amaya at lake

amaya at lake

Friday, November 29, 2013

Thankful

I'm celebrating Thanksgiving in Phoenix, AZ with some of our family. I began thinking about Thanksgiving and what I'm thankful for. Just for kicks I looked up the word thankful in the dictionary. Here's what I found. "Thankful: conscious of benefit received." I have received many benefits. I am truly thankful and grateful for each and every one of them.

On this day I'm thankful for Josh, my loving partner who brings joy to my life and can always make me laugh, even in the most trying of times. That's a rare gift and I'm grateful for him. He has a depth of compassion, patience and love.

I'm thankful for Lidie, our spunky five year old, who makes me laugh, is sweet and kind.
I'm thankful for Amaya, our old soul, who is brave and kind. I'm proud to be their mother. I'm grateful that I'm able to watch them grow, for the kisses I get and the lessons they teach me. I'm thankful for how close and connected our family has grown these past few years. Our little family of four is stronger. And I know that, that is a special thing. We've survived and emerged through love.

I'm thankful for my family: who've helped me grow, taught me to be kind, generous and resilient. They've given me a rich culture to share with my girls. I'm thankful for family who's near and far. Some in Mexico, some in New York, some in Michigan, some in North Carolina, and some in New Mexico. Distance doesn't stop the love. I'm also thankful for all our family who've helped us, and encouraged us these past few years.

I'm thankful for the job I have. It gives me the opportunity to help others. I'm also grateful for the co-workers I have that help pass the days with laughter and whom I'm proud to know. It's a great treat to  work with genuinely kind people who want to help others.

I'm thankful for the friends we have.

I'm thankful for our PFFD friends, and allies throughout the world.  We've "met" many online and have actually been able to meet some in real life these past couple of years. These special friends have given help, advice, compassion, empathy and support. Their kids have given the greatest gift to our girls: acceptance and understanding.

I'm thankful for the quality care Amaya has received these past few years. And for Dr. Nelson who is as equally skilled as he is kind. And for our therapists who's help and work I'm grateful for each time I watch Amaya climb and run with ease. I'm thankful that Amaya recovered from her fourth surgery (this summer) with ease; she's pain free, comfortable and recovered. I'm also thankful we get a break from surgeries for a few years, very thankful. I'm thankful that although Amaya still has her bed sore on her heel, it's under control and being treated.

I'm thankful for medical  insurance that covered the costs of her surgeries and follow up care. I'm thankful for how far Amaya has come. For her heath and strength.

I'm thankful for you, the reader, who takes time out of your busy life to read about Amaya and her journey. With the struggles, the joys, the highs and the lows. Thank you for allowing me to vent, and for the kindness you send to us. Thank you for your love, concern and compassion.

Monday, November 18, 2013

The word that hurts my heart

I've had this blog post brewing in my mind for quite some time. I started notes about it over a month ago. It was painful to write, and I couldn't bring myself to finish it or post it. But now that some time has past I'm finally ready to. At least I think I am. So here's my notes that I started six weeks ago... 
"Eight years later...still can't get use to the word "deformity." Hard to swallow. My brain understands it. But my heart hurts. It stings my ears and cuts my heart (yes I realize that's a tad dramatic). But ever since Amaya was ten days old I've heard words like defective, abnormal, weird, different, etc. those words hurt.
And I cannot talk about or blog about this without tear filled eyes. It's something I struggle with...coming to terms with the language and the feelings they evoke. I know medically PFFD is an abnormality, a birth defect. Yet it hurts because it's not PFFD that's defective. Is implying that my child is defective. And she isn't."
I'm not sure how to end this post. I've tried to make peace with the word deformity, as well as other words. Yet, eight years later I still struggle. I think mostly it is because when you talk about PFFD and it being a birth defect or a deformity, you not only talk about it but about the person who has it. And it's hard to distinguish the two: that the PFFD is the abnormality not the person. And that even though their leg is "deformed" they are not. And as a parent it's hurtful to have any word like that associated with my child, even remotely.  My brain and heart have a hard time seeing eye to eye on this issue.

Thanks for reading along and letting me vent. And for seeing Amaya as more than a child with a birth defect, or limb deformity.

Sunday, November 17, 2013

Amaya's timeline

    When I picked up Amaya from school this week her teacher told me that they had worked on their time lines that day. She invited me to come in and look at them. I was excited to see what Amaya had created. She had selected the pictures herself and what to write for each photo and time period. The class was instructed to chose one picture per year. I was very happy with Amaya's timeline and decided to share it with you all.
      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!