Williams Syndrome Wednesday: Alikes

Have you given thought to the change in how the people see ability? When I was growing up, people who had differences, physical and developmental were kept away. They went through school in different classes. They weren’t playing sports at the same venues or in the same dance classes I took. Every one who was with me was like me, and everyone who was not like me was somewhere else. This magnified the all the ways we were different.

When I learned about Obi’s condition and every day since I’ve fretted about all the ways she’ll be different. From her peers. From her brother. From us. All they ways we won’t really be able to understand what she’s going though. All the ways other people will see how she is not the same.

This week I had an epiphany. It was Facebook’s doing. You know how everyone is sharing those Facebook Anniversary movies. Well, watching mine I had the first real moment of realizing how much Obi looks like her brother. Not just in features, but expressions as well.

I’ve spent months and months noting how much she looks like a ‘Williams’ kid. I was so blinded by this ‘difference’ caused by the deletion of 28 genes on chromosome 7, that I was completely blinded by what was happening on the other 22 chromosomes.

Despite the people at genetics telling me over and over that she is more than the diagnosis, despite loving her absolutely in spite of her diagnosis, I have been completely and utterly guilty of allowing it to overshadow other parts of her.

As soon as the light bulb went off, I was reminded of the time after my dad died.

I had this long stretch in which I could only remember him in that moment. My whole experience of him was whittled down to that brief fleck of time that was his death. At some point, (quite some time later), the shadow that had fallen over the rest of my memories of the time we had spent together lifted, and I was able to see that instant as such a small part him and me. Just a blink. Although his death was so present, so looming, I realized I needed to remember all the days he lived to put the one day he died into perspective.  After I did that, joy started to seep back into my life.

Once again, I can now clearly see the magnitude of the shadow that has fallen. It’s been a f$#%ing hard year.

Those differences – they take up a lot of time. Appointments, therapies, exercises, explaining her delays, little pity parties – all about the different.

But sweet Obi looks a lot like her brother. She lights up when she sees him the same way he lights up when he sees me. She likes to ‘dance’ with this crazy wiggle then stop and wait for you to do the same. She has my hands. She has so much in common with her dad, her brother and me. We’re more alike than we are different.

I’m gonna make an effort to me more present for those – the alikes. I need to. And more importantly, I think she needs me to.

1 Comment

  1. multitestingmommy

    February 6, 2014 at 6:46 am

    I love how you came to this realization – amazing when those “aha” moments strike!

    I’m sorry you’ve had such a tough year 🙁

    Reply

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