Moving Forward

This is Dr. Michael Lloyd- out neurologist from primary children's hospital. My heart has a very soft place for this dr and the love and compassion he showed for us in  our darkest hours. On Thursday, May 8, dr. Lloyd told us it was time to wean Quin off his seizure medications. He explained to us that if Quin can go 2 years with out seizures (which he has) the chances of him having any more drops down to less than 5%. About a year ago we had an intense 24hr EEG done to see if his brain was "seizure free". It wasn't. Although he wasn't having real seizures his brain was firing little outbursts that could potentially be seizures if not managed by meds. Discouraged by this news I agreed to another year and possibly longer of medications and all the side effects that come along with it. The hardest part was telling Quin he still needed to take his medicine- explaining to him that his brain wasn't all better yet. But resilient as kids are- we forged forward and didn't look back. In march of this year I got a call from dr Lloyd asking if we would come in for a follow up visit.   Quin is now 3years and 3 months seizure free. I told him how much I wanted to go off meds and I felt confident that Quin would be okay. Dr Lloyd agreed that statistically all signs gave us the green light. When he actually said to me, "I think we should go ahead and take him off his medications," I couldn't believe my ears. It was the best news I had heard in a long long time. I knelt down to Quin and held his hands and said,"Did you hear what the doctor said?" "No-what?" "Quin- you are all done. No more!" The joy in his eyes was awesome. The smile on his face didn't leave for hours. 

As the day went on we shared our good news with family. Later that evening we went to Quin's kindergarten play where he stared as "farmer brown"! It was such a good night. While we were getting the kids ready for bed I pulled Quin aside for his "medicine time". I asked him how he felt and I could sense a little bit of uneasiness about him. When I asked him how he felt he expressed his fears. "I don't want to stop taking my medicine mom. I don't want my seizures to come back. I'm scared mom." My heart broke. And for the first time that day- I too didn't want to stop what we found to be a very comfortable and comforting routine. While obnoxious, "medicine time" gave us and him a peace of mind. A subtle reminder of how far behind us those awful days were. For the first time in our 3 year journey I listened to Quin- and how he really felt about everything. He knows no different. His epilepsy startred long before his first memory did and because of his age I always just stepped up to make all of the decisions. Never really stopping to think about his voice because my heart always tried to protect his best interest but for the first time he is old enough to have a voice. He is old enough to understand and unfortunately he is old enough to feel the anxiety and fear that his dad and I have carried for so long. Only now the burden carries a different weight. He realizes it is his - and I do too. In the deepest part of my heart I have a very peaceful calm assurance that epilepsy is behind us. The Dr fuels that prompting I have with statistics and evidence to prove it is true. But the mortal part of me- the part that was left very scarred by the careless acts of epilepsy is still tender and may always be. Trials change us. They are supposed to. Today I am a better person. Today my son is a better person but today we walk forward we put our trust and faith in The Lord and with Him as our guide, I know we will all be okay.