Been there, done that

Blogging has become a wonderful tool for parents of disabled kids. While exploring Blogger, I have discovered so many fascinating blogs where parents celebrate their kids’ achievements, grieve their losses, support other parents on their journeys, vent their frustrations with the medical and educational establishments. They have created a network of support that spans the globe.

With my kids all grown up and mostly on their own, I admit to having a feeling of “been there, done that” at times. I remember my outrage at insensitive or condescending doctors. I remember the ache I felt when my kid was left out or teased. I remember my sweet sense of victory when I successfully fought to have my daughter with severe cerebral palsy educated in regular classes (the first time our school district had mainstreamed a student with such severe disabilities). I remember my pride at accomplishments, big and small.

I also remember that we had it a bit tougher back then, just one generation ago. Accessibility was not yet the law of the land. I had to bump my kids’ wheelchairs up and down stairs hundreds of times. I often had to leave my daughter’s wheelchair outside the tiny restroom stall and carry her in. Most children had never encountered a child with disabilities in those pre-inclusion days, so we endured so many stares and hurtful comments. For that matter, most adults had had limited exposure to disabled kids, and I often had to challenge their stereotypes as well.

But, when I start feeling smug or patting myself on the back for being such a pioneer, I catch myself. Over the last year or so, I made the acquaintance of a woman whose daughter is my age (56) and has cerebral palsy. We have spent a lot of time reminiscing about the 50s and I am struck by how nonchalantly she talks about raising a child with disabilities in that time. She mentions her daughter‘s stint in Girl Scouts: “Of course, I had to be the leader so she could participate.” She talks about signing her up for dance lessons. She tells me matter of factly how her daughter had to manage the stairs at school on her crutches. She recounts how her daughter was almost not allowed to graduate from high school because she couldn’t participate in PE (finally the family doctor, who was on the school board, intervened and got them to allow her to substitute another elective). And she proudly talks about how her daughter went off to college about 300 miles away, with an adaptive bike her dad had made for her to get around campus. I am really in awe of this woman, who, by her own account, was just a “country girl,” who assumed her daughter would have a normal life and made sure that happened in an era when it wasn’t easy.

So, when I read these blogs by parents who have only been on this journey one year, four years, or nine years, I may initially have that “been there, done that” feeling. I may feel somewhat smug or amused: “What? They think they’re discovering something new?” But then I pull myself up short. Yes, they are discovering something new…something that’s new for them. And it’s in the discovery that it becomes real for them.

Regret

In the movie “Saving Private Ryan,” there is a memorable scene in which the young medic is sitting in a deserted church on a rainy night, writing a letter to his mother. Quietly, poignantly, he tells his comrades about how his mother would come home late at night from work, eager to talk with him about his day, but sometimes he would just pretend to be asleep, so he wouldn’t have to talk with her. Staring wistfully into the night and with puzzlement in his voice, he says, “I don’t why I did that…”

I suppose that for many of us that moment of realization comes too late. When we’re young and full of ourselves, our parents lives seem dull, their opinions irrelevant, their concerns laughable. As we grow older, our own concerns fill our thoughts: work, bills, our own kids and their problems. And as our parents become elderly, we sometimes, in spite of ourselves, grow a bit impatient with them…with their ever-present worries about their health, with repetitious stories about people we don’t know, with their complaints. In spite of our good intentions, we may call or visit them less frequently.

And then it is too late. In a matter of seconds, with a swift stroke of cruel fate, simple, familiar communication is severed. Words still flow, but they are scrambled, incomprehensible, disconnected, clanging/banging/changing. Communication, of necessity, occurs at a different level, and somehow, we understand. What wouldn’t we give now to hear the familiar sayings, the easy chit-chat, even the complaints?

Like that young medic in a darkened church, we remember all those times we pretended to be asleep, and wonder, “I don’t know why I did that…”