Now, I firmly believe that if I am going to write a blog about caring for a child with Rett Syndrome it is my absolute duty to share the good, the bad, and the ugly, and I think I do. I have written about many difficulties we face each day. I have written about how hard of a time I have at times just contending with the symptoms of the condition, and all other sorts of not so cheery things, but I do my best to also share the wonderful, amazing, breathtaking aspects of being Lucy's momma...because those things far outweigh the dreary things. What would doomsday Dr. Coffman think about that? We have found more good than bad in the aftermath of receiving this diagnosis. Our life is different, and hard a lot of the time, but most definitely not ruined, not even close.
This was taken exactly three years ago today, the day before her diagnosis:
And here she is today, a big, beautiful, almost-five-year old girl!
And here is a Valentine she made with her OT. She gave it to her Daddy. Oh, and used her Tobii to spell her name herself and tell the OT what order to put the letters in!
And here she is choosing flowers for our garden this summer. Some of her choices include a white Bleeding Heart, a bright orange coneflower, and some "Strawberry Candy" colored day lilies. She used just her yes and no head movements to make those choices.
And just one more: here she is playing her tambourine at the supper table, because she asked to.
So, Lucy is spelling, choosing, asking, playing music, and still smiling. I have already said many times before that I will never, ever, ever forgive Dr. Coffman for the out-dated, negative, and hopeless information that he gave to us, and I will certainly never ever forget it. Here we are a mere three years later and Lucy has already surpassed what he indicated we should expect from her life a zillion times over. And again I say, it's only been three years! What will the next three years bring? And the three after that? And after that? All I have to say is, look out world, because here she comes!