peeks into my life dealing with everyday life and obstacles as well as obstacles of dealing with disabilities and accessibility obstacles, Chronic Pain due to broken spinal rods, living on pain medications, dealing with anxiety/depression, experiencing the newness of love, and fighting for my right to live and love my life in an ableist society.
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!
It was on a trip to New Orleans Children’s Hospital for an orthopedic doctor appointment we were stopped by state police for speeding. Never before in dad’s life has he ever gotten off with just a warning. The officer was a Shriner. He gave his business card to my parents and told them about the wonderful work of the Shrine Club, which is free to families. After a few more visits to New Orleans doctor, they decided to get a 2nd opinion. My parents wanted a 2nd opinion because the private physician kept changing his mind about when surgery should be performed. I was starting to pull up. He bounced back & forth as to waiting until after I started to walk or before. They didn’t feel he was confident about what would be best for me. Mom called the local Shrine club; 2 very nice gentlemen came out the following day with paperwork and took pictures of me. Shortly thereafter I became a Shriners Hospital for Children-Shreveport patient. Shrine doctor decided it would be better before I started walking. Why wait? It had to be done anyway. Mom and I went to Shriner’s Hospital in Shreveport, LA a few days before surgery. Surgery was done at Christus Shumpert. I had to stay on my back in ICU for a few days. My parents had a room in the hospital with the freedom to come into ICU anytime to see me. The 1st night after surgery, I rolled onto my stomach and got up in crawl position just as mom walked into the room to check on me. I was being monitored in the nurse station. My nurse came running into the room to put me on my back; Even back then, I was such a little rascal and terrifying the nurses! LOL. After a brief time in the hospital, I was discharged with a cast around the torso area. The cast had a hole in the stomach area around the belly button. I complained about itching inside the cast. Dad would vacuum inside the cast using the long nozzle.
Shreveport is about a 3-hour drive from my home. I remember those trips to Shriners Dr. appointments so well because they were so memorable. During these trips, we had a tradition of going to the mall down the road afterward for Lunch at Piccadilly and then shopping; I especially loved going near Christmas time or Valentine, because I could get holiday shopping done.
Since it was a 3-hour drive, we often left my house extremely early; sometimes when I was much smaller: I’d pack a bag the night before and my parents would just load me up while I was still asleep in the morning. I was so small, I could slink down out of sight and change in the backseat of the vehicle. We’d often stop at McDonald’s to get breakfast; which mom and I often split the “Big Breakfast” and if there was time, she’d let me play in the playground for a tiny bit. Upon getting to Shriners Hospital, Mom and I would go sign in, and then I’d run off to go play in the waiting area and, of course, make new friends with other children. As I got into the preteen years, I no longer wanted to play with the pretend kitchen set, and would watch the movie they had on or go on the computer to get on Myspace or whatever; sometimes while waiting, I’d go to the cafeteria area and get popcorn or a cookie or a soda.
Once they called me to the back, we’d go straight to “weighing” and then to X-ray. I remember when I’d get weighed, they would often tease/joke with me because I hadn’t gained much in 6 months and they’d jokingly ask “does your mother feed you?!” To which I would laugh and say “yes, I eat like a horse; it just doesn’t stick to these boney hips!” (I also had really bad stomach problems so everything would pretty much go right through me.) In X-ray, I knew the routine of how they wanted me to stand: Back facing them, arms wrapped around something a metal box thing, feet slightly apart. I always got stickers and a stuffed animal/toy if I behaved in X-ray right away, instead of sometimes being mischievous and acting like I didn’t know the routine. After X-ray, it was to go bring my X-rays to the nurse/doctor meeting lounge area and then go sit up front and wait to be called back to be put in a clinic exam room to see my Dr.; Dr. Richard McCall.
Upon getting placed in a room, there wasn’t much to do in the room and sometimes he would take forever, so I’d go in the hallway and peek into the nurse/doctor lounge and giggle, spying on them while they looked at patients’ x rays, playing peek-a-boo: hiding when they’d look my way; Sometimes, I got caught by the nurses/doctors eyesight, but half the time, they’d just play along. I could always tell which X-ray was mine and I would sometimes go right up behind Dr. McCall while he was looking mine over and I’d point out “that’s mine!” and would trace the curve outline with my finger: He was so patient with me and my fascination; he’d sometimes sit me on his computer chair, and show me where the Scoliosis started and his ideas for future surgery “Once you go through puberty, “ yadda yadda yadda, a plan that never went to full fruition during my Shreveport checkups because my body had waited so long to “go through puberty” and the risk of paralyzing me was too great according to him when they discharged me at 17.5 years of age.
I remember one time, I think it was coming back from a checkup appointment, I for some reason stuck my head under mom’s driver seat of our Ford truck; she had to pull over because I got my head stuck. Why was I such an odd child?
I had to wear a body brace due to my Scoliosis. For those who do not know, bracing is sometimes a treatment for Scoliosis patients. I had to wear my brace from 2 years of age, until 8 years of age, when the doctors decided the bracing wasn’t helping; it might’ve been because I’d “pull a Houdini” and escape out of it. I despised that brace: it was hot, itchy, and so uncomfortable; when I’d take it off, I would scratch my itchy body for like 15 minutes straight. The undershirts for the brace, that were supposed to help, didn’t help that much. The only reason I liked my brace was that I had protection if someone hit me in the stomach area and because I had a place to put all my stickers. The worst part of the brace beside the itchy hotness of it was being molded for a new one. Being molded for a new brace was the worst because they use plaster of Paris or something like that to make them, and when they mold your spine, it gets hot and burns: I only remember being molded for a new one, once; I cried and screamed, throwing a tantrum, saying I hated them, until afterward when I got a toy to cheer me up; I named the doll “Cynthia,” because I was obsessed with Rugrats at the time, and it looked like Angelica’s Cynthia doll.
It didn’t do much good for me, so I was able to discontinue the brace after age 8. I had lots of memories of my brace.
There was a “game” I liked to play with my mom. I called it “Suitcase game” where mom would hold me by the straps of my brace and swing me in the air like I was a suitcase. How anyone never called child protective services, I will never know. Another memory was one of my mom’s favorite memories of me in my brace. They had Velcro straps on the back of it and Mom thought it was out of my reach. This memory shows another factor in my determination. We happened to be going somewhere and I was asleep in my car seat. Mom says I sat up in my car seat, eyes still closed. She says I reached behind myself, undid the Velcro straps, then proceeded to stick my arms into the brace, and push it away from my body; Escaping out of it. She says, before that happened, she would not know how I’d escape out of it because I would be put to bed in it, and when she’d come in the next morning to wake me up, I was out of it. Now she knew; somehow she always discovered any of my secret tricks! I eventually always got busted! HAHA!
I didn’t like my brace because when it was very hot outside, I would sweat and it’d start to itch, but other than that it didn’t bug me that much, except after eating because I always had stomach aches after eating. I did however like it whenever my body would get put in dangerous situations: my brace would’ve protect me: When I fell and knocked out my front teeth, I didn’t hurt my back because I was in my brace; When I had a girl that thought I was a baby doll and would carry me around, she dropped me one day, the only thing that got hurt, was my butt because my back was protected by my brace. Even though I hated it as a child if I had it on maybe I wouldn’t be so achy all the time now. I don’t know, just kind of wish I didn’t have the aches I am having now—Old Age Sucks!
Anyone who was around in the 90’s must remember the heaven on Earth for kids known as the Discovery zone, If not, here is a video commercial to remind you.
DZ was my favorite place to go; Mom used to have to practically drag me out (kicking and screaming with tantrums) and I’d eventually gotten a spanking for misbehavior.
However, DZ eventually closed down all locations in 1999. I remember the day I found out like it was yesterday; I begged my babysitter to take me to Lafayette because I wanted to go to DZ. We pulled up at the location to find the lights off, doors locked, and the inside completely bare. I couldn’t read well at the time, but my babysitter told me that they were no longer in business. I called my mom crying because it felt like my whole world fell apart. (I didn’t do well with changes; I still don’t LOL)
There was soon news floating around social media that DZ was making a comeback, however, it wasn’t anywhere local near me, sadly.
It inspired a dream in me though for my hometown, home-state, and maybe eventually national; If I ever hit the mega millions, I would build a fun-entertainment place for kids! It’d be a combo of DZ, kart ranch, bowling alleys, trampoline and fun jump places, arcades, etc ..and it’ll be called “Auntie Jamie’s Funtime emporium” (working title, may change..)
But that’s one of my dreams!! #determined. a mix between Discovery Zone/ Gatti Town aka Incredible Pizza/ Sky zone/ Jump Zone/ Kart Ranch/Skate Zone/ Chuck E Cheese/ Children’s Museum… all in one. Wouldn’t that be fun?! the 90s kids would remember the fun of Discovery Zone, Skate Zone, Kart ranch, Children’s Museum, and Chuck E Cheese, whereas the newer generation would be familiar with Gatti Town, Sky Zone, and Jump Zone. 🙂 FUN FOR ALL 🙂 Damn, why can’t I have money to invest in such a project?
and the best part of mine would be: Handicapped and special needs accommodated: Wheelchair Accommodations/modifications, Quiet rooms for Autism kids, etc.
I even drew an outline idea of all the inclusions.
Originally I had been training Beignet to be a service dog and eventually with all my pain from broken rods and then surgery recovery, It kind of fell by the way-side, however, I am getting back into it. Today We started training to try to get her to retrieve coke plastic bottle for me (in case I dropped it or something).
As someone with a disability, the future is always uncertain and scary. I have always had doubts and questions about what I could do as a job or career because anytime I get sick or have a pain day and end up in bed, the worry and doubt come in; “How will I work? No one will want to hire if I can never go into work!, How will I function at work with pain if my pain meds knock me on my butt and make me tired?” On and on, the worries come in and circle in my head until I am an emotional, anxious mess.
That is the beauty of at-home businesses; you can be your boss, control when you work, your work can be done from a mobile device or computer, etc.
Avon is technically not new to me; my Mom used to sell it when I was in High school and I did help her by promoting them at school. I enjoyed it and I am very social when not in pain, plus I know how to use my social media outlets to my advantage.
It’s officially December and I am not in the Christmas spirit like usual. Usually, I would be going all out with decorations and such, but not this year- maybe lights and that’s it. Due to moving in Jan. We don’t want to have to haul extra stuff than what is needed. Plus, it will be the first Christmas without Mommie, Mr. Mike James, my cousin Racheal Mary Meche, Ms. Nancy Moticka
It has been too much death in one year; not to mention all the other I care about who isn’t around anymore either- My other grandmother (maw), and then one of the most influential women in my life, Mrs. Evelyn Zehner, “Mrs. Z” from Camp we can do. It’s just so hard… I know there are worse people off, but for some reason I just cannot get into the spirit yet this year. Is it because of not decorating much this year, the financial stresses and having to ask mom to loan money for us to buy Christmas gifts until David can find a job? I don’t know. Just tired of always being miserable. I can’t remember the last time I was sincerely happy for more than a few hours.
😥 I don’t know, I just been depressed all day today. Hopefully, I can get out of this funk. Prayers appreciated. I hate it when I get depression.
Warning: I am about to be really emotional and sappy. Mrs. Z, The director of Camp We Can Do until 2010, has been on my mind a lot lately. RIP. I miss her so much and she was a major influence in my life…
Imagine: Being an 11 year old girl with severe physical limitations due to Severe Kyphosis/Scoliosis and Ehlers Danlos Syndrome. Imagine feelings like you don’t fit in anywhere and that even though you have friends, you constantly question whether your existence is just a burden on your loved ones.
Imagine: Starting a new scary adventure; a summer camp, Something I had never done before aside from daily VBS for a week at Church. Even though, I knew that it was for Special Needs individuals like me, I still was stressing. I remember going shopping with mom for summer clothes; constantly coming out of the dressing room in each article of clothing, asking the same repetitive question “Does this hide my curve? Does my stomach in this? Do I look ‘Normal,” and God forbid if something I liked didn’t look good; Talk about “Dressing room Meltdown!” of locking myself in the dressing room, beating myself up by hitting myself in the face, on the arms, crying my eyes out because I just wanted to be “normal.” The first day of Camp finally arrived and I was so nervous and scared, I didn’t socialize with anyone, I kept to myself, and didn’t want to participate in any of the activities except kitchen and arts and crafts. When the camp group activity (where the whole camp got together to participate), Mrs. Z Noticed I was not participating and when she tried to get me to participate, I cried like a little baby brat about “I don’t wanna,” and “What if they laugh at me?” It’s like come on, they have special needs too. Why was I so self-absorbed? So ignorant? I am so embarrassed was back then. Mrs. Z let me skip that first day group activity, but we had a “come to ” talk where she explained that I would eventually have to participate and try to make friends, that no one would make fun of me and if they did, they would deal with her. Thanks to her and camp we can do, I came so much out of my shell (at least there) and did things, I never would’ve done anywhere. I did the talent shows, the girl makeovers; I made wonderful friendships, and even volunteered as a counselor after I turned 18. Had I not met Mrs. Z who pushed me to realize I was not limited by my disability, that I just had to find an alternate route and the statement/Motto of Camp We can do, “Yes We Can!” Had I not met Mrs. Z and the wonderful staff who were encouraging and supportive of the campers, I don’t know how I would’ve turned out. Yes, my mom always encouraged me, but I always figured “She’s my mom. She has to say that.” Coming from others, it’s a confidence builder? I 100% confident and in who I am? No. I still have some work to do, but without Camp We Can Do, (and Shriners in St Louis later on), I don’t know what my life would’ve been? I don’t think I would’ve flourished the way I have since starting Camp We Can Do and meeting Mrs. Z. She pushed me out of my comfort zones to explore other aspects life. I wish she was still around to witness my life and accomplishments, but I know she is watching over me, and hopefully I am making her proud. God bless you Mrs. Z, (and I am tearing up writing this), I miss you so much! There is so much I wish I could just talk with you about. I love you and hopefully, I can make you so proud of me. ❤ ❤
There once was a lady who was sweet and kind, She worked at Camp We Can Do, For quite some time. Her name was Evelyn Zehner,But to the campers at Camp we can do, Her name was “Mrs. Z” And she was loved by every camper, Including me. She never saw a handicap or Disability, She only saw children, who wanted to have fun, But could also be held accountable for every misdeed. She treated us all “normal”, Never made excuses for us.But loved us so much, that was evident. We were all her babies, Like a parent, Even when we were misbehaving, she still loved us. Every Morning we were given “good morning hugs,” Right as we got in the door, running into her open arms,We loved our “Mrs. Z,” Sometimes, we’d get in trouble just to go sit in the office with her; Or others, like me,Would just sneak away from group and peek into her office, Until she would catch me, I can still hear her saying,“Okay Jamie, I need you to go back with your group.”It was said so often, it should’ve been stamped on my forehead. The days always ended the same,As children’s rides would arrive, the kids would hug Mrs. Z tightly, She’d squeeze them with lots of love, And tell them “Rest well for more fun tomorrow.” Or “Have a good weekend,” Whatever the case would be. She knew what the kids were capable of, What they knew, how they knew how to play “sympathy card,” She was tough, but she was loving; Firm but Fair. She was big on teaching life skills. She knew these kids, That others counted out,Could learn these life skills, And prove something to the world;That they could be something with the right dedication and discipline. Sure some times, her methods seemed extreme and harsh, Maybe “too hard,” on kids who already “had such a tough life,”But I cannot recount a single kid who ever held a grudge;They always would hug her, and still knew her love for them. We learned how to cook in the kitchen, There would be people who came in to read stories to us, People who came to teach us healthy eating, nutrition, hand-washing, etc.We’d go to library, museums, They would teach us how to do grocery shopping,She knew that special needs couldn’t always learn just from textbook and memorization, We also had to go out and experience it, And of course, try and fail over and over till we got it. But she never gave up on us; she never counted us out, Ever! Sure, she is gone, And we are all sad, But her legacy will live on, In the memories and love,The impact she had, On thousands of lives. Fly High, Mrs. Z, You took care of everyone here on Earth,Now it’s your turn to enjoy some pampering,Up in heaven; you have definitely earned your angel wings, Sweet woman. Long Live, The advocate, the disciplinarian, and second mama, To everyone, especially children and parents from Camp We Can Do.
It was in 2008, when we went to Kemah boardwalk for the Camp’s big field trip. I wasn’t riding any of the rides; just watching all the other campers having fun. Mrs. Evelyn ZehnerEvelyn P. Zehner was the one who told me “your parents didn’t pay all the money for the big field trip just for you to be a spectator.” So She encouraged me to try a ride. I got on a tower drop (not realizing that I was terrified of heights), and I never been so terrified in my life, but I also am glad I did it. (isn’t it funny how something can scare you, but you are proud of accomplishing it anyway) Mrs. Z was always encouraging us to step outside of our comfort zones, and really thats what should be encouraged, because if we don’t, then how will we ever find out what we like or are good at …if we are counting ourselves out before trying, or scared to fail, then what kind of life is that? Mrs. Z had that tough love, but sometimes, that is the formula for success…not always the case, but sometimes. I think the lessons she taught us, and what many influential people in my life taught me, has influenced me into the person I am today. Yes, I still have some “kinks” to work out and smooth out, but for the most part, I am proud of who I am and I have Mrs. Z as one person to thank for that.