Today is Valentine's Day, yes 2016... every once in a while I feel guilty that I can't keep up with our blog and think.. I should write something. My job, a typical 4 year old and Maisie now 6 keeps me on my toes.
Tomorrow marks the International Angelman Syndrome day! The one thing that I do consistently is create a video every year for AS.
The hardest part for me is this time of year, the time where I watch what other kiddos are doing, what the research has in store... it is the reality of what we all live with every day. Another annual event for us is the FAST Gala in Chicago every December. This year there was a great video of our angels...
I pray that God will let us hear Maisie's voice again. Although Maisie is become more versed with her communication device I want to hear her voice, more than just a hum, words. This year we were blessed with a 'Make a Wish' where we went to Disney world last month (Jan. 2016). It was amazing!!! The hardest part is Elsa, which turned 4 when we were there said "mom, my wish is for Maisie to talk like us, without her talker" Thinking about it, writing about it still brings tears to my eyes. Although Maisie doesn't talk she has beat other odds.
Summer 2015- she rode a bike, not her adaptive bike but a bike with training wheels!!!
Maybe it was because I purchased 12 different kinds of ride on, bike, trike like things to get the skills going. Maisie is determined and so am I!
The journey has been long, the days can be challenging and I believe all things are possible. Maise can't do it... YET.
We will be seeing a new set of doctors at Mayo Clinic in Rochester, MN at the Angelman Syndrome Clinic (3rd in the nation). I am excited to see what they say, what am I missing, how can I help her grow and do more... because anything and everything is possible when you believe that it is. Maisie has given me lessons that I could never learn in college or in my job. In fact Maisie has impacted my work beyond belief. I am an administrator and oversee our special education department, must I say more? :)