Homage to my Parents

What is your first memory?  It is probably from when you were around four years old, maybe three.  One of my earliest memories was when I was sitting with my parents and a doctor at the Rusk Institute of Rehabilitation and Medicine in Chicago trying to fit a prosthetic forearm and attached hand onto my upper arm.  I remember looking around at the other kids.

As far as I could see, nobody else had only one finger on each hand, like me.  Rather, they seemed to mainly be missing an entire arm on one side, with a finger or two literally hanging from a shoulder or elbow.  Those kids were there because of their mother taking Thalidomide.  Thalidomide was a drug widely prescribed to women during that decade to treat severe morning sickness during pregnancy.  Many women who took the drug in early pregnancy, unaware of the risks, gave birth to children with severe birth defects such as missing or severely shortened limbs.  When it was my turn, I tensed.  No wonder it was my first memory–it was the first time I recall really physically hating anything.  The device was made out of materials that were both rubbery and hard.  At first I was holding both of my parent’s hands and the next thing I knew I was being placed into an object that looked incredibly fake.  To me, the device, and not me, looked abnormal.  Appearance aside, I could not stand how it felt.   Even at such a young age I had a strong spirit.  I began to shake my arm hard enough that, to the surprise of my parents and the doctor, I somehow wriggled my way out of the darn thing.  When the doctor tried to convince me to try it on again, I refused.  Although I was extremely young, I knew I had disappointed my parents.  They had driven more than two hours from Urbana with me to try on the device.   At the time, they were at best uncertain regarding what I would be able to do physically.  Wanting only the best for me, they believed that without a thumb for purposes of opposition, my life and my ability to do simple things like writing with a pencil or cutting with scissors would be significantly challenged.

Have you ever seen anything in person or perhaps on film where the visual shocks you back into your first memory?  That happened to me last Sunday when I took our daughter Savanna to see the movie, “Dolphin Tale.”  In the film, Sawyer, an eleven year old boy finds and then untangles a hurt dolphin (“Winter”) that was caught in a crab trap.  Although Winter survives, to save his life his tail is removed.   The movie is touching and Savanna, a great lover of all animals, was clearly moved.  To assist Winter in swimming in a way that would not injure his spine, he was given a prosthetic tail.  However, Winter hated the device so much that as soon as it was attached, he thrashed his body until it became loose and sank.  Ultimately, the doctor developed a new gel-type solution so that the device was a comfortable fit for the dolphin, but regardless, my memory had been jogged.

So at this point of my blog, I have actually compared myself to an injured dolphin.  You are probably wondering where this can possibly be going?  So…here it is:   What if my mom and dad had forced me to wear the prosthetic device because they assumed it was my only hope to living a somewhat normal and functional life?  What if they were simply too afraid to walk away and face the unknown? Although I may have had some advantages had I worn the device, I am positive that my life and my determined spirit would have been forever altered.  As a parent, I can now appreciate how frightening it must have been for them, given that any other option for me to live a somewhat “normal” life was at best, a question mark.  Despite the fact that I was the first in my family to be born with ectrodactyly, and uncertainty was the only certainty they could count on, somehow my parents figured out the “golden rule” for parenting:  They took a deep breath, gathered their courage, and let me simply be me.

I am forever grateful.

6 Responses to “Homage to my Parents”

  1. StaceyOctober 25, 2011 at 1:07 am #

    A reminder to all to embrace our differences and to let our children be who they are. Thanks for sharing this story, Meg…very moving – no different than your other blogs.

  2. Mat ZuckerOctober 23, 2011 at 9:21 pm #

    When I complained enough about being too short, my parents took me in fifth grade to a world-famous Endicrinologist at Columbia. I got to skip school (“I’m going to New York tomorrow, I told my class) and got measured, prodded and benchmarked as he tried to guess at my height curve and prospects. I learned I was at the very bottom end of the “normal” range but still within it. I’d likely be 5’6′ or 5’7′ which actually seemed pretty ok (I haven’t made it to that … yet). HGH, the growth hormone, had just come out and was pretty popular. Emmanuel Lewis was on it I think. When I heard about HGH, I asked for it, but because I was still within the ‘normal’ range, I wasn’t allowed to take it. I wonder still if I had had the option, would I have taken HGH. Probably, but I am kind of relieved I didn’t have to. I admit I was a bit worried since these medical solutions can scare me. They get your hopes up but the reality is more complicated. And then there is the risk. For example, I might grow unevenly, although I bet my brother would have thought it would be cool to have super long legs — “like Mr Fantastic of the Fantastic Four” he would have said.

  3. Anna ShpairoOctober 23, 2011 at 4:26 pm #

    Hi Meg. We saw the movie “Dolphin Tale” yesterday and this morning I read your post. We all loved the movie and were very touched by it. Thanks again for sharing such private moments and thoughts, like the your description of your first memory, with the rest of us. I also enjoyed your sensory description of the prosthetic that the doctor tried to fit you with. Your parents response to your wants and needs is pretty admirable. You’re right when you say that those kinds of choices and decisions are not easy ones.

  4. JohannaOctober 22, 2011 at 2:33 pm #

    Great Blog…
    Reminds me of the power of being unique…. people, including family, with the best intentions, will try to make you “fit in” by finding ways for you to be “same as” others… but people forget that what make you stronger, powerful and most times successful are the differences that you embrace…..! Love this BLOG!!!

  5. KathleenOctober 22, 2011 at 1:08 pm #

    Meg, again, your words and memories speak to me with a quite power. The power of resilience. Parenting is far from an exacting science. Parenting a child society deems “different” even more so. “Experts” always have a lot to say, but children don’t always (okay rarely) follow the scripted playbook the experts sometimes would have us follow.
    As Amélie grows and develops I could be bombarding her with vitamins and therapies and videos and work sessions to help her improve her cognitive and physical development. It could be all consuming. Instead my husband and I try to find a balance of focused, extra support for her development and just letting her be a kid who will navigate her way in the world- and show us the way.
    Taking that deep breath and letting go is exciting and scary at the same time. Hurrah to you and your parents. 🙂

  6. Marci HardyOctober 22, 2011 at 12:51 pm #

    Great analogy!

    I remember being forced to wear my hearing aids and hating them….up to the point where I simply flushed them down the toilet. 🙂 People try to “fix” us. They’re well meaning at times, but our opinions do count! Even at a young age!

    I’ve had people come up to me and say “poor you…you can’t hear the bird singing; you can’t hear music;; etc”….and I tell them I can feel the music or I can see the beautiful birds.

    So, I relate well to whatever you are saying but in a different way!

    Have a great day Meg!