As the parent of a disabled child, I am a member of a club no one wants to join. People find themselves in this club generally because of a twist of fate that they did not want or expect and really do not know how to handle. We enter what we think is a dark world, bleary eyed and scared. We learn from each other and eventually figure out how to live our life with the extra responsibility of dealing with the disability. Or, in many cases, including mine, we figure out how to change our lives to accommodate out child’s needs. We learn that this world is different from the one we lived in before. And that a lot of it is much harder. Then we learn a little secret. There are parts of it that are much much better. One of those good parts is the people you meet.
Before Maggie was born, I was a successful attorney working full time and, with my husband raising my two little boys. Life was busy, but great. When Maggie was born, I suddenly found myself in a multi-faceted world of nurses, doctors and therapists. It was as though this world was parallel to the one I had been living in. There are hundreds of dedicated individuals whose jobs are to give my daughter and other children the best possible chance at life. And they are very good at it. Each of these groups, doctors, nurses, therapists, teachers, bus drivers, teachers’ aides, the staff in each doctor’s office, the hospital technicians and everybody else has my complete respect and gratitude. Each group will be recognized here at some point.
But today it is about the other parents of disabled kids.
Every baby presents challenges to new and inexperienced mothers. When you have a typical baby, there are people, and especially women, you can turn to for support, guidance and help. There is a natural support system, your mother, sister, or neighbor, anyone who has had a child before. When you have a disabled child, those natural supports just do not work the same way. Those people can still give you emotional support, but unless they have dealt with the feeding tubes and oxygen tanks, there are things they cannot help you with and you need to find someone who has done it. The question of when to call the doctor takes on a completely different import with a medically fragile child. Finding other parents who had “been there, done that” was life saving for me. And probably for Maggie too.
When I slowly emerged into this new world, Maggie was about six months old. Those first few months were bleak. Maggie didn’t leave the hospital for three months and when she finally did, her care was so overwhelming that I did not see the light of day. I still had the boys to deal with, but it was immediately clear that the career was on hold. Therapists started coming to the house and encouraged me to connect with other parents. When I finally did, I met a wonderful bunch of people who helped me through many a crisis.
Many of my closest friends today are the parents I met when Maggie was a baby. We have been through the mill together. Some of them I don’t see very often because over the years life pulls us in different directions. Some have lost their children, which is another sad reality of this world. Nevertheless, the bond is there, no matter the circumstances.
Today I had the opportunity to have a brief visit with one of those moms. I have not seen her in probably 8 years, and we just reconnected through facebook. We were supposed to have a quick cup of tea before Maggie’s appointment, but we spent our short time together traipsing back to the van to retrieve the suction machine that had dropped off the back of Maggie’s wheelchair in transit. She didn’t mind.
The years melted away. I could answer her questions about caring for Maggie with complete honesty. I didn’t have to sugarcoat anything. She understood. So many years, and so many things have happened to both of us but there we were, right back where we started.
I am grateful to her and to the other moms and dads who helped me get to this place with Maggie. I could not have done it without them.
In addition, I am looking forward to having that cup of tea.