Anyone who reads my personal blog knows that I recently returned from a three week vacation that was -- to put it bluntly -- horrible. I won't go into any of the details, here, but the main reason why it went so badly is that I shouldn't have gone at all.
My oldest child, Sophie, has a severe seizure disorder of unknown origin that is medically refractory. She is fifteen years old but has had seizures, almost daily, since she was three months old. Quite recently she also developed a rare seizure disorder called ESES (electrical status epilepticus in slow wave sleep) which is wreaking havoc with just about everything. Because her deep sleep is literally consumed (90%) by sub-clinical seizure activity, during the day she is not only exhausted but a terrible wasting occurs. Despite eating normally, she has lost weight -- almost ten pounds. She has many large, tonic-clonic episodes nearly every day and on the "good" days sleeps most of the time. Walking, something that she generally adores, is difficult and more than half the day is spent either sitting in her stroller/wheelchair or sleeping. She is being treated with infusions of immunoglobulin, but the efficacy is uncertain. The ESES is something that has reoccurred. She had it over five years ago and was treated, successfully, with IVIG (intravenous immunoglobulin) and her brain wave activity returned to her normal (highly dysfunctional, but not ESES). We are hoping that the same thing will happen, and our beautiful girl will feel better, be better.
I agonized over whether or not to bring her on our annual summer vacation, when we travel from Los Angeles to the east coast to spend time with my extended family. I agonized because while we've done it many times before, it's always hard on us and harder on Sophie. The attempt is well-intentioned -- I want her life to be as "normal" as possible. I want her brothers to know that she is a part of our family in every way, that her disability does not define her, or us. I want, dare I say it, to cling to the hope that maybe this time, things will be different and she will be good on the trip. Many of you know this "drill." I've played it out many, many times over the last fifteen years, walking the tightrope of hope, acceptance and reality with the balancing stick of common sense.
I fell off the tightrope this summer, took her on the trip and we all suffered the consequences. I won't go into those consequences here, but what I realized is that right now, Sophie is ill. She is sick. She needs to rest, at home, and hopefully get better. I don't need to feel guilty about "including" her. It might sound dramatic to call this a revelation, but to me, it was. I have felt extraordinary pressure, self-induced, over the last year or so, watching her decline. It is the sort of pressure that makes me feel breathless, that gives me a sense of urgency that I need to do something, do something else, do more. It's a bit of what I experienced when Sophie was a baby and newly diagnosed, when I saw her development plateauing, the drugs not working, the windows slamming.
There is a difference between being disabled and being ill. For the past six months, I have been in a bit of a denial stage, dreading the diagnosis of ESES and knowing instinctively that Sophie was having a recurrence. Outside of her initial diagnosis of infantile spasms at three months of age and the subsequent fruitless (and brutal) treatments we subjected her to, the time she had ESES five years ago was the most hideous experience of my life.
It's no easier this time, but I can stop struggling against negative possibility and ease into accepting where she is right now. I am mindful that she is ill. She needs to rest, and so do I in order to take proper care of her. She will get better, just as she did before. I hope that.
Elizabeth appreciates all your good wishes that Sophie will respond to the IVIG and get better. She can be found blogging over at a moon, worn as if it had been a shell.