First, let me just say that traveling with small children is a massive pain in the ass. Traveling when one of those children has just started the Ketogenic Diet, even more so. I love my small children more than anything in the world. I would die for them. But I would be a big fat liar if I said that getting on an airplane with them and all their stuff was anything but a massive pain in the ass. There. I've said it.
We had two reasons for going: First, to mingle the ashes of my husband's grandmother (who passed away in October) with those of his grandfather, and then find a beautiful place to scatter them. Second, for our son to play in snow - something he did when he was about a year old but has no memory of. I'll end the suspense: We accomplished neither of these goals. The tremendous mounds of snow that had enveloped the city only a week earlier had been washed away by freezing rain by the time we got there, and our attempts to scatter the ashes ended in a pathetic little scene in what had quickly become arctic winds and more of that freezing rain, with my husband and his brother struggling heroically but in vain to figure out how to open the containers that held the ashes.
Of course Portland is beautiful and full of hipsters and yummy food, and we got to spend some time with Guy's mom and stepdad which is always fun - partly because there's always some fascinating detail that has been left out from our incomplete knowledge of their various histories. This time it was about how his stepfather had snuck out of the refugee camp in England to go to some kind of underground club for Checkoslovokian refugees in London. He was caught, but because the officer from Scotland Yard was so impressed with his initiative, he didn't face any charges.
What made the whole trip more than worthwhile though was getting to spend some time with Corrina. Corrina is a teenaged girl who has the same chromosomal duplication that our daughter has - Dup15Q (or, in their particular case, IDIC15). When you have a child with developmental disabilities, you do a lot of thinking about what you want for them, what basic skills you most want them to have, what their goals in their therapies should be. For us, because language is our daughter's greatest deficit and because it is so critical for getting around in the world, our goals have mainly been focused on developing her ability to speak and communicate.
Corrina doesn't have any spoken words. She probably never will. She still needs some help eating and doing some of the other things we would like our daughter to be able to do when she is older. But none of that describes what it is like to be around her. She is one of the most vivacious, happy, and social people I have ever met. She has a smile that seems like it's going to burst out of her and take everyone else with it. She is excited - no, thrilled - to spend time with her friends from school, and when she's at home she looks at photo books with pictures of them. While we were at her house, she called me over to her with hand gestures, and with great excitement and putting her hand on my shoulder, showed me a picture of an elephant in one of her photo books. She is more socially engaged than I ever was as a teenager.
Corrina does communicate. Through pictures, iPad apps and a card with the alphabet on it that she uses to spell out words, she is able to tell the people around her what she wants, needs, observes and cares about. But what I realize being around her is that she has some of the most important things a person can have: People around her who love her; an active social life with friends she loves; the social skills and confidence to interact with the people around her; and ways to contribute to the people in her life. (Earlier, her mom had posted that one of Corrina's fellow students has been inspired by Corrina to pursue a career in working with people with special needs.) Probably, this is old news and very obvious to people who have been special-needs parents longer than I have, but it is a revelation to me: Corrina has in her life things that a great many "typical" people - people with no serious disabilities - never have.
So I came away from our visit with a new perspective on my own daughter's therapies and education. I'm not sure what it will mean in practice - it may not change the nature of the goals we put down when we meet with her teachers and therapists, or it may - but my focus has changed. Yes, I still want my daughter to learn to speak, if she can. But it's not the most important goal. My most important goal for her - and it always has been, but somehow now it seems more tangible - is that she lead a full and happy life, that she is able to pursue her own passions - however simple or complex they may be - and that she is surrounded by people who love her and who she enjoys. I want her to have what Corrina has.