Because You Never Know – The Pertinent Bit

I recently wrote a post about GHD and dwarfism, in general.  I seem to have somehow deleted it without meaning to.  Perhaps it’s for the best, as my son who has GHD has told me he prefers to tell or not tell people – not have me do it.  Even though it feels good to smack rude people with facts, I do need to learn to respect this.

So here are the pertinent bits of info I really wanted to share:

While I was in the process of adopting one son, another (bio) son was diagnosed with growth hormone deficiency (GHD).  This is a rare and expensive to treat medical condition.  So if one son had been in the other’s shoes, he would have been classified as a “special needs” kid, even though he was developing normally in all ways except height.

I have asked myself – would I have considered adopting him?  Or would I have missed out on being his Mom?  It’s painful to even contemplate…he is beyond important to me.  I could not love him any more – or I’d burst.  So…it’s a question worth putting “out there.”

GHD, once called proportional dwarfism, is treatable.  Most forms of dwarfism are not…but with most forms of dwarfism, intellectual development is expected to be normal.  And most kids grow up to be independent adults.

Little People of America has a blog with information on adoptable waiting kids.   And here is a PBS bit on dwarfism for information.  It includes an explanation of why “the m word” is so offensive….

It’s important to take care with what we say to or about children who seem different in some way.  It’s not about so-called political correctness or coddling them…it’s about basic human decency.  If we make invasive, presumptuous comments to or about children, that is how we are teaching them to behave.  And no one, should ever be judged by their size…because…you just never know….

Judge me by my size, do you?

3 thoughts on “Because You Never Know – The Pertinent Bit

  1. It’s interesting that you pose the question of whether or not you would have adopted a child knowing he had GHD. We can wrestle with the question, but I think it would be impossible to know definitively whether or not we could have overcome our intrinsic desire for a “perfect” child.

    This makes me think of prenatal testing for Down’s Syndrome. A large part of me didn’t want to know. What could I have done about it anyway? There are degrees of severity, but they have lives worth living.

    Sensitivity is not too much to ask. I hope your son gets that 🙂

    1. Thank you. This comment is incredibly understanding and kind.

      We did the 5-year pre-school year for M (I can’t bring myself to call it “red-shirting” though I now understand it has nothing to do with Star Trek) ; -). He’s a summer baby and not precocious. Though the compelling reasons for treatment were heart, muscle, and bone health, I’ll admit that we were also hoping that, by the time he started kindergarten, he wouldn’t look like a 3 year old.

      At this time, he’s growing which means the treatment is working. He is no longer noticably smaller than his peers, so I doubt this condition will cause him any grief.

      The question of whether we’d willingly adopt a GHD kid (yes NOW) came up because we did discuss a second adoption (4th child). Right now, we are at “no” on the ADOPTION for financial and ummmm…mental STRESS reasons, but this did open our eyes and hearts in ways we didn’t even know they were closed.

      I know what you mean about prenatal testing. I declined any invasive testing with my oldest. If he’d had severe developmental delays, we’d probably have stopped at one. But we knew we were going to term with him – no matter what – so why test?

      My husband initially freaked out about surprise son 3 and was very worried about who might be in there (because I am in my mid-40s and because C, who’d only been home for 2 weeks, had a traumatic transition). Fortunately, I had a doctor who intuitively knew that any invasive testing would be to calm the husband – NOT because I wanted it. SO he advised for the lowest risk options.

      Wow – that was a long response! THANKS for stopping by.

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