MAEde on purpose for a purpose
Maeve reaches out to me now. She’s three years old, and this is a recent development. When she was just a wee lass, when a typical baby would begin to reach for mama, her muscle weakness, visual impairment, and catawompus firing of signals in her brain (see: missing UBE3A) kept her from it. It was h a r d for
May 6, 2019- it was my dear friend’s birthday, and I was making a meal to take to another friend’s house after she had her first baby. Mexican I think. I was up in my bedroom where I had fled to escape the par-for-the-course chaos of five girls when I saw the genetic counselor was calling. I remember she
Thanks to your support – $337.80 will be donated: $112.60 – Foundation for Angelman Syndrome Therapeutics $112.60 – Angelman Syndrome Foundation $112.60 – Reagan’s Journey
Before we had a diagnosis but after we had come to terms with the unnamed yet significant differences in Maeve, a friend of Nathan’s sent him an encouraging email that went straight to our hearts and probably won’t ever leave. In it this friend shared a short piece written by Emily Perl Kingsley entitled “Welcome to Holland.” I love- I
With the viruspandemicglobalcrisisquarantining going on (and on and on) I’ve found Maeve’s naïveté to it all to be yet another gift she offers our family and my soul. She’s her same wonderful self, our special joy, laughing in the storms that have the rest of us trembling (literally… last night). So sometimes, when that sadly familiar swell of worry or
