challenges you don’t think about


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.

Categories: Uncategorized | 14 Comments

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14 thoughts on “challenges you don’t think about

  1. I hold only kind words of love and joy for Ulysses in my heart and mind, and should I ever meet him only they will leave my mouth as well.

    • oh, thank you. i can’t even tell you how much it means to have such kind comments on my blog. i know the likelihood me me running into a blog reader who knows ulysses is slim, but i can pretend that the people i run into *could* be blog readers and *if* they were, they would surely say such nice words, too.

  2. Christiane

    I wish you lived here so I could say kind words and snuggle on that cute little baby!

  3. Ulysses sounds like a sweet boy, a sweet pajama wearing boy (my favorite kind of little boy). If my memory serves me correctly, in the Odyssey, Ulysses was rather clever and resourceful — I think your son is already proving that he is as well.

  4. Great post. Yes the things you never think of are mind-boggling! In fact, as I was dropping off big sister this past weekend on our way out of town for the big appointment, my friend said something about how nice that my step-dad could come with us…and I was like, “well ya. I can’t just hand the baby a sippy cup or some fish crackers if she wants something so you sorta need an extra set of hands.” And she was like Ohhhh….I didn’t even think of that!

    I know dude. I know.

    Oh and I’ve been meaning to write you back AND I want to tell you more about our appointment. Our hospital is like a Shriner’s–no-profit, children’s and it happens to be #3 in the nation for pediatric orthopedics. Plus, they run a limb-differences camp for kiddo’s each summer who have differences on 2 or more limbs (another high-five to the person who realized that there needs to be a camp for just kids with more than “just one” limb difference. Like you and the club foot thing, I know that if my kid was missing one hand/leg it would be a big deal. But from my perspective these issues are night and day different.) and how great would it be to hang out with our kiddos?

    OK I’m done.

  5. I also have only kind words for that sweet boy. And I have been lucky to be the recipient of one of his winning grins!

    I have a couple of cotton, footie outfits that are 6-9 months, if you would like them. I have found that it can be more difficult to find one piece, footed, cotton outfits over the 6 month size. They are in good shape and I got them at a swap recently, but they are a little too short for L. Let me know if you’d like them.

  6. Sue Berger

    He is adorable, resourceful and smart. And did I say adorable?!

  7. Alex

    Your baby sure is cute! I would so love to have a bite out of those chubby chicks. May I, just a nibble? No? Oh
    I so wish we could be neighbors and have coffee and watch your sweet boy play with his toy.
    I was also thinking …… and yes, I know, I have no experiences with your daily difficulties …… but maybe if you will start with posting his pictures on your blog first, to brake that barrier, the awkwardness? Everybody who reads here accepts your Ulysses. Maybe it would be a good start? You do not have to worry about weird looks of strangers. I don’t know.

    P.S. I loved my babies in those footed pj”s too. I would go grocery shopping in the evening just so I could justify pj wearing baby :-)))


  8. Maya

    Reading through your blog, I’ve had many similar thoughts. My boy, born just this month, only wears onesies, because of the casts on his legs. On May 2nd he’ll get splints made for his windblown hands and wrists. I wonder how I’ll take him places without getting dirty looks (I’ve heard tell some people can be rude). We were prepared for the feet, but not the hands, those I saw at delivery. A mere 3 weeks later and I’ve read so much, learned so many new words, seen so many pictures I didn’t want to see. Mainly, I don’t know what to tell people about him. He’s so much more than the sum of his parts.

    • oh! i’m so glad you commented! first of all, hurrah for your new babe! welcome little one!

      i confess i’ve never heard of the term windblown hands before. how did i live all my years being so uninformed about so many things? my son’s hand condition is called ectrodacytly and i had never heard of that either, not until he was born. it’s amazing how quickly such once-foreign terms become so familiar in our mouths.

      i’ve started telling people that ulysses has a “rare genetic condition” even though we don’t yet have an isolated location of a genetic mutation. i guess i let Science take the burden of the whys so I don’t have to. the Why doesn’t really matter that much, to me, because it doesn’t change the Who. he’s here. we have to adjust. that’s all there is to it. but it’s hard as heck. nobody plans for the HUGE range of emotions involved with having a child with limb differences. my son will never “pass” as typical. i honestly don’t know how we’re going to navigate this world with him, but i know we will, because we have to.

      • Maya

        A rare genetic condition. That sums it up (I’d say nicely, except it ain’t so nice). I’m still in the angry/why him/why me phase. We’re getting genetic testing. I agree that I don’t care much about what science can tell me, other than to make sure there’s not something else wrong with him that I don’t know about yet that could be life threatening. Like the possibility that he’s allergic to sedation meds. How do I even find that out. I think the most disturbing part of all of this is he has separate docs for feet and hands, but no one seems to know enough to give me an overall opinion of his health. Perhaps the geneticist will have a clue.

        Also, you unschool? We too. 🙂

      • we do lean a lot more toward the unschool side of the spectrum than the ‘school at home’ one! so far, so good!

        i totally understand about wanting test results to provide more helpful information. because my son has four affected limbs, a congenital heart defect (for which he’s already had surgery), and a rare eye anomaly, it’s not a stretch at all to wonder “what else?” and i often feel like i scrutinize every little bit of him so closely, to see if we’re missing anything. (i am the one who discovered his eye issue.) it’s hard to enjoy his babyhood without waiting for the other shoe to drop. i don’t know that it won’t ever be hard. but i do know that even with the hard, there is so much wonderful.

        i have been much more noticeable of things like developmental milestones this time around (as opposed to with my older two, who are 13 and 6). every time he does something at the right time (like track objects, or smile in response, when he was tiny, or reach for things, or laugh, or roll over) i feel such incredible relief.

        it’s been very helpful and encouraging to me to read about other people who have children with limb differences. and, the more reading i do (a lot!) the more i see how “normal” all the families are. families just like mine! good folks who love their kids and do everything “right”. it’s a very bitter and painful realization, that you can do everything “right” and still have a child with serious issues, but those of us who have that realization are kind of in this club, i think, that allows us to appreciate things that maybe other people don’t. no fault of theirs, but they just can’t see it. they don’t have to. sometimes i get really bitter and think, i don’t want to appreciate these things! i want to be blissfully unaware again! i want my son to be whole and be able to walk in public with him without being a spectacle. part of me will probably always feel like that. but mostly, i just think how sweet he is when he smiles, how he lights up when he sees me, how he’s just my baby. and we’ll figure this out.

  9. jeff levengood

    Contact Dr Paley at the Paley institute in west palm beach before you do anything else

    • thank you for commenting! I did lots of reading about Dr Paley early on and I wish his techniques were available to us. Unfortunately, Uly isn’t “just” missing his tibia bones. He has other issues that compound his tibial hemimelia. I know it seems shocking, that amputation is our “best” bet, but it’s really true.

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