Hello from the land of the healed!  Ava is doing really well.  She has been doing physical therapy 3 times a week and next week we are headed back to New Jersey for the 3 month check up.  Ava recently performed a solo along with her guitar at the Westlake High School Choir Spring Review and did amazing.  We were very proud of her hard work.  Ava's final for pre-AP English was to write a memoir about something in her life that had a large impact on her.  She wrote a paper on her Scoliosis journey.  I have attached it here below.  It's called Vav Curvy .   I was very touched to read about the journey from her side.  I just want to thank all of you who called and wrote emails and prayed for her.  She recovered exceptionally quicker than most kids.  I do believe that all your prayers and kind thoughts had something to do with it. Thank you from the bottom of our hearts.

Vav Curvy 

“Ava, Ava wake up” the hot anesthesiologist looks at me from above in the bright lights with his mask on. I was happy. The first words out of my drugged up mouth were “I dreamt of my chemistry class”. A fun fact about me is I am obsessed with dreams and I remember almost every single one I have when I wake up. They wheeled me into a room with 15 people. Everyone who had operated on me and some other doctors I hadn’t met yet. Everyone thought it was funny how awake and extroverted I was, asking everyone their name and saying hello. As my days in the pediatric ICU went by, things were alright sometimes and other times the pain was unimaginable. 4 of my ribs had been cut apart and an inch taken out of each of them. 15 screws had gone through my spine, 4 discs cut to de-rotate 4 vertebrae, my muscles and tissue moved and 2 tethers screwed to my spine. My right lung had been deflated and it was difficult to breathe. I wasn’t able to laugh or cough without immense pain.

10 months earlier.

Every year since age 12 I would visit a spine doctor to get an X-ray of my back. At 12 I was diagnosed with mild scoliosis. My mom and I didn’t think much of it as she had it and so did my sister and neither of them progressed. Later one day after my check up when we were in the car listening to John Mayer without a care in the world, we got a phone call. It was from the doctors office. They explained that my disease had gotten much worse in a concerned tone. Even though the conversation seemed serious and I could read the worried looks on my moms face, to me it was nothing.

My Fun Fact

I have a disease called scoliosis. This is when there is abnormal curvature of the spine and sometimes a rotation of the spine as well. My left ribcage sticks out more than the other and my right side of my back is an inch and a half taller than than the left side. I look a little extra “curvy” if you look closely in a bathing suit but from not saying anything you wouldn’t notice. In an X-ray my back looks like an S shape. Plenty of kids have bad backs and it's just something they live with right? I guess not as bad as mine though. I have a unique X-ray to show friends, and if I bent down a certain way you could see a difference from someone with a normal back.The next thing I knew my mom was sobbing when she hung up the phone. “Mom it’s alright! Don’t cry! Why are you sad?” I asked my mom in a completely confused tone. I had no idea why this was such bad news. Heck! I had a fun fact to say now at “Get to know each other circles”. “Yes I’m Ava and this is what my back looks like. Sure I'll be taking autographs later on my X-ray pictures. It’s a two dollars feel to feel my spine”

My mom looked away from the road and wiped a tear. “I just feel like I could have done more. It’s my fault.” She really thought that. That it was her fault that my spine didn’t grow straight. My mom is someone who works really hard to take care of her family, everything she does is for us. She’s the type of mom who spent 7 years working at a job she absolutely hated, but did it for our family because we needed the money. Sometimes my mom cares to the point that it makes her a helicopter parent and I wish maybe she didn’t care, but then again I would take that anyday over a mom who doesn’t care at all. Hearing that my scoliosis had gotten much worse crushed her because for all she knew she could have done something as my mom to prevent that.

Problem and Solution

After that my mom was taking me everywhere to see the options for my back. We went to many different doctors, chiropractors and even masseuses. People who worked with strange machines that pulled your spine apart and shook you. Fiberglass braces that squeezed you from your thigh to your shoulder that allowed no movement. At night I would worry that these things would become my future. My parents didn’t want to do spinal fusion because of the lack of flexibility it creates.

Instead, my mom found this place in Wisconsin that was started by a chiropractor. The place was a boot camp for 2 weeks to make my back almost normal with routine exercises, velcro braces, machines, exercises, balancing, and chiropractic care. Not an easy time. Again, it's called Boot Camp.

The Cheese State Sucks

For two weeks I worked hard at this boot camp being exhausted every day. Green Bay, Wisconsin was awful. Nothing to see in that small town and I rated every restaurant 2 stars besides Chipotle. I made a friend there, her name was Miya. Her back wasn’t as bad as mine but it was nice to bond with someone over how much we hated what we had to do for our health. The exercises I continued at home consisted of 2 hours total a day on the treadmill or going outside wearing a black Velcro brace that was hot and pulled my body in unnatural ways. The second exercise was a balance exercise. I had to stand on a bosu ball and put my hands in the air leaning to my right side while a contraption held a 15 pound weight two feet to the left of my torso for 20 minutes, 3 times a day. It was exhausting and painful. The longest 20 minutes everyday. If didn’t do the exercises, I wasn’t allowed to go out. I only ever did them in front of my three best friends. Most of my friends didn’t know about it. I was embarrassed by my condition. Scoliosis just always sounded like a nerdy disease. When people hear it they think of braces and awkward kids with hunchbacks. Even to this day people still get a kick out of hearing I have scoliosis. A nice chuckle after the mention of it.

One Thing: Surgery

After doing this for 6 months I got another X-ray and compared it to how my back was before I started doing the torture exercises. Nothing had changed. The doctor said it might have stopped it from progressing but the promise wasn’t met. My back was just as bad as before and since we said we would try that before ever getting surgery, this only meant one thing. I had to get surgery. Mom and dad asked me how I felt about it and frankly my options were simple. Get it, or don’t do anything and watch my back continue to get worse. I didn’t want to look funny in swimsuits anymore or have back pain and even worse pain in the future. In three months my back had progressed to 67 degrees in my upper curve and 40 degrees in my lower. The only place that didn’t do spine fusion for my age was in New Jersey. The surgery was called anterior scoliosis correction. It’s a much safer surgery and offers more flexibility and quicker recovery time and I was headed there 2 days after my 16th birthday.

Fireworks Inside Me

Two days after surgery, while I was in the hospital my mom made a joke or an impression of some sort. One thing led to another and my mom continued to make me laugh. “Lynn get out now!” Dad shouts at the top of his lungs. My mom looking concerned and confused to see her baby screaming in such pain. “What’s wrong? What’s wrong?!” She was so disturbed and the look on her face was the most worried I have even seen her. I bursted into louder screams in agony because her face was hilarious to me. She had no idea that she was the cause of my pain. My parents shouted back and forth over my cries. “Lynn get the f*ck out!” My dad begged for my mom to leave the room. The constant flexing of the stomach and the rise and fall of my chest burned. Where my chest tube went through my flesh felt like someone had put a firework inside me. I held onto the stuffed animals that surrounded me in my bed. My stuffed animal, Stitch, from my favorite Disney movie Lilo and Stitch supported me as I shoved it into my side trying everything I could to manage the muscle spasm. My mom said “No! Not until you say it nicely!” as she stared at him with her sassy attitude. Now was not the time to prove any point that being nice gets people to listen. I screamed and wailed until she finally left. I saw their two silhouettes outside the room argue as he explained to her what happened. My mom left and my dad stayed the night. I might never experience more pain in my life. I’ll let you know after childbirth how it compares.

The Nights

Once I got out of the hospital I stayed in New Jersey in a hotel with my parents, grandma and sister for two weeks. The nights were brutal and it was almost impossible to sleep. The simplest things were the hardest. I would pick up a water to drink and drop it immediately. My balance was off and everything felt like it was moved in my body and shifted to my left and that’s just what happened. My new normal was strange. I didn’t feel like eating and my medicines made me nauseous all the time. My mom had to give me pills 17 times a day. My favorite part of the day was when I would sit in the hotel room handicap bathroom and my mom would wash me as the warm water flowed over my swollen torso. After I was clean she would let me sit in there for another 20 min. Everything I did was painful. The best thing for me to do was walk as much as I could because it stretched the muscles and helped them not be so tense, it also helped me heal faster. As the doctor would say “motion is lotion”. Most kids wait till day 4 or 5 to start to walk after the surgery, I walked first thing the next morning. I was determined to heal as fast as possible no matter how scary or painful it was even when every cell in my body screamed don’t walk. The nurses admired my strength. The radiologist told me I seemed like I had been out of surgery for a week and a half. Not 3 days. I think the pain medicines and I were quite the magic duo. The recovery was long but not as long as expected. My family has a trend of healing fast. Don’t be mistaken though, it was a nightmare. On average I would fall asleep at 4:30 every night. My body physically wouldn’t go to bed. I always had this feeling of wanting to shake myself and run. Too much energy built up. Every week I got a little better, till one day I forgot to take my pain medicine because I didn’t need it.

Hindsight

Not a day has gone by without something relating to the surgery or my back coming up and affecting my daily life. March and April of 2019 were the worst months I’ve ever experienced. I was afraid to have my surgery. I knew it would be a hard time. I missed a lot of school and I didn’t always see my friends. I felt alone and hopeless most of the time. This was an odd experience and not everyone’s story to share but it’s who I am. A part I never knew would be a part of me until a year ago. Never underestimate the power of one year. I learned that hard things happen to us and they make us different and stronger then we were before. I have a new understanding for why bad things happen to people. Besides just my body being rearranged, I have grown as a person as well. I am not afraid of change anymore because I know it can be good and in hindsight be for the best.