During this busy holiday season, we often forget what is important in our lives. I feel extremely fortunate that this December marked 9 months of my daughter being seizure free. One year ago, she was recovering from having the VNS implanted, and getting used to the levels being turned up every two weeks, not to mention, getting to know a new neurologist.
This December is very different. We all still live with our purple elephant in our lives; that little nonstop thought in the back of our minds that knows how quickly our lives could be turned upside down; that extra nuisance of having to have the “Did you take your medicine?” conversation two times a day. We are busy buying gifts for one another, we have holiday decorations all around the house, and we try to find a balance between work and family fun.
As I sit, and look at my Christmas tree, I let my eyes gaze from one ornament to the next. The reflection from the white lights twinkle on each one, and each ornament seems to trigger a different memory. I have ornaments that were mine as a child. I have ornaments from when my children were young. I have some that came from my ornament exchange party I went to with my friends as we all started going through the phase of watching our children become young adults.
While stirring up all of these happy memories, I cannot help but to let some not-so-happy memories slip in. There is one Christmas, in particular, that I will never forget (although the exact year escapes me).
When Bella was around 7 or 8, she had gone for a while without any seizures. She was extremely excited for Santa to come this particular year. Christmas Eve, her eyes were so wide with anticipation. We didn’t realize at the time how much anxiety seems to play a role in breakthrough seizures for her. We still got her to bed on time, and she took her medication on time.
The next morning, as our family began to open Christmas presents, she had a seizure. Then she had another. I don’t recall every little detail, but I know that only some gifts had been opened. I know that at some point, we knew this was beyond just watching her at home. We made the decision that I would be the one to take her to the hospital, and the girls’ dad would stay home with the other three kids.
As I sat in the emergency room on Christmas Day with my sweet little girl, I wasn’t mad. An overwhelming feeling of sadness swept over my heart. My little girl was so excited for Christmas, and now she was sleeping on a hospital bed in an emergency room, while her mom prayed the drugs would once again take control over her seizures. I remembered my happy Christmases as a child, without a worry in the world, and I hated that she was missing that.
Before too long, my husband showed up with my other three daughters in tow. Their arms were filled with Tupperware containers. They had finished cooking our Christmas dinner, and boxed it up, so that we could eat together, even if we were inside the cold walls of a hospital emergency room. The nurses’ and doctors’ smiles and tears were too much for them to hide.
Bella woke up, and we all ate together. This small bout of seizures was over almost as quickly as it had begun. We spent the entire day in the ER, but were able to return home that evening, stomachs full of ham and mashed potatoes.
What amazed me most was that the gifts from Santa and everyone else remained under the tree, waiting to be unwrapped. My older daughters didn’t care about their presents, they just wanted their sister to be seizure free. Who could be excited about any gift, while she was not herself? If nothing else, epilepsy has taught my family how unimportant tangible gifts are, and how extremely important the people in our lives are. One cannot be taught compassion, but must learn it through life experiences.