Friday, June 13, 2014

Seizures

Life is unpredictable. That much I knew. I just never expected there would be these many sharp turns. Rett Syndrome is relentless, throwing one obstacle after another. And just as we start to catch our breath, a new challenge creeps up around the corner. I'm exhausted.

Caroline started having seizures last fall. We were desperately hoping she would never join that club. Sadly, an EEG test in December revealed that Caroline suffered from partial complex seizures several times a day. Of all the challenging symptoms associated with Rett Syndrome, seizures are among the worst. Seizures are dangerous and unpredictable. The International Rett Syndrome Foundation website reports that "factors most strongly associated with an increased risk of sudden unexplained death in RTT are uncontrolled seizures, swallowing difficulties and lack of mobility."  It destroys me that Caroline now suffers from all three complications.

Caroline's seizures were dangerously long and uncontrollable until about two months ago when, after trying a number of treatments, we found that a combination of two different medications diminished the frequency of her seizures. They are mostly under control at this point, but it's still hard for me to accept that seizures are part of our life now. These episodes are incredibly difficult to watch and I always feel the same: disbelief; fear; sorrow; and complete and utter helplessness. Crushing helplessness. There is nothing we can do but hold her unresponsive convulsing body while we wait for this scary thing to release its grip.

I feel as though something has been lost this past year. Caroline is not the same little girl she was last summer, before seizures began. Regression seems to have picked up its pace: her motor skills are steadily declining; she fatigues easily; her body is increasingly stiff; her ability to swallow is worsening so she chokes and vomits a lot; her appetite is low; and her tremors are more frequent and intense. I hate even writing this, but we also noticed that a little bit of her spark has dimmed. Something has also shifted in me that I can't quite articulate yet. I still smile and laugh and look forward to each day. I feel incredibly lucky for having support systems that give Caroline a healthy and happy life and also allow us to retain some normalcy despite living under chronic stress. Maybe what's changed is knowing for sure that my heart is irreparably broken.

This is not the life I thought we would have when we became parents, but Caroline is and will always be the best thing that has ever happened to me. She is my heart. She is my life.

Caroline getting hooked up to the EEG in December 

Her 24-hour video EEG was conducted at home