When it comes to being the sibling of an individual with a developmental disability, I am about as positive as they come. People who have met my brother Peter might understand why. I adore my brother and I appreciate how well he knows me, in his own way, and his unmistakable, unconditional love. I embrace the role that I will assume -- that I am beginning to assume, really -- in helping to ensure that he can be as independent, productive and happy as possible in the future.
However, on some days, I am overwhelmed by the responsibility and resentful of my role as a sibling which I did not entirely choose. These are the days that I wake up and say, "I don't want to be a sib today."
The day after Peter departs from a weekend visit is usually one of those days.
His most recent trip to NY was a blast. As soon as I saw him at the train station, ambling toward me wearing a giant smile, a familiar rush of happiness washed over me. "There's my brother!" I thought. During the weekend we enjoyed a hockey game with friends and family, ate enough junk food to last us both a good while, and spent time with a new friend of Peter's who we are hoping will one day be his housemate. Just seeing the two of them together -- talking about movies and impersonating actors, savoring chocolate cake, laughing at each other's jokes -- was entertainment in itself.
As much fun as we always have together, Peter's visits usually entail a good deal of work and some degree of worry on my part. There are hygiene issues to consider (after a sweltering summer day some years back, when I thought that Peter was going to take out an entire subway car by virtue of his raised arm, we have created a whole shtick regarding deodorant that cracks us both up every time), and reminders about subway safety. There are social cues that he will sometimes miss, and situations in which he would literally talk about baseball for hours, regardless of audience or the conversation they may have been having, were it not for my attempts at tactful intervention. There are stops along our way to buy bottled water or potato chips, and conversations about why it is just not necessary to buy six of each, right now, just because they are on sale. There is the wake of empty water bottles and crumpled napkins throughout the apartment.
I know that compared to many siblings who have brothers and sisters who require way more fundamental, hands-on care, I have it pretty easy. But by the time Peter leaves after a visit, my internal fuel tank is usually empty and I wake up the next day not wanting to have anything to do with being a sib.
So what do I do? I let myself off the hook and give myself a break. I push thoughts of Peter and the unknown future to the back of my mind, and focus on other, preferably lighter things. I read a novel or a vapid entertainment magazine. I go for a run. I shop with friends. I do something that makes me happy, something to put fuel back in the tank and take care of me.
Many of the siblings I've met over the years have had a really hard time with the idea of putting fuel in their own internal tanks. The idea of doing something purely for their own enjoyment seems selfish to them. I can completely relate, because I used to feel the same way. How could I possibly sit around and ENJOY myself when there was so much that I could be doing to help my brother?
Somewhere along the line I realized that if I didn't take some time out to take care of me, I was going to burn out and be unable to do anything for anyone, least of all Peter.
So now on the days that I wake up and that little voice inside says, "Nope, don't wanna be a sib today," I listen to and indulge it, knowing that when I am ready, I will put one foot in front of the other and continue along the path that will hopefully lead to a bright future for both of us.