I had a special needs eclipse this morning. One of those moments when the challenges of raising a kiddo who needs a lot of help blocks out all of the light. The details aren’t important, but I can say that the morning involved toileting accidents, cold tea, lots of grabbing (on his part) and redirection that escalated into yelling (on my part).
I can’t even capture the intensity of the dark feeling now, but it was there, even though the circumstances seem trivial now. In one flash I saw myself forty years from now tying his shoe laces, wiping his mouth and his bottom, and my mind did a high-speed rewind through all of the thousands of tying and wiping moments I’d have between then and now. Zero to despair and rage in sixty seconds. It was hot and black and tight.
In those moments, there is a resentment, if I’m honest, both toward my son and toward the Universe. I cannot recall the last time I finished a breakfast without getting up. That’s where the heat comes from. The tightness comes from the seeming eternity of it. I have done this for so much longer than I thought I’d have to, and it’s not ending any time soon. Somewhere, someone is leisurely drinking tea and reading the paper, and it ain’t me. And it won’t be any time soon. A searing current of jealousy is there. I’m back at the very “why me?” beginning. It’s not pretty.
Something shifts ever-so-slightly and a friend pops into my mind. She has a child with special needs too, and it strikes me that she is probably having, or has had, or will have a very similar morning to mine. Then another friend. The another. A comment on this blog comes to mind; a mom who pointed out that it used to feel like we were having “one of those days,” but with time, you realize it’s just “one of those moments.”
At that moment, the eclipse passes. My beautiful boy is sitting in front of me again, and I am tying his shoes. He pulls to get up before I’m finished, but things feet looser. I don’t need to push against it, to control it or for it to end. It just is.
I hear this post loud and clear! My goal is acceptance and sometimes I feel so close and then suddenly I, too, am back at “why me?” I have been filled with resentment (and, yes, jealousy) lately, too, and I believe I know what you mean by the dark feeling. How long will I have to do this? How can I keep doing this? And that goes to: What will become of us??? AAAAAAHHHH! Then I force myself to take some deep breaths and repeat my mantra: One Day at a Time. And I read your post and talk with others in similar positions and it all gives me strength. Thanks for writing. I am with you.
Sometimes “one day at a time” is too long! 😉 thanks for sharing.
Did I say “Day”? I meant “Second!” 🙂
🙂
I’m with you, and I doubt that any parent–of a special needs or neurotypical child–can say they’ve never gone there. And the folks who attribute religious significance to existential suffering drive me nuts. When I’m down the rabbit hole or in the eclipse, I remind myself to choose the kind of person I want to be. I strongly believe in the idea that the measure of a just society is determined by how its weakest members are treated. Whether people want to attribute the idea to the Old or New Testament, Dostoyevsky, Churchill, Ghandi, Dr. Martin Luther King, Jr. isn’t the salient point. The point is that we–you and me and everyone we know–are society. And some of our children are among the weakest members. If we expect others to be compassionate toward our kids, we have to choose the same mindset for ourselves, especially in the toughest moments. It is incredibly challenging and painful to try and drag your best self out of the deepest, darkest, holes, but think of the alternative. We carry on for ourselves, our family, our community because these little acts of overcoming rage and despair make the world a slightly more just place.
I like that–choose the kind of person I want to be. Thanks.
We carry on….. exactly!
As a mother of a 9 year old special needs daughter, I can identify to these “eclipses” all too well. Thanks for putting it so poignantly and sharing it with us. It makes our burden a little lighter.
I’m glad I could pay it forward. It’s helpful in those moments to know we’re not alone. I used to feel so ashamed when I had those moments (and days and months) but I wanted to share so that we all recognize how common it is. Thanks.
After a recent surgery and countless nights of no sleep all my special needs child had to say was “Thank you mommy for taking care of me” and all was right with the world!
How wonderful. The payoff doesn’t always come like that, but it is a total blessing when it does. What a wonderful thing to share.