Steve and Joe are just brothers. Neither of them know anything different. The other day my son Stephen said he told a new acquaintance that his brother had Down syndrome and the person replied “I’m sorry.” Steve totally did not understand that response – – it was instructive to me that he didn’t.
I’ve been conscious over the years that others don’t really know what our life is like, for better or worse, having a member who is considered “different”. That’s okay, and appropriate to their life experience. But what I had never considered is that the siblings of my Down syndrome son have also had life experience which excludes something. They do not know what it is like not to have a member of the family who is “different”. My husband and I do, so we see and can take note of the dissimilarity in the way the light shines on our various life movements, but I have two children who don’t know the contrast. I don’t even know if I can explain the way they see it . . . or don’t see it.
My boys got started in each other’s lives very early. Steve was 2 ½ when Joey was born. Since the beginning it’s been a mutual admiration society.
They’ve had very little time apart really, except when Steve has been at school. Joey started some classes at 4 months old. Stephen would go with us and play around on the other toys while we had class with the other moms and babies. He doesn’t remember it, which I also just realized this week, but all the teachers and all the various play and lessons, he also experienced. In his world view there were lots of babies like Joey and lots of families who interacted with them totally naturally. He has assimilated the attitude of all of the families he saw which was to see various handicaps as normal pieces of life.
His brother was there to dance and sing with, and compete for time in the family video. He was there when everybody was asked to taste a new food or kiss one of the “Aunts”, or be dragged to one of their sister’s performances . . . these are all things they experienced together. Nothing in these life events seemed negative to Stephen so to hear someone view his time with his brother as something one could be “sorry” for didn’t have a place in his psyche. And might even have felt like a bit of an insult. Because we are so comfortable with him perhaps our overall view represents a pendulum swing in the opposite direction.
Are there some specific things I could feel sorry about? Sure there are. Personally, I wouldn’t mind at all not needing to call for babysitters the rest of my life, and in point of fact I would very much like to no longer be responsible for someone else’s personal hygiene, but these things don’t color the whole of our lives with our Down syndrome son any more than the exhausting behaviors of a newborn make parents “sorry” that their baby needs food or a blanket. They are just part of the tasks of moving through each day.
Many years ago a friend and neighbor phoned to say somewhat haltingly that his son’s newborn babe had just been diagnosed with Down syndrome. I knew he called with hope that I might say something to take away a bit of their new uncertainty. I responded, “Dave, I can say congratulations to that.” And then we talked a while. And then they began the process of learning about and loving their new grandson.
We all grow up with our own world view. At some point we all learn that others see things differently than we do. Two of the children that grew up in my house had to learn a specific lesson about how other people view life with a handicapped sibling . . . the other is blissfully unaware of any complications at all and just lives. He lives and loves, and teases and laughs. He smells the flowers and feels the sunshine. He knows no regret and no mourning. His life is full of exactly what he wants to put there . . . not a bad gig. And as my older son reflects, nothing for anyone to feel “sorry” about.