Fear of the Future

>> Sunday, January 11, 2009

When Maren was first born, it seemed that anyone who wanted to offer well-meaning condolences wrapped in a brown paper package of hope would tell me about the person with T21 that he or she knew from the local grocery mart of discount store. In their own way, those people were trying to allay my fears of Maren's adulthood.

But ironically, her adulthood has never scared me much. I guess I've always had such a dysfunctional extended family that I realized with my genes, there are a whole lot of things worse than an intellectual disability. So -- here I will out myself and my relatives. Depression, Bipolar Disorder, Schizophrenia, Alcoholism, Drug Abuse: All are represented in my immediate extended family.

In fact, my closest brush with fame might be my mother's younger brother Albert. Uncle Albert was a brilliant and budding young scholar with a full-paid scholarship to FSU, and yet, by the late 70s, he was dressed up like Uncle Sam (top hat and all!) and riding a motorcycle cross-country and living anyplace he could find a warm bed. A horrific accident with a deer in Steamboat Springs, CO. and a few more drugs later, and he is known as Leslie Cochran who helps "Keeping Austin Wierd." He can be seen strutting downtown Austin in women's lingerie and high-heeled shoes. Yup. Leslie Cochran is my relative. Down syndrome? Not such a big deal compared to the rough life he leads; though perhaps not a fun either ;-).

So, why all this here, today -- now? I guess I realize that T21 has seemed minor to me because of my frame of reference. Maren has learning disabilities. Others have serious mental illnesses. And, still, Archie my dear six year old...

He wants to be Richard Grieco or Chris Cattan. And, yes, I'm serious. Archie styled his hair quite adeptly tonight and said, "I want to be like Richard Grieco. He's so cool." And there you have it.

Why worry about Maren's job when she grows up? Archie admires guys who wear leather pants and spray on sideburns in Night at the Roxbury. And it doesn't stop there. When we drove down Bourbon Street in NOLA, Archie wanted to go see the naked girls. He thinks beer will taste good. He even tells us he has a Little Captain in Him -- thanks to Capt. Morgan commercials. Ugh. He's going to be a stuntman, and he's already practicing! He has a great sense of humor and an amazing wit. And, yet, I know the teenage years will be rocky and I'll be terrified about getting him through high school, let alone college, without incident. He could hang with the best of Bama Frat Boys!

Somehow, when a parent gets a diagnosis, it's easy to dwell on the could have, should have, would have been, if the child was born a 46er. I find it more productive to look at all of the fears and worries I won't have. I will never worry about Maren becoming an addict. I will never fear her making a fatal mistake of drinking and driving. I will never stay up nights pacing the floor when I know she's out at a party. I won't be trying to explain to a judge why my "child" should be given a second chance after defrauding an elderly person, or taking part in a securities fraud case. Identity theft? Never going to perpetrate that crime either! I have never heard of a person with T21 taking his or her own life, let alone the life of another individual. In fact, I've never heard of any major crime committed by an adult with T21 (unless you are offended, as Dave Hinsburg of Chewing the Fat, was), by an unsolicited hug...bahhh!

And, of course, I hope I will never have those concerns with her brothers. In my hear of hearts, I believe Jonah will become a baseball front-office person, or perhaps an Economist. Archie might actually become a stuntman or rock star, but I'm guessing he'd be a great sales rep and corporate C.E.O. Having his amazing heart, he may even become a special education teacher. Wouldn't shock me in the least!

But, I do not have the same sense of certainty as I have with Maren. So, she will become a teacher's aide, a daycare assistant, a Gap Kids Salesperson, a dance teacher, or if she has her way, the driver of the Barbie Car. And, she'll have a good and fulfilling life, even if it isn't a high-paying, upwardly mobile, divorce-causing, stress-inducing, career that most of us lust after for our own typically developing children. Hell, I won't even be able to brag about her Ivy League degree and 100,000 in student loan debt. Maybe I'll get that satisfaction from my boys ;-).

She'll leave the world a better place because of her presence and leave no harm in her wake. And, in the meantime, I have the pleasure of soaking up the joy that is my daughter.

I have to laugh when people have said, "God doesn't give you anything you can't handle." Huh? have they seen Archie?

And, if they are right, apparently God knew how much laughter and love my heart could hold with Maren. The notion that she is a burden makes me giggle uncontrollably! I've seen my family tree :-) and all the apples that have fallen very, very far from it!


TwolittleN's 10:52 AM  

What a wonderful outlook you have for your children's future! You must be having so much fun with them! As a mom of a very young son with T21, I carry with me all of those fears of his future. Indeed, like many new moms, some of the very first questions that came into my head when I learned of his diagnosis was about his future. It is nice hear from a mom who can put things in prospective. Thanks for sharing!!

Dava 7:50 PM  

Isn't it amazing how so many people assume that your child with special needs must be the one that is the most challenging. Your children sound so much like mine. Bryn has an older brother and a younger brother. Bryn is the easiest and lets just say my youngest...well Archie would be his hero!

Kris 5:27 AM  

I love this post in so many ways! I also feel the need to inform people that my "typical" guy is the one that gives me a run for my money - ha! Thanks for sharing and I love the new look too!

luvmypeanut 7:21 AM  

For all of those people who "don't get it" should be forced to read this post!!!

Luv ya hon! And Archie is a hoot! Gonna sit back and watch that kid!

Sharon 4:37 PM  

Loved, loved, loved this post. Thank you!

Michelle 6:42 PM  

so well written and so true!

Betsy 5:06 PM  

*clapping hands* Bravo!!! So well said! How many people say that they just want their children to be "happy" but never stop to really think about what that means.

All of our children will greatly exceed our expectations in some ways, and fall short in others, just as we have done with our own parents.

The true joy is not the conclusion, but rather, the journey.

You're a very lucky girl, Maren!

TUC 5:51 PM  

Thanks for saying all this. I have been wanting to have this rant since my daughter was born.

"She'll leave the world a better place because of her presence and leave no harm in her wake. And, in the meantime, I have the pleasure of soaking up the joy that is my daughter." Amen, sister.

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