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?

A-Z Disability Challenge | L : Life Lately

Hello!

It has been a while since my last post. Thankfully we are at the letter “L” on my A-Z Disability Challenge because instead of doing what I had planned I am going to change it to a Life Lately post. I hope you are all good right now so let’s get into this!


As you may know back in June, I talked about the fact that both July and August were fast approaching and I had begin to worry about how I would respond to them since I went through a huge depression spell last year and was basically miserable. I felt like I really needed to keep myself busy with blogging, in hopes that my brain wouldn’t be reminded of that time. I had lots of cool topics I was talking about on here and then one day I just got really bored and decided that I didn’t want to write anything. I just wanted to enjoy myself for a few days–which slowly turned into weeks–and I think I realized how happy I have become lately!

Since we’ve moved into this house I have been getting out of my room a LOT compared to the other house. It was a pretty small home with tiny hallways and caved-in floors. When I officially moved in at the beginning of January, I just thought I would continue my routine of staying in my room majority of the time, but my mom had other plans. She was given this nice kitchen table and wanted all of us to use it, but I thought we would only use it for holidays, so the fact we actually sit together and enjoy our meals as one, is pretty surreal!

One of the things that I have really enjoyed is when my mom is home from work. She’ll put me in my wheelchair and let me have breakfast or lunch at the table. If she has to cook or has something else going on while I’m in there with her, I’m usually looking out the back patio doors and counting our cats. I’ve figured out that both Tavis and Felix are the ones who are out there the most in the mornings. However, if nobody is there I try to find ChiChi on the couch. She likes to cover herself with many blankets and try to get some extra Zzz’s but sometimes when I see her peeking through the blankets, I can’t help myself I like to boop her on the nose and if she gets out of her little cave, I crunch down to attempt to get a kiss, trying not to hurt myself in the process, but even if that happens I will still do it because I like getting kisses from the animals.

I like to stay in my chair for as long as possible and even keep my mom company if dad is still in bed. We have some great chats and there are times where she’ll put me to work, and I’ll mop the floors or break up boxes to put them in the trash. I can be very handy at times, just let me pour pasta inside a bowl, apparently I have lost my touch.

She likes to read Closer Weekly magazines, and honestly I enjoy some of their articles too, but in the back of it they have an entertainment inspired Word Search you can complete, and I absolutely love working on these puzzles! My papaw loved Crosswords but I always found them to be a little difficult – to be perfectly honest he also had issues as well especially if they were about a lot of the recent pop culture stuff. It was interesting because there were times where he would ask my mom or us kids if we knew what the answer was; unfortunately there was hardly ever one I knew on the spot! So, that’s why Word Searches are my thing, but they weren’t always though, I have had trouble finding the ones going vertical or backwards in the past, but I have gotten better at them now!

I have found out that I am at the perfect height to reach my foam box while I’m sitting in my push chair. At the beginning of the summer, I went back to coloring again. Before my nana moved away she gave me these crayons that you can twist to keep them sharp, everytime I use one I immediately think “where were these things when I was in school?!” They’re very handy! After two days, I grew out of that because I tend to grip them too hard, I was literally causing my toes pain as I continued so that sucked!

After Nolan had his birthday party in June, he was given a lot of new toys, and there were so much that we were given a chunk of them to keep in his room. He has a new love of Hot Wheels now so I am even more happy that I purchased that city rug for him, because he can really put it to good use with these little cars! What is funny though is that Brandon and I, we were perfectly fine without it. They move better on the wood floors and since there is so much space in the living room, they can go pretty far; Nolan gets a big kick of it. Every time I ask for a car, he’ll give me one and put it in between my toes so he loves it whenever I play with them too!

One day I got the idea about playing with these little cars in his room. At least, that was my original plan, but I ended up changing my mind when I figured I could play basketball instead. They also left this large bag of these brightly colored plastic balls, and since he has like two baskets I thought this would be kind of cool, and I was right! I love being active and the fact that I am using both of my legs to do this makes me happy and I enjoy having fun with playing again, it has become a blessing in disguise. I wasn’t doing too good at throwing them in the basket at first, but I am slowly getting better at it as time goes on! Practice makes perfect.

I am still trying to get Nolan into basketball. So, I am plainly trying to get better at my shots so that maybe it’ll inspire him to play along with me! He does know how to dunk because he has a basket at his house that he pushes a basketball, soccer, and whatever stuffed animal is nearby into it. At least he gets the idea so that’s a plus! Maybe when he comes over on Christmas, he can watch an NBA game with me? It’ll only happen if I can get him to crawl (or walk as he is trying to do it!) into my room without anybody knowing he’s gone. I doubt that’ll happen as Blondie and papaw freaks out about everything he does!

What helps you relax or get you out of a funk? Have you learned anything new about yourself or a hobby this summer?

A-Z Disability Challenge | H : Asking For Help

Yes, I am going to try to get back to my A-Z Disability Challenge! I have been kicking myself for not doing it for so long but I think I am finally ready to start on it again. If you have missed any of the other letters, I have them at the bottom of this post so you can check them out afterwards.

This week I will be talking about the notion of asking for help. Although it is a fairly popular topic of other disability bloggers and YouTubers out there, I think it’s a good idea to have many pieces out there for people of different generations in multiple point of views to help people learn more about what they should do if they ever found themselves in a situation where they want to help, but are not sure on what to say or do at the time.

I will be firstly talking about why a disabled person will probably never ask for help. It’s honestly a mixture of things, I think the most important reason is because we don’t want to look weak. We actually love doing things for ourselves. Every ounce of independence we get, we relish in it for as long as possible. However, the day it runs out, it is a heartbreaking day. For example, after I had my back surgeries in 2002, I wasn’t able to jump back into my regular physical therapy, we did a lot of moving around and my body wasn’t used to all of that yet. Our main objective for me to learn consisted of how to transfer from wheelchair to couch, chairs and toilet. I finally re-learned how to transfer again two years after I recovered. Unfortunately I never learned how to get on my bed by myself, which was probably the biggest blow out of the whole thing. I can scoot down off, but I do not have the strength to pull myself back up anymore.

If you were raised like me, you basically had full rein on what you could do, and it made you feel “normal” for once. We love to challenge ourselves in our daily lives. and being able to learn something new is the biggest drug we can seek out. Unfortunately, some of these challenges can be more complicated with some of our limited movements. So, we can sometimes be slower than not only we would like, but for other people too. I’ve realized in the recent years is that our families are usually the ones that have the lowest points of patience of the bunch for some odd reason! They don’t like to see us struggling, especially our fathers, so they want to “help” us. What they don’t know is that they’re doing more harm, as it is better for us to learn how to complete a task than leaving it for someone else.

I do understand the reason why people feel like they should help us. Even though you should always ask that person if you can lend a hand, we will try our hardest to make sure to let you know we don’t need you. Something you may not know is that we have a huge sense of pride within ourselves. Giving up on anything that lets us be like everybody else is the worst thing possible ever. So, when we can’t finish what we started, we will reluctantly ask for help. We will not be very happy with ourselves, but at that time it will be something that needed to happen.

I have always had a difficult time accepting help. One thing that I despise is when someone close to me will automatically do something for me, when they know I can clearly do it. I love trying to find new things to do with my feet, nothing really makes more happy in life than discovering new ways to do ordinary tasks around the house or out in public, but it does make people nervous, they think I’m going to get hurt, so they try to dodge that obstacle as fast as they can and yes, it is very annoying but you have to let it go and hope for the next time. You have to realize your patience is not the same as others so in a way, I think both sides need to keep that in mind when it comes to these things. It also ultimately depends on them on if they can learn to grow to trust you with the various tasks you know or learn later in life..

Here are previous letters and their links if you want to check them out now!

Arthrogryposis Multiplex Congenita | Building Trust | Be Truthful To Your Children | Dear Disability Community | Events | Treat Your Friends The Way You’d Want To Be Treated | Long Term Goals

Life Lately | Hello Spring!

Howdy!

Since this is the last full week of April, I thought it was only right to blog about life.

Last week I mentioned that it’s been a whole month since I had blogged at all, and I don’t really know why I decided to do take such a long break but it happened. This year I manged to come up with three separate series, two of them are on here and the other on my blog’s Facebook page. I did a lot of work to get everything organized that I think I started to expect a lot of myself that the pressure mounted so much that I began to feel overwhelmed by everything, but once I stopped blogging for a couple of days, I just all of a sudden felt better about things and I didn’t look back.

I’d like to say I got a lot of other things done while I was on my hiatus, but I didn’t. I think the only real thing I worked on the whole time was my “name pairings” Pinterest board! I didn’t take advantage of the time off to read or anything so that’s one thing that makes me angry, because that would have been a perfect hobby to do! I didn’t even watch that very many movies or TV shows either. I was pretty much consumed by Pinterest! It’s so sad to say out loud and of course read it on here too!

One thing that I’ve been really enjoying lately is our weather. Well, technically we had a few strange days where it was producing late spring weather, where the temperatures were like in the 60-70’s and unfortunately, our new house does not have an air conditioner yet. So, for a large number of days we had to rely on opening our windows and leaving our fans on all day long just to cool down. For 4 days alone, my room’s temperature was around 78-80 degrees! At night, it was miserable because when I have my fan pointed one way, but if I wanted to lay on the other side I was hot as hell! I actually spent one day completely in a short sleeve shirt with a pair of very tight shorts. On the day I wrote this post, the temperature had calmed down so much that it was 39 degrees outside! It was also very comfortable in my room too!

A feature about our house that I am starting to really enjoy is I get to see the morning sun. I’m such a nature girl at heart, so the morning sun makes me extremely happy! Now there is one bad thing about my room. Since it’s placed so far back, I am around a lot of trees so whenever it storms, I am in a constant state of paranoia because we have some very tall trees in our backyard and we have had some limbs crash down in various places in the past. One large branch was responsible for tearing a hole in our trampoline! So, being surrounded by trees has its bad notes too.

I have been spending a lot of my time hanging out with my nephew Nolan. He’s grown so much since my last update. I have thought about creating another one, but it’ll be his birthday in about two months so I have decided to hold off until then, but I doesn’t mean I can’t share anything with you though.

Do you remember when he was like three or four months old and he was obsessed with my hands? Well, now he’s starting to fall in love with my feet! When he was around two months and he used to sit in this seat, and he would watch me get a drink and put on my blanket – I literally told him once that I would treat him how I do that. At seven months old, the little goofball learned how to put on his own blanket with his feet! He’s such a smart cookie. He loves grabbing things with his feet, and I’m surprised with myself because I figured I would be offended by the fact he was using his feet to do stuff, but I’m not. I’m just proud to see him paying that much attention to what I do because I think it’s just part of my daily life, I don’t like to think of it as a special thing, but he’s made me think about it differently now.

Whenever he was really little though, I was often upset that I wasn’t able to hold my cutie pie (my nickname for him!) the only way I was allowed to be up close with him was when mom or Blondie would bring him into my room, to take a nap on my bed. We would wrap up in fleece blankets and while he got to sleep next to me, I was making mental images of my little buddy. Now he’s somewhat mobile, since he can army crawl around I haven’t had that one-on-one time with him. Well, he recently exchanged that with giving Auntie Meggie many, many hugs! Yes, he is a big hugger! I love it. In a way, I think that makes up for the fact that I couldn’t physically hold him as a itty-bitty baby too.

Well I think I’m done for now. What is your favorite thing about spring? What is your favorite activity out of your normal routine that you like to do?

A-Z Disability Challenge | A : Arthrogryposis Multiplex Congenita

Howdy!

So, last week I basically announced to the world that I was starting my own challenge. I have created this challenge to talk about disability topics in alphabetical order. Some will have a personal touch, like today’s post will discus my condition: Arthrogryposis Multiplex Congenita. The others will be educational and/or opinion pieces. I wanted to give you a good mixture of different themes that everybody, whether you have a disability or not, would understand a little better.


Honestly, I just wanted to write this for people who are really curious about my condition, and who are maybe a little embarrassed or shy to ask me questions up front. This will hopefully help you understand a little more about what it is, what areas it affects, and some of the stuff I’ve had to learn to do, to adapt to my surroundings.

Arthrogryposis Multiplex Congenita is simply as a joint condition that can affect many areas of the body, but it is formed in the womb. Since my joints of my arms and legs are limited to movement, the muscles never really developed, thus why they are really skinny. My arms have always been bent at the elbow, I’ve had many therapy sessions to help lessen the tension in my arms. My elbows will never unlock and I’m okay with that. I’ve always had insecurities with the fact that my hands just lie there. I was never able to use my fingers, but there are a lot of people and young kids whose hands like mine and they can actually write and draw with them. I don’t know what actually possessed me to use my feet, but it was definitely a day to remember for my parents that’s for sure!

I am not able to walk like everybody else. I have two very different feet, and neither one are able to lay flat on the ground, so whenever I did experiment with walking, I usually walked on my tippy toes instead. I grew up rolling and eventually scooting around on my bottom. The only way I can explain for the rolling is because since I wasn’t able to move my arms on my own to get them out of the way, I think my family was afraid I’d get rug burn, so I just started rolling around. Thankfully, I was so small that I could fit through most doors and hallways. I can’t give you a definite age when I switched to scooting but it had beenĀ before I was four years old, because I was going to a special school and honestly I needed a better way to get around. I was pretty slow, but I didn’t care one bit. I use to chase my sister and cousins around my grandparent’s house all the time! Of course, for long distances, I was usually carried around but when I was four years of age, I got my first wheelchair and then the roles were reversed and everybody had to chase me!

As I continue to get older, I am in more and more pain. The majority of it is around my back, but the rest of it is in my hips and knees. I was very active as a child, but as an adult, I’m a pretty-stay-in-one-place for a long time. I can sit in the same position for close to three hours and power through the pain in the sides of my hips in order to get work done. Don’t worry, I was not in any pain while writing this post! I feel like I should be considered lucky with the pain in my knees, because I have family members with different types of arthritis, so I always know it could be worse. My nana goes old school and just rubs Vicks on the affected area, I’ve tried talking to my mom about going that route but I agree with her of the overwhelming smell, so I take painkillers to ease the pain away.

If you have any other questions, I will be doing a Q&A later on in the challenge, so just leave your questions below if you’re curious about anything.