Finally, it’s here! After what seemed like forever, the chair is mostly here and it was clear very quickly, this chair is a game changer. It has taken a little getting used to and it doesn’t help that some of the parts that were ordered still haven’t come. They called to cancel delivery for the 4th time and I told them that as long as there was a cushion and four wheels, we would take it. One of the parts that is missing is the seat belt. We never really used the belt on the other chair, so I figured no big deal. Which it wouldn’t have been, except as fate would have it, on our first long walk, we had a bit of a run in. You see, since we go on walks by the ocean, there are often surfers. Well on Wednesday there was one in particular that was walking the other way with a pretty fancy short board. He smiled as he passed us and somehow as we crossed, the leash from his board snagged something on Claire’s chair and she went flying, face first, open mouth, into the dirt. It really happened the best possible way, that she flew sideways so that her face did not land on the pavement, like her knees did. The guy felt horrible and stopped to help. Some old miserable bastard riding by on his bicycle took the time to ask me why she wasn’t belted in, that sure helped things a lot, not really. As I got her back in the chair and tried to pick as much of the dirt out of her mouth as I could it was impossible to notice that she was beaming. Each time I told the story to different people throughout the day, her smile just got bigger, the girl is made of tuff stuff for sure! That night Captain Awesome routed around the treasure trove of spare bits and pieces from all the durable medical equipment we have around. He found the foot straps that we had taken off the old chair and we now have a fabulous makeshift seat belt, should we have any more run ins with rogue surf boards. For our next adventure with the chair we headed down to the Monterrey Bay Aquarium. Not long ago Chloe broke Captain Awesome’s favorite coffee cup with their logo on it, so we adventured out in an attempt to fill the coffee mug void. They no longer had the cup that we were looking for, so Claire, Chloe and I decided to make the most of the trip and play while we were there. First we hit up the slide in an effort to vent some of Chloe’s unending energy. While she ran in circles, Claire was able to roll right up to the glass of a beautiful saltwater tank, she so loved being able to see the fish up close. I hadn’t realized how much of a barrier her old chair was until we were out and about with the new system, but it was dramatic. If you look closely, you can see that the old chair was at an angle, so her legs were out farther than her head and she could not roll up to things to see them because of the slight tilt.
From there we went to touch the sea stars, which I could do with both girls by myself since Claire could reach while still in her chair, it was amazing. Since my journey with rett has driven me to insanity, we journeyed a little further to the other side of the aquarium to the drifters exhibit. At the entrance to the exhibit there is a huge tank in the ceiling with sardines swimming in circles. For the first time, Claire was able to move her head all around to take in the full scope of it all. Even Chloe stood still to marvel at the fish in the ceiling and as I watched them both turning their head to look up, in a completely similar fashion I almost lost it. I have found that people do stare more when you cry when your children are behaving well and with that thought I was able to take a deep breath and just enjoy it. The head turning and the enjoyment of the new wheels didn’t stop there, I can’t believe how much more she is taking things in at her new and improved viewing position. In addition to just the improved angle, this chair seems to have given her a bit more confidence. People seem to see her as a little girl a bit more, they tend to be more apt to wave and say hello now that she is in a wheel chair. I forget how people just aren’t familiar with our weird and intricate special needs world. When they saw her in the big stroller I don’t think they knew what to say, but a little girl in a wheel chair for some reason, as strange as it sounds, is much less intimidating. I will leave you with one more picture, it makes this point well, she could never lean like this in the other chair. So if for any reason you are looking into a chair for your daughter, I urge you to look past the stroller looking chairs. This chair does have a flip away head rest and once the seat belt gets added, she can use this on the school bus. It is lighter than the convaid that folded and fits easily into the back of my car. It also comes in a lot of cool colors, which I desperately tried to convince Claire are better than pink, but you can see that didn’t work. My only regret is that we didn’t do this sooner.