Friday, July 5, 2013

Living with Rett Syndrome

Abby lives with Rett syndrome.  

It bothers me to hear someone say or write that Abby suffers from Rett syndrome.  I want to point out that her life isn't all about suffering.  Rett syndrome presents many challenges and frustrations.  There are times when it feels all-consuming.  But Abby is not defined by her medical symptoms.  She is so much more than Rett syndrome.

Our family lives with Rett syndrome. 

This past spring was a challenging time for Abby.  An abnormal blood test result led to a very long, horrible lesson in "leave well enough alone."  At her doctor's suggestion, we took her off her medication which controls some nervous system symptoms, such as biting her hand, hitting her head, and head-banging.  That did not go well.  Her doctor prescribed another medication, which only made things worse.  Much worse.  

If I try to describe it in words, I cannot do justice to the extent of Abby's misery.  I began writing daily emails to her doctor, describing the symptoms, watching our sanity sinking, about to take our whole family with it.  Abby was suffering from Rett syndrome for several days.  And we were struggling to help her.

With the approval of the specialists at the Rett clinic, Abby is back on the original medication now, and generally back to being her typical self.  She still lives with Rett syndrome.  She still has to navigate obstacles every day.  She still has to go to several medical appointments this summer.  She still needs full assistance with the activities of daily living.  But she is not suffering.  She is living. 

Abby was thrilled to attend her Grade 8 graduation ceremonies recently, mostly because she got to be all dressed up and be the centre of attention!

Her really big news, though, is her new eye-gaze device which has finally given her a voice to tell us what's on her mind.  Now that we've got ourselves back on solid ground, I look forward to writing my next post about Abby's words.

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