Category Archives: Venting

Actions and Reactions

Rob’s new bike arrived this past weekend, and the weather did not comply with his desire to get out and test it. He said more than once, to me and to other people, “I can’t believe I’m just getting my bike and now the weather is so bad I can’t even ride it.”

I understood what he was saying, but it brought up a feeling that I get from time to time when people say things to me or in front of me that underscore my disability. The struggle I go through when this happens is to wonder whether I am being oversensitive or they are being at least slightly insensitive. I have more examples: the friend who told me she was so tired of sitting on a particular morning that she was going to stand for the rest of the day and make sure she walked around a lot. The friend who made dinner in my kitchen and went on and on and on about how fun it was to cook and particularly in my kitchen, with its counter space and great appliances.

There’s a big part of me that wants to laud these women for feeling so comfortable, and for maybe not seeing me as disabled when they said these things. However, I have to admit that in the moment, I was annoyed. You’ve been sitting all morning? I’ve been sitting for three years. You love love love cooking in my kitchen? I’ve never done that. Read More>

Getting Warmer?

My favorite parenting book is called Brain Rules for Baby. I think maybe I’ve written about it before; I happen to be pretty obsessed with it. The book is written by a brilliant scientist named John Medina, and I had the pleasure of hearing him speak shortly after Scarlett’s birth.

Among the observations and research that Dr. Medina shared was this (completely heterosexually oriented) idea that if a dad wants to have a happy and successful child, he must treat the mother of that child as though she is a queen. I recall reading this part of the book out loud to Rob before our baby was born, but he didn’t seem all that moved by it, and I have to say I’m not sure he’s ever treated me like royalty. Unless you count his treating me like a royal pain in the ass, in which case yes, he does do that. But not without reason.

Dr. Medina also talks about the most successful method of parenting, which he describes as “warm but demanding.” I like that, and I’veĀ strived striven strove worked to enact it in my raising of Scarlett. But it doesn’t always pan out correctly, because while I can usually remember the demanding part, when she is not listening and is being particularly difficult, I often forget to be warm.

We’re going through a bit of a rough patch lately, although as I write that I realize that it doesn’t take into account all of the good times, all of the sweet times, all of the times that we have a conversation that leaves me slightly in awe of this little person who is growing before my eyes. However, that same little person is desperate to do exactly what she wants when she wants in a way that usually involves the dog and is just incredibly incredibly annoying. I often tell myself in my own head that if I weren’t in a wheelchair, if I didn’t have ALS, that things would be so different. But I know my healthy parent counterparts can get just as frustrated with their own children. Kids, if my own is any indication, can be real jerks.

But ALS adds more to our story. I can ask Scarlett to do something, but I can’t help her with it or show her how I’d like it done. If it goes wrong, I can’t clean it up or fix it. I have to ask someone else to do that. So I get upset, not necessarily with her, but with the fact that I can’t do the things that I believe any mom should be able to do.

I’m not trying to be hard on myself, just honest. I definitely do my coldly demanding parenting in front of other people, and I think that it can be surprising to them. I have very high expectations for my daughter, because I’ve seen her meet them. But I also know that she is still a young kid and that I should be more flexible in certain situations. I know this, but that doesn’t make it any easier when she is flailing her arms around after I’ve asked her to be aware of her body, and a glass of milk goes flying, and I can’t just calmly and quietly help her wipe it up. When I snap at her, I sometimes think it is so the person who does have to clean it up knows that I don’t take what they’re doing for granted. Spilled milk is definitely no big deal. But aren’t we all a little tougher on our kids when we sense that other people are being inconvenienced?

When she was younger, even when things were difficult with her behavior, I handled it better because I knew that I could. That we were in it together, and that I was guiding her. I was being warm, but also teaching her what was expected in our family. And now, what am I teaching her? That we cry when we get frustrated? That we lash out at other people when we are feeling helpless? These are terrible lessons, ones that I’m sure Brain Rules for Baby would not recommend.

On the other hand, being coldly demanding does strike me as something a Queen might do during her reign. Maybe I’ll just go with that, and stop apologizing. Will someone please hand me a scepter? Actually, just stand over there and hold it. We’ll all know it’s mine.

Supermom

Who wants to hear a stupid story? Ready? Scarlett is Superstar of the week at school, which means she filled out a questionnaire about herself, decorated a poster with a life-size tracing of her body, and brought numerous items in to show the class, including her favorite book, which is Harry Potter and the Deathly Hallows (Book 7), but she had to bring in Harry Potter and the Sorcerer’s Stone (Book 1), because 7 is not really appropriate for a class of six- and seven-year-olds. Exhibit A: The first chapter is called The Dark Lord Ascending, and the teacher reads part of the book to the class. Also, a lot of the girls are reading this series, and we didn’t want to ruin anything for those who hadn’t finished yet. So we compromised and sent the first book.

That’s not the stupid story. It’s just the build up.

She’s had a great week as Superstar. Being the center of attention has helped her behave and listen well in general, which she has trouble with, but she’s also six years old so I don’t think that’s terribly abnormal. And last night at dinner she decided she wanted to decorate a small piece of paper with stickers for each girl in her class. There are 21 of them, so not including Scarlett we needed 20 pages.

She set to work and finished 13 last night. This morning she was to do the remaining seven before school. As her carpool was coming, she triumphantly announced that she had 20 pages done. And then she told me she had included the teachers. Which means, for all you math geniuses out there, that two girls were missing. Read More>