Thursday, February 26, 2015

February 27, 2012

Tomorrow will be three years since we found out Lu has Rett Syndrome. When Dr. Coffman called and told me the news, all I said was, "Okay." And he said, "No, it's not okay. You don't have to say that." I feel like I have a weird thing about not being able to react in the way people expect me to in the moment that they expect it, and so what else was I going to say but, "Okay." And although I was floored by what he was saying, and overwhelmed, and devastated, and all of those things, I think I also meant, " what? What do we do to help her? What's next?" But that was the difference between us and Dr. Coffman; he didn't believe anything was next. I guess he essentially believed that he had just called me to break the news to me that my life was ruined, and then to invite us out for an appointment where he would provide details on exactly how it was ruined. Screw you Dr. Coffman. Screw you.

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!

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