hello, june!

Every morning on our regional public radio affiliate is a dynamic discussion program which has been the backdrop of my kitchen post-breakfast hour for several years. It’s always on and I either listen completely, or partially, depending on the subject that day. The other morning, they were -briefly- discussing this article: Study Finds TV Can Decrease Self-Esteem In Children, Except White Boys.  And this is how you know my perspective is different now, how my worldview has shifted enormously: I wanted to shout, “but what about white disabled boys? what about white boys with limb differences? what about boys who will never see another body like theirs, ever ever? what about that, huh?” I do not mean to detract from the real and absolute marginalization of children of color or young women. What I do mean to do is say that if not having positive representation of yourself, of your kind, if you will, in the media leads to poor self-esteem, I worry about my littlest boy. Of course I do. This has been one of those constant roaring questions in my brain for all these last six months. What would it be like to grow up and never see someone who has a body like yours?

I guess the plus, for Ulysses, is that we don’t watch a lot of television. We don’t watch any “television” proper, actually. Our broadcast days died when signals went digital. We were sad to lose PBS, and bought a digital converter box and put an antennae on our roof, but we were still unable to get a signal. Ok, then. We stream stuff online sometimes. We rent movies from our local video store. We are not devoid of media. But we don’t have commercial TV. We are deliberate with our watching. But no matter how carefully I screen the content of the programming my son experiences (uh, eventually. he’s years off from watching anything at all.) I won’t be able to assure that he sees positive reflections of people with similar challenges. As a mother, that’s hard to realize, but how much harder will it be for him?

And, thanks for understanding that these questions are rhetorical. Unless you are a person with a similar experience, you can’t know. I’m muddling through and I know so much more than I did six months ago, but I’m still so clueless.

In other news, summer weather has arrived. For my Phoenix friends, especially, I should clarify that it’s hit in the 80s several times and currently, according to the thermometer on my dresser, it’s 74 degrees in my bedroom. Hey, it feels warm for us, for the first day of June!

And now that it’s warmer I’m faced with the conundrum I was dreading: how to dress the baby when we leave the house. A couple of weeks ago, the husband and the kids and the baby and I, all five of us, walked up to our town’s Saturday market. We timed our walk with the baby’s nap and he fell asleep in the sling shortly after we set out. He was snuggled in fabric, up against my chest, and just his little face, his head framed in this cute bright green pilot cap, stuck out. And not one, not two, but THREE people made sweet, smiling “cute baby” comments to me. I can’t even tell you how meaningful those comments are to me. He IS cute. I adore him all day, each day. And I need other people to acknowledge that. But would he receive the same comments, the same approval from the public, at large, if they had seen his tiny, twisted legs? If they had noticed his hands?


If I take him out in public in bare legs and short sleeves, people with notice. He looks different. Of course they will notice. Noticing is expected, noticing is fine. You can’t help noticing, but you can help choosing kindness. This baby’s favorite toy is his squeaky giraffe! This baby sleeps on his belly and sticks his butt in the air! This baby lights up so brightly when he sees his brother and gleefully grabs his sisters wild hair. This baby loves music and I’ve Been Working On The Railroad is weirdly the magic song. This baby doesn’t look like any other baby you’ve ever seen before. But this baby is loved. It’s my job to make sure he knows that. (but it’s your job, world, to not make my job harder.)


Categories: Uncategorized | 11 Comments

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11 thoughts on “warmly

  1. April – maybe you should give the pubic at large a little more credit. Cute is cute. Who could deny him that right? The butt shot is especially cute. Pin it on your baby carrier so everyone knows just how cute that baby of yours is. 🙂

    • I should have written more clearly. There is a marked difference in reaction when he’s been asleep and mostly covered to when he’s not. The sleeping in the sling days are pretty much over, though. He’s too big and busy for that now! Cute is cute, sure, but I think his body confuses folks and in that quick second (remember I’m just referencing casual encounters here, not people who know him/us) they say nothing instead of some random baby comment. that’s why I wish I he could just be known to everyone before we go anywhere, so we could bypass the confusion. I had to hear a little boy tell his mom that my baby is “freaky”. And, yeah, kids are honest and inarticulate. But i still have to hear stuff like that and Ulysses will have to hear stuff like that. And that’s a heaviness I can’t explain.

      • Those types of comments from strangers and even maybe acquaintances are so hurtful. They can really be painful even into adulthood. Though I don’t personally know the stings of such comments, I live with someone who experienced a childhood of standing out and being the only person like him (though obviously there wasn’t a disability involved). Uly is so lucky, because he has such a loving family to temper those unkind words and that can make all the difference in how much they hurt and how it will impact him in the long term. No child, no matter how cute (or not) should have to hear thoughtless and hurtful comments, but sadly, many do.

      • i also think Ulysses is lucky, because he is doted upon and celebrated so much. it’s a hard truth that negative interactions weigh so much more than positive ones. so i hope that we (his family and all the people who know him) can keep the balance tipped to the good. being different as a child has got to be tough. my mama heart breaks and grows stronger, both.

  2. wishing i could be the public at your farmers market or the library so i could love the stuffing out of that cute baby of yours in person and not just through this blog.

  3. Julie Anita

    I have to say, there IS something special about Uly. I’m not saying that because I’m a fan of your blog, or because I know he’s disabled and I want to say something nice about him like it’s not a thing, or anything like that. He has a magnetic charisma that comes through his face even just on photos. Very “old” and intelligent eyes. I really believe people are also drawn to that quality in him. Those same people would react in a different sort of way if they saw his hands and legs, sure, it would be layers on to of their other reactions towards him, but I truly think Uly is going to change how people think about disabilities. ❤

    • what a nice comment. we think he’s awfully special for all those reasons, too. he is a very wonderful baby.

      • Julie Anita

        I selected to have WP notify me of follow-up comments, so I’ve been seeing what people have said in response to this post over the past few days, and what you’ve said back to them.

        And then today, I went to a graduation party, and there was a little girl there with very short and patchy wispy blonde-blonde hair. Immediately I wondered if she was sick, had cancer, had some other sort of condition, because like you said, people notice. But I was thinking about you and your post and I thought I should be very aware not to let my wondering turn into absent-minded staring that she might notice, because she was certainly old enough to notice if someone was staring at her, and anyways her mother and many other family members were there too (although I didn’t know who she was, so I didn’t realize she was related to the graduate at the time).

        A little while later I happened upon my husband, who promptly exchanged babies with me because he had introduced one girl to someone and wanted that someone to meet the other girl. A moment later my mom took the first baby from me for a few moments and I went to go find my husband and the second baby. I found my daughter in this little girl’s lap! She’d wanted to hold a baby and Baby #1 is not particularly amenable to making new friends (haha), but Baby #2 is a huge fan of everyone. So this little girl was holding my daughter and they seemed pretty comfortable with each other.

        I sat with them and chatted with her and her mother, who I’d actually met several years ago– we chatted about how I was taking Russian classes in college and she and her husband were traveling to Russia to adopt a little girl. Turns out that that little girl was the girl holding MY daughter, and she was turning ten soon! (It had apparently been longer than I thought since we’d had that conversation.)

        Her daughter? Was amazing. She had this graceful confidence about her without the sad sort of maturity that sometimes accompanies it. She was very comfortable holding my daughter and had no qualms about asking me to please bring her back after I was finished feeding her. It was just a solid, calm confidence, something you don’t see very often in kids her age.

        I mentioned to the mother later how impressed I was with her daughter, and she replied that her daughter had been through a lot with people treating her differently and that she developed a pretty resilient attitude. And I look at that girl and think, wow, I can’t see much getting to her. I know it will, sometimes, and it will probably get harder as she gets older and she doesn’t look like the “pretty girls” at her school, but there was just something so powerful about her as a person that I think she’s going to be okay.

        Anyways, the point of this very very long story is that I met a remarkable child with differences today, and I was thinking about you and the sort of things that you say about Ulysses the whole time. I was very glad for being a reader of this blog because I think it may have helped me to not be so afraid of breaking someone who is different that I just avoided talking to them; I’d have missed out entirely on meeting this really cool kid if I had. So thank you. ❤

  4. i struggled with this. If i’m really honest with myself, i would look too. I would want to ask about it. I never would, because i’m kinda shy – but I think being able to ask about something you don’t know about is a good thing. We want our kids to do that, right? curiosity is a natural human attribute, and i don’t think there is anything wrong with it. I can’t fault people for something i know I would look at and wonder about myself. it doesn’t mean i’m not annoyed by the looks or the questions or people who just wont leave it alone…but i’m alright with it.

    at home, we talk about people looking different and doing things differently, and even so, when we met becca and izzy, my older kid says (very loudly) “LOOK MOM, look at his arms and legs!” and i wanted to die. we had talked about it, he sees his one-armed little brother every day. it was *supposed* to be a non-issue, and yet, we made a scene anyway. maybe it bothered her, maybe not (sorry becca!).

    why are disabilities so taboo to look at and discuss? i can’t help but think that if they were more visible and talked about more, they would be more readily accepted in society.

    Fast forward to today. I take him out and we don’t cover up anything – really we never have because he was born in Phoenix in june and it’s too hot to mess around with that. Frankly, I don’t give a shit anymore if people look or ask. People can look all they want. When they ask why he doesn’t have a hand, i tell them because he doesn’t need it. He doesn’t. That guy on facebook has no limbs, he doesn’t need them either. The ONLY thing that really matters is being happy and having people who care about who you are as a person. Everything else is just a bonus.

    every time somebody told me he was cute (when he was a baby) i thought for sure it was a pity complement. i mean, he IS cute, but what is it about looking different that makes people feel the need to make overcompensating comments? what you said in another post about a sign or something introducing him to the world makes so much sense to me. i feel like that too.

    and btw, this is NOT SUMMER WEATHER. ::cries::

    • Yes, I’m totally down with looking and wondering. But I don’t want to see a grossed out face. And please just smile, people. See my baby’s differences and just smile.

      I also think discussing openly is the best thing. My six year old is the best teacher of this for me. He has been so wonderfully matter-of-fact about Ulysses that I see how easily children accept new things. So children who learn to be accepting of differences will grow up to be accepting adults.

      I take back what I said about summer weather! We’re back to gray and chilly today! But August will be glorious!

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