Some days, when I am not viewing the world in a negative or cynical light and when I haven't had to share the road with too many bad drivers, I look around me and take stock in the little things that I am thankful for. This week I have had cause to give thanks to the powers that be for my healthy children. Sure, they get sick every once in a while, but they are not disabled. Their brains and bodies work and I get to experience being a parent of "normal" children. I once heard a poem about the birth of a typical child being compared to taking a trip to Italy and the birth of disabled one being compared to a trip to Holland, not what was expected, but over time parents are generally able to learn and grow in the beauty of each trip no matter how unplanned.
It has been fifteen years that I have worked with children of varying mental and physical disabilities and every so often there is a family that comes through the door to the office that gets me in some way and that happened this week. This family took a trip to Holland, a drastically unplanned one at that, about four years ago and as these problems are genetically related, it is unlikely that this child will have a sibling. The child is beautiful in his own way. I can see where the eyes of the appraising and often judgemental public may miss his beauty and I feel for these parents. Just about everything that could go wrong with a child has gone wrong with this kid.
What I think about though is the grief that parents of only children who are disabled must have to go through. To never be able to see their child change emotionally, socially, and cognitively from a three-year-old to a six-year-old to a ten-year-old onto the teenage years, then college, and independent adulthood. To know that the development will stop somewhere between one-year to three-years of age I think would be very hard for any parent to do. I watch and marvel and the strength, courage, and happiness that so many of these parents have day in and day out, what a gift, what a challenge.