It almost seems impossible for me to go back to that split second when Shelby had her first seizure. Although it is a pivotal moment in the life of our family, so much of it seems foggy and blurred in my memory. The whole night is shrouded in the fear I felt, details quite probably lost by my mind trying to protect my heart from pain. I don’t remember what we were doing or exactly when the convulsions started, but I will never forget the full body stiffening and jerking, the obvious distress my baby was experiencing. Chuck and I panicked as we tried to determine what was happening to Shelby. Our baby, who was not even 5 months old. The apple of her parents’ eyes looked like she was dying. We quickly gathered up what we needed, and for some reason, jumped in our car instead of calling 911. That became our protocol. Inexplicably, through the many seizures that would follow, we have still never put her in an ambulance. I held Shelby in my arms in the front seat of our car as my husband quickly drove to the hospital on the north side of Abilene.
I can’t recall how long she seized that night. The hundreds of episodes she has endured since then are blended and confused in my mind. Some seizures stopped before we ever reached the ER, and others would drag on to dangerous lengths – requiring medical intervention. I do know that I felt relief when it was all over. But that relief co-mingled with the anxiety of not knowing what was wrong with my daughter and when, or if, such a scary thing would happen again. The next couple of days were filled with tests upon tests upon tests with no real answers for a VERY long time. The years since have been filled with medications, doctors visits, therapies, sleepless nights and more challenges than we can count.
That first night, December 5th 2000, though somewhat hazy, started a very long journey. A journey that has changed us. It has taught us, and sharpened us, and deepened our faith. We have grieved and tossed and turned and cried out in frustration. We have found joy in the little things, and at other times tied the proverbial knot in the end of our rope to hang on. Dravet Syndrome has SHAPED much of what we are as a family, but thank God is doesn’t DEFINE us. We strive to live out the faith we have in Jesus Christ to sustain us. We hope that others see the love Chuck and I have for each other, our children, and those God has placed in our lives. We respect all others created in the image of God (that’s everyone) and pray our beliefs are evident.
Faith, love, and respect. Those are the things we are building our family on. It’s not perfect. There will be days when you see more frustration and pain in me than you do joy. That’s just a part of life. Dravet Syndrome is happening to us, but it’s not who we are.