This past week, I've been thinking over and over how my favorite times are when the count in the household is five---when all three kids are around. It's crowded, it's loud, it's food consuming and endless dishes and lots of arguments and loud music, and it's fantastic. It's wonderful. Being a mother to three very different and very cool kids (or two adults and a kid, now!) is my dream come true.
I've also been reflecting, though, on how autism affects the family count, the family unity. I'll say the right things and mean them---I think we are all better off than we would be without Janey. I think she gives our life the salt, the spice, that makes it more than it would be otherwise. I am pretty sure her brothers and Tony would agree.
However, it also makes it very hard to be a family of five anyplace but at home. We were very lucky for the graduation weekend. My parents came down and watched Janey during the morning graduation, so Tony and I could go with Freddy. When we picked up William and drove him to the ceremony, we all noted how odd it felt to have the four of us in the car. It's the combination that just about never happens. Someone is always at home with Janey, or if she is with us, usually the boys aren't. But we were able to attend, and that was great. My friend Maryellen was even there as a backup, if something had gone wrong with the arrangements. But I wish...I wish Janey could have been there too. And of course she COULD have, but in many real ways, she couldn't have. She would not have stood two minutes of ceremony. No-one around us could have listened to the speeches. One of us would have had to leave, to take her outside. And the focus would not have been on who deserved it at that moment, William.
For a rare event like a graduation, I accept that we will rarely number five. But I wish that we could do more as a whole family for the more minor events---a dinner out, a visit to friends, a movie or outdoor concert or trip to the beach. A lot of why we don't has nothing to do with Janey, and much to do with the big age divide in our family. The boys are no longer at home most of the time, and when they are, they are often working or with friends, and that is how it should be. But even when they are around, the simple fact is that very few places are possible to go to with Janey. Or they are possible if one of us is primarily a caregiver, and ready to leave at any moment. It's nobody's fault. It's just the way it is.
|Tony, William, Tony's sister Rose and Freddy|
I'm going to hold onto the moments this summer we are all together. William heads to Chicago to graduate school in the fall. Some day, both boys will perhaps have their own families. Maybe, if we are lucky, we will have grandchildren. But the moments we all five at home---those are the moments that make me wish I could save time in a bottle.