Monday, May 24, 2010

'Who can I be mad at?'

I started this Saturday and finished Monday.

'Who can I be mad at?'

Ben had a great day yesterday. He went to school in the morning and afternoon, relaxed in the snoezelen room, went to the library and was quite happy, much closer to his usual self.

His worker Sallyanne is wonderful with him: she empowers him.

Today was another story. Perhaps my perception is off because I didn't sleep well. The hospital is deserted because it's the long weekend. It's usually packed on a Saturday morning with kids coming for swimming lessons. Typically we'd sit at the floor-to-ceiling window above the pool, watching with everyone else. I'd tell Ben that one of the first things he's going to do when the cast comes off is go in the pool. Then we'd walk by the creative arts studio and perhaps stick our head in to join a music circle. If it was nice, we'd go for a walk outside in Spiral Garden.

But today because of the holiday there was no swimming or art and none of the usual bustle of people coming and going in the hospital. It was raining, so we couldn't go outside. I couldn't get the video game to work in the teen lounge and another child was playing the Wii that Ben likes. We watched for a while, but we soon ended up back in Ben's room. Then I remembered that Ben still hadn't had a bowel movement. The narcotics he's on freeze the digestive system.

The nurse and I decided he needed a suppository, which of course he didn't want. I explained why he needed it, but he still signed "no" and "stop." And I felt so bad for his powerlessness, lying there in a body cast and having this procedure "done" to him. Some friends stopped by, but by this time Ben was sweating profusely and uncomfortable.

And afterwards I couldn't stop thinking about their healthy child and being furious that this is happening to Ben. I was raging at all of the indignities and pain and discomfort of the last six weeks, which then segueways into all of the hard things life has dealt Ben over the last 16 years. "It's just not fair," I will later sob to D'Arcy. I'm mad, but who or what can I be mad at? Life? His disorder? There isn't anyone or anything I can direct my anger at.

So I just carry it around. And thankfully, something always shifts. I spend a couple of hours away and when I return Sadora tells me that Ben had an awesome time playing Wii and I can see he's happy again. I stayed at the hospital last night and we went for a long walk outside and blew seeds off old dandelions and made wishes. And today Sallyanne brought her adorable seven-month-old daughter Grace for a visit (in photo above). It took her 90 minutes to get there by TTC. Can you believe it? It really touched me that on her day off she would come for a visit. Because it made Ben very happy.


Oh, Louise, I'm so with you on this one -- the constant back and forth of anger and resentment, bitterness and exhaustion and then the grace, the grace, the grace. Love to you and Ben -- we're all linked and bonded in this --

wow Louise, what a dedicated friend Sallyanne is.

I think you can be just mad period. I think anger is a very appropriate feeling when we helplessly watch our kids struggle and be in pain. I'm thinking of you and Ben. I'm so glad that there are people around you who truly love you and Ben. The picture is very sweet! Sending lots of love to the both of you!

Hi Louise,

I just wanted to share a few things. First, having had two major surgeries to lengthen my hamstrings, groan muscules and achilles tendons, I understand the emotional pendulum of both parents and patients --you have also help with this, and I wholeheartedly thank you. Hence, please believe that regardless of Ben's disorder, he will understand all the difficult decisions which you and your husband have had to make over the years on his hehalf.

Second, I would have loved to meet Ben and Sallyanne last week, but I'm having touble walking these days (my left leg is worsening, but I can still tolerate the pain)so I would've only slowed them down. Like you, D'Arcy and Sallyanne, I will always put Ben first.

Third, I know that this isn't usually your style, but if you need to direct your anger and fustration at someone, please let be me. Just think, "Matt is a real son-of a-bitch! God-damn him!!!