Boxing Rings and Rollercoasters


First, let me say- Parents of special needs children get sucker punched on a regular basis. Not from schools or insurance companies or any myriad of support systems that are supposed to be there-those are fights we expect when we step into the ring. It’s the moments that just slam you back to “what if land” or “what I wouldn’t give land” or “I remember land”.  Like children playing, or singing, or graduations and proms. Like two year olds helping your 22 year old pick something up, or only three fingernails painted because her hands wouldn’t keep still, and those three smudged, well because her hands wouldn’t keep still. And today I got sucker punched a bunch.

I took Katelin to the nearby Discovery Science Center. She loved it. It reminded me of the Children’s Museum in Houston that we went to during the NNZ trial. It had a vortex exhibit… the ones where you throw balls in and watch them roll faster and faster as they get closer to the hole. Some people may remember the experiment I did. During Katelin’s baseline testing visit I took her there, to the museum, and had her try to throw the balls in the vortex. I took her back during the trial, and after being off meds/placebo.

This is a compilation-the first “roll” is baseline, she just sort of lets it go, next during the trial (striped shirt), then off meds/placebo (white sweatshirt)

Today, she was just like her baseline and post meds/placebo, slowly, hesitantly, barely just letting the ball slip from her hand. Bam. Sucker punch. I remembered how she could just throw those balls in…once.  But then we went to other exhibits and the block station made her so happy and placing the beach ball over a tube shooting out air, sending it high in the sky, that made her so proud she clapped her hands. Afterwards, we went to the mall and I put makeup on her, oh how she beamed in the mirror. Ok, I could breathe again and the pain was going away, but then…

We went for a walk and I heard “weirdos” from a small group of kids. Bam. Again. Just little kids, but they sure packed a wallop. So I stopped. I said…Weirdo is not a nice word, you know. You don’t know it, but once she was just like you when she was little. She could talk and play and she’d give anything, I would give anything, if she could be like that still. It’s not her fault how she was made. I told them she has to work so hard just to say one little word or take a step and be so brave to come outside, wearing her helmet for all the world to see. They didn’t have to be afraid of her, she would just love to be their friends and I pointed out things that they were sure to all like-going to the park, swimming, going on the swing. Please don’t make fun of her, I said, she can hear you, please don’t hurt her feelings. And they asked some questions and it turned out ok, but as I walked away, I started to cry, even though I’ve told her story so many times, telling it to children, children who got to be just children, who could run off and play, tell their mom what they wanted for supper, where it hurt when they weren’t feeling well, who would grow up and go on a first date, get asked to the prom, get married, get walked down the aisle or stand there nervously waiting for some precious girl who said “yes”, well it just hit me hard. But then…

We walked to the store, and Katie put our things on the counter and smiled at the cashier, all shy and giggly at such a cute boy and when we came home we chilled out on the couch watching silly videos and my girl fell asleep on my shoulder. That’s when I could finally look at my emails and saw an update from Neuren.  And, I could breathe again; the pain subsided. All is well, all is on track.  See: Chairman’s Address to Shareholders

rollercoaster.jpg 2The tracks of a rollercoaster twist and turn you, flip you around, upside down, give you a rush and scare you. Sometimes you feel your heart in your throat or your stomach is full of butterflies. And when you stop, you’re not always sure if you’re more relieved  that it’s over or ready to get back in line. All I can say is I may not like all the twists and turns that shake me on this ride Katie and I are on, but there are great moments I wouldn’t trade for the world. But, I would like it to stop. There are other rides I’d like to go on now and I’d really like to step out of the ring, but I won’t do it by throwing in the towel. So, bring on Phase III. Looking forward to 2017.














This entry was posted in Neuren Pharmaceuticals, Rett Syndrome, Trail to a Texas Trial, Trofinetide and tagged , , , , , , . Bookmark the permalink.

One Response to Boxing Rings and Rollercoasters

  1. Linda E. Williams says:

    Hi my friend,
    I love feeling your words; sets the world in perspective so well. Each of us needs to keep our world in perspective; be it to enjoy moments of pure bliss or to survive painful arrows slung at us through peoples’ unawareness of our realities. Either way, it’s important to take away a positive memory of fun and sadness, learning each day what we need to do to blend the two and keep in step with real life. I pray you have a good day today–living one day at a time, or, when necessary, one breath at a time-never losing sight that the road ahead will one day bring us the answer to our prayers. Missing you. L

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