genetics for dummies

hands

We don’t have a name for what affects my son.  We have a collection of abnormalities, both extremely rare (tibial hemimelia), less rare (ectrodactyly), and not all that rare at all (ventricular septal defect).  He has several other very unusual peripheral issues. Being able to rattle off a particular syndrome would not change who he IS. But I think it would be a slight relief. It would fill the awkward silent space that overwhelms new introductions. I could meet questions with a solid answer. But I hate myself for admitting that, for being weak against the perception of judgment. The truth is: anyone who needs to know what he “has” in order to gauge their response and acceptance is not someone who deserves to know any details, anyway.

Initial microarray testing has been, so far, inconclusive. I read the best analogy for genetic testing the other day (I can’t remember where I came across this, my eyes cross from all the casual research I do these days) comparing the process of locating an uncommon genetic abnormality to reading a huge book, like War and Peace, and trying to find one typographical error.

After my warranted freak-out with regard to the who? where? when? of his upcoming open heart surgery, we did explore other options, met with another pediatric cardiology practice. We considered everything, and we’re sticking with the original plan, with the same team, after all. But it feels like we’re making an informed choice now instead of being bossed into some arbitrary default. I really needed to feel like I was choosing something.

Lately most of my choices involve choosing to cloister myself and the baby away from everything as much as possible. And I know it’s not the most sustainable -nor healthy- choice, but it’s honest. We stay home a lot. I zip mister Six to his three day a week school, I run pertinent errands, I avoid almost everything else. Being around people is still incredibly difficult for me. I have this constant, panicky dread, like riding through a carnival haunted house, and that level of spook is hard to tamp down in public. Some of it’s my own crazy, some is the pragmatism of expecting inevitable unkindness or ignorance.

Having a specific diagnosis, a certain named syndrome, wouldn’t necessarily help others to understand and it wouldn’t change who he is, but it might clue us in on any additional concerns. Maybe there are no other problems. We don’t know. It’s hard to enjoy the regular stuff of his babyhood (and most of it is as sweet and dull as the life of most any three month old) when I’ve got this wormy nagging scrutiny always on the lookout for previously missed dysmorphic features. When is the last time you felt compelled to measure your baby’s philtrum?

Like any parent, I hope for “the best” for my children, some indeterminate soup of happiness and ease. But knowing that the playing field isn’t even, that my little babe is starting out with a lot of knocks against him already, muddles up the regular way of things. I have this internal battle, my ferocity and determination at odds with a consuming misplaced guilt. To anyone who dares put up any extra obstacles for my boy, harshness or assumptions or anything negative at all, I want to kick them in the shinbones. But then I feel guilty, so unbelievably filthy with guilt, for having shinbones myself. I have a baby born without shinbones. Can you imagine your life without lower legs? Your children’s lives? And I have read the triumphant stories, I have seen accounts of amazing amputees. I know Ulysses will learn how to use his body and I know he will amaze us. Yes. But it’s not “the best”.

You know how I said that my life feels like a movie now? How the days surrounding his birth felt so surreal as to have been scripted? How it’s all been so over-the-top? Guess which day he’s having heart surgery. Go on, guess. Out of all the days in the year, only a movie would expect anyone to believe that the open heart surgery of such a wonder of a boy would happen on Valentine’s Day. And yet. . .

I promise I won’t ever break down in your presence. It’s in my DNA to keep it together with a smile and a joke. And if I don’t have something funny to say I will at least be even-keeled. You might not think that this is hard for me at all. But you’d be wrong.

(maybe you already saw that picture up there on instagram. he’s 12 weeks old and i’m just now taking a deep breath and showing his hands. these are HIS HANDS i’m talking about. one of the most obvious parts of a person, certainly not a secret part. when i tuck his hands into his sleeves, it’s not because i’m ashamed. it’s because i want him to receive the same neutral kindness that any baby would receive. but he’s so squirmy now. waving his little arms around. there’s a special place in hell for anyone who is less than kind to this boy.)

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Categories: ectrodactyly, Super Uly, tibial hemimelia, Uncategorized | 14 Comments

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14 thoughts on “genetics for dummies

  1. I think they’re beautiful.

  2. you are fierce. in your strength, concern, honesty, wonder, love, protection, stability, advocacy, mamahood . and your boy is beautiful. i missed this over on ig…our internet has been wonky. his hands are lovely and i would like to hold them and smooch him and be another voice whispering how wonderful he is.

  3. Your writing never fails to take my breath away. Your son is beautiful.

  4. Christiane

    “After my warranted freak-out with regard to the who? where? when? of his upcoming open heart surgery, we did explore other options, met with another pediatric cardiology practice. We considered everything, and we’re sticking with the original plan, with the same team, after all. But it feels like we’re making an informed choice now instead of being bossed into some arbitrary default. I really needed to feel like I was choosing something.”

    I really admire you. I always say I am going to get a second opinion, but then I feel guilty for it. And confrontational (and I’m really a non-confrontational person). What you did was very brave, in my book, and I’m glad it gave you a little peace in an naturally turbulent situation.

    • thanks, christiane. i sure did beat myself up plenty for considering different doctors, but now i’m glad i did it.

  5. So when we found out about Lamp I was connected to another mom of a daughter who had all 4 limbs affected. As you know, it’s hard to find those families. So I was still pregnant and talking to this mom over the phone as she lives in a different state. Her daughter is now a teenager and so it was good to talk to someone who had some perspective. Anyway, one of my biggest worries while pregnant was wondering how I would react to my own daughters limbs. Being someone who gets nauseous at pictures of arms bent out of joint I was worried that I would have this negative reaction to seeing limbs that were ‘incorrectly’ formed. So I asked her, I said “what was it like to see your daughter for the first time? was it hard to see her limbs?” Even though it was over the phone I could tell she was smiling and she said something to the effect of, “No it wasn’t hard. I came to love those little limbs after all, I got to be the one to take care of them.”

    That really put me at ease. And of course I now know she was right–I was her mother and those limbs would be precious to me no matter what. Additionally, it has allowed me to also love others more openly with all their beautiful differences. Those hands of Ulysses look simply delicious to me.

    For what it’s worth, I was also really worried how other people would react….in the past 18 months I can think of 3 encounters that were what I would consider rude. (There have definitely been lots of staring and whispers, but that’s among kids and I’m still trying to find the right balance of being open and educating, and knowing when to stand my ground and tell them “weird” is not a nice word, etc). Of course it’s easy to love a baby, even one with limb differences–I worry more about her growing up and losing that innate baby preciousness…but even so I’ve been amazed at the kindness of others.

    • it’s funny how i already kind of forget that he isn’t “normal”. probably because i spend all my time with him and we spend the bulk of our time at home, i have actually found myself taken aback at “normal” looking babies. so many fingers! i admit that meeting him initially was difficult for me (but his birth was really hard and emotional and we thought he was going to die, etc.) but now he is just who he is.

      • Exactly! I remember holding other babies and being like, “What do I do with all these limbs!?”

  6. Kristen (mamaspike)

    Thank you for this beautiful photo! Sweet baby hands, give them kisses for me. Makes me feel ready for another tiny baby again. That Valentine’s Day surgery? I’ll be holding you all in my heart all day.

    • oh, thank you for commenting! i wasn’t sure at first about putting his surgery date out there, but then i thought, yes, i should, because i want the good people i know all across everywhere to be thinking good thoughts for him. 🙂

      • Kristen (mamaspike)

        I treasure the idea of a big web of people holding me up when I need it. That thought gas gotten me through so much over the past years.

  7. I’ve been reading your posts since I found you on Band Back Together, though I missed the last few weeks. You and your family are incredible, and little Ulysses is beautiful. Honestly, when I first scrolled down, I didn’t even notice his hands. I don’t say that in a fake, playacting way, but because it’s true. The first things my eyes were drawn to was that sweet little chin and mouth. His hands are beautiful too, and people will see that, because he’ll make them see it.

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