The following story is provided by our good friends at LegendBorne. It was written by Jarret Assael, and tells a story of perseverance in the OCR community.
Let’s start with the quick background story of Jarret and Devon, two people from different worlds, who both have a love affair with fitness and bettering themselves. We met through an online dating service – she wanted tall, bald, buff and tatted – but, well she got me instead. Maybe it was the picture of me flying through the air at a homegrown OCR called the Gaylord Gauntlet, a Charity 5K benefiting adaptive athletes, put on by the rehab hospital where I work.
I mean, after seeing that picture, how could any girl resist talking to me? It was love at first sight (for me anyway). So, what do two fitness crazy people do on their 4th date? That’s right they run a 5k Santa race in the freezing cold!
It was our love for fitness and running races that really bonded us. After many races from 5Ks to 10 milers, Spartan Beasts, Supers, stadiums and sprints, as well as Bonefrogs, and Terrain races, and we decided to tie the knot on 6/4/16. Combined we must have run 300 races since we met, including way too many virtual ones! Since we have been running OCRs like Spartan, Bonefrog, Savage and others, it has been ingrained in our family that to overcome certain obstacles, you must step out of your comfort zone, and be comfortable being uncomfortable.
About a year after marriage, Devon found out she was pregnant, and due in December 2017. She took time off from running Spartan and other OCR Races, but still kept in great shape, running road 5Ks, 10-milers, lifting in the gym, and shoveling snow. December 30, 2017, 4 days overdue, our little Spartan baby was born, but this day, and the many days after would become our largest obstacle to overcome.
Devon’s pregnancy could not have been any better. She was healthy, exercising and running. What could possibly go wrong? But during the delivery there were some complications, and the baby, who we didn’t know if the baby was a boy or girl, had a lack of blood flow to her body and brain. An emergency C-Section was called, and our Spartan princess was without oxygen for an extended period of time, and she was born lifeless. The baby was quickly placed on a ventilator and successfully resuscitated, but the doctors were unsure of her outcome, or the long road that lay ahead. It wasn’t for a least a full 5 minutes after she was born that we actually found out that our little fighter was a girl! We didn’t have a girl name picked out yet, but before our Spartan baby was whisked to a specialty hospital NICU, 45 minutes away, we named her Charlotte Rose. AKA: Charlee or the Bug!
The physical, mental and emotional rollercoaster of the next 48-hours was almost unbearable. Devon refused to take pain meds after her C-Section because she wanted to be mentally aware and tough (after all she did conquer VT Beast with no pain meds in 2016!). I had to be strong and tough for both my wife and my daughter, plus Charlee’s big sister Izzy (12 at the time, but unable to get into NICU to meet her little sister). This was indeed, the family’s greatest challenge, but we knew Charlotte was a fighter. She was tough, and she would persevere.
As Charlee remained in the NICU with tubes, wires, and lines everywhere, we were still very unsure of what her diagnosis would be or the extent of injury that had occurred. The doctors at one point were not even sure she would have any function of any kind. Days felt like years. We stayed in the hospital with her for the first 10 days, but were then moved to an off campus hotel, where we spent the rest of her time in NICU. Spending 12-14 hours a day sitting by her side, we slowly watched our little fighter make amazing daily strides. Day 5 she had an EEG, which showed more brain activity than day 1. Day 7 she was able to take milk from a Qtip on her lips. Day 9 she was off the ventilator. Day 10 she had more normal blood cell counts, and so on. Miraculously Charlee was discharged on day 16, which also happened to be Devon’s 40th birthday, a surprise to many.
Charlee was immediately provided access to the Birth-To-Three / Early Intervention program, where at 6 weeks old, we started her in occupational therapy. Shortly after she started physical therapy. Doctor visit after doctor Visit – Neurology, Neonatology, Pediatric – all ended with the same conclusion; we do not yet know the extent of Charlee’s injuries, and won’t for a while. It wasn’t until her 18-month Neonatology visit that Charlee was officially diagnosed with Cerebral Palsy (CP is the most common motor disability in childhood. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles.).
Charlee is affected primarily on her left side. She has hypertonia in her legs/ankles/feet, as well as her left hand. She is hypotonic in her core (weak muscles and little balance). We know that Charlee will always have challenges in front of her that she must overcome. And we know that with our fitness and strength oriented minds, as her parents we can help her through those tougher days. Her big sister Izzy, who is now 14, is a very important part of Charlee’s development; Izzy has the ability to motivate Charlee when mom and dad don’t cut it.
From the time Charlee was able to hold herself up in a standing position, she would use a pull behind walker to get around. Recently she was fitted for special ankle braces (AFOs) to help keep her steady. The second we got them on her it was like a switch was flipped, and she ditched the walker and took her first independent steps…and then fell down. She falls often, but never cries. She just looks at us, gets back up, and keeps on going with a smile on her face. At 3 years old, its like she has the ability to forget that she fell, and be proud of herself that she got to stand back up! She does not let any obstacle get in her way.
There are many everyday things that we as adults, or able bodied people, take for granted from a physical stand point. If we were to drop something, we can bend over to pick it up. Charlee most times needs to drop to the floor on her knees, pick up whatever it was she dropped, crawl and find her way to something, and pull herself up off the ground. And she always finds a way. There is definitely no quit or “I Can’t” in this kid; there is always “I’ll try”.
Her motivation to overcome her physical disabilities and to overcome any obstacle in her way drives us every day. She is a funny, sassy, loving, caring little girl who we believe will do great things. We all strive to be better and stronger because of her.
LegendBorne created a custom shirt design to help raise awareness for Cerebral Palsy. Those jerseys are available for purchase on the LegendBorne website.