Chances

Every few months I am overcome by the enormity of chance. I know people have different views on the concept of “why” one happens to have a medical condition (or any other defining life event)… but for me to conceptualize it, it’s just chance. Genetic fluke. Environmental. All of the above. Who knows!

It was simply chance that I was born with Moebius syndrome, and it was chance that I was born where and when and to whom I was born.  For me, those chance occurrences allowed me to have access to access to amazing healthcare and educational resources, a supportive family and community, and the opportunity to be successful.  I know that was mainly just good luck and chance, and I am grateful.

But even more shocking for me, and I think for a lot of us “sheltered” people in first-world countries is that – depending on socioeconomic status and cultural norms – many children are not given that chance. Families aren’t able to pay for healthcare.  It isn’t socially-acceptable to have a child with visible disabilities.  They can’t access necessary resources.  So they abandon these children to state care or the foster system.

Really, really unfathomable. But it happens. It wasn’t that long ago when Western countries did the same (for a heartbreaking perspective, Google “state developmental centers/schools and/or eugenics”).

This post is motivated by a child I just became aware of, “David”. He lives in China and looks so much like so many other boys with Moebius syndrome I know.  He is apparently smart and able to succeed if given the chance.  But not living in the US and being in a large foster home, he does not have access to the same resources and tools that will allow him to succeed.  The chances of him being adopted in China are slim, so he is available internationally.  Taking the chance that someone a world away might see something in him.

I hope someone takes that chance.

(If you are interested in learning more about “David” or other waiting children, see http://www.madisonadoption.com)

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The “what if’s”

Warning: not a feel-good end of the year wrap-up post. Sorry about that, too much to think about and synthesize right now.

What if I had been born a century earlier, heck, even 60 years earlier? What if I had been born in another country entirely? Would I have survived? Would I have been operated on? Would I have had access to education? To doctors? Sometimes this spiral of what if’s is overwhelming and heartbreaking.

It hit me today when I read about the possible ban on adoptions by American families from Russia in retaliation for a bill the US passed to make it harder for Russians with human rights violations to enter the US (which, quite frankly, makes perfect sense to me).  Many of the children being adopted out of Russia right now have special needs, physical disabilities ranging from cleft lips and palates to spina bifida and developmental disabilities such as Down syndrome.

I don’t know what the cultural climate is in Russia, but I believe it is very difficult for many families to raise a child with a disability. There is no IDEA, no ADA to guarantee basic rights for all citizens. Due to poverty and other issues, many children with disabilities are placed in mental institutions and essentially left to die.

This was brought home to me today when I watched a CNN segment on a decorated US Paralympian, Tatyana McFadden, who was essentially left to die at age 7 in a Russian institution until she was adopted. Clearly not all children will go on from this situation to be high-level athletes, but still. It illustrates just how much of a change can happen.

Sometimes I wonder how many children out there have/had Moebius syndrome, and never had a chance for a normal life.  How many are still out there? I was struck last year when a couple adopted an adorable girl from China, who turned out to have Moebius. How many other children like Hannah are there, children with Moebius syndrome who never have the chance to reach their full potential?

Sometimes I get entirely too idealistic and wonder what I would do if faced with the option of adopting a child with Moebius. Part of me just thinks that’s just way too much, but part of me wonders how I could ever say no, how I could ever deny someone with potential the opportunities I have had?

I’m not a particularly political person, I’m passionate about a few things but not necessarily politics in general.  But I do hope something can be worked out in this instance, something that helps children with disabilities find families in whatever country they can.  It’s not easy either way, but I hope for the best outcome for these most needy children that allows them to succeed and thrive.

So, what if? There are so many what if’s in, well, anything… but we can only do our best to translate these into action, into networking, into awareness. Ultimately, I think that’s the only way we as a global society can change the way people with disabilities are treated and respected.