On the Lines

Parking. When Claire was diagnosed with Rett syndrome we were given two forms. One for a disabled persons place card, the other for Make-A-Wish. Truly. At diagnosis the extent of what the genetics doctor had to offer was some help with parking. That was it. We have come so far. I am glad that when families are diagnosed now, there is a lot more information, on trials, therapies and so on, but that is for another post.

The funny thing is, once you get the pass for disabled parking, as much as it is meant to help, it has come with a new awareness of how little people pay attention and an amazing amount of frustration.

I’ve had to ask people to move too many times to count when they have parked on the lines, making it impossible for me to get Claire in or out of the car. Once the president of our old HOA damaged three body panels of my car after using the lines next to the disabled space for loading, that was a joy. Somehow, people really don’t know. I honestly believe that people forget that those spaces serve a purpose, they forget that people in wheel chairs go places and need the extra space.

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I took this picture when we were out to lunch. When I discussed my frustration with the owner, they in all honesty didn’t understand why I was upset, they thought it was for loading. Here is the thing, when I see a van parked on the lines like this, it hurts. It feels like somebody saying you don’t matter, we don’t care that your kid is in a wheel chair. I know that isn’t how they mean it, but it hurts, it is frustrating and it evokes such a strong emotional response for myself and many of the people I know that depend on these spaces when they go somewhere. It’s a small thing, but it is important.

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Recently, we stayed at the Hyatt Regency Monterrey. Everyone was in a great mood after a fun day at Laguana Seca watching the World SuperBike guys practice. At check in the girls were given smores kits, everything was going great, then we went to park and go to our room. Sure I was disappointed that the spot was taken, but look at this sign! It is perhaps the most glorious sign ever. It might not look like a lot, but to me, I felt seen and it felt like the hotel cared that Claire, or somebody like her, might need that space. With this sign they captured me for life. I want to come back here for Thanksgiving or Christmas, I loved being where I felt we mattered.

Later that night, the four of us went out to the fire pit to make good use of our smores supplies. There we met a family that had three young kids, one of which was a wonderfully spunky and boisterous little boy with Down Syndrome. There was no discussion of diagnosis or special needs, I shared my wipes and we had fun together, sharing stories of our fun that day and gazing into the fire. As we were ready to go, another family joined. The mom was in a wheel chair and they didn’t have any marshmallows to roast. I took the stuff that we had left over to them. They didn’t speak English. Miraculously, the other mom spoke Spanish and was able to explain how to make a smore. It was beautiful. Nothing was said, but it was known. Everyone felt seen and cared for in that happy moment.

It was the antidote to all the crazy that has been in the news, so I thought I’d share with you. There is so much good out there. Life is so beautiful, even with wheel chairs and genes that are a little off. It’s not perfect or easy, but I can’t believe how truly wonderful my life is and I am trying to soak in the good as much as I can to get me through those times that the inconsiderate people block in the disabled space and genetics make things more complicated. Keep looking for the good, it might catch you off guard but it’s out there.

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