. Like a hanging bridge, the rope’s come undone. The bridge has fallen. There is no way back. We can only go forward. And it is up to me to make the next move. A decision that will affect my innocent little boy’s life.
His beautiful doe-like eyes, with their extra long lashes, look up to me. He places his hand in mine and holds tight. His small and pouty lips give me the mommy kisses and hugs. The ones that convey that complete, unwavering trust that I will make the right decision for him. Every good part of me longs to make everything right with the world for him. Everything inside me screams for an instant and permanent stop to the electrical assault happening inside his brain.
Knowing there is no instant cure, and no cure at all, I have to make his world the best it can be. I have to push his boundaries, and keep him safe, all at once. I have to do it by feel and by reason. My husband defers to me. He has missed the discussions, the debates, the research, the mapping. He too, trusts me to do what is right for our child.
As we inch forward, there are no lights showing the way. There are only grooves formed from the fairly empty, sketchy road before us. Unpaved, and sometimes overgrown areas that obscure the course, do not stop us. Beneath us is solid ground. If we follow the best path with the least obstacles, and I look deep within, I will find our answers. It will take time, work and carefully planned and executed choices.
With each step forward, the road behind us disappears. I am in charge of our future. And no matter the voices around us, his outcome is, in reality, based on my solo dialogue.