This is number 3 in a multi part post...in answer to a friend's question of what "non-label parents" should know...(part 1, part 2)
What you should know about my child?
Down Syndrome is not that bad.
Yes, I totally hear a gasp from some of you.
Is my life perfect? Um, that would be a big fat no. But to be fair, is anyone's? I've heard a couple of people lately talking about disabilities being a "natural part of life". This is more true than I can even begin to say. Can I do math like my sister-in-law? Again, big fat no. Do I have the "ability" to do exceedingly advanced math? No. My brain cannot deal with it. My dyslexia finishes that off with a cherry on top. That is just the beginning of my DIS-abilites. Does that compromise my happiness? Only if I am taking a Calculus 2 class. I will never be a college math professor. Should I mourn this? If that was my childhood dream, perhaps...but it should not preclude my loving literature, mountain climbing, or writing...and thriving in those abilities.
My daughter may never be working for NASA, or be a brain surgeon, or have a career as a speech coach. But she can do SO many other things that will bring her joy and happiness. She has a future. As much as anyone else.
Elise's best friend, Megan, may or may not reach adulthood. Her disability is BRUTAL. It slowly shuts down system after system in the body. Her body is failing her on a cellular level. Mitochondrial Disease is worse than I can even express. It is aggressive. It cannot be reversed. It cannot be slowed. You can only mediate what you can for as long as you can. Elise has nothing but hope and opportunities. Megan does not. Megan and her family deserve sympathy and as many prayers and as much help as you can offer...
Do you see what I am saying? Elise's life may not be as limitless as we pretend everyone else's is, but it has so very many opportunities. (And, frankly, my life is not as limitless as parents tell their children their lives are either!)
Down Syndrome slows things a bit, just enough to appreciate and enjoy every step. It doesn't take anything important from anyone's life. It changes expectations, sure...but I blame society for the depression and sadness many parents experience. (Even myself!) Our society tells us to expect perfection, that we DESERVE perfection. Even though perfection doesn't exist.
So, please do not pity us. Treat us like everyone else. Treat my daughter like every other child. Pity without need is a poison...something that hurts and angers us on a very deep level....feel free to sympathize and/or empathize with us on bad days, but do not think that we do not have a very happy life. Because we do. Honest.