In Jr. High was the time I back-sassed my dad in Lowe’s. First, let me explain that I was grouchy because I didn’t want to be there, to begin with, but yet I was forced to go with him. We were at checkout and we had roach spray, along with many mouse/rat traps. The clerk said some statement about: “you must have a mouse problem?” I replied: “Oh, yes! A lot!” My dad replied: “Jamie, we don’t have a problem; just an occasional mouse or two from the field next door.” But of course, Jamie with the big blabbermouth didn’t shut up until dad growing frustrated told me “Jamie, Stop.” Well, I was mad that he cut me off from telling my stories, plus the fact he forced me to come anyway. Once dad had paid for the stuff, he asked me to carry the bag, to which I replied: “Why can’t you do it; I’m not your slave.” Oh, you should have seen the vein in his temple throb, and his face turn red; I knew I had crossed the line: “No daddy, I’m sorry; don’t whip me!” as loud as I could in Lowe’s, not realizing that if anyone heard him, they could report him for “child abuse,” when he was just disciplining his child. Boy, was my dad embarrassed and furious! I think if my child ever did that to me, I would have whipped them when we got in the car! I was so scared that I didn’t get into the front passenger seat, instead, I got into the backseat on the floorboard; trying to avoid my Dad’s wrath! (He still loves to hold this story over my head! LOL)
Due to the severity of my Scoliosis/Kyphosis, in summer after 4th grade, I had my first bout of Pneumonia. For those who may not be aware of everything that Scoliosis effects, here’s a health lesson; it’s not just the spine. Sure, the definition is “Lateral curve of the spine,” but it all depends on the severity. My Scoliosis became what is known as Kyphosis, “Hump Back,” and is multiple curves, whereas Scoliosis is just one curve. The more a spine curves, the more it can cause other internal problems in important organs such as the heart, stomach, lungs, etc. Before my surgery in 2012, my lung capacity was 18-20%, I had ribs twisted around my spine, a lot of stomach problems, and problems that were never diagnosed or discovered until my pre-op visit or after surgery; (How weird is that?) Anyway, I was almost finished with my week of Summer VBS (Vacation Bible School- a weeklong camp that is put on by local churches/religions), when the Wednesday night, I started to develop a cough. Mom took me in to see my pediatrician, and he said, it had started as a typical “summer cold,” and due to my hatred of shots, my doctor just gave us cough medicine. The medicines, however, did not work, instead, my cough progressed until I had a “popping” in my back every time I coughed. I say Pneumonia, but it might’ve been bronchitis that was turning into Pneumonia, I don’t remember exactly what the doctor had told my mom, other than the fact I needed a shot; that memory stuck with me!
We went down to the pharmacy that was in the same plaza as my pediatrician’s office and as soon as we got back to the doctor’s office and I saw that needle, I had a full meltdown in the doctor’s office, to the point where mom had to hold me down. Normally shots are given in the arms, or the butt, right? Mine was in my legs because it was the only spot on my body that had “any meat” on me. You should’ve seen it, mom holding me in her lap, me tossing and turning, her having to trap my legs under hers so I wouldn’t try to kick; I laugh now that I think about it because shots aren’t that bad anymore, sure they are unpleasant, but really a quick pinch and then it’s over.
After the shot, I was crying and telling my doctor “I hated” him and how “he was so mean,” being a total brat, but by that night, I felt like 50% better. Shots may suck, but you feel a lot better afterward because they work quicker than medicine. Life is a lot like a shot, there are changes we don’t like or can’t deal with, we cry and boo-day about it, but it doesn’t change the fact that it is going to happen; it’s a slight “pinch” (shock/anger/sadness, etc), but then we adapt to it and are over it.
My brother and I’s relationship has gone back as far as to when I was in the womb. Mom often wrote that my brother would tell her, “It’s a girl because all she wants is junk.” Mom ate just healthy foods when she was pregnant with my brother, whereas, for me, it was just junk food. Another interesting fact is that my brother is the one who picked, “Jamie,” for my name; Mom and Dad wanted a “J” name, who knows how he picked it: maybe it was because Dad’s middle name was James, or maybe he just liked the name.
Once I was born, he often spent time with me. There are pictures of him holding me, or sitting with me in the rocker under some covers. When I was 2 years old, he’d follow me around with the video camera and video me; it’s one of my favorite videos even though the camera shook and watching it, can make you sick from all the motion because it shows he loved and interacted with me. I gave him the nickname “boy” when I began talking; my uncle/ Paran would call him that, and I picked up the habit. When I was 2, I’d beg him to read with me and he would sometimes. Our relationship started to get strained when I was in pre-k because he started to become a pre-teen/teenager.
When I was 5, I would sit at the front door like an eager puppy, waiting for him to get off the bus. I’d jump around excited, “bubba’s home! Bubba’s home!” Would he pay me any mind once he got home? Nope. He’d walk past me, annoyed from school, go to his room and slam the door. He was in Jr. High at the time and Mom says, she wouldn’t interact with him much except to make sure he was still alive, and to let him know the food was ready.
When you are a younger sibling, you often tend to look up and emulate/try to imitate your older siblings, out of the feelings of “that is how I need to act, just like____ ((whatever the name may be). For me, when I tried to do things my older brother, Jared, did, it often got me into trouble; examples of this include the time I nearly drowned at Blue Bayou Water Park in the wave pool and another time when I was crossing the highway we live on, to head home from the neighborhood across the street from where we lived.
I was about 5 years old, and every summer one of the highlights was to go to Blue Bayou Water Park with my Aunt (one of Mom’s sisters-in-law) and her children. At the time I had not taken swimming lessons yet, so I stayed in the shallow ends of the wave pool, or went in the kiddie pool. We were in the wave pools and the waves had not started yet; my Brother had come to meet us and right before the waves started up again, he was heading out to the deeper parts; At the time, I admired and looked up to my older brother, and tried to follow him. I was crawling on my hands and knees into the deeper and deeper (but still in the shallow part) of the wave pool; the waves started and knocked me over, and I started to panic, so I didn’t even think to stand up and run back to mom. I just stayed under the water, coughing and spitting up water, waving my arms. Mom ran over and “rescued” me. I think it was this incident that convinced mom to get me into swimming lessons. The pool and water soon became a big part of therapy for me and I love to swim now; I am convinced I am part mermaid. I want to be able to breathe underwater, swim with dolphins; I want to be just like “Ariel,” the little mermaid.
The other incident was when I nearly got hit on the highway we live on. My Brother, his friend, my mom, and I were across the highway in the neighborhood, riding bikes (I had training wheels on mine). The sun was starting to set, and the mosquitos were coming out and biting me. My brother and his friend were old enough to cross the highway by themselves, so they told mom and began to leave. Mom was talking and visiting with one of the neighbors, kind of distracted; I kept tugging on her arm, ready to go, but she wasn’t listening. That is when I saw my brother and his friend leaving, so I followed them; His friend noticed and started to lag to watch me. My brother looked both ways and crossed the highway, with me behind him. I, however, was too young to know the whole “look both ways before crossing,” rule, and started right behind my brother, just as a huge 18 wheeler started towards me, really fast. Luckily, my brother’s friend was behind me. He grabbed me out of the road just in time. Dad was in the front yard, and he looked like he was about to have a stroke! I think my brother got in trouble instead of me, but I can’t remember for sure.
I think it was after those two incidents, I learned not to try to imitate my older brother. He was older and knew how to handle life more than a little kindergartener did.
My brother and I did fight and have that sibling rivalry thing, up until I returned from surgery. We had rare moments where we didn’t fight or argue, but we were two different individuals. When I was younger, Jared had chores, while I didn’t; when dad would fuss at Jared to go do chores, occasionally I’d fuss dad and say “quit working Jared like you a slave-driver, dad,” but he’d often tell me “stay out of it, Jamie.” And I quickly shut up.
When we did argue/fight, it was often because I was a hyper little brat; I will admit that. I think it was mostly, I wanted him to play with me, and he wouldn’t. I called him names: “Jar-head, armadillo (I have no idea why,) Boy (that was more when I was a baby/preschooler).” Sometimes, I’d have a “food fight” at him with my tea-party play food. He was a boring teenager who didn’t want to play with his kid sister, and I wanted attention from my big brother; I just sought it annoyingly. He would pull jokes and pranks on me, and I took it the wrong way and would cry. When I was 2 years old, he put a frog in the “golden Easter egg” during an Easter egg hunt, and to this day, I blame that for my phobia of frogs. Sometimes, I would pick/instigate it, and when he’d try to “strike back,” I’d go hide; like the one time in 2nd grade when we had ice/snow, I went outside, got some icicles, and stuck it down the back of his shirt when he wasn’t looking. Afterward, he went outside to get some, I ran to the bathroom and locked the door.
When he had friends over, I’d try to hang out with them, tag along, and sometimes he’d lock me out of his room, or they’d torment me, by locking me in the hallway till I was a crying mess, banging on the doors; sometimes, one friend and him would pretend that they were going to put me in the oven; they wouldn’t actually turn the oven on, just open it and act like they were going to put me in; I’d cling to that friend’s neck and beg “No!”
One time when I was 6 years old, he had to babysit me. I was playing with his Nintendo NES, but he got mad that I had taken it out of his room without permission, so he unplugged it, and put it back into his room. I was easily scared of everything and every villain of every movie, but yet, I watched Anastasia the movie that night and slept on the floor in a sleeping bag in his room. I heard a noise, a voice,“Jamie, go unlock the back door.” It was my parents; it turns out they had locked themselves out. I tried to shake Jared awake, but to no success; I was so scared that it was a bad guy, trying to trick me, but I did go unlock the door and luckily it was my parents; I later found out, my brother was faking sleep just to see what I would do; what a jerk!
As I got into my teen years, he would be annoyed because unlike him, I had no “thirst” for knowledge. He felt I was “ignorant” and that was one of his pet peeves. He’d occasionally try to help me with math or science, but he’d end up confusing me more, and I’d get aggravated and snap at him. Other than that, we didn’t talk or hang out, mostly cause he was in college and I was still young and “ignorant”. The only time I remember him smiling during this time was the one time he got drunk and “creepy”; we had gone to a wedding for a cousin, and then after we went to see a movie: Mom, Dad, my brother, his girlfriend, and me. I don’t know how this happened, but somehow I got this seat between him and his girlfriend; my brother started to hug me, smiling, and ruffle my hair: I wasn’t used to that treatment by my brother, so I looked at his girlfriend and said: “switch seats with me, I think your boyfriend is plotting to kill me.” Another memory around this time was when I was getting curious about my Ehlers Danlose and my brother who always had an interest in science, came to me and held a scalpel and said: “all I need is a skin sample and I can get you your answers.” I looked at him and yelled “I’m not a science project, heck no! I’m not letting you cut me with that thing, get it away from me, weirdo!”
It wasn’t until I guess that I got into college myself, that we started to have a different relationship. When I’d see him, he’d ask me about my classes and how they were going, he’d offer to help me out when I’d hurt with aches, etc. He was there when I met Dr. Lenke for the first time, and he asked questions to Dr. Lenke. When my family did a benefit for my medical funds, he and his girlfriend helped out a lot. I guess what I am saying is, once I got into college myself, and wasn’t as “bratty” and “ignorant” he started to like/tolerate me, but it wasn’t until I got home from my St Louis journey, that our relationship got to what it is now; When I first got home, I had gotten a new computer and he was helping set it up. He had me sit next to him to watch, but he would ruffle my hair, and just smile at me; it’s like “uh…weren’t you suppose to ruffle my hair like that when I was 5?” Now when we see each other, we give hugs, no kisses because that’d just be too odd. He asks about how things are going in my life. I ask about his occasionally. We have a good relationship now, it was odd at first because I was so used to the tension, but I love it now. I know when I need it, my big brother will always have my back; Love you, Bro.
I try to usually be a pretty positive person, but like we are struggling financially. The mattress in our bedroom is killing both me and my fiance’ backs so need a new mattress (plus I am still paying this mattress off, 4 years later.).
I dropped my laptop a few weeks back and ever since, have been having to use HDMI cable and tv as a monitor because the screen doesn’t wanna turn on and the last few days, the laptop is starting to show signs of dying worse off. (My fiance says he will build me a desktop pc, so hopefully, my laptop can hold off till then or I can afford to get a keyboard accessory for my Ipad Mini tablet. (I will need one eventually when I go back to college classes.) Since then, my laptop has stopped working with HDMI and my fiance’s cousin is looking into fixing my laptop and since its family, I probably will get a discount but will still cost sadly.
Then finally, I feel like I am straining my eyes more and more each day, even with my glasses. I cannot afford to go to LensCrafters (they don’t take Medicaid) at the moment. Sometimes I think I should just bite the bullet and just get the fricken laser surgery, but I am also scared to do it.
I hate ranting and venting, It just gets overwhelming at times…
Also, Shane Dawson, a YouTuber I have been following since the beginning of his career 2008, and Jeffree Star (who I just started following last year on youtube) collabed and made a makeup collection together and I cannot afford it and I am legit sad and disappointed about it. I just miss being able to afford all the things I wanted. But no, I gotta “adult” and pay for college out of pocket, pay for bills, and rent (thankfully after March that will be done..the rent anyway.) Things will get better, this is just a bump in the road. With God at the helm, I am positive we can make it through any rough weather. ❤ ❤ ❤ God’s will be done.
I have a lot of dreams and ambitions, even despite having a severe chronic physical disability/handicap, but with the right amount of patience, determination, willpower, confidence, hard work, and God almighty at the helm of my life, anything is possible.
I will pick one thing at a time and will try to accomplish them all eventually, but one at a time.
As a child with a physical disability/deformity, you would think I would be cautious and careful, right? Wrong. I was always running around, hyper, cutting up, showing off; I didn’t know the risks of my behavior.
In 2nd grade, I had bent down really quick to pick up something off the floor, after a sleepover and instantly I fell to the floor holding my side; I had pulled a muscle. My friend ended up having to go home early and I had to lay with a heating pad on my side for the rest of the day and the next day (I think).
After that incident, you think I would’ve slowed down and been more cautious, right? Wrong again. I was still running around, hyper, cutting up; being a typical child. Mom and I were in the neighborhood one time, I was riding my scooter; we decided to race and when I went to put my foot back on my scooter after pushing it really fast, my shoe lace loop (the loops you tie) got caught on the knob part of my scooter that adjusts its height, and I fell over, scraping my knees; I couldn’t even walk.
Still, did I learn? Nope. There were times I fell just by walking on a handicap ramp after rain in new sneakers because they didn’t have “traction” yet and ended up with a giant bruise on my tailbone, burnt bottom of my foot by walking barefoot in the backyard and stepped on dad’s cigarette butt, splinters in my foot, ants in my pants from sitting in grass near a pile, I been there and probably done it all, but the worst one was in 9th grade when I broke my collar bone. How did I do that, you may ask? Well, let me just begin by saying “Never wear skates in the car.”
I had gone to a skating rink birthday party, and afterwards, I was still in “Skating mode,” where I still wanted to skate, but the rink was closing for the day; Mom let me wear my skates out to the car, so that when I got home, I could skate on the driveway. When we pulled up in the garage, I went to get out of the car and lost my footing; I grabbed the handle to “catch myself,” and felt a sharp *POP* I instantly let go and fell on my butt on the ground. I screamed and cried because it hurt so bad; I couldn’t even get up on my own to take my skates off. Dad and my brother had to come out and help me; one of them took off and saved my skates while the other took me in and put me in my bed. After going to
the orthopedic dr., I found out I had broken my collar bone; I had to wear this strap thing that looked like a bra for your spine, for like the rest of the school year (March-May); at least, I got out of P.E. (not that I needed an excuse, once I got passed Jr. High, they never really pushed me to participate.)
Yes, with a disability, you want to do everything that other people do, you want to fit in, you want to be “normal,” but you also need to stop and think about the risks, weigh the pros and cons, before you do anything. I’m not saying, live your life in fear of doing activities, all I’m saying is slow down and think, do what I didn’t. Learn from my mistakes.
The Girl Scouts of America promotes character, outdoor activities, good citizenship, and service to others. As a child, I was a girl scout; and one of the top cookie sellers, thank you very much. HAHA! I joined girl scouts when I was in kindergarten. A few weeks into the year, our troop was about to get broken up, because our troop leader was moving or something, so they called a meeting and asked for volunteers to be leader; desperate to keep my friends and me together, I picked my mom’s arm up, and she got stuck being leader. Sorry, Mom for that! I enjoyed girl scouts, it was a fun way to keep up with my friends: we did crafts, went on outings, etc. Since mom was the leader I thought I’d get away with a lot; but, boy was I wrong! If I tried to pull a stunt, like not do an activity, etc., she’d pull me aside and fuss me/correct me. I’m not complaining, I wish she’d have done that more to help me face fears, instead of just doing activities I didn’t want to do due to laziness.
I loved it when it was cookie-selling time; I have always been very competitive and since I don’t have the physical ability to do sports, I do it with stuff like this, or games at the fair/games at Gatti-Land, and now the casino. When it was cookie-selling time, Mom would take the sheet to work, I’d go in the neighborhood, ask family, etc., just like I’d do for school fundraisers; I was very driven to get those prizes! It sure helps when you know almost ¾ of your hometown and you are a social “butterfly”.
In Girl Scouts, they also would have tea parties (I loved the cucumber sandwiches), holiday parties, we once slept over at the church hall, a lot of really fun memories; well, except the campout in the backyard, that was miserable. We got eaten alive by the mosquitos!
In 4th grade, we stopped girl scouts, because mom started working full time, and no one was willing to take over our troop, so it just fell apart. It was kind of sad because it gave me a sense of “normalcy” of a girl’s childhood, but mom always found a new activity for me to keep me entertained.
I sure do miss those days of cookie selling, earning patches, and being competitive; it was those days, I hadn’t realized I was different because I was surrounded by friends who treated me just like everyone else. Girl Scout forever!