November 5, 2009

The As and the Ds

John is in Chicago while we wait here for the phone call that will beckon us to join our family. We will mourn, as well as celebrate, a great man's life. As we prepare to head to IL, to share our sorrow with our friends and family, I reminisce about the past.

I believe that a lot of Alex’s successes are attributed to a few things. Certainly good health and excellent educators, in a well funded and resourced school district, were very important. However, I cannot diminish the importance of a supportive family and loyal friends. These were the people in our lives who did not see that Alex has down syndrome, to our friends and family Alex was just another kid. This acceptance helped us as a family as we charted our new lives as parents of a child with special needs. This dose of reality prepared us for the rest of the world.

There are two families in particular, who will always hold a place in our hearts. These families lived on the same street as we did in our suburban Midwest community. We had our babies together, watched each other kids grow and became a family. I call them the As and the Ds for the first initials in their last names. It seemed easier that way.

We stay in touch with the As and the Ds, but we will never recreate the feeling of knowing they were always there for us. Like the time we banded together against the nasty police-calling neighbors, or the Halloweens when we would all trick or treat – with many a beer treat for the adults. We spent holidays together, birthdays together and lots of summer barbeques. They too, are sharing our sorrow and waiting for our visit.

The As have four kids and the Ds have three. I have known most of these children since birth. I felt like they were my own kids and I have very strong bonds with them. I know that they have probably lost that connection we had, but I am okay with that – it is part of growing up and moving on. I miss watching them grow into teenagers.

These seven kids accepted Alex like a sister. I do not know what happened behind closed doors, and what our friends told their children – but I am not sure these kids knew that Alex has down syndrome. They played and fought like regular kids, and became siblings. As Alex got older and her delays became more apparent to these kids – there was not any complaints or impatience, just acceptance. “Alex is Alex” is what we heard.

One of these kids was, and in Alex's life, still is Alex's best friend. Sarah is three years younger than Alex, they bonded almost immediately. I still remember the day Sarah’s Mom called me from the hospital with the news that her second child was a girl. Sarah joined an older brother and now has a younger brother and sister. All these children are special, but Sarah is the most special person in the world to Alex. Another day soon I will talk about Sarah, she deserves an entry of her own.

We were very fortunate, and I hope other families with children with down syndrome share our fortune. We have very close friends who celebrated Alex's birth with us, who shared her accomplishments and loved her for who she was, not what she has. It has made a world of difference.

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