Believe in Miracles
Rainbows have become an important symbol for my family. Michelle Zimmerman, Christopher's first speech teacher, had been working with him for a few years so she had seen the progress he made when he had seizure control, and she had seen the regression when the seizures came back. She watched me fall into a dark fragile desperate state of hopelessness when Christopher began to lose his skills, personality, and essence. She gave me a book called the "Rainbow Goblins", which is a story about unhappy forest goblins that set out to steal all the colors of the rainbow by drinking the color from beautiful flowers. The goblins failed and the rainbow prevailed. Michelle told me that she felt moved to give me this book because she believed that it was our story - that although our "colors were being drained", that we needed to hold on to the hope that there would be a rainbow in our future. (See www.RainbowStarBooks.com/Inspiration for past journal entries and for Christopher’s Rainbow Story from Michelle’s perspective.)
The symbol of the rainbow began to appear in the oddest of places - as a mural on the wall at the pediatric epilepsy unit, on the video cover of the movie, "First Do No Harm" (story of the success of the ketogenoic diet for Charlie Abrams by the Founder of the Charlie Foundation), etc. We believe that God used this symbol to lead us to the doctor and medicine that would finally help Christopher get seizure control. I contacted the Charlie Foundation to find out about the Ketogenic Diet. They directed me to Children's Hospital of Wisconsin because of an experienced Keto Dietician that worked there. Although Christopher continued to seize while on the diet, it was an opportunity to wean him off the three debilitating drugs he was on at that time. Three months later, he was still seizing, so the neuro recommended Felbamate. She told us it was dangerous drug that was associated with fatality. My husband and I didn't take long to give our written consent. We had watched him slip away from us as the seizures progressed. We knew seizure control was critical. We decided that it was better to take a chance than to watch our son die slowly every day. Christopher was seizure free within days. I believe the ketogenic diet altered Christopher's brain chemistry so that when Felbamate was initiated, he responded immediately.
Everyone's rainbow will be different. Christopher is not totally free from the damage that his seizures caused. He still has attention issues and fine motor challenges. His seizures could return at any time, but we don’t think that they will. His recovery is nothing short of a miracle. I believe this happened so that I am free to "pay it forward" by offering you the hope that there is a rainbow in your future.
Current Status
Christopher is ten years old and in the fifth grade. He is in the highest grade of his elementary school and he has the saunter that boys acquire when they have become "man on campus" (He used to be painfully shy.). Due to his medical diagnosis, he shares a teacher's assistant with another boy in his class. Technically, it is to protect him in the event he has a seizure, but in reality, she helps him stay on task and keep focused. Christopher's teacher tells us he is doing great and is a joy to have in the class. He does receive extra help with reading and speech as well as occupational therapy once a week. He has received A's and B's so far, but he does have to work hard for them. (When Christopher gained seizure control and began making developmental progress, we began to pull back and encouraged him to be more independent. This was an adjustment for us, and it took a great deal of patience, but by pushing him to move forward, he surpassed everyone's expectations and gained confidence that he never had.)
He has, by the grace of God and all who have prayed for him, been seizure free for over five years. Recently, we returned home from a three day stay in a NYC hospital for his annual neurological checkup, which included an MRI and being hooked up to an EEG for three days. Muscle memory kicks in for us when we walk into the pediatric epilepsy unit - the fear and dread was overwhelming. It is as if we were back in that horrific period of active seizures. Gratefully for us, his MRI was normal and his EEG showed "no electrical seizures". His night EEG, however, does still show rare atypical spikes/blips which indicate a propensity to seize. The doctors recommend that we continue him on the Felbamate three times a day. They did say that weaning from the meds is a possibility as the atypical activity may or may not lead to a seizure if the medicine is removed. We aren't ready to take that chance yet. The neurologist also said that it is amazing that Christopher has been diagnosed with the two worst forms of epilepsy - the dreaded Infantile Spasms and Lennox Gastaut, as most all children with those dx are unable to walk, talk or function. He said that his recovery is "remarkable and uncommon". We told him that we know it is the result of a miracle.
When we got home from the hospital, Christopher immediately went outside to play catch with his dad. After being confined to a bed for three days, he was eager to get back to typical ten year old activities. He loves computers and electronic games and knows more about the Ipad than I do. He has a green belt in karate and even trophied several times in tournaments. He only recently became interested in baseball and has been taking lessons so that he can play on a Little League Team in the spring. The epilepsy kept him from sports when he was younger but now that his seizures are controlled, he is ready to catch up. He told us he wants to play right field for the Yankees...
Who knows, with God, all things are possible.
