A-Z Disability Challenge | N : What I Want To Bring To Nolan’s Life

Before my nephew came along, I was very specific on how I wanted to be represented towards a young child. I had some help creating these thoughts after my neighbor’s three year old daughter started to act like she needed to help me out, although everybody (including myself) thought it was a sweet gesture, it really became clear that this little person looked at me and she shoul help in anyway she coul, even if that meant by holding my cup close enough to face to take a drink.

I understand that she was only doing it to be nice, but she really was doing it for two reasons. One, she getting praise for doing something so benignant and the second is she saw everyone else around her help me out from time to time. I always felt like asking for help was a weakness, so to see this sweet little girl automatically do this, really messed with me for a long time. Although I think it is important for young children to understand all of the disabilities in the world, I also believe there is a way we can teach them about respecting the boundary.

Nolan isn’t at that age where he was can physically lift and carry my drink around to allow me a sip now and again, but he does understand that Aunt Meghan is very different from everybody else.

He loves cars and trucks like every boy does, and whenever he comes over it is one of our favorite things to play with because it is just small enough to put in between his hands and my toes and I can pass it back to him if he wanted to use it. All I have to do is ask for it back and he will either give it to me or exchange another toy for it instead. He’s a stinker like that! He is getting familiar with putting things in my toes rather than my hands; he actually never puts anything in that area which has really surprised me but he was a quick learner as a baby that he understood fast I had certain things “wrong” with me.

Since he was about 10 months old I think, he started to become obsessed with shoes. At first, it was purely just my sister’s flip flops and sandals that he would attempt to put on, but recently he has tried to stick his feet into her sneakers. There is nothing more cuter when a small child tries to put his foot inside the opposite shoe! I mean, this kid’s a genius, he knows how to grab his foot and move it inside of the shoe without really wearing them a whole lot in his short life. I mean, the first time he ever wore shoes out in public I think was on Easter!

The most recent thing to happen was the day when I decided to put on one of Blondie’s shoes, to see what he would think to see me in them. As soon as I got it on and showed off my incredible feat, he outdid me. He grabbed the other one and put it on his hand! This made me realize on how much he pays attention, but the fact that he sees my feet as my hands! I did not expect that reaction but I was very humbled by it at the same time.

I think about the future a lot, and what’ll mean for him if, God forbid, something was to happen to my sister and she wasn’t able to take care of me anymore, the responsibility would turn to him. There is one thing that I will never allow to happen.and this is it, I will firmly stand my ground and tell him that it is more important for him to focus on himself. If I can get this through his mommy’s head I would, but she is far too headstrong for this conversation apparently. Again, I understand the reason behind this but she has been a protector and a great person to take care of me in my time of need but between the two of them, I don’t want them to think they need to continue on that road, you know? There are great places and nurses that can fulfill that promise just as much as they can. I never want to become a burden to anyone, let alone my sister, brother-in-law or Nolan.

What do you think about this? Am I being too harsh about this future situation or is it something you can secretly agree on?

Baby Steps

1d9614a9409c397c6bb64708ae23cc2a

This year has been about finding different things to do. It didn’t matter what it was, as long as I felt comfortable getting prepared for it and allowing God to guide me closer to it. Even though I don’t think he really wanted me to experience Plummer. Every year I try to make it better than the year before and I think I succeed in making it that way this year. It wasn’t about going and experiencing things, it was more about finding things that I could while being in my wheelchair and being around my parents, seeing if we all could get through it in one piece. We now know that a tent with three people on an air mattress doesn’t work ideally, but camping isn’t impossible. Experiencing Plummer was exciting and new for all of us. I think it showed my folks that I’m my own person, even in the wheelchair. There’s not very many times were I feel independent and an adult when I go out and about with my parents. I’ve seen my other friends casually go out to a restaurant and have a drink or two with them. I still think I have a bit to go with them to get to that comfortable stage, but I don’t think it’s an impossible task.

Life is all about taking baby steps. I’m all about taking baby steps. I’ve been doing it forever it feels like. I’m in my twenties and I’m just now figuring out how to do simple things like open a can or help sort out laundry. My nana and I have been religiously trying to find more things for me to master. That list of things I can do with my toes were kind of small for most of my life. Since using my toes as my fingers, they’re not your normal toes. I’ve seen everybody’s feet before in my family, nobody can separate their toes as far as me. I don’t know if that’s something to be proud of, but it’s an interesting fact! With the separation of my toes, I can extend them a bit to grip things. If I was to go on and explain the ways on how I grip things it would just confuse the crap out of you, so I’m opting out of explaining it. Sorry! I’m been all about sorting in the last two years. I help my nana out by doing the laundry. She has their clothes go over to our house, my mom does them. I just help with the organizing between the whites and darks. I’ve been the one to enjoying sorting out stuff, even when it comes to cleaning! Trust me, when my nana had me arrange her desks in her office. If I had the patience to do it I’d organize that sucker.

There are three things I’ve learned how to do this year. You already know about the pop can surprise. I’ve even tried to open a soup can as well, but those are a bit harder to pull. Even with the accessory I’ve been using. If my nana and papaw have trouble opening it, there’s a pretty good chance I will too! The less exciting achievement I’ve recently done is help with my mom and fixing her tag of her shirt. There’s not very many times were I get asked to fix something unless it has to deal with an electronic. So when my mom walked into my room asking to tug in her tag into the back of her shirt. I was a bit concerned because I’ve never done this before. I had to lie down on my bed while she sat on the edge of the bed. I tried to only use one foot first, thinking it was be easy to do! Nope. I think it took probably six times to do, but I never gave up on it. I had to put my right foot on her back for some odd reason that ended up working, it didn’t even “help” with grabbing it and pulling it inside her shirt, but the support of the foot helped my back a lot. I vaguely remember my mom feeling proud of me but I didn’t want to do that ever again!

The third was performed a little bit after figuring the pop can. My nana can sometimes get her trash bag out of her trash can, my papaw is basically in charge with putting that bag in their bigger can outside for the people to come pick it up. If I’m there on the day she takes it out, then I get the joy of putting on a new bag. When I say “joy” I actually mean it. This one is a lot of fun compared to the other two. At times, I ask for help to separate the layers out and splitting out the bottom of the bag so I can get it inside the can without falling out of my wheelchair. I can do this part on my own, but I find it better to have some help with I’m in the push wheelchair because it’s one of things were I have to use both feet to accomplish the task. When everything inside, I first pull the sides of the trash can. Once I get that part done, I have to somehow manage to keep those ends in place while I go to pull the other side. This is where my right foot and what little calf muscle I have in my leg is placed to secure that section. My left foot does the rest unless tugging doesn’t work with just one foot, then I make sure the first side is fine and then I use both feet to push the bag onto the last side. This usually takes two or three tugs before it actually works.

1601436_823259131071752_4350257148252686412_n  10433122_823258891071776_3043101810242790036_n

I had my nana take these pictures the other day. By the time I got done with it, I forgot to have her take a picture of the last position. Apparently I’m a lot faster in my electric wheelchair. If I a stop watch, I’m pretty sure it didn’t take me more than two minutes to get everything figured out and secured in place. I do take my time with it some days, especially making sure the red outlines are low enough over the edge of the can as possible so it doesn’t pull over when something heavy is thrown in. I don’t know what kind of experiences and tasks I will learn once the new year starts but I’m kind of excited about it honestly. At some point I’d like to be able to do some sort of cooking or baking thing. I know I’m going to need help, I mean I can’t necessarily lift a bowl or pan in and out of the oven. I mean, even I know that’s not going to end very well! As long as I don’t burn myself or the kitchens, I might be okay! Who knows, but I’ll keep taking baby steps for now!