Tuesday, August 14, 2012

Best part of San Diego!

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This past week, Rory and I were fortunate enough to accompany Jon (who had to travel for work) to San Diego.     We had such a great time!  We went to the the Zoo, Sea World, the La Jolla beach, and the Ruben H. Fleet Science Center; all of which were amazing (and all of which I will blog about in the future), however the highlight of our trip was meeting Amaya and her wonderful family.  

Best Buds!

Amaya is a beautiful girl who has CFD/PFFD, the same condition as Rory.  I was fortunate enough to find Martha through her blog about Amaya’s journey with CFD/PFFD, and we have been e-mailing every since.  Of course, I probably drove her insane asking more questions than I should about Amaya and how she's dealt with having a child with this extremely rare condition.   

Wheelchair Rides!

I knew they lived in California, so when I told her that we are going to be in San Diego, I asked if they wanted to meet up with us.  They lived about two hours away, but to my surprise they drove up and met us which was just such a blessing!  We were fortunate enough to meet Amaya, her beautiful sister Lidie, their mother Martha, and her husband Josh.  Meeting this family was like a breath of fresh air!  

Instant Friends!

I am not sure if they will every know how much of an impact they made on our life.  We met them at a park, moved to the Science Center, and then had dinner together and a nice walk.  When we met them,  Amaya had a little gift basket for Rory, it was so sweet!  She knew through Rory’s blog that we love to do art projects, so the bag had crayons, markers, a holder for her colors, paints, and a book for Rory to bring down for her surgery and color in.  It was the perfect gift!  I did not notice it at the time, but when we came back from San Diego, Rory and I noticed that Amaya wrote a little message for Rory in it.   It literally brought tears in my eyes.
Love this picture! 
Hugs for Martha!
The bond of these three girls had was amazing!   They immediately became instant friends.  Rory was so comfortable with Amaya she rode in her wheelchair.  Rory was quite curious about her fixator too,and Amaya was so good at letting Rory touch it!   It was really need to watch them interact.   Rory wanted to do whatever Lidie did too, she watched the “big kids” studying their every move.
The fixator does NOT hold her back!

Watching the big kids play on the playground

Rory's has to try!
Meeting this wonderful family was extremely beneficial for Jon and myself as well.   You can't really mentally prepare enough for your child to go into a surgery, so to actually sit down, talk, and share my fears and concerns with another woman who has been down the exact same road as me, was completely priceless!
Silly Faces!

Although it was the first time we had ever met in person, there were no awkward pauses or lack of conversation.   We learned how similar our families really are, starting with the discrepancy and ending with us all being vegetarians.  (Which was fabulous when we went out to dinner with because we all knew we wanted to eat at a vegetarian restaurant!)  It was such a great time!   As I said before; meeting this family and seeing Amaya with her fixator, hearing stories from Josh and Martha about their journey, and watching Lidie’s  face light up with a huge smile, made our trip!

It looks like there is a little good in everything....CFD/PFFD brought our families together, and I know that we will be life long friends. 


  1. It looks like you had a wonderful time together.

  2. We still talk about meeting Rory! We had such a fun time with you all. And no you didn't drive me nuts with the questions, we're happy to help!



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