Well friends, today is LEAP day! A day that happens only once every four years. Pretty special day! And appropriately enough, the first year we celebrate Rare Disease (& Disorder) Day is also LEAP day! Angelman Syndrome is so rare that we don't have a specific day for AS- something that is on my list to change! So we just jump in on the Rare Disease Day, even though Angelman is a syndrome, not a disease. Which is why I call it Rare Disease & Disorder Day. Yes folks, I do march the the beat of my own drummer. His name is Fred. ;)
Anyway, we have a big doctors appointment today, and another coming up in April. Both appointments are for Ava's development, and she will be seen by several very highly regarded Developmental Pediatricians. When we first went to see the developmental pediatrician, I had a whole list of things that Ava couldn't do in comparison to her typical peers. But now, with her diagnosis and a whole new set of peers, along with a different outlook on things, we are ready to walk into the appointment with a list of things she can do, and I must say, that is a fabulous feeling!!!
So today, my Angel Word is INSPIRING! Ava is inspiring to me. The obstacles she has overcome, her happy and head first approach to seemingly unachievable tasks. Ava is only two, I know. And there may very well come a time when she protests against therapy, gets frustrated at the lack of progress, etc. But I have never seen a child so eager to work and willing to do things over and over again, despite being tired or hungry. We are usually early to therapy, and every day, I have to continuously keep her away from the door that leads into the therapy area from the lobby. Because every day, we arrive, I put her down, and she bolts to the therapy door and is banging on it like "I am here! I am ready! Let's do this!!!" Seeing how happy she is, seeing how she shows off for Daddy when he is there, watching her take a few wobbly and ataxic, yet independent, steps at a time and feeling the tight hug she gives me when she has done so....it just is inspiring. She never quits, never gives up. She always gives her therapists a work out!