A few years ago I was trying to explain to my psychologist during my weekly "sanity checks" exactly what it felt like to have two kids with Autism. How do I perceive the past, present and future? I couldn't exactly explain it so instead I told her about the picture I had in my head.
I'm on a highway and it's a relatively sunny day, it's not blindingly bright but its also not rainy either. I can see for miles both in my rear view mirror and ahead of me clearly without squinting. The road is relatively straight, not a lot of curves but a few hills are both ahead and behind me. The car I'm driving feels comfortable, cozy, right... I've chosen this model well. Theres not a lot of traffic on the road with me. But there is something that is missing, something that I didn't notice for miles and miles and miles and now that I do see it, I can't see past it. There are no ramps on this highway. No on ramps, no off ramps. It can make me feel alone even with other cars on the road. It can make me panic knowing that if I run out of gas, there's no place to stop for more. It can make me feel isolated, there is only a cell phone in the car with me. Without technology I would have no way of communication. I can speed up, but where am I going even if I go faster? I can slow down, but what am I delaying? I can stop but that feels like giving up and it is a far worse feeling than just continuing on, even when I don't know what is at the end.
So some days I'm driving along, my path is set and I've hit cruise control. Even going over a few hills, I'm still making good time. I'm comfortable, content.
Then there are other days, the hills are overwhelming, there aren't any off ramps and I'm very near running out of gas. I don't even know how I got into this road in the first place!
And it feels so unfair.
There are days when I know that I am here to be my boy's mom, that their future lies in my hands. That every win for them is a win for me. Sure I have some hobbies and distractions but ultimately the upcoming IEP is going to be more important than the latest popular fiction novel just released by my favorite author. The state waiver renewal, paying the therapy bills, budgeting for next month and researching trusts and power of attorney is more important than scrapbooking our vacation. Researching supplements, newest clinical research and books written about Autism is more important than getting the ingredients for a new recipe that I would like to try. It has to be, I have to keep moving. Not that I never do those things, they just aren't my priority. They can't be. I can't stop on the highway, there is no progress made in park.
The boys' diagnosis gave me the path, it took my scrambled interests, my desire to learn and all the many many subjects I have majored in college and studied in my free time and gave them a direction. It gave me a voice, it gave me this blog and it gave me you, a reader. You've heard me say that sometimes things are a happy-sad. This is a good-bad.
Am I ever going to write the novel I have planned in my head for a decade? Probably not. Will I ever open that pie shop whose business plan was my final project for my business degrees? Only if it is what my boys wish to do. Will I ever go back to college for my Masters degree? Not likely.
I've always thought that it didn't make sense to complain about something that you weren't willing to change it which is why I couldn't find these words to explain my highway. In my head it sounds like complaining but there is absolutely nothing about this journey that I would change. I love and adore my boys, every day they fill me with pride and strength. They are the fuel that keeps me going even without any gas station exit ramps.
I don't know what is going to happen to my highway, maybe there are some side streets ahead, maybe there are some scenic overlooks worth a stop. I just don't know. Right now it's open road and that is very much a good-bad, happy-sad.