Please forgive that crappy photograph, it was taken in low light with my phone, while The Baby hung out in his bouncy-bouncy chair and I tried to cook dinner or something, I don’t remember. The reason I wanted to use that photo in this entry is because it’s the only one I could find that showed Ulysses holding his skwish toy.
Have I mentioned that I’ve saved everything from my other kids? And since you know I’ve been doing this parenting thing for over THIRTEEN years now, you should know that we have a lot of stuff. Plenty. We can amuse and care for kids of all ages in this house. I gathered up the “baby toys” out of storage, cleaned them and made sure they were still decent, back when I was pregnant. I put them in a big basket in my office (because we don’t really do nurseries) and waited for the baby to come. And when the baby did come, it was pretty obvious right away that so many of those toys, various and sundry rattly little things, would not work this time.
Probably every baby you know has a great big bear paw of a hand with five functional fingers. My baby has one fairly functional hand, with three digits, and another “hand” with two wily fingers. I have this brilliant flash of memory from my first go around in this mothering trip: I was talking on the telephone to a friend and my wee months-old daughter reached her hand up and grabbed a toy I’d been shaking to interest her. I don’t remember all the specifics, just that I was in the middle of a conversation and sort of freaked out, “she’s grabbing a toy! she’s grabbing a toy!” like my baby had invented the opposable thumb! I was a new and young mother (oh, 23!): everything my baby did was amazing! Certainly my enthusiasm was tempered the second time (although just ask me about Mr. Six’s sparkly eyes, which he’s had since he was born, and I won’t shut up. he is a wonder, in his solid loyal cheerfulness). But now. Here I am again, freaking out because my baby grabs toys.
Anyway, we didn’t have one of those ubiquitous skwish toys for the other children. When peers of my girl had them, you know back in the late nineties, they were all multi-colored and had a little bell attached. They come in several colorways now, including this lovely all natural wood version, but none have the little bell anymore. Choking hazard, I guess. This was the only thing I knew that I wanted, no, needed to get my new baby for Christmas. We “skwished” it down into his stocking, we did, even though by late December he wasn’t anywhere near the toy grabbing stage yet.
I am so glad we bought that dumb little toy. Like I said, Ulysses can operate his right hand very well. But his left hand serves more as a counter balance post than a grabbing tool. Imagine a hand with only a thumb and a pinky. But, make sure that the hand you’re imaging doesn’t have ANY of the corresponding absent bones or ligaments. It’s hard to understand, but it’s basically like Ulysses has two digits attached to his forearm. No wrist, no palm. And we believe that his left hand will get stronger. We believe he’ll learn to use it as functionally as anyone needs their non-dominant hand to be. We really do believe that. But right now, he cannot grasp with it and he hasn’t quite figured out how to use the deep cleft that divides those digits to his advantage. So what I’m saying is that his left hand offers no holding assistance whatsoever right now. But with that skwish toy, he can stick his hand in and it gets stuck in the string, and he can use either arm to get the toy into his mouth. And everytime he does it, I am blown away and so ding dang proud. He is figuring this out! He is learning how to maneuver his body and we just need to make sure he has the right tools.
I’ve saved all of the baby toys from my older two kids, and you know I’ve saved all of their old clothes, too. Last summer, when I was “great with child”, I guilted the mister into organizing ALL of our saved baby + kid clothes with me. It was a dirty, tedious job but when we were finished, we had a tidy stack of bins, clearly labeled by size. Remember, we didn’t know if baby “Scrappy” was a boy or a girl (although, my older babies largely wore the same things, regardless of gender), and it felt good to know that we had all our bases covered.
But no one can be prepared to have a baby with limb differences. All those bins of clothes? Yeah, those aren’t working out so much. I’ve had to buy new things this go around, too. Ulysses pretty much lives in pajamas. You know the ones, baby clothes manufacturers label them “sleep ‘n play”: all cotton zippered suits with attached feet. It’s the attached feet part that really matters. I haven’t shared pictures of my baby’s feet and I think it’s because it just hurts me too much. Before he was even discharged from the hospital following his birth, we were told amputation would likely be recommended. (please. imagine your “babymoons”, if you will, those days just following your babies births, and think what it would be like to hear that you would need to CUT OFF your baby’s legs. it is NOT easy to reconcile AMPUTATION with the reality of any newborn.) So, if you’ve forgotten, or if you’ve never read my blog before, he has something called Tibial Hemimelia, which basically means that he was born without tibia, or shin, bones. But the peripheral issues of that birth defect are missing ankles, non-functional knees (he has one “good” knee and one that does not work at all), and clubbed feet (oh, and he also has ectrodactyly, so his feet? only have two toes each). It’s funny, now, what I know about orthopedic issues. When we were at our first consult at our first orthopedic surgeon appointment (yes, we’ve seen more than one in my baby’s five months), I was sitting in the waiting room next to a family with a baby with one clubbed foot. That’s it. Not other orthopedic issues. Just one clubbed foot. And they were clearly squeaky wheel patients. And even then, when my tiny boy was a little swaddled thing, I was so offended by the audacity that one quirky foot was even a problem. (of course, the irony is that had either of my other two kids been born with a clubbed foot, I would have surely freaked out with worry, too.) You know what happens when you have TWO clubbed and unusual feet attached to tiny lower legs? Socks don’t fit. Like, not at all. It’s kind of a running joke how baby socks never stay on, right? But when I say I can’t keep socks on my baby, I mean it in a much more serious way. I’ve found the best solution is to keep him in zippered footies. The problem is that I didn’t actually have all that many from my older kids. I’ve had to buy new baby clothes after all. A lot of good all that careful saving did me.
The other problem is that I’ve already had two separate accounts of people making snide “baby in pajamas” comments to me. I think they both said something like, “look at you, wearing pajamas!” to Ulysses. Now, both incidents could have been absolutely benign. Maybe they meant, “oh how nice it must be to be a baby who can wear pajamas all day” but my understandably defensive filter heard, “why is your baby wearing pajamas in the middle of the day?” And you should know that I didn’t explain to either of these people, I didn’t attempt to justify my baby’s slovenly daytime attire to perfect strangers. But those comments, as innocuous as they might seem, just make me hurt. I have so many cute baby clothes. The baby farm here is all closed up (I guess? I am kind of old now. and not so lucky in the fertility department) and it’s hard to come to terms with getting rid of things my older two kids wore that my third will never be able to. I’m glad I’ve found an answer to keeping him warm and comfortable. But footie pajamas also keep him safe. It’s going to be too warm soon for attached feet all the time. And then I’ll have a whole new challenge to face.
Today we were afoot in the city, all five of us. We grocery shopped and watched the tail end of the sister’s parkour class and ate out and meandered through that great big blue warehouse (swedish for crap, such wonderful enticing crap, you know. but we had a list and stuck to it!) and Ulysses was a champ. He was a pajama wearing, grinning champ. You say one kind word to that baby and he rewards you with the best ever grins. Please say kind words to him.