I was helping my six year old wiggle into gloves yesterday when it hit me: how will Ulysses keep his hands warm? I know we have a lot of figuring out to do, years of trial and error ahead of us. But he won’t ever be able to just buy a pair of gloves. I’m not even sure we can modify a pair of gloves. His anatomy isn’t so understandable as “missing fingers”; he doesn’t even have palms. He’s so little now, it’s not an issue. The few times he’s been out in the cold, I’ve simply pulled his long sleeve over his hand, tucked his arms into the sling, or a blanket. But when he’s older? What will we do? (that’s a rhetorical question. I’m not seeking advice. I’m putting this out there so you can imagine the impact his body will have on his life.)
When you have a new baby, there’s a peace in the looking forward. Oh, sure, being present in the Now is desirable, but could you do that if the future held such questions? Did you ever think how much of your peace, of your enjoyment of a new person in your life, comes from the assumption that your baby will do all the things other children do? No one expects little babies to do much. They sleep, they fuss, they smile (we melt), they squirm and arch their backs. At this point, he’s right in there, the limitations of his body have not yet thrown development off the curve. The occupational therapist believes he will learn to crawl. He will become an expert in his own body and find a way to move it. And that’s very encouraging. I can’t even think about it without getting choked up. (I’m not the choking up sort, but my stalwart emotions are no match for this boy.)
I’m conflicted about so many things. I think that Ulysses has older siblings is such a good thing. And not just any siblings. My daughter and my son, even with their seven year age gap, have such a true and sweet relationship, and it’s extending already to include the littlest one. They are helpful and tender and funny and dear as much as they are loyal and determined. This baby will not want for champions. They will protect him and support him, no doubt. But, the flip side to that coin is that my big kids are living, breathing, moving, scootering, bicycling, bed jumping, tree climbing, dancing, glove wearing examples of what my baby is not. Forget feeling like the world is full of able-bodied comparisons, I have every day reminders in my own FAMILY. How does a disabled little brother keep up with his older siblings? Will he be challenged to join in, or disheartened by his differences? (another rhetorical question.)
We have an unruly front yard. (stick with me here, I think I can tie this together.) Now, we live in the “downtown” area of a very small city, our 1958 house is one of a few “newer” mid-century infills surrounded by bungalows and victorians, and the neighborhood looks the part of a mixed use (with businesses and multi-family housing), inner-city area. All that to say, we’re not a part of a home owner’s association and there’s a great variety in homes and landscaping. But, even with the variety, our front yard stands out. We have raised garden beds and a burgeoning hedge of blueberries. We have an established herb garden and young fruit trees. My next door neighbor, on the other hand, has one of those ubiquitous northwest yards: manicured grass carefully edged at the sidewalk, tidily pruned rhododendrons, a smattering of bulbs popping up in the Spring. So if you look at our two front yards, her yard might appear “nicer”. But take a closer look. Our yard is full of birds. I sit in my enchanted chair in the morning and watch the herb garden, full of birds. Tiny yellow-bellied things (juncos, maybe?) hop weightlessly in the lemon balm. We could have chopped the herbs down in the fall, made the space neat and clean for winter, but we didn’t. And the tiny birds find tiny seeds and come back every morning for their breakfast. How many birds do you think visit my neighbor’s yard? What would compel them to stay? And in the summer, when the clover grows, we have bees, so many bees! I remind the children to wear shoes, but otherwise, we feel glad to be doing our little part to offset colony collapse disorder. And we always have something edible growing out there. Just this morning, my girl gathered dandelion leaves and pepper grass (you know, weeds!), to put into a nutritive veggie broth she was simmering, as we didn’t have any cultivated greens in the fridge.
And I was thinking this over today, as I approached our house after a walk around town. I was thinking how our yard looks a little neglected, perhaps, but how there is, in fact, more life out there, more diversity and interest, than in any “tidy” yard.
And then I naturally segued into thinking about Ulysses (because he’s the parenthetical aside to every thought I have now), and how he doesn’t look like other babies, how he will not grow to look like other children, or other men. He will never be a tidy yard.
Is it hubris to imply that he will be more, just by being born with less?
I guess I could take all these words I’m tripping over and boil them down into some thick and gunky “Never judge a book by its cover!” cliche, but that would miss the main point I’m getting at here: this world needs disability. Even as that belief came to me, I wanted to deny it. I did not want to have a disabled baby. I, like so many pregnant women, took an active role in trying to prevent disability. No one prays for a baby with limb differences and a heart defect. Similar defects in another baby might prompt an abortion. And, this isn’t me, judging. This is me, telling it straight. I have a baby who will be the recipient of pity and scorn, simply for existing. But he deserves to be here! He deserves to represent the spectrum of what people can do and be and achieve. Without that spectrum, without the brilliance of difference, there wouldn’t be the sweetest, tiny birds outside my window in January. Can you see that?
I admit that I haven’t yet reconciled the idea that disability is important with the actual nuts and bolts of how to be this baby’s mama. It’s one of those things that you want to agree with, in theory, from over there in the safe enclave of your able-bodied home. Yes, yes, of course, I want to believe in compassion and diversity and acceptance. Don’t you? But it’s theory vs. practice and learning how to do this while still mourning who he will never be, is not easy. But I have to do it. I have to do it because he’s here and if he’s here, I damn sure don’t want anybody saying he shouldn’t be. And if I believe he should be here, then I believe we all get to be here, because I sure as heck don’t want to live in a world where the spectrum is defined and expected. No person gets to define who or what or how. And I will keep saying these things to myself, even as I get stuck in grief about the gloves, as I lose sight of his sweetness in light of his anomalies. I will keep saying them until I know them by heart. I have a lot to learn.