The evil monster has invaded our home. Silly me, I thought he was gone for good. But isn't that how the monsters in scary movies always operate? They wait for their victim to relax and/or have their back turned, and then they strike. The monsters name? Seizures. Yes, he thought he would take us for another round in the ring but he is not going to win this battle, not on my watch.
We have been attempting to taper Angie down from her last seizure medication. On Sunday, she was 12 days from what would be the last dose (I hoped) she would ever take. She was doing well, with no noticeable changes. Until the monster struck on Sunday afternoon. And again on Monday. I mentally locked the door to keep him out, but he persevered. And everything changed.
Now, we will increase the dosage again and pray that we have seen the last of the monster. Our reality is that he could be lurking around any corner. Waiting for us to let our guard down again, or turn our backs. He has invaded our sense of security and has brought back old fears that we thought we put away for good. Now, I will be up at night checking on my girl to make sure she is sleeping peacefully. I will hesitate before I go into her room each morning, afraid to find that the worst has occurred overnight, as it has to many, many children with Sturge-Weber. I will leave the rescue medication within reach at all times, and I will evaluate Angie's movements like never before. I will play out the scenario in my head in which I need to call the ambulance and be ready to go to the hospital for an undetermined amount of time. This monster plays dirty and despite my vigilance, I am scared that he will win. Really, really scared. And I am mad. The seizure monster that haunts children with Sturge-Weber is like none other. He is ruthless and the havoc he brings is terribly unresponsive to medication.
On Sunday, the day the monster returned, I learned that he had taken the life of another precious child with Sturge-Weber Syndrome. Jacob was 6 years old and his parents and I belong to the same online support group for parents of children with Sturge-Weber. The news of his loss, understandably, causes near-panic in the hearts of the other parents as we imagine it happening to us. Please, evil monster, go away and leave my family alone. You are not wanted here.
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