Friday, June 13, 2014


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


  1. I'm so sorry you have been having such a rubbish time- some of your photos look depressingly familiar. I had been wondering how you were, and how Caroline was doing. Thinking of you..... much love xxxx

  2. Can we have an update on Caroline? Would love to know how she is doing. Xoxo

  3. Hello Marta,
    I hope your family is doing okay, I always check the blog to see if you post any new updates. I would love to how Caroline is doing, I have a daughter with the same condition ..

    1. Hi D Marie! I wish I could post more, but I rarely have the time lately :-( . Thank you so much for following our story. how old is your daughter?

  4. I ran across your page because I have been working with a man with a granddaughter with Rett. Her life has improved dramatically with seizures.  I would like to pass his blog on to you in hopes of blessing your family.

    It is about how epigenetics might improve your family’s life. If you google epigenetics and rett you will see the rett scientific community is doing research. However what they do not know is that lunasin works on epigenetic level already and is on market!  I believe that the information will benefit you.

    God Bless

    Have a beautiful weekend.