Help Shelby Gain Her Independence

Let me take you back to October 21, 2004. The night before I had my first ever MRI because I kept getting these headaches and then I would throw up. But that morning was just like every other morning. I was dropped off at my babysitter’s house with my brother and sister. My brother, his friend, the babysitter’s kids and I all walked to school. It was a regular school day. In fact it was picture day. My class went to the cafeteria to get our pictures taken after morning recess. Coming out of the cafeteria, my parents were outside the office waiting for me. They told me we needed to go to the hospital. I remember we went home and packed enough clothes and toys for 3 days. 

We got to the hospital at lunch time. I remember being very hungry but they wouldn’t let me eat. I didn’t know it at the time, but I was being admitted directly into the ICU at Loma Linda University Children’s Hospital. I remember skipping down the hallway to the elevator holding my uncle’s hand. I had no idea what was going on but they still wouldn’t let me eat. They made me change my clothes and get in the bed. They gave me my first of many IVs and then all the doctors, nurses, and social workers started coming in. At 6:00 they gave me something to make me sleepy and that’s the last thing I remember until Christmas time.

My surgery lasted 7 hours. The 

 

surgeon removed a tumor growing on my cerebellum (the part of the brain that controls physical movements) that was about the size of a golf ball. To get the whole thing out he had to cut out about 25% of my cerebellum. I now know that the tumor was blocking the fluid in my brain and I was at risk of having a stroke at any minute. The surgery was finished and they were getting ready to bring me back to ICU when the doctor noticed that the hallo holding my head during the surgery had crushed my skull on both sides. They had to immediately do another surgery to pull bone fragments from the sides of my brain. 
Right after surgery at about 1:00am I was groggy but able to say a few words. By 6:00am everything had faded. I was no longer able to speak, sit up, swallow, or even blink on command. Besides life functions like breathing, the only movement I had was reflexive blinking. It’s called cerebellar mutism and I had the 2nd worst case the hospital had ever seen.

I was in the intensive care unit for 5 days and then they moved me to the rehab unit where I stayed for another 72 days. My days consisted of 2 hours physical therapy, 2 hours occupational therapy, 2 hours speech therapy, CT scans, MRIs and vitals.

The next 77 days are blurry. I really don’t remember anything until about Christmas time but I had to stay at the hospital until I could communicate and sit by myself. Around the middle of December the headaches and vomiting started coming back. They did another MRI and found that the fluid was building up on my brain. I had to have another surgery to place a shunt to move the water off of my brain. Because of the tumor and the scar tissue from the crushed skull, I now rely on the shunt to remove the fluid.

When I finally came home from the hospital I was still not able to walk or crawl, I moved around by scooting on my bottom. Sitting up was a challenge. I had to use a special chair in the bathtub and at the table. I had my wheelchair but I wasn’t strong enough to push it. My parents had to still feed me and do everything for me but I was going to therapy 6 hours a day, 5 days a week. That, of course, meant I still couldn’t go back to school.

I remember a day when we went to a party. My friends from school were there. They were playing outside on the trampoline so I stayed inside with my mom. They ran inside and upstairs to play in my friend Hannah’s bedroom. I climbed off my mom’s lap and onto the floor. I scooted on my bottom across the living room and up the stairs to join them. But, by the time I got to the top of the stairs, they were done playing in her room. They ran back outside to play on the trampoline so I scooted back down the stairs and back to my mom. It wasn’t their fault but kids my age didn’t know how to play with someone like me.

In 2006, my family made the decision to get me the best medical care around for my kind of cancer and we all moved to Texas. This meant leaving my home, my grandparents, and all my cousins behind. We had to sell our boat and the house with the pool. By this time, I was able to sit up and feed myself. But I was still in my wheelchair. I was starting 3rd grade in a new school and I still had to go to physical, occupational, and speech therapy as well as my MRIs and CT scans. I spent a lot of time at the hospital and driving back and forth to the hospital. There was no time for friends or play.

About a year into my recovery the doctor warned my parents that most kids would only tolerate intensive physical therapy for a few months and that they should be prepared for me to be in a wheelchair. The doctors also said that I would most likely only have a 25 year life expectancy. It was very probable that my tumor would keep growing back and each time would be more aggressive. That’s where the fun part of this story begins. 

I kept going to all my treatments and slowly I started making progress. I started using a walker at home and then at school. I still needed my wheelchair when I got tired but I used it less and less. Sure, I still had to go to the hospital a lot, but I started making new friends at school and my parents signed me up for a dance class. I had to hold on to the barre and I was really shaky and awkward but I was doing it anyways. Not everything improved. Because the muscles elevate one of my eyes, my brain has shut down that eye. So besides having very compromised balance, my depth perception is limited but something I have adapted to.

7 years after my surgery, I was still going to physical and occupational therapy 6 to 8 hours a week and I still needed my wheelchair but I mostly used my walker and I was excelling in school. I was inducted into the Junior National Honor Society despite having special education support. I was in honors classes. I also wrote and published my first book: America the Funny, a joke book about the 50 United States. My book was featured in the Houston Museum of Natural Science in their Art and Healing display and received an award of excellence. I was 11 years old.

After 5 years in Houston, Texas, we decided to return home to California. I was entering 8th grade and my parents wanted to move before I hit high school. When I started school back in California, many of the kids remembered me from when we were in 1st grade and I was diagnosed. This time, however, I refused to take my wheelchair with me to school. I didn’t want their pity. I wanted to be like everyone else. 

I still had special education support and I was still in honors classes but there was one thing I wanted but didn’t have. I wanted to be a cheerleader again. All these years, I had told myself that when I got better I would be a cheerleader again. I still couldn’t walk without my walker. I couldn’t jump or run or even pick up a fork without a lot of concentration and effort but I really, really wanted to be a cheerleader. That’s the only thing I wanted.
When I started high school, the cheer coach took pity on me and let me be the cheer manager. I would show up to practices and games and competitions and sit watching the cheerleaders. I appreciated what she was doing but it wasn’t enough for me. So I did what I needed to do - I got rid of my walker and started teaching myself how to jump. There were a ton of bruises on my legs and arms from falling. But, behind my closed bedroom door, I was trying and trying and trying. 

At the end of my 9th grade year, I tried out for the cheer team and made JV. I know I wasn’t able to do the jumps like everyone else but I was able to get both feet off the ground and land without falling. Even better, I knew all the routines so well I was teaching the other girls. I earned my spot on that team the hardest way possible - hours and hours of work, alone in my bedroom.
So much for the doctors’ prognosis that I was never going to walk. Not only was I walking without my walker, I was a cheerleader on a championship  high school team. Yes, we went to Nationals. And, yes, I competed with the rest of my team. And, yes, we placed.

There were so many things I was told I would never be able to do. My response to everything I was told I couldn’t do was to do it. I was told I wouldn’t be able to walk. I don’t own a wheelchair or a walker anymore. I was told I would never be a real Cheerleader. I made the varsity team my senior year of high school. I was told Advanced Placement courses and a 4 year university would be too hard. I graduated from San Diego State University Cum Laude with a degree in Speech Language and Hearing Sciences.


I was told driving was impossible. A month before my 18th birthday I got my driver’s license. I was told I would never be able to live away from home. My 4 years at SDSU were living in dorms or apartments. I’ve been told having a career would be difficult because who would want someone with significant physical and cognitive disabilities. Well, I just finished my internship and will soon be working as a Speech Language Pathologist.




Nothing has been easy. I have a lot of things I continue to deal with. The emotional and physical trauma from my cancer left me with anxiety. I’ve struggled with an eating disorder and snow skiing scares me. COVID upended my goals and plans for independence but I am pushing on one goal at a time.

So what’s next for me? I want a life where I am fully independent. I don’t want to depend on my parents for the rest of my life. I will get an apartment and have a job that will pay my bills. And,  I want to be able to get myself to the grocery store, gym, bank and even the mall. I don’t want to rely on asking for rides. Public transportation isn’t the safest or most convenient in my area. Ordering Lyfts or Ubers gets very expensive. I can walk to the store but carrying things when I walk throws my balance off and I fall easily.