Monday, June 13, 2011

One Giant Step...

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Noah finally made an effort to take small steps in his gait trainer. It is still not going as great as I think it could. The seat on the Rifton goes side to side on him when he tries to walk, I really think it needs different seating for him, probably something stationary like the kidwalk offered. Darn do I feel like we made the wrong equipment choice yet again. He has the desire to try though, and is happy about making the effort. Now if only I could just make it easier for him. Of course we are having issues with shoes, but he's willing to give sandals a try, another small step, then we'll move on to regular shoes. Noah has outgrown his sure steps and therapy shoes, so we'll have to work on that soon with his Orthotist. I'm sure he could also use a new theratog suit, he just grew super fast.

We have been practicing walking out in our driveway, Noah likes the sense that he's going somewhere. Even if it's just to the sidewalk. It's curious to watch how our neighbors take to watching Noah in his walker. I would say most notice, but they try not to stare or watch, or really pay us any attention. We're kind of like out of sight out of mind, as they go about grooming their yards and parking their fancy boats. A wave or a smile might be nice. I certainly don't see a block party in our future. You would think that society would have come much further than we have with the stigma that is attached to disabled bodies.

Today Chris and I were out and needed to stop somewhere to eat and feed Noah. Of course we don't have a highchair with us that accommodates Noah, all we had was his stroller. The restaurant didn't want to let us in with the stroller. They said it was a fire hazard and against policies. I understand, I'm not trying to break the rules, but Noah can't sit in a booster seat, or any seating that restaurants offer. The manager made an exception and allowed us to dine with the stroller, it wasn't like I was lying to get the stroller in the doors, it really is the truth, Noah cannot sit unassisted. I almost wish there was a card or a letter I could carry with me that I could show someone to say Noah really has a disability and just because we don't have a "wheelchair" because he is so little doesn't mean that he doesn't have these needs.

The manager came by to ask how everything was but he couldn't look at Noah or us in the eye. I was going to thank him for letting us in with the stroller, but I detected that the "Noah situation" made him very uncomfortable, so I let him get away from us quickly without us saying a thing. We ordered the only thing on the menu Noah could eat... ice cream. But it bought us enough time to get home.

Today I actually had my head held high. I am proud of my Noah. He's doing the best he can with some really crappy circumstances. He didn't ask to be this way. It must be tremendously hard to be him, and he's trying... we're all trying to help him. So what if a restaurant manager gets the hebbie jebbies when looking at us? We're a family just like anyone else - we are just slightly different is all. But I look at Noah and just love him to pieces. How can you not just love him? He has such a sweet little soul. Those who take the time to know Noah understand that. He's more than just a body that cannot work properly.

He's been quite happy lately, a welcome change from the fitful fights of going to sleep. Now we have just the opposite. He wants to play, laugh and giggle for a long while before he's ready to say goodnight. However that's much easier on our nerves, so we let him play away as we wait patiently by him until he's ready for us to hold him to help his arms and legs settle so he can sleep.

We resumed pool therapy and it's going great. Noah hasn't forgotten the experience and has made great gains. It's small things, but giant for us, extra seconds or minutes doing something in the pool just makes us feel like he's making progress. The hippotherapy hunt isn't going well. There are no scholarships to be had. Apparently there is no money to give any out and they haven't offered scholarships in years and I'm just not sure it's possible without financial help. Therapy costs are tremendous out of pocket for us for what we are already trying to provide for him. It is discouraging not to be able to get all he needs.

"We all have a disability of some kind; all are lacking in one way or another. Saul has an injury to his leg. What if his personality was deformed? How much worse if his soul was lame? Preachers or teachers look for the good in all of us. (Bless them for doing so.) I don't see a cripple. I haven't met anyone yet who isn't handicapped in some way. So what's the big deal? Don't hide your deformity. Wear it like a Purple Heart." - Georgiann Baldino


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.