Here's the first picture Amaya chose. This was actually taken when she was about three months old. She was such a cute, bald, baby. I was really taken back by what she wrote under the photo, "This is me when I was born. My parents were going to learn I had a short leg in a few days." Maybe its how nonchalantly or how calmly she says it that sticks out to me. Honestly it's kind of strange and sweet. I don't ever remember telling her when or how we found out about her short leg. Yet, reading it its as if she was there with us those eight years ago as we learned about her leg and PFFD. Her version of what happened is so calm, concise and simple. I wish it had been. I remember how confusing those first few days, months and years were. I remember the pain and confusion, the apathy of our fist doctors, the lack of information, waiting for a diagnosis, having an incorrect diagnosis, searching the Internet, etc.. I can't remember when exactly I realized Amaya had a shorter left leg. I remember learning things throughout time. First hearing her knee pop, learning her hip "was abnormal," being told Amaya had hip dysplasia and made to wear a brace for four months only to later be told it didn't help at all because she didn't really have that. Then later learning that Amaya's knee was dislocating with each "pop" we heard, then learning she had PFFD, searching out a second opinion, learning of treatment options, learning of the lengthening center in Baltimore then in Florida, finally meeting Dr.Nelson when Amaya was five. Once we did we continued to learn more: that Amaya was missing the ligaments in her knee, that her hip dislocated at times, and wasn't fully formed, that her tibia and fibula were also shorter than her right ones, and that she would need several surgeries. Learning of Amaya's "shorter leg" as she called it was a long process. It was trying, and often times emotional and draining. Yet we always knew she was "okay" and would be just fine. Looking back it seems so long ago. To be honest I like her version better.
I wondered if she would include her fixator in her timeline or not. She did. It was such a big part of her life and took up most of her sixth year of her life. Here's what she wrote below the picture, "This is me on first day of kindergarten. I was exited!!! I had a fixator on my left leg." The picture was actually taken the first day of first grade. She got her fixator put on toward the end of kindergarten and then taken off halfway into first grade. I love how matter of fact she is. She adds, "I had a fixator on my left leg" at the end of her statement. Its kind of funny, that its an added fact at the end, as if we couldn't see it on her leg. As if it wasn't a big deal. But, I think it means that even though it was big and a big deal, it wasn't all that she remembers of that time. It wasn't the highlight of the day or year.
Here's a look at her entire timeline. Its interesting to see that of the nine pictures she included she only mentions her "shorter leg" and fixator twice. She includes a baby picture, her first birthday, climbing a tree as a toddler, holding Lidie for the first time, playing at the beach, ice skating in Rockefeller Center, starting first grade with her fixator on, hanging out at home and heading out to a Halloween party this year.
I think this timeline is representative of her life and how she handles her PFFD and her surgeries. Although PFFD and her surgeries are a part of her life, they aren't her entire life or what defines her. She lives life just like any other kid. She's happy, healthy and thriving. Often parents ask me if we regret the surgeries we've had done for Amaya and what her thoughts are about them. We have no regrets, and neither does Amaya. She has always says she'd do it all again. It makes me happy to know that Amaya is doing so well. That although PFFD is a part of her life, it doesn't limit or define her. She's amazing! And these eight years have been too!
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