The Switzerland Barbies (Caroline, Mary Ella, Maren, and Alli)

>> Sunday, April 30, 2006


We went to see the Wizard

Our local newspaper had a story about a teen actor with trisomy 21, Ian Terry, on the front page. Ian had two small roles in the Tuscaloosa Children's Theatre production of the Wizard of Oz.

We had planned on taking our 3 kids to see the play anyway -- we love TCT productions, but this made the performance extra-21-special for us. When Ian, and another chromosomally enhanced actor, Carly Lay, walked on stage as Munchkins and Ozians, I started to cry.

I wasn't crying out of sadness, but utter joy. See, I often think the biggest lie we perpetrate in our society is that we just want "happy, healthy children." Deep down I think each of us really wants a superstar -- Dorothy, the Tin Man, even the Witch. We want the child who will steal the show and make other parents jealous. "Oh, I wish Janie could sing like that -- Did you see how well the Tin Man danced? -- One day Elsie will be the marquis actor, I'm sure."

Well, having Maren in my life has brought untold blessings, and sitting in the Bama theatre, I realized one of the most important. What do I want for all my children? To be a star? Sure, maybe somewhere I'll always harbor that dream that seems part of the quintessential American experience. But more importantly, I want my children to fit seemlessly into society. I want them to be comfortable being part of the world -- and to be able to walk through this world with their heads held high, knowing that not everyone can be a star, but that there really is no OZ without the Lullabye League.

I want them to have friends who see that it doesn't take a star to be special, but that life is about heart, soul, and friendship. And sometimes, friends bound together in song are more powerful than soloists singing to their own tune.

To Carly and Ian, thank you for showing us that every star needs a chorus, and that every choir member is special to someone! I adore you both :-). And, when Maren, Jonah, and Archie are ready to perform, may they hold your hands and make the inclusion Over the Rainbow a reality in every town right here in North America.


Jimmy Buffett's Lyrics and a sneak peek into the future

>> Sunday, April 23, 2006

Jimmy Buffett's song that gave rise to Maren's nickname has a few lines that really rang true to my heart this week,

"One day she’s gonna learn how to fly
That I won’t deny
I see a little more of me everyday........
Little miss magic, what you gonna be?
Little miss magic, what you gonna be?
Little miss magic, just can’t wait to see

I have to admit, I have very few real fears about Maren growing up. I know some people stress about having a child with special needs who might need "more" than their typically developing siblings, or who might have social problems more than other children. For the most part I'm an optimistic pragmatist: All kids have needs. All kids have problems. All kids are worth every drop of love and every breath of life.

But, my real hope for Maren is that she has true friendships -- though in reality, I know I have only developed them myself since my mid-twenties ;-). Anyway, our community has a Catholic school that includes children with T21. On several occassions, I've witnessed jr. high school students and elemetary students interact with the kids with an extra 21st, and I've been delighted.

The kids are their "friends" for real -- not just buddies who are assigned to them, or friends out of pity -- even "Christian" obligation. Just friends. One friend of ours, whose daughter is 12 now, reassures me that I'm not wrong. Her daughter is on the dance team, and is a real member and fully included in sleep overs, boy talk (ugh!), and prank plotting.

Well, this week when I picked Maren up, I saw a young girl who is the daughter of a teacher's aide at Holy Spirit. Allison is 14, a swimmer, on student gov't, and quite cute! She looked at Maren and asked, "Does she have Down syndrome?"

I said "yes, she does....." and waited to hear the reason she asked... with a sinking feeling my utopia would be lost. "Oh, I thought so," she said. "So does one of my boyfriends, JonMichael. I keep waiting for him to ask me to our 7th grade dance and if he doesn't do it soon, I'm going to have to go with one of my other boyfriends."

I about cried right there. She knows JM has T21, but for her, it really is just another characteristic, like blonde hair or brown eyes!! If Maren can have this kind of true friendship and comraderie of peers through 7th grade, I'll pay my tuition in one lump sum today!

Anyway, I know many of us struggle with what-ifs, but know that in some place, inclusion can and does work! Here, I think, it works because all the parents are very involved in a small tight-knit community, and the majority of kids stay together from preschool through high school. And, regardless of what happens after 7th grade, clearly a respect and love has developed among the kids here that shows me it can happen anywhere with the right attitudes of parents and school members who stress the uniqueness and specialness of all children!

And, as I wonder if JM will ask Allison to the dance, I also know that my other two children, Jonah and Archie, will have great friends and romantic interests, too. Um, Allison is seven years older than Jonah -- if she likes younger men, she'd make a darned great daughter-in-law!

So, Maren, what are you gonna be? I'm hoping a beauty in a 7th grade prom dress ;-).


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