Wednesday, October 6, 2010

Welcome to the Club?

I don’t want to belong to a club that would have someone like me as a member
                                                                                    --Groucho Marx

As a parent of a disabled child, I am a member of a group on one wants to join. The club is not exclusive by any means. It absolutely does not discriminate based on race, religion, sex, age, sexual orientation, socio-economic status or any other classification that I failed to mention. Disabled children are born into every conceivable type of family, in big cities, small towns and every other part of the world.  Where in the world you happen live often dictates the child’s survival and quality of life, but the disability happens everywhere.

I remember when Maggie was just venturing out into the world. She was about four months old and spent the first three months in the ICU. We went to pick up Eddie from his end of kindergarten picnic. The mother of one of his classmates came over to admire the baby. Everyone in the school knew about Maggie and her saga. The woman, an immigrant from China, looked at Maggie and said in broken English, “You are lucky she was born here.” I knew immediately that she was right. In many places, systems are not set up to handle the Maggie’s of the world.  Doctors may lack the skills or the support to save the child. In many other countries and in many parts of the USA, Maggie might not have had a chance at life.  She got that chance here and I do feel lucky in that regard.

In reality, though things are better here than in many parts of the world, the US as a society, is not really set up for the Maggie’s of the world either. People think they are, which almost makes it worse.  The infrastructure needed to provide care for her and her peers does not really exist. Rather, there is a series of disconnected, overlapping services that does not have a central intelligence or hierarchy. It is a competition between various departments of the government to avoid providing service. Each points to another department to provide what a family needs. It is the family that has to find its way through a morass of governmental, non-profit and private services. It is the family that has to track everything down and make it all work for their child.

Emotionally overwrought? Buck up.  Need money? Get a job. Can’t work because you have to navigate for your child?  Welcome to Catch 22.

No wonder no one wants to join our club.

When I hear of a family having to join our club, I feel bad. That does not mean I hate my life, I am used to it; but I know how hard it is for the parents to deal with everything.  It seems lately new members are arriving every day. Hopefully some will have only a short stay and their child’s issues will resolve. That happens to a few lucky ones. Some are lifetime members. This club changes you. Once you are a member, even if only for a short time, you see things differently. You learn quickly to appreciate whatever gifts your child and everyone else’s child brings to the table.  

Current club members embrace and assist new members in any way we can, but we’re really not in the market for new members. Nonetheless, they keep coming. 


  1. Yep, I often say of our PWS community that it is the best club I wish I'd never had to join. Lucky for me that there were lots of current members ready to embrace a newbie. I do feel sometimes that I'm not pulling my weight in this department...there's always more to do to help the new members navigate those treacherous early days.

  2. Your blog helps others, Sally. Hoping Maggie World is widely read. Barbara


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