it’s like this

smokey orchard

Sooner or later, anyone with a special needs child is going to hear or see that short essay called Welcome to Holland. I’m not going to share it here, you can google it and find it easily enough. I suggest you read it, if you haven’t already, before you continue reading this entry.

I am certain that the original writer of the essay intended to create a few paragraphs of encouragement, a little validation that Yes, this is different, but Yes, this can be good, even great. And I appreciate that. I recognize the positive intent, of both the writer and fans of the essay, even if I think it’s all wrong.

Here’s the thing. Having a baby with surprising and severe differences is not like planning a vacation to one place and ending up in another. Because, people? I still live with all of you. I see you and your fully-limbed babies. I see you looking at my limb-different one. I don’t get to remain in a bubble of differences.

When Ulysses was very new, within his first week, I remember wishing desperately that I could spirit my whole family away to a remote location. I wanted to remove ourselves from everyone and everything and just love my baby so much nothing else would matter. I wanted to protect that tiny boy from ever being sedated and scalpeled. I wanted to be where I could keep him safe. It was hard to imagine, that newly postpartum, what life would look like with a special needs child. It’s getting easier. Ulysses has become a quick-to-smile crinkley-eyed sprite of a boy. He is such a wonderful baby, such a good sleeper, such an easy nurser, just so dear, that I wish I could have ten more after him. Ok, maybe not ten. But a few, yes! I wish. It’s hard not to be in love with everything when that baby is on my hip. He is that sweet.

And I feel such overwhelming love, so big and complete, when we’re home, when we’re isolated and I can be in control of my world. And it’s here, in this house, where that Holland analogy makes sense. When I change his diaper and I struggle, every time, to clean him adequately because his crooked feet twist into the way, I don’t even care, because he’s blowing raspberries and laughing at my singing and I am in Holland and everything is fine.

But when we leave these safe walls, that overshared essay falls apart, makes no sense anymore. Because when we leave, I have to take this boy, who isn’t any less wonderful to me, out among people who don’t understand. I have to be his ambassador to the world. And it’s not our safe world, the remote island I’ve made of our home. It’s the world where people say ignorant things, where people stare and whisper. So it’s not at all like planning a vacation to one destination and arriving unexpectedly in another. It’s like living in two different places, and hoping desperately when you go from one to the other, someone there will be able to speak your language, fluently or not.

Ulysses is very nearly six months old now! (wow!) It’s been the hardest six months of my life, in the discovery and the anticipation and the near-breakdown in the hospital after his birth, his open heart surgery, and in learning so much. Soon I will write a proper baby update post, full of proud mama bragging and pictures and such, but right now, I just want you know to how glad I am to be past this first half year.


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4 thoughts on “it’s like this

  1. I understand. When Jordan was a baby, I was kind of obsessed with staring at babies with two hands. I wasn’t jealous (most of the time), I was curious about the two handed baby experience. Sure, I’d had a baby before… but I was curious.

    And then there’s the staring. The public interactions. The questions. The answers. It can be exhausting. I wrote about it for the first time when Jordan wasn’t quite two years old:

    Jordan is so chill about her limb difference. I wish I knew the perfect combination that helped make that happen. I wish I knew she’ll always be okay with it. But in the meantime, I’m so glad we’ve spent time around as many other limb different kids and adults ever since she was tiny. We aren’t alone. Our kids aren’t alone. I hope I can help a little bit along the way if I can.

    • the public interactions being exhausting, yes. I haven’t read that post of yours yet, thanks for linking to it. (i’m having trouble opening it right now, for some reason, but i’ll keep trying.)

      thank you for commenting, Jen. I really do believe that Ulysses will ease into childhood and beyond very confidently and gracefully. He just has this mellow goodness about him that encourages me every time I get worried about how “the future” will look. In the meantime, I’m much less graceful. . .

      and though we haven’t yet met other families with children with limb differences irl, i’m doing so much online connecting and that has been so helpful. i am anxious to have these new relationships become 3D soon. I am absolutely certain that knowing other “different” children will be essential to Ulysses as he becomes more aware.

  2. April,

    Good thoughts. As always. Last weekend we were at a birthday party for big sister. We only knew the girl having the party and one other girl…there were lots of new faces and as is usual with kids Lamp was front and center at one point with a lot of questions being thrown at me. Like, verbally thrown at me… And that’s the thing, they’re kids. Of course they’re curious and of course it’s innocent, but truth be told sometimes it still sucks. This girl of course asked what happened to her arm and then said, “that’s weird.” And in my best understanding parent voice, I said “We don’t like to use words like weird. That might hurt people’s feelings. We like to use the word different, because she is different, but she isn’t weird. And everyone is different…blah, blah, blah” And it had been a pretty trying event just to get to the party (for some reason Lamp cried the entire 25 minute ride up–not normal for her at all) and my nerves were shot and frayed and the last thing I wanted to do was be a positive, gentle example of how to handle those types of questions. But I had to. And I’ll keep having to. And it’s hard…because like you said, they quite literally didn’t speak the same language. Fortunately the one friend I knew there was telling me how great I handled things like that and she was always impressed with that…and I sorta needed a cheerleader right then so it was nice to hear.

    And yes, meeting another limb different kid was just priceless. I can’t wait to meet you guys–it’ll happen, for sure one of these days. Right now my Oregon plan isn’t really happening, but I’ll let you know if that changes. But we’ll have some good times, I can just see it…hugs.

    • Oregon will always be here and so will we! I’m sure you’ll get out this way someday!

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