I have never really been very afraid of the future. I'm not now, either, but suddenly it feels a little...near. I have been thinking about Ciarra being 11, and what the future might be for her that is different than what I have expected it to be. I wish we had a crystal ball to know what to expect. But we don't. I wish we could just allow time to open up like a flower, exposing every day a little more of whats to come. But we have so much to DO, so much to plan. so many concerns, worries, so much OPENNESS in the future. Parenting a child with special needs has not been the hardest thing I have ever done. It certainly isn't the easiest, either. But it truly requires more thought, love, and emotion (and planning!) than anything I have ever done before.
I met with Ciarra's teachers yesterday, a sort of gut check for me, is this working? is this the best thing? What can I do better, what have I missed? As we walk this tightrope of Inclusion and Special education, sometimes it feels like I am just about to fall off into nothingness and fly naked into darkness. I feel exposed, not in control, and sometimes, frankly, afraid. There is in every step a sense that I just might be making the wrong decision, ruining her chances for a good future, destroying something precious and vital of her childhood. I am, by nature, a worrier. What happens to her if I get this wrong?
For anyone still reading, some background. Ciarra is currently in 5th grade. She is funny, witty, stubborn, determined, and incredibly incredibly special in ways that have absolutely nothing to do with having Down syndrome. She is world wise and innocently naive all in one. She is brilliant, and yet has gaps in her ability that still today astound me. She loves to read, she loves words, people, animals, her family, and a very few people outside of our family. She is easily motivated, usually. And then all at once she is stubborn and taciturn, demanding and...well...hormonal. She makes me laugh and she makes me cry, sometimes all in the space of a minute.
I fear for her future, not because of anything in her, but because every once in awhile some idiot will remind me that the world is not a gentle loving place for the most gentle, loving people. Sometimes, it even sucks. I watched an episode of My Super Sweet 16 yesterday, the rich girl was handing out birthday invitations, and other kids stood there, waiting to be deemed "good enough" or "not". And I knew, in this world, Ciarra would never be one of the lucky ones who got handed an invitation by the shallow rich girl throwing lavish parties. Of course, I know I wouldn't want that for her, but still...
Preteens with Down syndrome are a lot like typical kids. They want certain clothes, listen to the "cool" music (with a little bit of barney and doodlebops on the ipod for good measure) and they crave friendships. Ciarra is lucky to have a few very good friends. And one friend that we had had to distance her from a year ago has reached back out, with new rules and a new awareness and some maturity, it seems to be going well. But the girl who always made Ciarra a part of things at school moved away over the summer. Her absence has had an awful effect, without her there to encourage Ciarra to join in, be a part of things, without her friendship, Ciarra is choosing to sit away from that gang of girls. Without the buffer Jenna gave her, she seems a little bit lost. Besides, the other girls are talking about things she isn't into yet, that emotional maturity is just not there. She knows they talk about boys and makeup and parties. And she still wants to talk about puppies and kittens and Hannah Montana.
I feel like, in some weird way, I am letting people down by telling this story, like somehow because so many things have been relatively easy for Ciarra that this should be, too. But it isn't. Not always. She is SO blessed to have some really good friends at school and at home. But it is changing now, the kids are maybe leaving her behind a little bit. (I can almost hear "I told ya so" from the chorus of haters that almost will our kids to suffer, the people who want to see DS take the same toll on my kid it took on the ones they chose not to deliver at all.) And while Ciarra's life is changing, it certainly is not a bad life, or an unhappy one. But the realities of being a preteen with a significant disability in a world that only tolerates perfect are there.
I have to wonder, who really has the disability here? Ciarra doesn't judge, she doesn't hate, she is rarely angry. But what she is is different. Her world is so full, and she has so much. But as she grows, as she begins to make her way in a world less inclined to be accepting and tolerant, without me there to guide her, she gets hurt. ALL kids do, she is certainly not the only 5th grader to not get the coveted Birthday party invitation. Its just that she feels it so keenly, and I cant help but think it is because of the DS that she isn't being invited, I cant make that better, or promise she will outgrow it like I could if it was knobby knees or zits. Ds is a part of her, a part I treasure, but with all of its beauty comes a certain sadness, because the world is simply not as accepting of people who are different. And I have to wonder if this isn't the beginning of the end for this emotionally stable, healthy, confident little girl. Will she stay strong and continue to believe in herself? will she think Ds is no big deal, or will she wish with all of her heart to change it? Down syndrome is not something I would ever change for me. But for her, if she wanted to change it, would I ever have the right to stand in her way?
I have been asked many times since she was born, would you change it if you could? No, I wouldn't. But I will have to fight like hell to make her not wish she could, and make her comfortable with who she is, knowing that who she is is beautiful, funny, smart, gregarious...and sitting home on Saturday while most of her peers attend a Birthday party she wishes she too could attend. My other kids survived it, and I was sad for them, too. But with Ciarra, there is always the "might have beens" and sometimes those hurt even worse.
