1 PETER 3:9


Hi all it’s me, I’m back! Did you miss me? Hehehehe 🤪 this is going to be another short and sweet blog because I said most of what I wanted to say in my Vlog, which you can watch the Vlog at the link above 👆 the Vlog is mostly me talking about what wishbone day is and why the day is so important and special to me and my family and the entire O.I (Osteogenesis Imperfecta) community. I had such a good day and I truly do thank everyone who made it so special for me, you all are amazing and I’m so blessed to have you all, not many disabled people are as blessed as I am. There are so many people in the disabled community who do not have that, so many families give up their children who have O.I and so many people who don’t even have a support system, God blessed me beyond what I could have ever imagined when it comes to that stuff. Most of my family is whole heartedly in this fight called O.I right along with me, they are there not only cheering me on and uplifting me, but also caring for my every need, no matter if it’s a physical need or emotional, they are whole heartedly there with me and I truly do know how blessed I am for that. I have been in so many hospitals where I look around at the other patients and their so alone. One of the last times, not the last but one of the last, I was in the hospital getting ready for a very, very minor surgery and I had both my parents on each side of my bed and they were both arguing about which one got to take me into the operating room. Than I happened to look over in a bed next to me and there was this young boy sitting there, no older than 12-13 and he sounded very bitter, very angry and very alone and I happen to over hear the woman talking that was with him. She happened to be a caseworker and he was in foster care and he was having a pretty major surgery and you could just see how alone, terrified and lost this kid was and of course because he was scared he kept lashing out at the caseworker, but honestly the caseworker was so rude and selfish, and so, let’s get this over with so I could go home attitude that I would have lashed out at her too. It was all over her that she did not care one ounce about this kids well being, all she cared about was getting the job done so she could go home, and it broke my heart because all that kid wanted was for someone to act like they gave a crap about him, all he wanted was to be thought of. I don’t think he was even desiring love at that point, all I think he desired was for someone to show him compassion.

Than after I experienced that I went to surgery and when I came back there happened to be this beautiful little girl in a bed right across from me and she was no older than 7-8 years old and she had just come out of a even more major surgery, such a big surgery that she was on a ventilator, but she was very much awake and knew everything that was going on, and when she woke up from her surgery she was looking all around the room and started getting really anxious and so the nurse tried to calm her down by telling her she’s ok and that her mommy would be back as soon as she could but she had to go to work. This little girl was terrified and again was alone and had no one, and I know as your all reading this your probably starting to get all judgmental and probably saying: how dare that mother choose work over being with her baby girl, but you see the thing is it’s easy for us to judge, but we don’t know that families full story. I know the child’s home and mothers work was over an hour in a half from the hospital because I heard the nurse say it. That mother kept calling the hospital every five minutes so I know it was killing her not to be there. We don’t know why she chose work over her kid, maybe she’s a single mom, maybe she has more than one child, maybe she has to work her butt off to pay for her daughters medical needs, again we don’t know the full story but I can promise you she wasn’t absent just because she was a bad mother. So your probably asking yourself now what is my point to bringing up these kids stories? My point is not everyone is blessed enough to be born into a family that’s going to be able to be there the way we need or desire. I was blessed because my parents were an amazing team, they had an incredible partnership and so when one was down and maybe not able to juggle all those balls that parents who are raising disabled children have to juggle, the other one was right there to catch those falling balls. I never once went to a single surgery without either of them, they both were always there holding my hand.

Average, “abled” body people do not realize the things us disabled people have to deal with, from insurance, to education, to jobs, to medical things, to bills, to finding ways to pay for medication and equipment that we need. I mean for example, I can’t even easily go out and visit people in their homes like I used to because even that is becoming a huge challenge and people always think it’s me just trying to be lazy or pull the sick card but it’s not! Not only is it a challenge for me to go out because physically it drains the life out of me, but also it can become very stressful, not only is it stressful because of my medical problems but it is also becoming stressful because most houses and even buildings are not totally wheelchair accessible, especially in Ohio, heck not even our streets are accessible, and so that has become a major challenge, especially when visiting people at their houses. A lot of people say to me, well you figured out ways to do it when you were younger so why can’t you figure out ways now? But here’s the thing, when I was younger my family and friends were also younger LOL. It was very easy back than because if for example, I wanted to go visit someone at their house and they had steps. My family and friends would just carry me and my chair right into the house, but that’s not possible anymore because even though I never got any taller, I still got heavier LOL. I used to only weigh anywhere from 15-20 pounds, where now I weigh 39-42 pounds, that’s a huge difference, it’s a lot easier to carry 15 pounds up stairs than it is to carry 40 pounds, and people can’t carry my chair in anymore because my chair, with me and my oxygen weights close to 200 pounds, you try lifting 200 pounds. The chair is 100 pounds, the oxygen tank is another 15-20 pounds, the 2 bags I have strapped to the chair weights probably another 15-20 pounds, it literally has all my supplies that I need to survive and than my body weights 40 pounds so add that all up, that’s like 180-190 pounds! So there’s no way 60 something year old people could lift that, especially when one of those people are battling a terrible, debilitating form of arthritis. I love when people suggest for my 65+ year old parents just carry me into the house like I’m a toddler, number one thats not even possible anymore because of the fact that I weigh 40 pounds, I’m to heavy to even just lift, secondly I’m on oxygen so your not only asking for them to carry my body but than also my tanks, which I also than have to unstrap because their literally strapped onto my wheelchair and let me tell you, taking that a part is not easy, secondly where am I supposed to go if I’m carried in? Am I supposed to sit on my parents lap the entire time like I’m a little kid. I mean you all do realize how degrading that even is for people like myself, we’re not kids. I’m almost 35 years old! Do you really think I’d be comfortable sitting on my mommies lap still? Get real, I love my mom but come on people LOL.

These are just some of the challenges that disabled people face that society really has to open their eyes to. After that cop in the George Floyd case was sentenced I told all my friends, no matter who or what race they were. I was so excited to see justice was served and I was so excited to see some light shining on the way people of different races and especially the African American community are treated. I told my friends I really pray we achieve equal rights finally, but that African Americans and asians and even the LGBTQ community and every other community out there that’s fighting for the right to be treated as a equal. I feel your pain, I truly do, and I’ll be honest, when I said that, especially to a lot of the African American community, they got very upset and I think they thought because I was a white Girl I couldn’t possibly understand how they felt. They said I nor my family or friends knew what it was like to be murdered just because of the color of their skin and to a certain degree their right, but here’s the thing. Just like they keep telling me and all white people to educate ourselves they need to do the same and educate themselves on the disabled community. Because the reality is we were murdered, we may not have been murdered for the color of our skin but we were murdered for the fact that we looked and acted different. They basically treated us like caged animals, especially in the 30s-40s 50s 60s and even a little in the 70s. We were not only being murdered but were being locked up in literal cages and treated like we were a friggen monkey at the Circus, if you don’t believe me look it up for yourselves and no I’m not just referring to what hitler did to us, even though that was awful enough all by it self, somewhere around 40,000 disabled people were murdered by him, but not only was that awful but there are tons of other stories just like that where people murdered us and treated us like animals, and the sad part is a lot of it was said to have been done all in the name of science. There’s a great movie called breathe and it’s about this man who developed polio and the story was based on a true story. I won’t give the movie out plot out, but there’s a part in the movie where hospitals and society tell this man that he has to live the rest of his life in a medical facility, in the movie they told him and his wife that they didn’t have a choice, it was the law. If you were disabled and needing medical care you were automatically put in a facility and every single person just accepted that, until this man. This guy was one of the first to realize that even if you were disabled it didn’t mean your life was meaningless. This particular guy was not only young but he also had a wife and his wife just had a baby literally right when he started getting sick so he knew even though he was disabled he still had a future, he had his wife and more importantly his child and so he fought for the right to go home and fought for the right to be a father to his child. He made the doctors and hospitals figure out ways to run his equipment at home and he just enjoyed what time he had left at home with his wife and supposedly that’s where it all started, that’s where Doctors and the medical community started opening up their eyes to the fact that disabled people were not just some brain dead mutant lifeless pile of flesh but that we were living breathing human beings and we had desires, thoughts, feelings and dreams just like the rest of society.

So why bring all this up? Well for one to educate you all and to open your eyes to see that your not alone, no matter if your fighting racism or any of the other things I previously mentioned your not alone, and we not only feel your pain, but we desire to be respected and seen just like you all, but the difference with us is the fact that we’re a much smaller community than you all so we are overlooked and not heard the way most of you are heard and so that’s why, instead of fighting and debating one another about whose pain is deeper, let’s instead come together and help support each other, hold each other up and fight for each other’s right to be respected and seen. We the disabled community need you abled body people we need you to be loud with us and show the world that we are important too.

So how do we do that you might be asking? Well number one educate yourselves, secondly be loud, just like you all helped us be loud on wishbone day, be loud every day. Write our governors, our president, and everyone else who will listen and also share articles like this, share vlogs and support us, and if your in the work place and a disabled person comes in asking for a job, actually interview them and take them seriously, give them the respect to at least try to see beyond their disability.

I just wanted to touch on one last thing before I end, I read an article in our local news paper, actually my mom pointed it out to me, but anyways, in the article it was talking about how so many people are fighting on social media outlets because they feel their being silenced and I think it’s so sad because so many Christians are feeling that way too, but here’s the thing. I don’t think anyone’s deliberately silencing anyone, I just think we’re letting are imagination get the best of us. What I think their doing is trying to control the madness, and what I mean by that is their trying to control the fake news. There are so many conspiracy theories out there and they are just trying to shut those down. For instance so many people were spreading rumors that covid was fake and because so many people started sharing these conspiracy theories, people than started to believe in them and because people were believing them, those theories were than killing more people, I know for a fact this virus is real, I have lost some of my friends to this virus, I also almost lost a man who is like an uncle to me so I whole heartedly know it’s real. The whole capital riot, that all was put together by using social media, where again people were murdered and that all could have been avoided if the owners of social media just controlled things better, so now that’s what their trying to do. Unfortunately they don’t have a radar that can just tell them this dudes normal and that dudes a wack job, trust me I’m sure they would love to have a radar like that, but unfortunately they don’t. All they have is algorithms. What that is, is a program that tracks everyones moves, it tracks what words we use, how we use them, what kind of articles we post, and what it does is than calculates everything and if, for example you post an article that has been shared 500,000 times and yet they have gotten 300,000 reviews saying this article is fake news, than that program automatically shuts that article down and it can no longer be shared, because to the computer program it’s a site that is considered potentially harmful to its users. That’s how all this works it’s not “social media” shutting stuff down exactly, but honestly it’s you and me, because theirs people on the net who purposely keep reporting certain things so that it looks like it’s social media shutting stuff down, but in reality its “trolls” (computer hackers/nerds) putting all that in motion to make these conspiracy theories look more real and justifiable, and the reason president trump got booted off most of social media is because he likes to fight back, which sometimes yes can be a good thing, but some times you have to learn the right ways to fight back. I don’t like to get into politics but the fact he made fun of a person with a disability was heart breaking to me and it’s heart breaking to see so many people who call themselves Christians and who say they support me but than also are supporting a person who straight up mocked a person for having a disability. I would like to ask you, if it was any other human making fun of a disabled person, and let’s go a step further, let’s make it personal, if this person was making fun of me would you all still be justifying the behavior? And please don’t tell me he wasn’t making fun of a disabled person because he was, he was bending his fingers and hands and talking like he was slurring his words because he was mocking a man who was disabled. I have bent arms, when I talk my words don’t come out clear, I don’t slur my words but because I have a bent jaw and no top teeth I definitely have a lisp and my words sound all muffled when I speak, I know this about myself, I’m not ashamed of it. I am someone who has almost died a dozen times so do you really think I’m going to care about my looks or the sound of my voice LOL, HECK NO! I have been through hell and back keeping this body of mine kicking so I’m going to love every ounce of it no matter what and I’m going to see myself the way christ sees me, but my original point to saying all that is, would any of you who know and love me be ok with someone mocking me like that? I already know the answer is no you wouldn’t be ok with that, so my real question is if we wouldn’t be ok with that in any other way, shape or form, than why are we trying to convince ourselves that trump mocking.another disabled person is ok?

Like I told a few of my friends, if you want to support trump great go ahead I’ll support you, if you want to fight back and help him get on social media again, great more power to you, but until that moment happens just calm down, stop getting yourselves so upset that your making yourselves sick, and stop throwing a tantrum and stomping your feet on the ground like a 5 year old and saying on social media, I’m not coming back on my page till Trump is back! Really guys? Like really? You really think that’s going to achieve what you want. There’s certain rules everyone has to abide by in the world of social media, it’s not just trump, we all have these rules. When I was a kid? I lost one of my accounts for not following the rules and I was warned just like he was warned, but I ignored the warnings and eventually lost my account and that’s exactly what happened here. He broke the rules, it took me 2 years before I could get my account back,so what their doing to Trump is not uncommon and it’s not because he’s “trump”, if anything their trying to treat him like they would anyone who breaks the rules, trust me even though they don’t agree with his political views, it’s killing them to ban him, you know how much money their losing, trust me their desire to make their millions trumps (no pun intended) their desires to stand for their political views. So instead of being so angry that you throw a tantrum do your research and make sure the outlets your going to, to read this research is reliable sources, and once you do, if your still frustrated and angry and if you still feel your being smothered and silenced than just fight back. Humble yourselves enough to be still and know he is God and he will work all things together for good and he will teach you that some times the best ways to fight back and shine his light is just to be still and love, live out love, it’s easy to love those who love you back, but can you be loving to those who you may think doesn’t deserve it? That’s what being a Christian really is and I’m sorry to say but most Christians are failing this challenge and it’s breaking the Lords heart. So do what 1 Peter 3:9 says. Let’s really be what we’re called to be!

Wow this Vlog/blog was much longer than I anticipated sorry, but once I started writing I just felt the Lord telling me to add more and more LOL. I hope you all have the patience to read all this LOL. God bless, I Love you all and you will be seeing me again real soon 😘

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