There was a documentary on HBO called "Monica and David". Monica and David are two individuals with Down syndrome who fall in love and get married. I was expecting a really inspirational 70 minutes. The reality, for me, was quite different.
I loved that they found each other and their love was so pure. That part was really touching. But the reality of these two 30 somethings is not the reality I envision for my buddy. They live with her parents. Neither have a job. They cannot cook for themselves. They had trouble just stuffing envelopes.
I'm sure 30 something years ago there was not the support and knowledge that we have now. I know that the Birth to 3 system has done wonders in giving my buddy a jump start. I am also aware that there will be a limit to what he can accomplish.
I joke about wanting him to live with me forever and cruise around in the VW Cabrio I will have someday with the top down. But it's a joke. I never thought that he might really have to live with me forever.
There is one scene "Monica and David" that depressed me the most. They live in Florida in a beautiful apartment that has an ocean view. They could go down to the lobby and walk a block or two and sit on the beach. David talks about how he just wants to sit down there and watch the ocean. Monica tells him that they aren't allowed to.
I don't want my buddy to spend every day yearning for something out of his reach. I hope I am able to find that fine line of knowing his true limitations but not holding him back from his true potential.
I had similar mixed feelings. I watched with my mom and at one point she looked down at Julia and said, "Don't worry, Grandma will teach you to cook!" I don't need Julia to be a gormet chef, but she will pour her own cereal! The part that bothered me the most was when David's mom said she didn't want him to get a job where he would be "out in society." I guess our experience is very different than theirs. I couldn't imagain thinking that way. Still thought they were a beautiful loving couple though!
ReplyDeleteOur perception of what reality is depends on what our experiences were. I was born in Laos, in a very poor condition. In 1975, I lived in a Thai refugee camp where my father was killed. My family was sponsored to the United States and although we had so many limitations, we also had opportunities. When my son was born and we were told of his limitations because of Trisomy 21...the word "limitations" did not soak into my heart & mind. All that I knew was that we are fighters and if given the opportunities, we would shine. In our traditions & customs, children and parents tend to live together...I always envision myself & my husband living with our children or our children living with us. As parents, we want to protect our children even if they have no special needs! I hope to teach my children to be self-sufficient but to also know that it's okay to rely on one another.
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