A-Z Disability Challenge | Z : Zoom

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I know I’m late on getting this post up, but I have been feeling really lazy in the past few days.

I have always been called “speed demon” because I have my power wheelchair’s speed on high. It’s crazy how much my mom thought the volume was down low while I was in school! Speaking of that, my middle and high schools were attached and had multiple ramps in the hallways. The first time I ever visited, I was probably going into fourth grade and my face lit up. I couldn’t help but race up and down those halls with Blondie and our cousins. Now as an adult, I feel like I have definitely calmed down, and to just seal the deal, the occasional popping a wheelie doesn’t even do it for me anymore. For my parents, this is a blessing and this could be a good sign for other families out there who are dealing with little speed demons at home too, but I feel like I should say that if I was in my power wheelchair for 8 hours straight and there were ramps all around, I would totally go for it in a heartbeat!

Since creating my Instagram account a few months ago, I have been speaking to other people with Arthrogryposis, and it has been really nice to discuss our stories and everything, I also love when parents will follow me too. I get a chance to watch the younger generations grow up and learn how to deal with it in an entirely different era.

There is one little girl that takes me back to starting school for the first time, making what I thought would be long-lasting friendships, and receiving my first wheelchair. The girl’s mother told me once that thanks to her brothers encouragement, she tracked mud all over their house. I could tell she wasn’t thrilled about the incident. There is a big difference between the mini daredevil and I. When I was in elementary school, we left my power chair there and only took it home during summer vacations because our house wasn’t handicapped accessible. So, I never really got to do things like this when I was younger, but this was also at a time where I could scoot everywhere so I didn’t need it too much.

When we did go places that required something more substantial, we used a toddler stroller. It was lightweight so it wasn’t that big of a hassle to put together and take me on trips. I want to say that we used them from the age of seven to probably 11 years old. After I had my surgeries, my body decided that it not only wanted to grow but everywhere! Honestly, for the last five years of being in the stroller, I never wore the seatbelt. I couldn’t. It never wanted to fit around my belly.  Thankfully, by the time I started going to middle school, I was riding the bus to the school and home, so we could keep my wheelchair with me at all times but more importantly, this also meant we could finally get rid of our trustee stroller of the early 2000’s.

Once you got your first power wheelchair, were you described a “speed demon” growing up? Do you remember the first time you discovered rolling down into ramps and/or mud? 

snowflake

 

A-Z Disability Challenge | Y : Let’s Talk About You

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Since we are at the end of this challenge, I wanted to do something fun. I kept going back and forth on what I wanted to do. I originally had titled it, “It’s YOUR life” but I felt like I have been talking about this a lot, so I changed it to discuss you.

I’m also doing this in a totally different way than my previous posts too. Since I’ve already done a Q&A several weeks ago, I thought it would be fun to get to know you and your way of life, so I am opening this up to you now with ten questions.

1.) What is your disability? Do you have more than one?

2.) What are some ways you’ve learned to adapt with it?

3.) I came across this question last week, and thought it would be cool to include it here. Do you think you’re a warrior?

4.) How do you feel about the word “inspiration”? What is your response to when someone calls you that?

5.) Have you ever thought about how we can change people’s perspective on what a disabled person should be in every sense of the word?

6.) What is your dream for the future? Example: goals for 2020.

7.) Does having sex with your husband/girlfriend/partner made accept or hate your disability even more? *If too personal, just skip it!

8.) What do you hope to accomplish in your lifetime?

9.) Do you follow any other disabled influencers? Such as Alex Darcy of Wheelchair Rapunzel or Jessica Kellgren-Fozard on YouTube?

10.) If you kept up with my A-Z Disability Challenge the whole year, did you enjoy the content? Did I miss anything you think was important?

It is crazy to think that not only do we start a whole new year next week, but I will also complete this challenge too. After what happened at the beginning of the year, I really did not think I could finish it. I was perfectly fine with letting it go until after new years day. I don’t really know what inspired me to get up one day and look into my daily planner and count some how days and letters I had left to find out they matched, and then get back on it every Monday. I guess I was determined to do it.

snowflake

Blogmas | Christmas Tree Ornaments

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Howdy!

Before I start on this, I am leaving my previous Blogmas post about my Christmas tree because if you haven’t read it yet or this is your first time on here, you can get caught up on why I have adopted a very interesting way to do my tree this year.

For today though, I am discussing my process of both the ornaments and the way I took the pictures, because that in itself was a big production that some people might find enjoyable! Fun fact: I am one of those people! 

  The Ornaments  

I feel the need to mention that the day I finished writing my previous post about my tree, my whole original theme of white lights, purple bulbs, and a star on top, kind of went out the window since my mom could not find anything to match that scheme. However, my dad did say something about going to Dollar General and getting things there. So, one morning I went on the DG website and looked over their very limited holiday decorations and found two that I actually loved, and they were: a pair of angel wings that came in two colors on the site, gold and red. I really fell in love with the red ones. The other one I just couldn’t get over was the crown. If you know me well, you know I need anything royalty and I thought for this reason would be no different!

Later that day, my mom went to the store and came home with an interesting sort of things for me. She got me a box of array silver ornaments. There are the normal shiny ones but my favorites are really the glittery and matte bulbs the most. Unfortunately, they didn’t have their hooks on them already so that was a bummer, but I managed to put two of them on the tree myself before letting mom take over! Now, you’re probably wondering about the two I found online. Did we have any luck in that department? Well, I’m happy to say, she found both of them! There was a setback though, she found the wings only in silver.

This wasn’t what freaked us out though. When I saw them online, they looked pretty smell, almost the same size of the other ones she got me. No… The wings and crown are huge! We couldn’t believe it! Honestly the crown is the perfect size but the wings just look obnoxious! This wasn’t the funny thing though, because both of my parents thought it would look great as the topper, but every time I look at it, I think it looks like a vagina! I literally thought of the episode of Everybody Loves Raymond, when Marie takes an art class and the sculpture she presents to her family, looks just like a vagina. The wings are basically in the same shape but with a bigger opening in the middle, so when my mom placed it at the top of my tree, it just looked very wrong. I mean, I’m all for my Christmas tree being non-traditional, but I have to draw the line somewhere!

I managed to talk my mom into putting the wings lower on the tree, but as much as I had my heart on a star on the top, I kind of thought the crown would look better there instead. It took some convincing on my part because my mom was very adamant about the vagina–I mean, the wings on top–but it does fit on there nicely. As far as decorations on my tree, this is about it. My mom did find me some lights too, but the cord was white and since the tree isn’t as full like others, it looked a bit chaotic but all is not lost, because my mom came up with another idea for them. I don’t even know what prompt this, but she just started wrapping them around my curtain rod on both sides and it actually looks amazing with my sunflower curtain! Thankfully, the lights don’t generate too much heat that I can actually leave them on all day and night. They make my room look really cozy!

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  The Process Of The Pictures  

Now that we have that part out of the way, I can talk to you about how I managed to take the photos for this blog post. I will say, it was not easy, but honestly any post that requires a lot of pictures is usually pretty difficult anyways! Between the fact that I am always adjusting myself to get the ‘perfect’ shot and basically trying not to pop out of my wheelchair and land butt (or worse, back) first on the hardwood floor, isn’t the best thing in the world. Thankfully, I can say I did not hurt myself too awful that day – I did sleep like a baby that night so I took that as a good sign!

For the first round of photos, I used my Kodak digital camera I got last Christmas. I thought the pictures turned out really good the last time so I tried it out for this part, but since I was working with higher angles, I was having a lot of difficulty keeping the camera steady enough. I was able to get a few of the ornaments in their places, so that was nice, but for the rest I switched to my tablet.

Now, I will say that I would only use this as a last resort, because they weren’t in the best quality. I think the culprit for this was because it was too dark in my room. I have become dependent on the flash and since I didn’t have enough lighting, they might not look the greatest but I honestly loved how they turned out for some odd reason. Besides this, I used something else to help make everything easier for me. My nana and papaw had this foot stool that they inherited from the aunts, and I use this to prop up my tablet to color and read. However, I hadn’t thought about using it as a tripod until that day. It took me a good hour and a half to arrange it in certain ways to get the shots I wanted, because when it comes to blog photography, I am incredibly picky! We were successful though, or at least I’ll found out if any of you send me comments about them after reading this post.

The last thing I would like to do, is find this large bag of classic Christmas heirlooms my nana gave me a couple of years ago. I think they would look awesome surrounding the tree. It would complete the whole thing I think. If we find them, I’ll update you about it on Instagram and Facebook!

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What was the meaning for your Christmas tree theme? Do you have any funny ornament stories you would like to share with me? For anybody with a disability, does it normally take you a while to get everything just right? What do you use to make things easier?

snowflake

A-Z Disability Challenge | W : Wheelchairs

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It is extremely difficult for me to talk about wheelchairs. Last year, the big contervesory was about the death of Stephan Hawking was announced, an artist made this beautiful drawing of him coming out of his wheelchair and basically walking up to heaven. As a disabled woman, I was very conflicted with this, but it wasn’t for the picture per se. It was because I felt like I had to choose between what I’ve always been taught and agreeing with the rest of the disability community.

The big deal wasn’t necessarily about the drawing itself, it was more about how a disabled person relies on their wheelchair to do things, like simple tasks around the house and/or getting out and having drinks with friends. However, everything just exploded into this chaotic thing that I really did not want to be part of at that time. Honestly, I still didn’t want to talk about it again on here, but I am on the letter “W” and there wasn’t anything else I could talk about other than this.

So, I’ll just say that my wheelchair doesn’t give me freedom. There it’s out and I can separate myself from the crap I’ve been feeling all this time.

I do think it allows me to do tasks better but I still feel stuck whenever I am in it. I really feel I am limited in both varieties of wheelchairs, as I’m either too short or too bulky! I have yet to find the perfect fit. Maybe this is what regular woman deal with picking out new heels! The second point I would like to get across is, it’s also all about your state of mind. I think after so long, you adapt to every different setting, and wheelchairs are a part of this too. You might get to do new or lose some beloved challenges while figuring out your surroundings.

Again, I have conflicting feelings about my freedom. I know I can never get away from my limitations. I say this not a sad note though, I like being able to test them anyways. I think this is really healthy! My family might not always agree with that statement, but you know. Honestly I would lastly like to say, I will believe what I want to. I have been doing pretty good on several other subjects throughout the years, I can add this onto the never ending list too! Even if that means keeping it in for a year and a half until I can find a clean way to discuss it on here, that’s what I’ll do.

If you’re in a wheelchair, whether that is full or part time, what are your thoughts on your freedom to be able do all the things you want to do? 

snowflake

A-Z Disability Challenge | U : Unconditional Love + Support

One thing that is equally important to a disabled person’s life is having unconditional love and support from their family and friends. I have always had a large group of people in my corner and as blessed as I am with all of this love, I also know that there are others like me who don’t have anybody there for them.

I have been very lucky to have loving parents that believed in me, even as a baby! They are the ones that stopped the doctors at Riley’s, when I was a few months old, to operate on me to make me look ‘normal’ when there was a small chance it wouldn’t help me. They just let me figure things out on my own. Even if that meant, I used my feet for everything and was a wheelchair bound for the rest of my life. I have never given my parents much credit to this decision because it was a risk not knowing how this little girl would be able to do things for herself. Thankfully, I did learn things on my own or with some help from other family members/physical therapists.

I wasn’t aware of how other young teens or adults with various disabilities lived without this kind of love, until I was a senior in high school.

I wish the emotions I was experiencing had sunk in as I feel like it would have helped me understand loads what everyone in my family was trying to relay to me about their worries of me living on a college campus. Now I get why they were so concerned and agree that I was not ready for that kind of commitment. However, when my mom started working at a nursing home that had residents with various levels of mental disabilities, and the stories of some of them being left at the door with trash bags full of clothes and other stuff, really broke my heart!

I do understand that some people cannot handle some traits that certain people produce but you don’t give up on your family like that. A friend of mine has a daughter who is autistic. I have never met her, but have been around other children with autism in the past. So, I am familiar with their quirks and I give kudos to the parents out there dealing with a child like this, but I’ve heard of autistic kids being left behind or being killed because the families just cannot deal with them anymore. Those are always the worst to see online, but when you feel like you’re at your wits end, what is really your next step?

So, I have a questions to my fellow disabled readers out there, did you have a good support behind you growing up? Or were you basically left to be your own hero? If you said “yes” to that, how do begin to trust others that they’re not going to abandon you at the end?

A-Z Disability Challenge | T : Titanium

I think one of the most popular subjects I tend to talk about, whether it’s online or out in public, is my Scoliosis and time I spent in the hospital to receive my rods in my back to help fix that problem. Honestly, I would like to stop doing it, because I really do speak up about it a lot! So, I’m hoping that this post will mark the end of it for a while.


I was a newly eleventh year old when I finally had my third and last surgery at Shriner’s Hospital for Children in St. Louis, MO. The surgery actually took place at the Children’s Hospital since it was a major operation. My family and I were already familiar with it, because I had my second surgery there too! I’ve never been too sure about how long I was under but I want to say about eight hours. I’m sure some of my family members will comment below the correct time range if I’m wrong.

I spent about three weeks recovering from the “right side” surgery, which surprised the crap out of my doctor, so they made a schedule to get the final surgery done within a week later. It wasn’t that long of a gap between these two, but neither was the timeline to go home either. I feel like I was there for another week and a half because we came home just before Thanksgiving. For the operation itself, it consisted of stretching out my body, inserting the crushed rib they took out during the previous surgery, placing it into small spaces where the cartilage in the spine is suppose to be, afterwards putting the titanium rods in place; plus the metal pins at my hips. The last thing they did besides sew me back up was unscrew the metal halo I had attached to my skull for almost four months. Yes, we asked if we could keep it, but were told various stories about why that wouldn’t be a good idea. .

Now after 17 years, it is still pretty weird to see these really bright objects pop up on recent X-Rays. Even though I’ve only had one done that wasn’t for a check-up at Shriner’s, was even more surreal because for the whole of my childhood that’s where I went to get a look at the inside of my body, besides the time I got an MRI at Children’s Hospital, just before I was to have the second surgery! Other than that, I really forget that I have them. I mean, don’t get me wrong, I can definitely sense when the weather is changing drastically because of my rods and I’m certainly not a fan of going through a metal scanner and hearing it go off like crazy and it’s not all because of the wheelchair!

As time rolls by, the less sensitive my back has become to being touched. I use to try to move away from my mom’s hands whenever she gives me a shower, because it was so painful internally, but I’m happy to say I love being scrubbed down because it acts like a mini back rub too! Of course, I still have days where I do not like to be touched back there and it’s usually because of something that I’ve done, like slept in a different way or popped it, and yes, I try not to do that on a daily basis!

Here’s an interesting question for you, do you have any titanium plates or rods in your body? Also, do you get sick and tired of talking about how you got it like me?

November Moodboard

Howdy!

It is time for another monthly moodboard!

By the time it turns into November, the leaves on the trees are turning various colors and falling to the ground. One of my favorite colors the leaves change into is actually red. To me, this symbolizes autumn. There is so much orange to embrace in October that I feel like any shade of red is a welcoming surprise. So, I knew what kind of theme I wanted to go for this time, and since I would look around the house for the previous ideas, I have stopped several items for this board.

The items used in this moodboard

Something that was a little shocking to me, was the fact that I had so many things at my disposable! If I had more room, I probably would have added them all!

The biggest difference with this one was the fact that I didn’t have a big enough bandanna to use for my backdrop. I asked my dad if he had any and even though he has tons of them, they’re all cut in half in order to fit around his head the right way. Unfortunately, I couldn’t use it in the way I have been, which sucked in a way, but all was not lost because my mom was helping me too, and while she was doing laundry, she let me use her Christmas kitty shirt she’s had for years! One thing you’ll notice with the pictures is that I didn’t use the front of it, because I thought it would overshadow the rest of the stuff on top of it.

The three largest next to the shirt were the Ritz cracker box, that was so unbelievably heavy for my toes, that as it was nearing the edge of my bookshelf that I just let it fall to ground. Since it was also brand new, I know not to be surprised for the many broken pieces in the packages! The second thing was actually a little present from my nephew the last time he came over. He walked into my room with the Hoosier back scratcher. When I finally got around to doing this, it had been on my floor for about three to four days.

As for the smaller items, I also had a package of UNO cards on top of my mini bookshelf that I grabbed, thankfully these were a lot easier for me to get ahold of with my toes and move to the space on the floor. The final piece that I used that came from my room was my little Spider-Man figurine.

At the same time, I was searching for stuff to use for this board, I was also rearranging my nephew Nolan’s bookshelf with several of my books. I literally had two projects going on at the same time! So, you can easily imagine by the time I got around to doing the photos for the moodboard that I couldn’t grip much of anything after the hell I went through with my books! Anyways, while I was already in Nolan’s playroom, I went and grabbed a couple of Hot Wheels cars, knob that belongs on his work bench and a single red ball (that you swear was orange in the pictures!) and placed them in my trusty bucket so I could just drag it back and forth between rooms!

And like that, I am done with this post! I feel like I should mention before I get asked whether or not I got any sleep the night after, I did! My mom and I worked so hard that we actually slept like babies. It was crazy! We hardly ever do this, but it was a big day for us that literally the next day, we both vowed not to work on anything. You ever get like this?

How do you like the color theme for this November? What should we do for next month? Blue? Festive colors of green and red? Let me know!