5 weeks and counting

Not much has been going on.

Or maybe, enough has been going on that I don’t worry about the baby’s hand as much as I think I should be.

Which makes me feel impressed with the human brain all over again.

I work. I am cleaning and re-organizing the house from top to bottom. I am still raising my toddler. I am teaching. Attending conferences. Cooking.

Sometimes, there are little flashes of realization.

Opening a recalcitrant packet of peanuts on a flight.

Watching my toddler walk into the house and impatiently unzip and shrug out of her jacket.

Watching her count to 10 (or 13) on her fingers.

How will he do this? Will he look at me (and her, and his father) and realize how different he is?

The limb difference community is full of hope.

“There is nothing my child can’t do.”

“I wouldn’t change a thing about her.”

“She has made me a better person.”

It sounds wonderful, but how much of the “unique” Koolaid can a child really drink?

Children are smart. They are like little computers that don’t have much use for political correctness. They look at others (and themselves) and know immediately what’s different.

Or what’s missing.

Once in a while, amongst the messages of hope and joy, a desperate cry comes through.

“My five year old wants to grow a hand.”

“She told me angrily she doesn’t like her special hand, that she wants two hands like her friends.”

“He hid his hand in all the photos.”

It’s hard for me sometimes to find a silver lining, to think of my baby as “perfect”. He will be flawed, like me, like his father, like his sister. No, not quite like the rest of us. He will be different. He will have to learn to deal with what he is given. He will have rough moments. I just hope and pray that he (and I) will come through those moments with grace.

About purplesque

Psychiatrist, cook, bookworm, photographer. Not necessarily in that order.
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6 Responses to 5 weeks and counting

  1. zottavox says:

    It’s true my friend’s life hasn’t been easy. There’s been discrimination. But he does do everything! Came from a modest family, no fancy treatments or psychiatry. Just a lot of determination, good upbringing, smart siblings and hard work. A lot of acting like it wasn’t a big deal. But now when women see the arm in his photo it is hard to get picked by photo to date. He is honest and will not hide it. But there’s a new app called Match where people actually don’t see photos first. Yay!

    As a person who’s intelligent, educated and contributes to society he’s extraordinary, wise and kind. And handsome!

    In other news I am so impressed that with all that you are cleaning your house! Loved the conference # and seriously it was very significant. You live-tweeted it impeccably.

  2. mizunogirl says:

    I think you are entirely on point. Sometimes when I see kids being honored for outstanding achievement… because they have a difference of sorts, it’s a little odd. I viewed this TED talk when my spine injury was trending towards terrible and people were calling me “inspiring” It helped me greatly. https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much?language=en
    I think you are going to have some wonderful beautiful days and some difficult and painful ones, and they would have been there with 10 fingers or 5. I think your family is equipped to raise a son who is generous, kind and loving, and to me, those are the things that really matter the most.

  3. There are so many tools and accommodations available for children with disabilities, I’m sure your son won’t have any trouble zipping up a jacket or getting dressed in the mornings. Just make sure he starts working with an occupational therapist as soon as he’s able to understand her instructions. As for any cruel remarks—maybe it’s just the district where I work, but students these days receive lessons about bullying and disabilities from an early age. The penalties for bullying are also high, though I have noticed that peer pressure can work in a positive way. Bullies often get called out by the other children and are quickly ostracized if they continue to act badly.

    But the issue of “uniqueness”—I think we all have to find our way through that quandary. The child who is bright and enjoys classwork at a school where being a ‘A’ student is looked down upon; the artsy child who decorates her schoolwork with doodles and gets chastised by her teachers (I had one like that; she works as a digital animator now); the child who never seems interested in school, though at home he reads college-level books and talks in depth about dinosaurs and aerodynamics in cars (my third child, now a musician). I would be worried about the child who showed no interest in being “normal,” just as I would worry about the child who quashes her unique talents in order to appear “just like the other kids.”

    It’s also natural for a mother to worry. You know that already, right? 😉 I hope the next five weeks go well for you and the baby.

  4. Chinchin says:

    I think you will find that once your child is born, his hand is but a part of this whole beautiful person, who will be so much more. Yes, there will be times which will be hard, but so does everyone….may be more defined, but such is life. No guarantees for anyone. Love and faith will help you and your family.

  5. Lurkertype says:

    As long as the rest of him works, he’ll be fine. He has wonderful parents. And after all, he’ll never know any different. It won’t be as traumatic as if we were to suddenly lose a hand.

    Children are cruel to each other no matter what. His difference will just be more visible. I’m sure his big sister will grow to be his fiercest defender!

    Occupational therapy will help, and maybe someday he can get one of those cool superhero-type hands, which the other kids will probably envy. Although he won’t be able to shoot lasers at the mean kids with it…

  6. Scott says:

    With love and acceptance and understanding he’ll make his way just fine, and I know you’ll give him those things, and they’ll help carry him through the challenges.

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