My SMA Story
My Life Story
I was born January 7th, 1999 at 11:58 at night just two minutes before midnight. At 11:59 my little twin sister was born ONE minute before midnight! Hahaha yes, I have a twin sister, but I call her my little sister because I am older by one minute. If I was born at 11:59 and she was born at midnight we would have been twins with separate birthday’s, imagine that! Obviously we are fraternal twins because I’m a boy and she’s a girl. Months go by and luckily for my mom having twins she was able to catch on quickly that something was wrong with her son because my twin sister was able to do things that I couldn’t. My twin sister was able to walk while I was still crawling everywhere and time went by and my mom just knew something was wrong. My mom made an appointment with my pediatrician and told my doctor how I was still crawling and I couldn’t hold my balance when my mom would try to stand me up (so i could learn). My pediatrician just said “ohh.. he’ll grow out of it. He just needs a little more time..” My mother took me home and time had gone by and I was still in the same situation.. My mother made another appointment and insisted for my doctor to start running tests because something was wrong. At two and a half years old that’s when my mother’s life had changed. I’m not a parent yet, but I’m sure just like any other parent we hope for our kids to be healthy and in good health. My doctor did a muscle biopsy and that’s when my mother found out that her son had a rare disease known as Spinal Muscular Atrophy Type Two. This is the day my mother’s life had completely changed because she now had to take on the responsibility to care for her child that’ll never be able to become dependent and offend for himself. Now for those of you who aren’t familiar with SMA, I’m sure the majority of you don’t know what this disease is.. here it is.
What is SMA? Spinal muscular atrophy (SMA) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. Are there more than one type of SMA? When SMA symptoms are present at birth or by the age of 6 months, the disease is called SMA type 1 (also called infantile onset or Werdnig-Hoffmann disease). Babies typically have generalized muscle weakness, a weak cry, and breathing distress. They often have difficulty swallowing and sucking and don't reach the developmental milestone of being able to sit up unassisted. These babies have increased risk of aspiration and failure to thrive. When SMA has its onset between the ages of 3 and 15 months and before the child can stand or walk independently, it is called SMA type 2, or intermediate SMA or Dubowitz disease. Muscle weakness is predominantly proximal (close to the center of the body) and involves the lower limbs more than the upper limbs. Usually, the face and the eye muscles are unaffected. Late-onset SMA (also known as SMA types 3 and 4, mild SMA, adult-onset SMA and Kugelberg-Welander disease) results in variable levels of weakness. SMA type 3 Symptoms usually appear between age 18 months and adulthood. Affected individuals achieve independent mobility. However, proximal weakness in these patients might cause falls and difficulty with climbing stairs. Over time, many lose their ability to stand and walk so instead use a wheelchair to move around. Most of these patients develop foot deformities, scoliosis, and respiratory muscle weakness. SMA type 4 is late-onset and age of onset is not defined but is usually after age 30. Type 4 is a mild form of SMA and therefore lifespan remains normal. Patients are able to achieve motor milestones and maintain their mobility throughout life.
Me and my twin sister attended preschool together and I never really felt different from the other kids. While kids were taking their naps I would go and play with the toys entertaining myself for that thirty minutes to an hour. I went to an ordinary school where I was their only disabled student so it was all a teaching and learning experience for everyone. I remember my mom teaching this woman at the school how to take me to the restroom (I can’t remember if she was a teacher or what exactly was her position and title at the school) but her name was Mrs. Reyes. At first it was uncomfortable and awkward, but Mrs. Reyes had a disabled son herself so she was familiar with how to take care of someone who lived with a disability. For a while during recess I really didn’t and couldn’t do much because there was either sand or swings that I just couldn’t do so what the school had ended up doing was purchasing my very own special swing. Man was it fun! Me and my twin sister graduated preschool putting and wearing our cap and gown. Mine was blue for boys and hers was red for the girls.. we took pictures and were granted to move up going into kindergarten, haha.
It was in the middle of third grade year that we got the call I had gotten approved to transfer schools! I was attending Orange Center Elementary School and was able to transfer to Story Elementary School where they had kids who also were in wheelchairs and had other disabilities making me feel not left out anymore. I was really nervous because it would mean me and my twin sister would have to separate going to different schools so my mom told me.. “son, if you really want to go, I’ll buy you a cell phone for you to call me if you need anything.” To make myself feel more comfortable and at ease during the transfer. She had to convince me to go. I was super nervous and remember my stomach hurting because I was scared, but I had said yes and was now at a new school. The teachers showed me around and I felt so much more comfortable because this school was familiar with how to help us and what we need help with. Their accommodations were amazing and I loved it! I attended fourth grade this year here and had gotten my own special desk that was customized for me and my wheelchair. Shortly after I was in training to learn how to use a power/ mobilized wheelchair because pushing myself around was becoming harder for me. I had to go through a training where they had a power wheelchair at another school (I forgot the name of this elementary school) and I had to take the training there. At first when I started training to drive a powerized wheelchair it was after school so it was quiet and no one would be around.. so I wouldn’t hurt anybody running over their toes. I would drive this wheelchair around to get the feel and adjust to what it is like. I remember the first time I drove myself onto the grass in the back of the school and it felt amazing. It was the most amazing thing to me that I was able to do because I was able to go on the grass myself without anyone having to push me. It was scary at first because I wasn’t used to the wheelchair going over little hills and holes in the ground when I would drive over them. I felt like I was going to tip over, but of course I didn’t. It just was all new to me. A few weeks go by and after me driving this powerized wheelchair my physical therapist Amy, then tells me.. “are you ready to drive around with students being around?” I was scared because I didn’t want to hurt anybody. The bell rings.. and it was like we just poked into a hornets nest because so many people came from every direction coming out of their classrooms. I broke down crying fearing I would run someone over. My mom cleaned up my face because I was full of tears and had a runny nose from crying. I started driving down the halls ridiculously slow and passed!
Now it was time for me to get measured so I can get my very own powerized wheelchair accustomed to me. It took about six months or so with the process of my insurance having to approve it and then having it made. I came home from school and BAM! She was parked in my living room waiting for me to sit on her precious new seat cushion turning it on (the wheelchair I am talking about, hahaha). Mom sat me in it.. I turned it on, asked mom to open the door and proceeded to go outside. I went up and down our sidewalk, driveway, and then tested her off road capabilities! Who knew after this my life would then change giving me the freedom I never thought I’d ever have. I took it to school and these two guys named Sammy and James rolled up on me with their powerized wheelchairs and asked.. “what’s up, wanna race?” HECK YEAH I WANNA RACE! Let’s run it! All three of us lined up and raced around the school's playground where they had a walkway/ trail that went around it. Having a powerized wheelchair gave me a lot more freedom and lifted some of my life’s limitations.
My cousin Danny had just graduated high school and we became pretty close. My mom had asked him if he would like to become my caregiver. Before we finalized it he practiced showering me, dressing me, and with other daily living things. A few weeks later he had now become my caregiver. His mom and my mom are very close. My mom and my godmother (Danny’s mom) owned two houses right next door to each other. My mom owned a smaller house than my godmother. Because I was in a wheelchair my godmother and my mom had swapped houses so I could be in the bigger home having more room with me and my wheelchair. So my cousin Danny lived right next door to us which was super convenient. Danny's mom would tease him saying “I am his boss” which was technically true and I would get a kick out of it laughing because I was his boss and he was much older than me. I had a lot to learn because me being his boss being much younger than him got to my head. We started to argue and fight (not physically of course) and what once started to be fun and cool started to fall apart with our relationship. Me and Danny had a lot of our ups and downs within the years of him working for/ with me. At the end of the day he isn’t my cousin.. we consider each other more as brothers because of how close we have gotten.
It was around the middle of my fourth grade year I had visited my neurologist for a follow up with my scoliosis. I had taken x-rays and he was going to go over them with us (meaning me and my mom) and talk about how my spine is looking. My neurologist Dr. Gerardi explained how my scoliosis had gotten worse with the curvature of my spine. He showed up before and after x-rays and you can see how it went from being a little curvature to now looking like an S. He then went forward with the conversation and started talking about how we should consider having a Spinal Infusion because it was now crushing my left lung. I broke down crying because I knew I needed to have it done. We scheduled the surgery date for March of 2010. I forgot the actual date but I never forgot the month or the year of having this surgery. Once my surgery date was scheduled we told the family. My cousin Raymond who we call Booboo and my other cousin Natalie had picked me up a couple of times prior to this for the weekend and we would play Mario Party and watch movies. They heard about my surgery and took me out for another weekend to spin the night. They took me to Build-A-Bear at the mall and I made a dog dressed in a firefighter outfit with his jacket, helmet and boots. I even was able to put a little bark in him before we sowed him. I still have this dog to this day. After the mall we went out to eat and then to their house playing Mario Party and watched a movie before my cousin Booboo carried me upstairs and into bed. It was the next day and I got admitted, get an IV put in, and here comes my nurse along with the doctors and team who will all be involved with my surgery. I felt okay at first. My aunt Della came to be with me before I had gone in along with my grandma and other family members. After speaking with everyone at the hospital the anesthesiologists had scared me the most. They have to give the worst case scenario but also be very honest and specific so you know exactly what it is and can happen during the surgery. Once he left I started to panic and asked to speak to Dr. Gerardi again because I was now scared. He came and we talked, making me feel at ease again. He told the nurse to give me something to help calm me down and it was a liquid that I had to drink/ take a shot of. Whatever it was surely did calm me down, but I now was acting a fool of myself. Who knows it might’ve been a shot of Vodka now that I think about it.. just kidding. I was in the gown they give you before going into surgery which means I was in my birthday suit underneath. I pulled myself to the side and was showing off my behind with everyone having them all cracking up with my sillyness.
It was now time for me to go in and at first I was calm and okay, but once they started to roll me away I have my family giving me kisses saying “I love you I’ll see you after okay?..” Once they started to cry, that's when I started to get emotional too. I said back “I love you too, I'll be okay.” And I was now in the operating room. I get asked “what is your name?..” okay. “What is your date of birth?..” then my anesthesiologist asked me “do you like orange or cherry?..” and I said “orange!” Before he put the mask on my face for me to breathe to put me to sleep I asked “can I see Dr. Gerardi first?..” Dr. Gerardi was a great doctor and always made me feel at ease. The main reason I asked this is because I wanted to make sure they had the right patient. After we talked I looked up and saw my anesthesiologists start to give me the mask to put me to sleep. “Take a few deep breaths..” he told me. I inhale a couple good deep breaths. “You might feel a little sting with your IV. Can you count back from ten for me.” I start counting back “ten.. nine.. eight.. seven..” I was out! I woke up after the surgery and my mom was right next to me. I tried to talk but couldn’t because I had a breathing tube in my mouth helping me breath. I asked my mom “how long was the surgery?..” she says “you were in there for fourteen hours.” I look over to my other side of my bed and see two huge big bags of blood running through my IV. The nurse comes in and she starts to pull out my breathing tube because I was breathing and doing well. “Are you in any pain?..” I respond “I’m okay right now.” I tried raising my bed up and this is when it hit. I started crying and screaming because I couldn’t move. Not even a little bit. The nurse rushed to get and give me pain medication through my IV.. after a few minutes of me staying still the pain medicine started to help relieve my pain a little. My mom rubbed my head telling me how everything had gone great! I asked her “why is there blood running into my IV?..” she said “you had lost a lot of blood, but you’re okay.” I had to have two huge bags of blood transfusions because I had lost so much blood.
About a week went by and it was time to go home. I felt sore but looked great! Prior to this surgery me and my doctor have built a great relationship. I had gone home and was sitting straight! When I say I was sitting straight I was sitting straight! I felt super tall. A few days went by and my showering days were over because I didn’t have a customized handicap shower/ bathroom. My cousin Danny was off work being my caregiver during this time and my mom had taken close to a full year off of work to be with me for my recovery. I had to start being sponge bathed which sucked! The way my mom sponge bathed me though was as if I was in the shower because she would soak my bed making sure I was clean. A few days or a few weeks passed by since my discharge from the hospital and one morning when I was sitting up my mom noticed a quarter sized blister in the middle of my lower back. I said “DON’T TOUCH IT!” Because I was scared and now in fear of more pain. She took a picture of it and uploaded it to Facebook. JUST KIDDING about uploading it.. did I get yah? She took a picture and had me send it to my doctor. A few minutes later it bursts! You were now able to see about half and inch to about a full inch inside of my back. My doctor calls and they talk for a little about it and he says “don’t have him eat or drink after midnight.” Once I heard him say that we both knew I was going back in the next day. My stitches started to rip against my skin too and I strongly feel that it was because I was overweight that had to have played a factor. The next day I was right back at the hospital my mom was signing the papers to get me admitted again. I started getting prepped for another surgery to go into the operating room and my aunt Della showed up right before I had gone in. She came before she had gone to work. She worked at a military base for the United States Air Force so she was in uniform. Everyone who was going to be involved in this surgery had come and talked to us letting us know what they were going to do and who would be doing what when I was in the operating room. Since I lost so much blood the last time the risk was still very high plus with my SMA we all knew the possibilities with my respiratory. Dr. Gerardi looked at it and talked to us about what his plans were. Prior to him walking in they took blood tests and then gave me an IV. The blood tests came back positive for two major infections. I had no other option but to now have a Spinal Debridement because my mental rods from my spinal infusion got infected from being exposed and open in my lower back. I asked to have that calm down shot medication drink to help. I was okay but of course really scared. This was my first surgery I have ever experienced and the pain was no joke. They took me and again my mom and aunt Della gave me kisses telling me everything was going to be okay and how much they loved me. I am not in the operating room and again gets asked “what is your name?.. What is your date of birth?.. do you know what type of surgery you’re having?..” I confirm their information was right. Everyone in the room did their best making me feel comfortable as much as possible. Dr. Gerardi came into the room and said “everything will be okay Buddy.” Anesthesiologists started to put the mask on my face but this time it was Cherry scent. Anesthesiologists said “you might feel a little sting in your IV.” Then says “can you take a couple deep breaths for me and start counting back from ten.” I fall asleep and wake back up in the ICU having a little bag of blood transfusion and a tube in my throat helping me breathe. The nurse comes and pulls it out. (It feels so weird and leaves your throat sore for a while).
After I woke up I had this weird feeling like a sock was behind my back. This surgery was around six hours. What they had to do was do a spinal debridement (meaning take out the mental rods) and had put a sponge in the middle of my lower back right where the blister was. They stitched me back up from my upper neck all the way down to my behind crack. What this sponge did was connected to a machine and it helped suck out the bad bacteria and also would help with the healing to help close my back. Having this sponge in my back was gross to see the blood and was very uncomfortable. Everyday Monday through Friday I had to go into the operating room going under anesthesia for them to clean my back and swap out the sponge. I remember after a couple of times going back and forth in and out of the operating room I started to get angry with everything that was happening to me. I was completely over life and hoped I wouldn’t wake back up. The pain was so bad nothing worked. The only thing that helped relieve my pain was sleep and sleep was the hardest thing for me because of the pain. The doctors had found a solution to give me to different types of pain medication and that worked wonders for me. It helped relieve so much. I started counting how many times I would go into the operating room for my back and stopped counting after number 48. I was in the hospital for two and a half months.
Since I was in and out of the operating room a lot my IV’s would go bad very quickly and I was a really hard poke. Over the time I was there I had a couple IV’s, a picc line, and also had a mediport. My record getting poked to start an IV is 14.
The day had come to get my sponge removed. I go in for the last time into the operating room for my back and come out having a transparent tape covering my back. I even had stitches but the tape helped keep my back closed and together. Again I feel it was because I was overweight.. I started to get out of bed driving around the hospital going to the playroom doing arts and crafts and playing board games.
During the time of me being in the hospital I had to miss my big brother's high school graduation and his graduation party. I’ve never been one to show his emotions but it truly does get to you when life throws certain things your way leaving you to not understand “why me”. Life has forced me to “swim against the current, not with it.” My godmother had taken the time off work to be with me in the hospital so my mom could go to my big brother's high school graduation and also be there for his high school graduation party. My mom recorded the whole thing so I was able to see it. Seeing the family in the video and hearing them say “we love you wish you were here Victor” truly did mean a lot to me. My cousins and my aunt Alice had come down from Texas and they all visited me in the hospital too. My cousin Albert came down this summer and we were close. We would always talk on the phone and play games online growing up. The entire time he was down here in California from Texas he would stay there at the hospital with me and my mom. My mom never left my bed side and if she had to go do something I always had one of my aunts or cousins with me. My cousin Albert never minded to stay overnight at the hospital with me playing board games and watching TV.
Two and half months had gone by and it is now time for me to get discharged! WOOHOO!.. The hospital staff is clapping because I was finally able to go home. I was all happy. As I pull up into our driveway my dog Misty is wagging her tail being excited to see me again. She probably was thinking to herself “I knew there was someone that sat in a chair with wheels who lived here!” I get off with the help of my family hooking me onto the hoyer lift and bringing my wheelchair down from the back of the truck. I got in my wheelchair and it was hot from being in the sun when we drove on our way home. I start talking to Misty being all excited making noises that don't make sense to us humans but the dogs love it. I’m petting her. She's licking me, giving me the welcome home love.
I had a long road of recovery and was put on home studies for my fifth and sixth grade year. I was on antibiotics for an entire year because I still had the infection. Taking these big horse looking pills sucked, but it did cure the infection which was what counts. Also after the surgery I don’t really see it as a complete waste or having regrets I even had to have it done. The pain and unexpected infection sucked but “there is always a positive in every negative.” Since I had the rods in my back for a little while it did straighten me out. Once they took out the rods from doing the spinal debridement I was sitting straighter than I was before I had the surgery. Which was a good thing because it got me off of my lungs and had bettered my health in the long run.
It was two years later being on home studies recovering from my back surgeries. I was now attending junior high school at Elizabeth Terronez Middle School. I remember feeling nervous because I didn’t know anyone and I wasn’t sure how I would be in my classes since I was on home studies for two whole grades. Being on home studies yes, of course helps you get work done, but it is completely impossible to keep up with your class because you have a whole eight hours of work a day vs being on home studies you get about five to ten hours a week of learning. My special education teacher Mrs. Siemens gave me my schedule and the bell rang. It was time for me to go to my first class period. I got to class and it was Algebra. I had a guy teacher but I forgot his name. I drive in and asks “can you move the seat for me..” he moves the seat that was sitting in front of my desk. I drive in and asks “can you get me my binder?..” He asks if I needed anything else after. My backpack was behind my chair and was too heavy to hold and carry in front of me so I always needed help getting things from my backpack behind me. My mom bought me a binder with paper, notebook, and an area for my pencils in it so it was all I needed and was super convenient for me so I didn’t have to ask “hey, can you get this or that for me.” The class started and we fill out a paper that asked us questions so we all can get to know each other. During class I was so lost and confused I asked for help at the end of class. He said “come during lunch” to help me with my homework and class assignment because I didn’t understand the assignment we did in class. I went after class and he helped me, then it clicked! “This is easy!” I had said to myself because it now made sense to me. I understood it. It was now later on during the day and time for PE class. I had PE with the rest of the kids who also had a disability. It was regular PE in the class we went to but this period someone specialized with helping us with disabilities to help us get involved with the class so we wouldn’t be left out on certain activities. I met this guy named Alfonso. Alfonso was super shy, but throughout the day I started to open up little by little. We did PE and my last period was being with Mrs. Siemens in her class and I always had at least one class with my special educational teacher because if I ever needed help or to make new accommodations in my class she would be able to help. Weeks go by and I get my first report card having an F in math. What I once thought was easy became confusing to me because I clearly didn’t understand it. Fast forward towards the end of the year I was doing okay in my classes but not good. I was practically failing everything besides PE, no really I am not kidding.
In Eighth grade I had talked with my mom and told her how I was doing in my classes and how it was really hard for me. I couldn’t keep up or even understand the work. I decided to switch from being on diploma track (meaning get my high school diploma) and just aim for completion. I now stayed with Mrs. Siemens staying in her class and would attend two regular classes such as leadership and PE. This year was the year I made history at this junior high school because I managed to flip my powerized wheelchair giving myself a concussion falling out of my wheelchair. Let’s rewind a little bit to see what had happened. During PE class the kids were running a mile or doing something we couldn’t participate in. So I had seen a basketball laying around with my name on it (not literally with my name on it, haha) and me and Alfonso had a great relationship for about two years knowing each other. Alfonso played wheelchair soccer and with our wheelchairs we both a tilt function to recline our wheelchairs back. Underneath our wheelchair is a box that covers our wheelchair batteries. So what we would do is recline our wheelchairs back enough to fit the basketball to go underneath so we could drive with the ball passing and travel with it. We did this all the time during lunch so it was nothing new to us. Well this basketball wasn’t fully inflated.. I’m driving with the basketball underneath my chair and as I go to turn my wheelchair to pass the ball over to Alfonso my left front wheelchair tire runs over the ball picking me up into the air. Everything freezes for a quick second. Alfonso’s facial expression says “oh sh*t” and I slowly feel my wheelchair to tipping over to my right and I close my eyes.. BAM! I flip my wheelchair over and open my eyes back open. Everything is a blur and my ear is ringing like the movies when someone gets punched really hard or hears a grenade go off right by their ear. I open my eyes, my ears are ringing, my vision is blurry trying to regain focus on what just happened and Alfonso takes off to go get help. We were playing in the back where no one was around. So we were completely by ourselves just waiting for the bell to ring. Anyways I’m trying to still gain focus and my ear ringing stops. I see several people including teachers and security guards running over to me. They all get to me slouching down trying to figure out if they should call an ambulance or lift me back up into my wheelchair. Everyone is talking and I’m still in shock like “did this really just happen right now..” I’m half way out of my wheelchair lying right on my wheelchair joystick. The teachers and security guards are talking to me asking me questions with what hurts and at first it was nothing. I was fine. I hear one of the security guards say “I’ll pick him up and you guys flip his wheelchair back up.” I panicked because my back wasn’t still healed. Danny tried picking me up and it was painful. I said “push me back into my seat and just flip me back up. I can’t get picked up..” six big security guards flipped me back up while still sitting in my wheelchair. The teacher buckles me back in because I had fallen out of my seat belt. The nurse is there and she already had my pain medication with her inside her office. As I drove to her nurses office I looked at my hands and both of my hands were scraped and bleeding (not a lot like needing another blood transfusion) and once I was sitting back up my head started to hurt. My head was swollen and bleeding on it’s side from where I had hit the concrete. The nurse asks me while walking back to her office “do you know your phones number..” yes, it is… and she calls my mom letting her know what just happened. I SURE KEPT MY MOM BUSY DIDN’T I? That’s okay she’ll thank me later when she’s a hundred still walking without a cane.
I get into the nurses office and she asked me “do you want your pain medication?..” I said yes. Since I was in a completely different school district my school district wanted the money so they had stopped paying for me to ride the bus and had me now getting picked up with my own driver. Which was better because I now was the only one and didn’t have to go around picking everyone else up for an hour. So since we didn’t have a handicap van at the time and it was a challenge getting me in and out of the truck my mom had called my driver (the one who picks and drops me off from home to school) and asked if he could pick me up early because we only had about an hour or hour and a half before school was over. He picks me up. His name was Mr. Lowe (I think that’s how you spell his name) and he asks me if I was okay, puts the ramp down and buckles me in heading to my house. The hospital that specializes with me was at Valley Children’s Hospital which was about a forty five minute drive from my house and he couldn’t drive me directly to the hospital. I get home and my home is checking me out looking at my head. At this point I started having a lot of pain with my back from being jerked and falling and with my head from hitting the concrete. Light, sound, and even bumps/ little cracks on the floor would give me a huge headache. I had to keep myself driving around in my wheelchair though because when I would stop and sit still it would hurt more because my mind was focused on the pain so driving around the house was my distraction that would ease the pain a little. My mom and my cousin started hooking me up onto the hoyer lift putting me inside carefully as possible. I get inside the truck, they load up my wheelchair in the back bed of the truck, they get in and we head straight to Valley Children’s Hospital. I went to the emergency room and the pain was getting worse in my head. They asked me what had happened and I told them. Because my head was in so much pain they immediately took me to the back and I talked with the doctor letting him know what happened and why I’m there. I was super tired and kept trying to fall asleep but I had to stay awake until they knew what was wrong and if I had any severe damage. He ordered a CT scan and an x-ray for my spine. My results came back with me having a concussion. They bandaged my head and I get discharged to go back home. For weeks I was sensitive to light and sound. The littlest sound would trigger my head to hurt. I was back on home studies for half of my eighth grade year because I also had tweaked my back.
The end of my eighth grade year my mom, aunt Della, godmother, and my aunt Felicia put their money together buying me my first ever handicap van! Come outside my mom tells me. I saw the van and started balling my eyes out, being overwhelmed with happiness feeling thankful to see what I was seeing. WOOHOO!... more freedom! They knew how much I loved my LED lights and found a van that had all the bells and whistles. It was a high top, silver, chrome rims, LED lights that changed colors having different light modes, flat screen TV, a nice stereo system, an outlet to plug in my game system for when we travel, and back seats that laid down incase I had to use the restroom whenever we were on the road! This van was a regular van and they converted it into a handicap van installing a wheelchair lift in it taking out the middle seats. This van was beautiful! I call it “my pimpmobile.” I never was able to go out anywhere. The only place I would go out to was the doctors and occasionally to the movies using the Fax bus because riding in the truck was hard to get me in and out. The first place we drove to was my aunt Della’s house showing her and my cousin Tya. We then went out to eat afterwards. This van meant a lot to me because it gave me a more meaningful life. For the longest I never had been inside of a store, gone grocery shopping, been to the mall, or traveled out of town since I had my back surgeries. “I’ve been very lucky in my life, but also very challenged.” This van gave me life!
To be continued..
(I’ll write my first book talking about everything from what I go through, what I went through, how I overcame it, how I feel and felt growing up. Most likely will write my first book in 2021 or 2022).