Saturday, August 21, 2010

An ease into revelation

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.

18 comments:

  1. I am now sending a million well wishes Sophie's way, twinkling like stars and fairy dust..... My heart goes out to you and your family in this perilous time. With my son Jacob and autism, it is a different journey than yours, but I too know all too well the consequences of doing "normal" things because you think you should, even when your heart tells you "not this one, not this time." I hope Sophie pulls through this soon. And know that there are many of us here who are following you and your family's story and sending you our love and hopeful thoughts.

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  2. She will get better--it is my deepest wish for both of you. Strength and hugs.

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  3. I am holding hope for Sophie and for you in my heart. Sending strength and peace.

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  4. I think there comes a time when we need to accept "what is" rather than "what if". This allows us to think clearly about a situation and make the right choices.
    But we are humans and as such, it's so hard to do that, especially when the "what is" is about someone we love so much that we would gladly give our lives for them. Isn't that love enough to make everything okay?
    No. Not always.
    I constantly stand in awe of you, Elizabeth.

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  5. Oh Elizabeth, how my heart hurts for you and yearns for you to find some elusive peace. When you say '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', I feel your dread and denial for I too am experiencing a recurrence of something dreaded in my son's life. I, however, have not yet arrived at the state of grace that you have tread. You are an inspiration and try to find it.

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  6. This beautifully-written, heartfelt posting brings tears to my eyes. You and your gorgeous girl deserve so much better than what she/you are enduring. I deeply empathize with your state of denial. It seems normal to recoil from such bad "news." Sophie's seizures sound like torture for her - and for you to watch, without being able to "do something." That helpless feeling is SO painful.
    I wish I lived nearby and could come and just sit with you both, just BE together in solidarity, and perhaps give you some kind of rest. As it is, please know that my heart is with you.

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  7. Oh Elizabeth, you and Sophie will stay in my heart and thoughts.

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  8. how beautifullly you write
    its a great epiphany
    I always try to use the filter of what is best for the child but even that is a matter of judgmnet sometimes

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  9. Hoping you are both resting and strengthening your souls and bodies as you read this. Get well soon, Sophie!

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  10. I admire you so much Elizabeth. As Varda says, I think many of us have had times when we "push" ourselves and our child to participate in something for the sake of inclusion, when our intuition tells us, based on past experience, it would have been wiser to sit this one out. Often times it is others in the family or circle of friends who apply the pressure, assuring us that things will be fine when we know they won't.
    I am glad you are at home now and can focus on the moment by moment needs of caring for Sophie in her illness. And I pray for relief for Sophie from her illness and for the infusions to be effective. Thank you for your beautiful essay and your honesty. xo

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  11. Elizabeth, I think of you and Sophie so often --- and last week in Sea Isle I kept "seeing" Sophie. I'd catch a glimpse of her beautiful features or gorgeous curls on some other young teen. I'm hoping this is a sign that Sophie will recover from ESES soon and get back to walking on the beach herself. Sending lots of love to you both!

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  12. Thinking of you both and wishing you, Sophie and your family courage, strength and love.

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  13. Oh- wow.
    <<that I need to do something, do something else, do more>>
    Yes. Is it cultural, that it is so hard for us to stop that? I often wonder. I experience this too, every day.
    <<she needs to rest and so do I in order to take proper care of her>>
    That is the blend of knowledge and action (and restraint) that we so often can't rise to. Thank you for touching it out here where we can all see, so that we too can keep remembering and trying.
    Hoping for you and Sophie, that the rest is possible and fully supported from all directions.

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  14. I'm sorry you weren't able to take the quotes off your "vacation" this year. I'm sorry about the recurrence of the ESES, too. Thanks for sharing your perspective during this leg of your journey. I'm hopeful Sophie bounces back, and that her normal will let you try again next year...

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  15. Holding you both close and praying for better days.
    Love.

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  16. What an amazing revalation - that it's OK to continue seeing family with your other kids & it's OK for Sophie to be home where she can best rest & regain strength. Usually posts like this come across as a defense, but yours was quite more of an awakening; I hope you find time for yourself as you continue to realize that your needs & sophies needs converge but are also seperate. Best wishes for Sophie's health.

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  17. Thinking of you and Sophie daily, hoping you are both getting the rest you need. Sending love.

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  18. "It's no easier this time, but I can stop struggling against negative possibility and ease into accepting where she is right now." Mary's at work!

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