“Life after stroke”, words that I never imagined I would ever speak, much less write about. Nevertheless, it has become my life as I am the parent of a pediatric stroke survivor. My son, Ryley, at the age of 15 suffered multiple strokes and it has changed the course of our lives.
July 8, 2013 started out as any other day that summer. Ryley had gotten himself up very early to get ready for football practice. I had just gotten out of bed to tell him goodbye as he walked out the door to catch a ride with a friend. A little over an hour later I received a frantic call from the mother of another player and friend. Her son called to tell her that Ryley had collapsed during warm ups and the ambulance had been called.
In a panic, I got dressed and rushed to the ER. I beat the ambulance to the hospital and was anxiously waiting as they arrived. As soon as he they wheeled him in it was clear that something was seriously wrong. He was not able to move or speak and had the worst look of fear in his eyes. He was immediately taken in for a CT scan. After what seemed like hours of waiting, the physician let me know that “his injury is too severe to treat here and the Arkansas Children’s Hospital air evac has been dispatched.” I had just enough time to run home and collect some clothes and essentials before they arrived so I could ride with him on the helicopter.
Ryley being taken to Arkansas Children's Hospital
Much of what came next was a blur. We arrived in Little Rock in what seemed like 20 minutes. At this point Ryley was in and out of consciousness. When he was awake during the ride tears streamed down his face, unable to tell me what was wrong. Immediately, after we landed he began experiencing seizures and was rushed to the Pediatric Intensive Care Unit where he was assessed quickly and was taken for an MRI. I waited in what would be his room for the next five days in PICU. In the meantime, his father and other friends and family began to show up in the waiting room.
A short time later, the attending Pediatric Neurologist came and took us into a consultation room. He quickly lit up a lighted wall with scans of Ryley’s brain. “This is what we are dealing with. He has had a stroke here, here, here, here and possibly a smaller one here.” I am so thankful there were chairs available close by because I remember falling into one. A stroke was never on my radar of possibilities. However, as the doctor explained, this was not our biggest concern at the moment - they needed to find the source of what caused the blood clots to travel to his brain and additionally, find out as quickly as possible to prevent any further clots. The strokes all occurred in the left hemisphere of his brain, so it was effecting the entire right side of his body with paralysis.
The next 48 hours were the hardest and most gut wrenching. None of us slept or left his bedside as they scanned, x-rayed, and examined him from head-to-toe, and discussed what could have possibly caused the strokes. Many different specialists were in and out of his room. Our break finally came when he was rushed into emergency surgery on day 3 to remove a portion of his skull. This was to relieve the pressure from the swelling caused by the strokes and would essentially save his life. During the procedure, they performed what is called a transesophageal echocardiogram, or TEE, allowing them to look at his heart from all angles. All the way around, on the backside, is where they found the source. Somehow, bacteria had entered his bloodstream and built up algae like strands that had broken loose during football warm ups and the clots had been pumped directly up to his brain. The official diagnosis was negative culture endocarditis. We learned that his case was rare because there was no way to pinpoint where he acquired the bacteria, what kind of bacteria it was, or how long it had been in his body. We also would not know the damage the bacteria might have caused to his heart.
Congressman Steve Womack and Ryley
The days and weeks that followed were fast-paced, exhausting, and full of challenges as well as many victories as Ryley fought hard to get back his post-stroke abilities. He moved from the PICU to the rehabilitation unit and immediately began physical, occupational, and speech therapies daily. He took his first steps with the help of a special walker and the physical therapist within 3 weeks of his strokes! It was an amazing thing to witness my son fight with all his power to talk, walk, and relearn the essential functions that we all take for granted. As a result of the strokes, he was diagnosed with Aphasia which is defined as the loss of ability to understand or express speech caused by brain damage. For Ryley, the aphasia directly effects his speech speed, and sometimes slows his ability to accept large amounts of information at once.
This is where the “life after stroke” really began to happen. After spending two weeks on the rehab floor at Arkansas Children’s Hospital, we were informed that he was stable enough to be sent to an inpatient rehabilitation center closer to home. He would go on to spend another three weeks here before finally coming home. Initially, our first six months at home were joyous and filled with many visitors, daily therapies, and even more progress. Then Ryley began to feel the emotional impact of the losses he had experienced.
We reached out for counseling and were blessed to find a caring local therapist that not only counseled Ryley, but also taught us how to listen and react with empathy and compassion. It was not as simple as saying “it will get better”, or telling him, “it’s going to be okay.” Life after stroke is hard; there are many facets of recovery and rehab that are not just physical. There is an ongoing amount of grief, loss, acceptance of the changes, and even anger. Ryley would go on to experience bouts of depression and loneliness. It was especially hard for him to see his friends and peers moving on with their lives. He eventually returned to high school, attended prom, enjoyed being involved with the football team, and graduated with his class. With each instance of a setback or onset of depression, Ryley would continue fighting to feel like the “old Ryley.” It was during this time that I began to research and reach out through social media for other pediatric stroke survivors. I just knew we could not be alone.
Ryley The Graduate!
One of the first organizations I connected with was our local American Heart Association/American Stroke Association. They were supportive and encouraging from the outset and invited Ryley to be part of a campaign for featuring survivors. This finally renewed his purpose - sharing his journey with others. They recognized his passion for sharing his story and invited us to attend a rally on Capitol Hill for medical research. It would be the first of three trips Ryley would make to Washington, D.C. on behalf of the AHA. The second trip he and I were able to tell our story in front of an appropriations committee for healthcare. It proved to be one of the most standout experiences we have had during this journey. On the third trip, we spoke at a panel discussion about health care for children with continuing medical needs. Additionally, he was invited to attend the annual AHA Heart Ball as a guest each year and was even a featured performer in a lip sync battle one year. These types of connections and support were immeasurable and pushed Ryley to keep moving forward, and telling his story.
Testifying on Capitol Hill
As I continued to reach out myself, again with the assistance of the AHA, I was able to connect with four very special young women that lived in the Kansas City area, all pediatric stroke survivors and close to Ryley’s age. After exchanging emails with the girls’ mothers, we quickly planned a get together along with a young man that had sustained a TBI (Traumatic Brain Injury), during a football game who was also in the Kansas City area. It was my first experience talking with other moms that actually understood my daily struggles, obstacles, and emotions. That friendship began a little over 3 years ago and we are still all close and keep in contact as we continue to reach goals, celebrate milestones, and hit walls with our survivors. I would strongly advise any parent that has a child that suffered from a stroke to reach out. There are many groups and organizations out there for support, connections, and education. Feeling that we were not alone was key to both of us moving forward. A few years ago, through social media, we connected with two other pediatric stroke survivors that had their strokes on the same day as Ryley, one year apart!
Our most recent update on Ryley’s journey is that he recently celebrated a 3-year anniversary at his job at a local neighborhood market. He also began attending driving school in the fall of 2017, and in February was able to FINALLY get his driver’s license, which, as you can imagine, is a giant milestone in any young person’s life, but for Ryley this was huge given all that he had overcome to achieve this. Unfortunately, this month he suffered a setback when he began having seizures again. The seizures are an unfortunate side effect caused by the strokes and he has been battling them for the last 4 years. Moreover, each seizure is a setback and incredible disappointment towards his goal to become independent and drive for himself.
Ryley still loves to tell his story and will tell anyone who gives him the opportunity. Our lives have settled into a routine and cadence of a “normal” life. Ryley has managed to find many ways to overcome his right hand that is no longer functioning. He has dreams and plans for his future, looks forward to driving someday, along with all of the freedom and independence that it will bring. He loves to be outdoors and is happy for warmer weather so he can hammock, hike, and enjoy the scenery. There are many things he does that still continue to impress me and make me proud, but I have the most pride in his fortitude to keep pushing forward. Through this journey he has acquired some awesome coping skills and he works hard to stay positive and content. He has a fantastic sense of humor plus an impressive outlook on life and people. He has accepted his body for what it is now and knows that his limits are not unbeatable. He no longer focuses on getting the “old Ryley” back but accepts who he is now, which is a much better, more improved Ryley. I was excited for the opportunity to share our journey once again and update those that have followed our story from the beginning. We have been so blessed, supported, and loved on by the AHA and our community. I will forever be grateful.
There is more we can do as parents, community members, and advocates to help END STROKE and raise awareness about the warning signs of stroke. I am so glad the American Heart Association/American Stroke Association is working towards this goal! Please take a moment today to join the movement and become an AHA Advocate so that we can fight together! Simply CLICK HERE.
Ryley's mom and AHA Advocate