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.

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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?

A-Z Disability Challenge | B : Building Trust

Howdy!

I created this challenge to talk about disability topics and today’s post will discus about building trust with other people. So, this piece will contain some personal advice and experiences, but it’s more directed to the families of disabled kids and young adults.

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Trust is a big thing.

You learn it from a very young age, I think you don’t necessarily realize it until you begin to look back and it does make sense, it all goes together. Here’s an example, whenever a toddler is about to do something he’s not suppose to, you tell him “no” and try to explain that he’ll get hurt. You can’t expect your child to leave it alone, that’s a rarity even in itself, so you’ll most likely see the kid do it anyways and start wailing because it got a bump on the head. First off, kids have to learn things on their own. You hope they’ll get the message and learn to trust you the next time you say something like that, but even you know better not to trust a young child either. So, it goes back and forth quite a bit…

As somebody with a disability, I rely on people to help me with things. I don’t like to, because I always feel like I can figure it out on my own, but there are things that I cannot do by myself so I need help with them. When you have to invite a third party, it can always be a hit or miss. I learned this while I was in school. Whenever my aides were out for a period of time, I had many, many substitutes that would have to be with me throughout the day. I would have to teach them what I needed for each class and what they could do to pass the time. They were kind of dragged from one place to another; not to mention to give your trust on a person you’ve just met once or only had a few times, circumstances would worry me sometimes because I didn’t know what this person would do.

Honestly, I tend to give people the benefit of a doubt. It’s one of the bad things about going with the flow. You don’t want to second guess people right away, so you go all in and give your trust away like it’s pieces of candy. However, I’ve learned over the years to listen to my body about certain things: your gut will tell you when something’s up and mine would flare up a lot while I was in school. I would break down in the middle of classes and feel completely awful, afterwards I would be switched out of that class and I’d calm down and be myself again. Unfortunately, I haven’t had this happen whenever I’m around people, just whenever I’m in a different place physically. I guess that’s better than anything though, right?

For families of disabled kids though, everything is heightened. They’re not there with their child. They have to hope that whoever’s watching over their kid is doing what that person would do for their own children. If something has happened that is a little weird, things can escalate really fast and as someone who has had been in this kind of situation, it feels horrible. You don’t want to get anyone in trouble, but if something is off about how you’re being treated whether it’s physically or emotionally, it is best to speak up about it. You don’t deserve to live in fear of what’s going to happen once the dominoes collapse. They have to give up a lot of their trust to the people their child is around on any given day, and that includes their friends, and that alone can cause a lot of anxiety, but you do continue to take chances because you do want your children to be treated like everybody else, if they don’t, how is your child suppose to live in the real world?

How are you with trusting others around you? And families, what kept you going when things weren’t ideal with your child’s aide or surroundings? Do you have any advice you could to other parents out there?

What Can I Do?

A couple of weeks ago, I joined the #SpoonieSpeak chat and the theme was inspired by a my blogger friend Sarah’s post about misconceptions about people with disabilities. The chat and group of people who tend to join in every week have become a part of me and even though my problems are more physical, these people understand almost everything about what I have to deal with on a daily basis. There’s pain, both emotionally and physically that comes with living with any disability and they are very supportive and there for you when you need someone.

The last question that was asked was “when you are able to, how does taking care of your appearance mean to you?” I was very honest with my answer, I mentioned that I’m not able to dress myself, wash my own hair, and do my makeup. As much as I enjoy getting my hair washed and dressing up in casual wear, I look forward to going out and being able to do my OOTD posts, that part makes me feel good, but there’s still a part of me that wishes I wasn’t so depended on somebody else to help me get dresses, wash myself, etc I mean these are things that everybody can do, but I can’t. One tweeter commented that I should focus on being pampered, but again very honest reply, I’ve always hated being pampered, spoiled whatever. I want somebody’s time but I don’t need to be showered with attention. We don’t need to give my ego that much power!

People just assume I do it all with my toes, but in reality I can’t. There are STILL a lot that I cannot do on my own and I absolutely hate it! However, there are a couple of things that I have learned to let go, like the getting up my bed/couch on my own, that will be something I’ll just never be able to do again. In a strange way though, this whole thing is like if one door closes, another one opens. I don’t have the strength in my body to push myself up off the floor but I can teach myself to do other things like when my mom goes to transfer me from the couch to my push wheelchair, I can stand on my tippy toes and not only hold myself up against but also pull myself into her so we can successfully go from one place to the other. I think that by itself is pretty cool!

I’m always asking myself what else is there for me to do?

I feel as though I’m learning to do new things as little kids learning how to adjust not being able to use their hands or use a wheelchair for the first time. I don’t want to do things just to do them. The things I’ve been learning to do lately are things that I’ve been curious about in the last few years, like when I’m older and have a family of my own or living at an assistant living place, can I use a vacuum? Can I open my own boxes, cans, jars? Can I put my own trash bag on the can? These things have been carefully planned out in my head and I can say I’ve tried my feet out on almost every single one and I’m still learning. That’s all I can do is learn. The decorating my birthday cake with my aunt was another wonder in the back of my head, I’ve been wanting to cook and bake for almost two years now. I wanted to make/decorate a cake because if I have a partner and/or have kids I don’t want to go out and buy an already made cake, I want to do it myself and that’s why I want to continue to learn to do more in that area.

I want to do a lot of things in my life, nobody is going to tell me what I can and cannot do. If you do say “she can’t do that” just as a warning, I’ll only take that as a challenge! The point of this post is that I don’t want to learn things to get praise or admirers. I’m adapting to my surrounding that’s what I’ve had to do my whole life.

Blogs That I Love: #14

Happy Halloween folks! What I like to do on Friday’s is give all of my readers a good list of blogs and their authors, a chance to be recognized. For a lot of the blogs I read, sometimes it’s sudden and then I have a few were I can’t get enough and read their stuff all the time. If you’ve heard me talking about these type of posts before, you know how much I don’t like getting anything in return. I don’t do it for that, I do it for the ones who want new blogs to read and to tell those bloggers recognized that I l o v e their blogs, plus I love knowing that I might’ve brighten their day too!

1. Bloo ‘n’ Stuff – Sara is a lifestyle blogger, she lives in Ireland. She’s very different from the other bloggers because she’s a disabled blogger like me. She has a disease called Muscular Dystrophy, she writes about things in her life and disability. Something that I like is that at the beginning of every post, she has a very large quote that gives you a feeling that this will be different from other posts you might read that day. Besides talking about life with MD, she also talks about animals and book reviews. Her blog is adorable and simple!
2. She & Life – Ella is pretty young, but she is already a mother of two small children and has a boyfriend. She lives in the UK. Her blog looks professional. Pictures are utterly amazing and it’s a very different experience. Sometimes in these types of blog themes you feel kind of overwhelmed by how much is on your screen when you first pull it up, but thankfully Ella’s background is just a white layout. So it still has that simple element. She has a bunch of categories, from lifestyle to fur babies. Her posts kind of give me this country feeling. They’re look so simple and elegant that they’re perfect.
3. Little Bird’s Mama – This next blog is a little different, even for me, but I really like the quality and cuteness of the blog. Neram is the blogger behind Little Bird’s Mama. She lives in Amsterdam, The Netherlands. Her son Thiago is the inspiration behind the blog. She talks about her new life as a mother, living in Amsterdam, talks about fashion, and living green. Which was another draw to her blog. I find the whole eco-living is such a “different” take. Since I’ve been basically detoxing my mind from all of the negativity and stuff like that, she’s making some changes to her life and her family’s life early on. I find what she’s talking about on her blog very helpful as a non-mother, but I’m sure any mother who wants a greater change for their child(ren) would love her too!
4. Dorkface – Miss Jemma. I just love her, she’s the sweetest girl I’ve met in a while. She lives in the UK, she talks about lifestyle, beauty, and craft/DIY’s. She does a lot of cute, quirky little doodles that I immediately get jealous over, because my artistic side of me on my “paint” program is just not for me. I’ve tried to do a few things and it has been a success on my part, but her stuff is a LOT better.

Tune Tuesday: Canada!

It’s week four and we are going to Canada! Remember how I said last week that Aussies have a growing music scene? Yeah, Canada’s got an even bigger one! The acts just never end but technically that’s a good thing. When you go to figure out two to three acts to recognize for this sort of thing. I’m kind of regretting not doing two weeks for this! I only picked the two that I actually don’t listen to enough. Growing up, my mom was nice enough to have the TV in the living on MTV and VH1 for me because I loved watching music videos before school! One of the singers that I liked was Nelly Furtado. She has this very unique voice that I wasn’t used to hearing at the time and my mom was REALLY addicted to her songs “I’m Like A Bird” and “Turn Off The Light.” She liked to sing out loud to those songs and it wasn’t pretty, especially trying to sing with two girls that just got up and don’t want to go to school. You can imagine right? When her album “Loose” came out in 2006, I was pretty addicted to it. Every single that came out became one of my favorite songs. I’m just said to say I didn’t have that kind of luck when her new album came out last year.

 Another one that has a very unlikely way of showing up on me. When I was little, I wasn’t into my parents music at all but when we went to see the movie Spirit: Staillon of The Cimarron in 2002 with our church group, I was basically hooked to both the movie and the soundtrack! Not even kidding! I still have the soundtrack and listen to it constantly. It’s so good! Bryan Adams wasn’t somebody that I ever thought I’d listen to, but then again I like the Tarzan soundtrack because of Phil Collins so explain that one! Surprisingly, I can actually listen to a few of his other songs. I had a hard time getting through my thick head that he’s the one that came up with the song “Heaven” and not some music dance group that you first heard it from. Yeah that was a fun car ride home. My mom and I yelling at each other telling each other we’re wrong. I was wrong I will admit! Do you listen to either one of these acts or any other people from Canada? I love finding new music so just send them my way! What are you listening to right now by the way?

You Can’t Take Me by Bryan Adams

Summer Of ’69 by Bryan Adams

All Good Things (Come To An End) by Nelly Furtado

Say It Right by Nelly Furtado