For the past several weeks I’ve been watching an 11-year-old boy courageously battle Stevens-Johnson syndrome.
Stevens–Johnson syndrome is a rare, serious disorder of your skin and mucous membranes. It’s usually a reaction to a medication or an infection. Often, it begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters.
I see machines assisting his body while I see him fighting to regain control of his body. His strength is undeniable and his courage is like a lion. As I watch this young boy make the long journey back to being the “A” student who loves school, the gamer who enjoys playing with his younger brother and friends, and the polite young man with a warm smile, I can’t help but notice his mother’s strength. I watch as she prayed for him, gently speaking words of encouragement and life into his ear. I watch as she touches his exposed finger and toe, causing his racing heart rate to slow down. As she listens to the doctor’s updates, realizing that his ICU residence and breathing tubes will last much longer then she had hoped, her strength and calm tone doesn’t waver in the presence of her son, but she is only human.
During the evening, away from her son, she texted, “I’m having a hard time coping with my fears”. Her seven friends texted back with words of encouragement and love. My text to her said:
(Name omitted) you know what fear is (false evidence appearing real). Release those thoughts and hold on to what God has placed in your heart and the heart of your son. Grace is all around you – your family, your friends and God! Hold on to that. Hold tight! The ride is filled with bumps and turns. It’s filled with highs and lows, but eventually it will stop and you will be able to get off and resume your life. Stay resolute while Grace covers you.
I understand that this life journey will sometimes bring you to your knees, but it’s how we get up and keep moving forward that defines us. I am humbled and grateful to be a witness and friend as both mother and son make this journey together.
Check out this book – Personal SJS Journey:
Who Could Have Imagined!: My Stevens-Johnson Syndrome Experience
