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 | G : Long Term Goals


For today, this post will hopefully be lighthearted; the kind to make you smile with some of the things that I’ve been collecting as part of my long term goals to accomplish in the future. It’ll have the same format as the other post about my goals for 2019, but I’ll explain a little more about each one, so you will understand why they are important to me.

I like to think there’s a big difference between a bucket list and long term goals. In my Pinterest board for my bucket list things, are not very realistic. You’re wishing to do them rather than actively trying to seek them out. Now, I’ve seen a lot of people who make bucket lists and actually cross off certain ones, but not everybody is that lucky. I’ve never thought about having or even listing out my own personal long term goals like this before, but since I wrote out my other top five goals for the year, I figured maybe I’d be lucky and actually push myself a little bit to actually make a dent in my list. I’m hopeful that’s all that matters to me!

When I created this list, I tried to list them in some kind of order, but we all should know that life doesn’t always follow this rule all the time, but at least it’s organized for me to explain each one for you below!

Write A Cookbook 

I’ve always wanted to write a cookbook, between being my dad’s guinea pig for years and the beloved recipes that my nana was taught by her parents, and then papaw’s family, I just feel like this is the next step! What I find interesting is that I have these big plans of writing it and including inventive gadgets that could help other disabled aspiring cooks and/or bakers, but I still have yet to actually do anything in the kitchen.

When I was with my nana, I could convince her to let me help her mix or pour the various things into the bowl, but I can’t even do that with my own parents! Recently, I went out into the kitchen to watch my mom make broccoli and cheese soup and she would not let me do anything. In her defense, she hadn’t made it in a long time so she was basically panicking making sure she had everything and it was all coming together. I was basically there to express my cooking knowledge with her, which that part was fun, but I yearn to actually do something. I’d love nothing more than to make my parents dinner one day, but these two goofballs won’t let me!

Go To The AMC Convention 

In 2012, I found out about the Arthrogryposis Multiplex Congenita Convention. This was also the same year, I found the whole mother-load of fellow AMCers and the fact that we even had an awareness day for us! I was extremely happy because I love to talk to people, especially family members of kids that have various types of disabilities. Parents and guardians are always looking for others that may have experienced similar situations, and I enjoy being a voice to the younger generations to gain some independence and be who they want to be. This was one of the main reasons why I created my blog in the first place!

It wasn’t until 2017, when the AMC group basically announced to everyone where they were going to host the next convention – because they go to a different state every year, so it keeps things interesting for everybody that attends. Well, I usually like to look on their Facebook page on the last day to see where they will be going to, and for 2018 they were going to Louisville, KY. I was happy! I showed it to my mom, who basically told me “if you can talk your dad into it, then maybe.” Now this came out at the end of July, my sister announced to us in October that she was pregnant and that she was possibly due at the beginning of July… So, my nephew was the reason why we basically dropped that idea from ever happening.

I would love to go to the convention one day, which is why I have included it onto this post. I would love to meet other people to see how they’ve managed to do things. I also think it would be a good thing for my family too, because I’m always hoping that they’ll want to help other families, especially my sister, she’s very helpful and I think she’d enjoy meeting the siblings and basically talk to them about her experiences of being the younger sister of someone with such a physical disability. I just think it would be a great experience for all of us!

Speak On A Panel At AbilitiesExpo

A couple of years ago, I heard about the AbilitiesExpo. I know there is one in Chicago and the other is in Los Angeles. I saw a vlog on YouTube of an attendee that jacked a tripod onto the foot pedals of his wheelchair so he didn’t need somebody else holding his camera for him. I was stunned at this, and I immediately showed it to my dad, we’ve been tempted to do something similar to mine. Anyways, I think the expo is very cool! It is usually for three days, and includes small sections of different companies for fashion, wheelchairs, biotechs, etc.

I have had the same recurring dream of speaking on a panel with other wheelchair users, it usually included Tiphany Adams, Jordan Bone, and myself. These ladies are very special to me as they’re always talking about their experiences of becoming a wheelchair user, and what keeps them going and thriving! I think being able to speak to a large crowd with several other fellow disabled ladies would be interesting! We could discuss real topics like sex and relationships, and give people another outlook to women with disabilities. I don’t know if AbilitiesExpo has ever done anything like this, but I thought it would a cool idea to do in the future!

Visit England

I think everyone knows about this one. I actually didn’t have it in the original line-up, I had a totally different goal but I realized that it kind of went with the first one, so I switched it out.

I’ve talked about how much I love England, and yes, most of it goes with the royals, but I have become kind of obsessed with the overall history of the country. I love the cities, London being my favorite! Bath and York are two of my favorite cities that like to show off their impressive structures, from the cathedrals to a row of houses.  Recently, I’ve been loving various pictures of the countryside. The villages are beautiful, they’re completely different compared to what I see here in the United States. Buildings and houses that were built in the 1600’s still being used to this day, the architecture is gorgeous! If you’d like to know all of the places I’d like to visit one day, click here.

Have A Baby

For a long time, this was the only long term goal I ever had and as the years go by, it continues to go further down the list. I’ve talked about this in the past, so I’m going to attempt to keep this as short as possible.

Years ago. I did include the words “get married” before it, but I’ve sort of lost my interest in wanting to do that. Even though I have my parents and sister’s marriages to look at for inspiration, marriage as a whole in this day and age doesn’t appeal to me. People make vows and sign a certificate but will cheat on their spouses anyways. I don’t want to say because of my disability, I’d always be faithful, because I am not invincible to anything, especially my own temptations.  However, being attached to someone that could be the one to give a child frightens me, because they could always come up with a story that I could be a bad mom, adding to the stereotypical image of people with disabilities can’t bear and raise children.

I’ve always wanted to be a mom. My maternal instincts come out whenever I am around young children. I want to teach them how not to be afraid of someone like me. It is hard sometimes to be around my sister and nephew together, I still get fairly jealous that she has a son to call her own, but I also have to tell myself that I get the easy job as an aunt, but I’ve always wanted to do the things that she does on a daily basis. I have met with other disabled moms out there and they do ease the questions of whether or not, if it’s possible to have a child, but it’s getting to that point where I can fulfill that dream of mine that feels impossible. Hopefully one day it will happen.

Do you have any long term goals? What have you done to try accomplishing them?

The Social Media Reunion.

UntitledI’ve been inspired to write this as I am still stunned by it. When I was in high school, I was heavily inspired by the upperclassmen as any freshman would be. I think it’s better to be influenced by your older peers than to be afraid of them and I think anybody can agree with that. I knew a LOT of kids in the class of 2009 and the only reason why I wanted to be like anybody in my own class is because of this specific group of girls in this class. I thought they were the coolest group of girls and as I’d find out later in my life one of the sweetest groups that I needed up being around too. I remember my freshman or maybe it was my sophomore year. They sat up against the far side of the wall and in the middle of the cafeteria and they wore, I wouldn’t say the trends of that year because I didn’t even know what was trending that year. I never knew because that wasn’t me to know all that. Anyways, I was influenced but also pretty scared to “step” on anybody’s shoes too. I didn’t want to make an ass of myself but during their last year in school, I actually sat with them a lot during lunch and felt part of them even though I was a class below them. They always made me feel welcome whenever I was around them. I was always mad that the popular clique in my class was sports related group of girls and I never played sports so I didn’t feel welcome by them, plus the fact I NEVER felt welcome with the whole table. By the end of our last year that whole group of girls crumbled and from there, I no longer wanted to be apart of them because they had nothing I wanted anymore.

Now that it’s been a few years, I actually talk to a couple of the girls in that small group, remember how I said that in my class after our last year the table kind of crumbled? Well, so did theirs as the years rolled on too. It was kind of shocking to me because I thought nothing could break these girls apart but something really ended their friendships with one another and I was actually sad because in a weird way I was still feeling inspired by them even though we hadn’t seen each other in two years or so. As years went on, they each went on a different path, some had kids, got married, got engaged, and things were going up and down for each of the girls. I still think these women are as strong and fearless as the day I met each of them in school. Three of them I’ve known since we were all in Elementary. Now I found out that sometime this month they are supposed to have their five year reunion. I was pretty amazed that it was time for their reunion and then two seconds later it dawned on me that, it meant next year it will be MY five year reunion. I told my mom this as we were driving my sister to her new school for the start of her first semester of her sophomore year. Now that’s a way to make your parent feel old! Funny thing is, she told me she got a paper in the mall before we went to Plummer advertising that her 25th high school reunion was coming up too. I thought it was interesting but really weird too.

I have always wondered if I’d ever go to any of my future reunions in my life. I find it hard to go into a building were all of my past classmates and their partners/spouses would be with them too. Would we “hang out” in our old cliques again? Would it feel like high school were we are ignoring old friends that annoyed us and the temptation of “stealing” somebody else’s ex? Reunions seem like a thing of the past to me as sites like Facebook keep you up-to-date on things. Those old classmates have added you as a friend on there and even though you approve of their request you still do what you did in school, ignored them. I feel like the younger generations that have always used Facebook to keep up with their friends after the decline of MySpace don’t want to experience a reunion of sorts because what’s left to know when you can easily find out on their Facebook profiles? I’m still pretty indecisive about if I’ll ever go to any of my early reunions. I do know that later on as the 20th or 25th year reunion comes around I would want to go to it because those are BIG years. Yes, a five year reunion is still a big time but we’re too into social media still to know the importance of experiencing a reunion. I’ll leave this here with two question. Have you went to your high school reunion while having a bunch of your old classmates on your social media account? Do you think these younger generations should still make the trip to go to their earlier reunions?

The “How-To” To Writing A Letter To Yourself

I originally wanted to do my Free Write Friday post right now, but I don’t have any ideas for the prompt at the moment. I’ll have to do that later on today! I wanted to do this yesterday after I had completed both of my letters to myself. I’ve got to say, I remember watching the episode of The Golden Girls where Dorothy writes a letter to her late father. She said she did it because she never really got to say goodbye to him and that it was really helping with getting things out in the open even though he’d never read it. I’m always dreading reading anything I’ve written in the last ten years, because I was so immature with my words and you can sense how my attitude was back then the more you go on reading them. I’m glad I waited to do the letters now instead of doing them earlier, although we did have to write letters to ourselves when I was a freshman in high school. It was our first day of school and nobody had homework in our resource class and so our teacher had us make these letters to ourselves and at the end of the year we’d get them back. Well, we never got them back and I’m thankful for that!

There’s two reasons of why I wanted to create a past and future list. I wanted one to be like an advice or a guide to my younger self. The future list was mainly an over-bearing question and answer list. I also have two reasons why I picked these two ages, I mainly wanted an age that was the start of everything going downhill. At age 14, I was basically at a standstill between being a middle schooler and going into high school. I was also going through things in my personal life that would kind of “get me ready” in a sense for the next several years of my life. For my future age, I wanted to pick an age where I think I’d feel at peace with, in a way, that’s also a bit of a standstill too. Everybody nowadays says, 40’s is the new 20’s, and I didn’t want to focus on a mid-life crisis or on that phrase, so I choose an age where it would be in the middle of an adult and elderly. Who knows, the world might get more complexed down the line and we may never die. Here are my guidelines into making a past and future letter to yourself:

The past letter:

  • Pick an age that has three or more specific things that either at the time made you see the light or had gone downhill.
  • When choosing that age, make sure you can remember everything well. While you know about a certain subject that happened at a certain age, as overtime you start to lose of what really did happen before it happened, as it was happening, and after it happened.
  • Unless you have a very good memory, don’t select an age from 10 and under.
  • Be as honest as you can, share and show us or yourself what you really can remember and how you really felt on that day/night.
  • You can share as much as you want, but if you share it on a blog, I think you should censor yourself a little bit. Don’t go into full details in case there are people out there, who don’t like you very much and want to use it against you.
  • When you go to give yourself advice for your younger self, I don’t know why I did it or the fact I’m telling you this, but try not to reveal much of what’s to come later on in your life. I might have Back To The Future stuck in my head or something and that’s why I’m saying it.

The future letter:

  • I wouldn’t pick an age that’s five or ten years down the line, that’s too soon!
  • Unleash any questions you might have bottled up inside.
  • In case and god forbid this ever happens, share some memories of small things that you like that might put yourself at ease or make yourself happy that you were able to make it so enjoyable.
  • Share what your fears are now but be a little bit humorous too!
  • Be as vulnerable as you can as you write about asking about family questions, it might hurt coming out with it now and then too, but you might feel a connection between your two selves when you go to read it,
  • Ask yourself one last question from now about how content you are and see if what you’re older says in whatever age you decide to give it to.

Dear Myself At Age 52

dearmeDear My 52-year-old Self

Writing to myself from the past was a lot easier, because getting started was easy. I’ve got too many questions that I like to be answered, but since there’s not time travel yet, I’m stuck with wondering about what our lives are like down the line. You are 52 years old, that’s a good age to be, I guess! Like I said I’ve got some wonders but also some worries to talk to you about and I hope you understand the reason why I want them answered so much. So let’s get started with them.

Here I am in my early twenties, sitting on my bed, listening to the band Nightwish. Do you remember them? You used to sing their songs all the time. You got into them when the Anette Olzon came on the scene and you were present when Floor Jensen took her place. You’re a fan of their first singer, Tarja. Have you seen any of them in concert? Has the music scene changed much? Has Disco come back in style? Have you gotten out of your comfort zone and sang on stage again? I have had dreams of our old high school doing a special program for any choir students to come back and sing in front of the students and staff after a few years we’ve gradated. Did that ever happen? One of my more important questions, is did you ever find the one? Did you get married and have a family? From the time you hit middle school, you constantly dreamt of your future kid(s) births and what their names will be. Is there a Mason Lee in your little family? Did you ever move out on your own like you’ve always wanted to? If not, how did you meet your husband? Please don’t tell me, I’ve known who I was going to marry my whole life.

The worries in my mind are of things I’m scared of getting through. Since you are in your fifties, is Blondie around you? Keeping in eye on you like she always does? Did she get the life you wanted for her if you didn’t get married? How did our grandparents die? How did you get through nana’s passing? Has anybody haunted you? What, you’ve always been the paranoid one, so I have to ask. Especially since practically everybody in our family knows we hate ghosts and stuff like that! Did Amy, Kristi, and Blondie have kids? Do any of them have disabilities? If so, does anybody have your disease? The most important of question of all, how are mom and dad doing? Did dad take his motorcycle to the nursing home with him? Okay, I have to get off these sad questions before I start crying my eyes out. We both know I hate when I do that. Did you finally take everybody’s advice and wrote your memoir? If you did, that only means you either gave up on blogging or they deleted your site. Did you go back to school or did you just stick with writing? Do people still call you an inspiration at your age? If I told you I was content with my life right now, would you agree? You’ve seen what I’ve conquered and gotten to do, is there something or someone wanting for me out there?

Love always,