the reality of traveling to Holland

[gratefully excerpted with permission from an e-mail to my dear friend Isabelle.]

Oh, no. You haven't said anything wrong. Actually, no one has said anything wrong. Everyone has said everything right - we have received so many comments on how E clearly chose the right parents for himself and if there is anyone in the world who can be stellar parents to a boy and insha'Allah man with special needs, we are the ones. Which makes me cry with gratitude just remembering all those e-mails we've gotten, from my sister's mother-in-law to friends I barely know on a parenting board to friends of mine who work day in and day out with adults with disabilities in a residential village.

Here's my deal, and luckily I feel I can say this to you and you won't think I'm a monster. You know, the Holland story is right. My brain can understand that this is exactly how it feels and what it looks like, except that it's not a vacation you're planning for, it's a permanent, full-household move. You're expecting one thing, you end up with another thing that is totally different and you have to adjust your sights damn quick. And I'm just having a hard time resetting my sights. I look at my son sometimes (not all the time) and all I can see is the Down Syndrome. I see a lifetime of him being teased and picked on by people who don't know him, I see a face that people are going to judge because they can look at him and see his disability. I see a child getting stuffed into a special ed box in our mf'ing public school system (have I mentioned how I hate the phrase 'early intervention'?). I see a child who might not be able to talk or make himself understood. I see a child that may never leave our house and live on his own. Sometimes I only see the negative stuff. I KNOW in my brain that there are so many positives - not just to him as an individual but even positives to having DS... how many people now have told me how much their children or their friends' children or their relatives' children have enriched their lives, how full of simple joy and joie de vivre they can be, loving, more caring, more sweet, less complicated. I also know in my brain that there is no way - NO WAY - to know at this point how mild, moderate or significant his disability may be. Hell, for all I know, he may go to college, and at the very least, all of my sadness that he'll never be able to attend a Waldorf school unless we move to Pennsylvania will be in vain. But when I think about the prospect of him NOT going to college, but rather being someone who wipes tables at a fast food restaurant or removes the black scuff marks in the Target lobby, it makes me sad. Damn sad. And what's worse is that I think I feel sad for myself and not for him. No, not sad for myself, it's a stupid case of self-pity. I feel sorry for myself that I have a son with a disability. There, it's said. I just want to have 2 ordinary children like everyone else I know. I see people who have 3, 4, 7 of them and ask myself and the universe over and over again, "Why can't I just have two healthy, normally-abled children? Why me? why ME?" and the answer comes down and it's always the same: because E picked us and needs us to be his parents. And some days I can cope with that and some days I just want to shout fuck you, why didn't I get a say in it? What if I didn't want to be picked? - and the answer to that is essentially tough shit, lady, here are your cards, now grow up. The last thing your kid needs to see is you looking at him and crying because you're feeling bad for yourself. That's pretty low.

And just lately my mind thought "why didn't I just cut my losses and stick with one child?" which makes the loving mom part of myself (the part that has been really quiet lately somehow, especially compared to the over-thinking brain) just weep in agony, because I can't believe that my brain could think such a horrible thing about MY CHILD.

Strangely enough, the best therapy for me is to sit and hold E. Right now, this is really all I should be doing - holding him, caring for him and not wasting one moment's thought about the future, which will be there soon enough. It is when he is right there, looking at me with his lovely blue eyes that I can see the blue eyes and not the almond-shaped eyelids, the sweet little hands and not the simian crease across the palm (I hate the phrase 'simian crease' almost as much as 'early intervention') and his cute little half-smile, which he inherited from me, dammit (since everything else he somehow got from Jo, go figure that one out), and can be hopeful for our relationship as mother and son instead of caregiver/advocate and disabled, that at some point I will have come to terms with who my son is and will be and do not feel a shred of guilt or anxiety or embarrassment or concern for what others might think when they see him, but rather simply enjoy him for who he is as a human being, my little human being, whom my body created just the way he is.