Sunday, March 9, 2008

Make me over, Ty

I applied to Extreme Makeover Home Edition last week.

It was very last minute. One of my sisters-in-law sent me an application that said they were looking for Virginia people. I kind of put it off and then finished it the day it was due.

We'll build a house, regardless, of course, but how cool would that be: to get a home built on TV. Here is the little story I wrote to show we are deserving. I wrote it with some help from my newspaper sister and some last minute editing and fact-checking from Mom. It is a little schmaltzy but not untrue at all, and it is from my heart.

When I was growing up in Falls Church, Va., I quickly got used to people saying: "Oh, you're Simone's grandson" or "Oh, I know your family."

Gram came to Virginia at 23 and made her home here. She married a man who built her a home in Falls Church , and she began to make the community her own.

She more than succeeded. I lived next to her for much of my life, and I never saw her turn away someone in need. Grandchildren, their friends, visiting students and many others took up residence in her back room when they needed a place to stay. One of my favorite stories about her "boarders" is about Mark. The police showed up at Gram's house to arrest Mark for something stupid he had done. Gram didn't hide him or anything like that; she just wanted to know if Mark could finish his dinner before the police took him off. To Gram's chagrin. Mark did not get to finish his hamburger pie.

When she died 16 months ago at 94, the number of people who gathered or wrote to say goodbye was incredible. Everyone, it seemed, had a story to tell about Gram's kindness and loving influence on them.

Even in death, Gram is a help to me. It used to drive me crazy that when she was alive, she used to say how alike we were in our abilities. Isn't it awful, she would say, that we have to rely on your mother to drive us anywhere. I could never point out to her that she was a 90-year-old woman who had lived a wonderful life and I am a thirty-something in a wheelchair with a ravaging genetic disease. Now, though, I can talk to someone who understands what I deal with.

And she is helping bring me back to the community I grew up in and giving me strength and comfort at the same time.

Gram loved everyone with a great heart, even my sister and me, the two youngest in our specific family, who probably got along the least well as young children and young teens. Then in college, we found out more about ourselves and about each other. Now we are the closest of all of the family in some ways.

We are about to become closer.

My brother T and I have a genetic condition called Freidriech's Ataxia. It's a progressive neuro-muscular condition that has landed us both in wheelchairs and affects very waking moment of our lives. For me, having a disability means having to struggle almost every second, whether it is to holding my head steady or swallowing water. T is married and lives with his wife in a fully accessible condo. I live in a condo that is kind of accessible about 30 minutes away from my parents, who do more than I can say to make my life flow as easily as possible. But it is far from easy. I take public transportation to my job, but it is not convenient or even safe sometimes so Mom or Dad drive out to drive me in some days and drive me home most days. Then there is the time I am alone. Every single thing I do requires many times the effort it would require a healthy person. I fall regularly and hurt myself. Alone.

Everything is about to get easier, or at least easier to deal with. My sister and her family plan to build a home on property we inherited from Gram, a home with an accessible apartment for me and a yard for my service dog My parents will be next door. I will again become "Simone's grandson," or maybe the torch has been passed and I will become known as "Joe D's uncle."

I know it won't solve all my problems, but it will be huge. I will have family and love seeping into me everywhere I turn. And I'll always have Gram.


Anonymous said...

xo Matt.


Anonymous said...

nice job

Anonymous said...


Anonymous said...

Awesome - great job.


Matt said...

Let's hope Ty feels the same way.

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