my pink toes

It’s always been hard to be Henry’s mom. From the time he was just hours old, we had a hunch this baby wouldn’t be like the rest of them. We also got our first clue in how difficult getting help and empathy in parenting this child would be. In the hospital, he nursed 17 hours straight, all though the night. I finally begged the nurses to take him for a bit so I could get some rest. They very reluctantly agreed with lots of tsking and tut-tutting about how I was giving up already and maybe I should put my needs aside and take care of my precious little baby. They didn’t know what I failure I felt even asking for help. That I wouldn’t have asked unless I was at the end of my rope. I had stopped crying, because the tears had run out hours before. I wasn’t hyperventilating, because I was so far beyond that point (after 20 hours of labor, plus 24 hours with a sleepless newborn) that I was nearly catatonic. For a hospital that prides itself on being intuitive and nurturing, it sure would have been nice if someone had noticed my distress and offered to help instead of shaming me when I finally snapped after a two-day ordeal. (Oh yeah, and they also ruined my bladder, but that’s another story altogether…)

I know those of you who have a child with a “real” disability may get angry for my borrowing your paradigm, but parenting Henry seems to feel a lot like we have a disabled child: This is not what I expected. No matter what I do, I can’t get away from it. It gets better, but not by very much at a time. At least I do have the hope that my child will become a “normal” adult and will eventually leave my home, but the day-to-day feels pretty overwhelming.

Coming back from China has made me aware again of how all-encompassing it is to parent Henry on a regular basis. When I’m in the middle of it, I am always overwhelmed, but in a familiar way. Coming back from spending a week and a half with a “normal” eight-year-old was an eye opener. Henry was irritable with me, moody, and impatient from the second he met me at the baggage claim. From the first hour I was back, I could feel my skin starting to crawl. By hour two, I was doing deep-breathing exercises to keep from hyperventilating and having a full-blown anxiety attack. When the kitten arrived at hour three, I nearly went over the edge. Henry took forever to fall asleep that night and then was up from 2:30-5am. By 9 the next morning, I was nearly ready to book myself a one-way ticket to Anywhere Else.

Part of the frustration is that I feel so trapped. If you hate your job, you can quit. You can’t quit being a mom. And I feel like I didn’t choose this stay-at-home-mom job as much as it chose me. I wanted to stay at home, at least for a while – but by the time Henry was a few months old it became abundantly clear that I had no choice in the matter. Any daycare would have kicked him out or abused him. At the very least, they would’ve resented every time he came in the door, and he would’ve picked up on that. It took everything I had on a regular basis to make it through each minute, each hour with him – how could anyone else put that much effort into a kid they didn’t love with every fiber of their being?

I like to think it’s the intense parenting and huge sacrifices we’ve made that have helped shaped Henry into the boy he is now. I think that without all our work, he’d be the kid at school that everyone groaned when they saw coming; the one that all the staff knew by name. Instead, I’m always amazed at Henry’s reputation of being cooperative and helpful. Of course, in order to be that way he lets out all his frustration on me.

I am still “paying” for being gone. Henry still won’t sleep properly – Dave is now sleeping on his floor at my therapist’s recommendation. (I think she knew that if I had to sleep there, I’d go over the edge and never make it back).

My skin still crawls constantly and I feel like I’m hearing fingernails on a chalkboard, but I’m getting used to the feeling again.

I want to write about this whole experience more – to put bits and pieces up here and sort my thoughts out.

I still love this child with every fiber of my being. It’s just a whole lot harder than I thought it would be.