By Julie Zarou
My son Taylor was diagnosed with Guillain-Barré Syndrome (GBS) in June of 2016. At the time he was 7 years old and school was about to end for the year. He was so excited for summer to begin. He was hospitalized for 3 weeks and misdiagnosed with acute lyme disease and post-strep symptoms. I still have nightmares about the pain he had to endure, the sleepless nights of screaming and wondering what was happening to his body. My active and athletic little boy was in chronic pain and had also developed bi-lateral Bell’s palsy so he couldn’t even speak correctly. Once he was correctly diagnosed he had to spend weeks in the hospital undergoing IVIG, blood tests, medications and experiencing even more pain. He was very lucky that he only lost movement in his legs and it didn’t affect his respiratory system. Once released from the hospital he had to spend the next month in an in-patient rehab facility where he had hours of PT to learn how to walk again, use a wheelchair, OT for basic needs, such as putting on shoes, and ST for his Bell’s palsy. He lost over 25 pounds. He was angry and mad at the world for what had happened to him. The poor soul had to spend his 8th birthday in a wheel chair and had to watch his twin sister run around with all her friends.
However given all that Taylor and our family had to endure, we are thankful for GBS. We never let Taylor feel sorry for himself and the entire ordeal taught him empath. He learned that you have to take what life throws at you and move on. Our motto became “You can’t fight the mountain”. The rehab facility was at a Catholic hospital with a church next door. Sometimes we went 3 times a day just to pray to God that Taylor would walk again as well as for all the other patients at the hospital who were suffering much more than he was. Two years later, Taylor has recovered from GBS and is back to his old self playing hockey, baseball, lacrosse, tennis, skiing and being a “regular” 9 year old boy. He still has some issues that he has to deal with but these are insignificant compared to what he had to endure. Our hearts go out to anyone that has suffered from this life changing experience and their families for the disruption from normal life. GBS has taught us to be grateful for every moment in life and that sometimes life is not fair but we have no control. When life gives you lemons, you make lemonade.