A week or so ago, a well-meaning person sort of…chastised A and I for living in Baltimore, but not getting down to D.C. to explore all the free museums. After all, “Almost everything is free!” “You’re so close!” “There’s so much to see and do!” “You need to teach your kids about our nation’s heritage!”
She didn’t mean anything by it. Not really. She didn’t mean to be critical, at least, not in the way it felt. Eventually I stopped her though. I said, “We really would like to go and see and do all those things, but with our kids it can be a little difficult.”
WIth that, she pretty quickly got what I was meaning to say, and said, “Oh. Well right.” And the conversation sort of morphed into a “one day” tone. “If you can.”
The thing is, inside what I wanted to say was, “Please stop rubbing it in. I know. I know more than you can possibly understand how much we are missing. We WANT to go do these things. We are not lazy or remiss parents. We are not intentionally keeping our children from these rich cultural experiences. When I was younger, before I had kids, even after they were born, I have had an inborn desire to do exactly these things with my children. To go and see and do and discover. To be adventurous and explore. It pains me more than you can ever know that it hasn’t turned out that way. Please don’t criticize us that we don’t go do more of these things, that we haven’t explored our nation’s capital. It’s like salt in our wounds when you say that. We want to do these things, but so far, we can’t.”
I hesitate to write posts like this because I am acutely self-conscious of coming across as whiny or “woe-is-me”-y. I guess, part of the reason I don’t write more, period, is because I am stuck on just what to write. We have come such a long way from the days when G was just a baby and the whole wide world was stretched out before us. We have come a long way since Down syndrome was the only thing we were working with. We have come a long way since thinking that inclusion was the only way to go. So much is different from how I thought it was going to be. I worry about sounding too negative and critical, both of my daughter, and of myself.
I find myself, though, wishing there was someone else out there writing about this side of things sometimes. I know I would feel less alone—and do, when I happen upon some writings by people in boats shaped like ours (usually, I am finding, those boats are in the autism waters more than the DS ones).
I am determined, when I do write, as few and far between though the posts may be, to be honest. Even if it makes me look whiny or like a terrible parent. I am more than the sum of my posts, after all, and the people who don’t get that…well. So be it.
The truth is, sometimes we venture out and we meet with great success. I can’t say it’s ever how it probably is for a family with two typical children aged 7 and 5, but we have success. We have no meltdowns (or manageable ones), we have two children who more or less go with the flow, who listen, and have fun, we have smiles and laughs.
More often than not, however, it takes a lot out of us. Going out in the neighborhood itself still proves challenging much of the time, running errands with my girl is still a big feat, we can’t over-schedule. The truth is, if we get through one grocery trip (for ten items or less) without having to abandon ship halfway through, that is considered a giant success.
We know we need to try. And we do. Admittedly, there is a fair amount of PTSD with this stuff though. Sometimes, we have to push ourselves to try, but there are successes often enough—or near-successes which can feel just as hopeful—that we know that it can pay off. Sometimes though, it’s hard to muster the will to try. It can all be so very hard. So tiring. And disappointing. To drive so far to some place, or pay so much, and have G fall apart, or not be able to get out of her terrible mood long enough to enjoy it. The letdown—now that R is older, too, HIS letdown can be downright heartbreaking to witness at times. But I don’t want our kids to live these entirely sheltered and SMALL lives. I WANT them, I want US to get out and see and do things!
I don’t know if it’s brilliant coping or that we’re stuck in a rut, but so often we divide and conquer. That can also break my heart. Typically—though we try to change it up when possible—the lines fall along the me and R and A and G camps. In part because G is getting big and I can’t manage her easily when she has an issue these days, and in part simply because she prefers her father, and, frankly, she chooses him.
G can’t handle church right now, so on Sundays, for example, R and I go to church and A takes G to her swim lessons. It’s, not to put too fine a point on it, a bummer. I was enjoying going to church with my husband and having the kids down in religious education with their peers, but G can’t handle it right now and there is not appropriate programming for her, so we do what we have to do to make it work. Going to church is more important to me than A, so it works out that I take R.
Depending on my state of mind, sometimes I can frame it more positively. Sometimes it’s “just” a bummer. Sometimes, though, it feels downright awful. Sometimes I think we’re awesome that we can make it work and go with the flow. Sometimes I get angry that there are not more accommodations in the world.
I think, for awhile now, I have been in a place of grief about G’s struggles to *be* in the world. And by extension, our whole family’s ability to *be* in this world. I know I have to work through it, mold it more, but for now I have to just admit that I am in this place. Grief and it’s counterpart, guilt. It’s hard for me to hear about other kids—not even typical kids, but, for instance other kids with “just” Down syndrome, or “just” autism and not feel a little depressed. So many of the children I know who have “grown up” with G from afar are doing things like cheering competitions, modeling, playing sports with their typical peers, taking lessons, and learning new things, being successful in their general ed programs. Meanwhile, I still can’t imagine G doing most of these things. Especially not if they are organized or structured in any way. (And yes, though a few posts down I go on and on about how well schools is going, I still and will have to catch you up on the latest. All of that optimism was turned on its ear about a week after I posted that.)
Anyhow, I see other people posting pictures of their kids at, say, the Statue of Liberty, and I almost shudder at the thought of trying to get G TO a place like that, let alone enjoying it.
I guess I have to admit, I am envious. It’s not a cute quality, I know that. I know I have to get over it.
There is SO much our G is capable of. There is so much she WILL and DOES do. But sometimes it’s just difficult. It can be so freaking hard.
Sometimes I feel like a prisoner. Stuck at home. Sometimes I feel so bad for R who is stuck with a limited scope of the world because his sister struggles so.
I know we have to push G. I know we have to split up and let R have experiences. I know we have to make sacrifices and leaps.
It’s not easy. And while I don’t expect that everything SHOULD be easy. And I certainly don’t think I am OWED anything. And I know that even though it can feel like it sometimes, I’m not actually alone. Sometimes it's just hard not to...I guess wallow in it a little.
Sometimes I just have to say it out loud. Sometimes it sucks. Sometimes I am very sad. I refuse to qualify the depth of my love for my girl, because it has nothing to do with that. (But obviously, I fear that won’t be understood, by writing that, eh?) Sometimes it is so many things boiling away in my brain at once.
Life is complicated. And hard.
Wah wah wah. I know.