amaya at lake

amaya at lake

Sunday, September 15, 2013

A great story

     Yesterday we took the girls to Legoland to celebrate Amaya's birthday. She'll be eight on the 17th. We had a great time. While we were in line for a roller coaster ride I noticed a little boy looking at Amaya's leg. Here's how the encounter went.
     The four year old noticed the scars on Amaya's knee, then he looked down to her shin. He looked a bit confused, and somewhat surprised. He started to point at her leg then whispered something to his parents. The parents were embarrassed. They quickly pushed his hand down and told him to not stare. The mom tried to change the subject by asking, "oh, do you like her shoes?" The kid looked at his mom with like she was crazy and responded with, "no, look! What is that?!" He pointed at Amaya's scars. He was only about a foot away from Amaya, but she was oblivious to it all. Again the parents pushed the boys hand down and scolded him for pointing and staring. Since we were in line we were awkwardly close together. I smiled at the family and asked, "did he notice her scars?" The parents smiled. Then the dad said, "yeah, I'm really sorry." I smiled, and told him it was okay. The boy wasn't being unkind, just curious and confused. I said, "the scars can be a bit intese." I added, "she's had a couple surgeries. She's had her knee reconstructed and her femur lengthened." The mom smiled and said, "well, she's still got cute shoes." I smiled and thanked her. I wanted to tell her how these were one of the few shoes Amaya has been able to pick on her own, and not had modified to add a lift. I wanted to share our joy that for the first time Amaya had two feet flat on the ground. After a small pause the dad said, "well, it makes for a great story." I smiled then thought, 'you know what it does.'
      It is a great story! A story about a little girl who has endured, overcome and achieved so much, despite being born with a disability. Her story is a story of strength, courage and resilience. A story that includes a little sister who has grown in her empathy and compassion. This story that has many heroes.  Our first orthopedic who gave us great advice: to never limit Amaya. Our PFFD friends and allies who help us on our journey with advice and empathy. Our surgeon, Dr. Nelson who's skill, talent, dedication and kindness has forever changed our lives. Our therapists, Melissa, Jay, Cassie who challenged and encouraged Amaya. All the other therapists who encouraged Amaya. Our pediatrician who works to keep Amaya healthy. Our referral coordinator, Marilou, who works so hard to make sure all of Amaya's referrals are taken care of and that Amaya never has a lapse in treatment. Our family and friends who've given us kindness and support. Amaya's friends who've accepted her just as she is. And a mother and father who love her wholly and completely.
    Thanks for being a part of our journey and story.
Here's our sweet girl. You know what I think is cool? That Amaya continues to wear shorts that show off her scars, that she's oblivious to the stares of others and that she lives life without letting PFFD or the surgeries or scars limit her. She's amazing! 
Here's a close look at the scars around her knee.

Tuesday, September 10, 2013

Getting ready for our second CHOC Walk

    We've signed up for our second CHOC Walk! The CHOC Walk is a 5K fundraiser for the Children's Hospital of Orange County. This year we decided to walk and fundraise as a team, Amaya's Goonies. Last year as a family we raised $450. This year we have a goal of $800. If you'd like to walk with us, sponsor us and/or spread the word we'd greatly appreciate it! Donations can e made online or by mailing checks to us and remember donations to CHOC are tax deductible.
    The walk will take place on Sunday October 13, 2013. The walk will begin in Main Street USA inside of Disneyland and continue on into California Adventure. The walk is a lot of fun and a great way to raise funds for another local Children's hospital. As you know, we've spent some time at Loma Linda Children's hospital for each of Amaya's surgeries.
  If you'd like to join our team or sponsor us visit then click on "sponsor walker" then click on "donate to a team or walker."There you can look for our team, Amaya's Goonies. On our team page you can sponsor us as individuals (we have to raise at least $50 each) or join our team. If you have any questions feel free to email me at
    Thanks again for all your help and support along this journey. Below are some pictures from last years CHOC Walk.
Josh and the girls waiting for the walk to start. Amaya rolled through most of the walk last year. Amaya was cold and very sore at that point during her lengthening. 
And this is what will make this years walk so emotional for me. Knowing how much Amaya has endured, and overcome in a year! Last year during the walk she had a fixator on, had more therapy, healing and recovering to do. This year, things are different! 
The girls and I with Jessie and Woody. 
The girls loved seeing the different characters throughout the parks.