It’s Bad, but it ain’t ALL Bad

Tell me-Is she not the same as any other child happy to be on a swing?Let’s just put it in the simplest of terms…Rett syndrome sucks. It sucks bad. And,  a lot of the posts I’ll do this month will be about how bad it sucks. But, today, because there is so MUCH horribleness in the world this week. I’m going to tell you about when it doesn’t. And the thing is, some people will read this and go boy that really sucks! Meanwhile, I’ll be laughing my head off, because, you may not know this, but Rett syndrome parents and loved ones have a damn weird sense of humor. We need it.

First know, We will do ANYTHING to make our kids laugh. We will make fake fart noises, we talk to their favorite stuffed animals/toys. We try ventriloquism, badly, with Barney, or whatever. One of Katelin’s favorite things was hearing her brother get in trouble when he would flick the light switch on and off when she was in the bath, so even if he wasn’t there, I’d flick the light switch and yell and him…Sean, you are so ANNOYING!! Hysterics every time. So, basically, we get to act like complete idiots and stay very connected to the kid in us.

Katelin loves when things break by accident or fall. I have a  video on my phone of her sister, when it plays I will “accidently” drop the phone and say “Oh, NO! Katie I dropped Debbie! Is she ok??” Giggles galore. She thinks it’s funny as hell when I blow bubbles in her chocolate milk and they come up through the lid of her cup. I will do that anywhere.

And that’s just me, Katie is in a class of her own (which she probably actually shares with her sisters and brothers in arms). Like the time she stole nachos off some strangers plate at the fireworks when she was about four. I laughed so hard tears came out of my eyes.

And then there was the phase she went through were she had a thing for shoelaces. Like…I mean a real thing. She’d crawl over to strangers feet and start chewing on their shoelaces. I remember one well dressed man reading a newspaper, I went to go get her and he said…leave her if it makes her happy. So, you see it isn’t all bad, sometimes you meet people with the hugest hearts.

Oh, and the stories we tell each other no one else will understand that send us parents into fits of laughter, choking and crying that would send other parents running from us…these usually involve poop in some way.

Don’t feel sorry for us or pity us. Oh, sure, we appreciate very much when someone reaches out to us. I’ve had people just come up and hug me in public when it’s one of the times that it really sucks. Strangers have given me tissues, helped me with my groceries and one time in particular I’ll never forget….

I flew to California to attend my step-daughter’s college graduation-36 hours total…I get a call on the way back, from my oldest, Katie was in a rage. So there I was for an hour singing to her on the phone, every Barney song I knew over and over, and trying to arrange for her regular aide to get there, occasionally asking things like “did the dvd player break? She pushed the TV over? Did she break the window? Is she hurt?” And somewhere in there it was time to board. And then, a miracle…without a single request on my part during the entire time of what happened next….the stewardess comes to me and whispers…you can board last. I nod. Time passes, it’s time to board. The steward comes and grabs my bags, they lead me to my seat, passengers put away all my luggage (I’m still singing), the stewardess comes and says… the captain says you can stay on the phone while we taxi out…I nod, tears now…my battery is dying…and just like in the movies, right before my battery dies her regular aide gets to the house and the plane is beginning to take off. I hang up. And hands from across the aisle, the seats near me, reach out to hold me. And no one ever said a word, they just KNEW.

So, yes Rett syndrome sucks, but then there are many times words aren’t needed, even in the “real world.” And there are many, many times because of Rett syndrome you see true beauty in the world so many others will never get to see.

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11 Responses to It’s Bad, but it ain’t ALL Bad

  1. emilyjosmom says:

    Love this, Mel! I need to write down our family’s stories before I forget…they help us get through the tougher times 🙂

  2. Linda E. Williams says:

    Please please write a book like that! People need to understand this wretched disease IS 24/7, but is better than no hope…The laughing is a joyous release for a moment or two from the on-going surviving. Love you lots. L

  3. This morning I get out of the shower. I’m dripping wet and there’s Risa, giggling and shoving a tub of butter in my face cause she wants toast. I laughed and told her to go wait for me. She sat patiently on the bed, holding the butter, while I got dressed. Lol.

  4. mdfcapecod says:

    Did someone say “fake fart noises”? Love you guys!

  5. abokrose says:

    Mel, let’s laugh always.

  6. This was beautiful my little sister is 18 and she has Rett syndrome x

    • melelllan says:

      Did you know there is a Facebook group for siblings? My Sister has Rett syndrome. I also have a post called October Siblings you might like to read. It’s not easy being the sibling of someone with Rett syndrome.

  7. melelllan says:

    Here’s the group name, only siblings can join, I can’t add you… My Sister Has Rett Syndrome

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