Wednesday, April 23, 2014

Twinhood Scrambled

Today JJ is off on an adventure with his aunt, and I have been ruminating on twinhood and disability.

I do this from time to time. Perhaps it's because I had only two months between when I found out my pregnancy was twins and when they arrived. It already seemed so hard to have twins. Then they came early and that seemed so hard. And then one had a brain bleed and that exploded my mind… no pun intended.

So I play this stupid game with myself sometimes of wondering what it would be like if they weren't twins.



What if I had just had Jaden, how would life be now? Would he still be so intense and quick to anger? Would I? How different would I be as a parent? How different would he be as a child? In what ways would things be easier/better? In what ways would they be more difficult?

What if I had just had Malachi? How much more function would he have if I had more time and focus to implement therapies and strategies? How much farther could he go if he didn't know he was so far behind that it wasn't worth trying? Or, would he have less function because he didn't have a typical twin to push him? How much do I — as a parent who has never been around children in adulthood — benefit from having a neurotypical example to show me what is developmentally appropriate?

There's no point to this debate, which is why it goes round and round in my head.

But a few weeks ago, I went to a fantastic talk from Kathie Snow, author of Disability is Natural. If I can be allowed to paraphrase, the crux of her lecture was this:

When we think about what truly matters in our life, do any of us say: "Gosh, I'm glad I have a pincher grasp."? Or: "Man, I love having a smooth gait."?
No. We don't. Because what truly matters in our lives and in every person's life are PEOPLE and EXPERIENCES. Having loving relationships and being able to participate in a wide range of what life has to offer is all that anybody wants. Both of those things are possible no matter what a person's level of function and those should always be the goal.

In many ways, this finally put to rest the twinhood debate in my head. Of course Malachi is better off for having his brother, no matter what his level of function. Of course Jaden is a better person, even if he doesn't get enough attention.

And yes, I am a better parent for having both. Because if I were the parent of a singleton, I wouldn't know what I couldn't know: that there are very few "right" ways to have a family and a whole lot of different.



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Looking for a meaningful gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs. 





2 comments:

  1. I play this game in my mind too - what if I'd just had one, or the other. This is a beautiful quote. Thanks for sharing.

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  2. Love this. Of course I can totally relate. :)

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