Disabled Friends, We Are Not the 'For Worse' in Our Parents' Marriage Vows

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I'm going to get really real here and say that our birth (if you're just tuning in, I have the best twin.  I'm sorry, the votes are in, and I do) was not talked about.  Especially not by our parents.

So when I see nondisabled parents blogging about their kids, and there is that marked difference between how they see their nondisabled child and how they see their disabled ones?  I hurt.

I hurt, first and foremost, for their children.  

But I also hurt for myself and my community at large.  For the huge number of us who must live with, not just being 'welcome but unplanned' but 'unthinkable', 'for worse,' the most awful thing parents can think of.  (For me, being disabled from birth, comments like those make me feel like I am the worst thing that could possibly happen to a nondisabled parent.)

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But hold on.

Remember how I said I have the best twin?

[Image: Tonia, left, and Tara, right on a bench outside our apartment, age 3]

She does these unbelievably thoughtful as hell things when I don't even know she's doing them.

On Christmas Eve, she ventured, seeming nervous.  "Say that I wrote something for you...but it's not exactly a Christmas present?  When would you want to read that?"

I picked a day and she sent me a Google Doc - to something she'd been working on for over a year, even as her customer service job "sucked her soul out," pre-pandemic.

What she gave me is personal, and I'm not going to share all the details of it here, because it's something that's just for us.  But the first thing she gave me was this letter to my newborn self.  She welcomed me, affirmed me, and made sure I knew that I was wanted.  

She was explicit about this in ways I have never heard said about me.  And so, (with Tara's consent) I want to share this welcome letter with you, disabled friends.  So that if your birth was traumatic like ours, you can know that your community loves you, embraces you.

You can know, like I know now, that we are not "for worse" - we are welcome here.  We are loved.  And we are wanted, by at least one person.

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October 8, 2019 - To Baby Tonia:

Hi sweetheart! What the hell, right? I know you're here way earlier than you expected. But don't worry, love. I'm here too. ❤

This is a place where a lot of scary and ouchy things will happen to you. I'm so, so sorry for that, babe. You did not do anything wrong to deserve the pain. Even while we will not see our biological family very much, we are in the same place together - for awhile, at least. And I'm so glad I can exist around you, and be family for you when no one else could or would. 

While a lot of scary and bad things happen here, there are also people here who love and care for you a lot. Their faces light up when they see you. They wonder at your daily smiles, worry about your struggles and love to play with you!

Having to go through this crucial part of your life largely alone was in no way okay. You did not deserve this. I have to believe that even while we were apart, though, that my heart stayed with you. The whole time. That in some small way, we stayed together. 💛💜

I love you. So, so much. Hold on, okay? Sister Day is coming. 👭

❤,

Me

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