Archive for March 2011

The First Foray

March 31, 2011

One wife. Two kids. Two dogs. How’d we get here?

We just started this journey. It was yesterday. A wonderfully sunny autumn in Seattle. Surrounded by friends and family from around the country. To this day we both still contend it was the best wedding and reception we’ve ever attended, thanks to those friends and family members.

We just started this journey. It was yesterday. Mark McGwire and Sammy Sosa were leading a blissfully ignorant nation on a late summer chase for the single-season home run record in baseball. It was late August. Sweltering summer days, backyard neighborhood barbecues at night. A boy was born, and needed a home. A place to be safe, a place to be loved, to grow, to succeed and be challenged. We opted in. No reservations. One look at his face, the first time I held him, after watching my wife rock him to sleep in the pediatric ICU. Whatever it takes.

We just started this journey. It was yesterday. Another new year had begun. A cold Colorado winter. A girl was born, and needed a home. A safe place. A nurturing place. A place of understanding, because no one could tell what challenges she faced. How could it not be us? We can do this. She is beautiful. One look in her eyes, one minute of holding this beautiful baby girl. Whatever it takes.

It’s today. I just looked in the mirror. We’ve been married 20 years. The boy is 12. The girl is 11. We still think our wedding was a pretty cool party (how can you have a cathedral, a bagpiper and smoked salmon – and NOT have a great party?).

The kids have taught us a ton along the way. We know more than we ever thought we wanted to know about Trisomy 21 (Down syndrome), Infantile Spasms, VSD’s, ASD’s, PT, OT, ST, MRSA, SID, and the autism spectrum. We’ve learned from doctors, speakers and writers from Boston Women & Children, Johns Hopkins, Children’s Denver, Children’s Seattle, and now, hopefully, UCLA.

But the best teachers? Other parents of kids with special needs. Other parents who see their kids and ours as kids first, labels later. It was a parent of a young man with DS who said, “You can do this.” It was a parent of a kid with Fragile X that said, “Come with us, we’ll teach you.” It was a parent of a kid with autism that said, “You’re one of us, teach with us.”

I’ve avoided writing for the better part of 12 years. Because I’m scared. Of being wrong. Of finding out I’ve let my wife and kids down. Parenting kids with special needs is hard. Frequent periods of little sleep. Periods of insane high stress. Few peer relationships. Fewer deep connections with other dads.

It came to me the other day. I’m scared that someone will shake their head and say. “You know, it didn’t have to be that tough. Here is the one thing you failed to catch. Here is the single point of entry – that one phone call you NEED(ED) to make – that helps everything fall in line. For physicians that understand, planning the most effective education, locating and evaluating the most productive therapies (with easy evaluations regarding whether your kid needs 2 or 6 or 10 a week), planning their futures, etc., etc., etc.”

In the light of day, I know there isn’t “one thing.” Rationally, I know there is no easy way. Deep down, I believe we truly are good parents.I know we’ve done the best we can. So we keep charging ahead, evaluating the setbacks, celebrating the victories.

I love people who believe they have all the answers. I, however, am not one of them.