Sunday, July 3, 2011

National Spina Bifida Convention and Disneyland

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I am about to begin to post our most memorable family vacation photos of all time.  Last week we had the great pleasure of attending our first national  Spina Bifida Association convention that also happened to take place at the Disneyland hotel.  It was our first trip to Disneyland was well.  

It was a wonderful trip full of positive emotions.  However, checking into the hotel and being among so many people in AFOs, arm crutches and wheelchairs was unexpectedly a bit overwhelming.  I wasn't expecting to feel that way.  

The best that I can explain it is that each day has brought greater understanding and peace while working within Hayden's abilities.  I have worked hard to stay in the current moment and not worry about what Hayden's future physical difficulties may be.  Then all of a sudden, I was catapulted to forseeing him as one the many brave young adults that we were meeting.  I had to work hard to taking that step back and give myself that little coach pep-talk about having faith that all the therapies we do will be beneficial and that I can not place limits on his individual potential.

We met some of the greatest families on Earth at the "happiest" place on Earth.  For nearly 3 years we have been in communication with other families from around the country that have experienced and have walked the path that we are walking.  They have been our greatest comforters, knowledge centers and inspiration along this journey.  They tell us things no doctor has been able to, such as the power in the joy these children bring into our lives and their limitless abilities.

Scott and I took turns taking care of the kids while each of us attended a day at the conference.  The third day was my birthday, so we spent our time together as a family.  There was no good way to get everything we wanted to do crammed into an 8 hour day.  While we wanted to spend more time with the other moms and dads chatting, our kids still needed our attention. 

The conference topics that were my favorite were the discussion on the results of the MOMs fetal surgery study that we partially participated in (we were one of the 299 people over the course of 7 years).  The lead researcher Dr. Adzick presented.  My second favorite part was the parent-to-parent forum chat.  We all got to meet face to face for the first time.  The second day, Scott participated with some other dads and attended various classes that they thought were beneficial.

Our main goal with our kids was to put them first, since they were the reason were there.  So we went full throttle at  Disneyland.  Disney was wonderful to those in wheelchairs and/or disabled.  We rode every ride that we could with the exception of Indiana Jones and some rides twice because we didn't have to wait in lines.  Hanna had many favorites.  Her first ride was Space Mountain.  She loved the roller coasters.  Hayden was a bit worn out and scared by everything that was dark indoors but he took it for the team.  By the last day, we were so tired even Hanna wanted to go home.  We are glad to be home and cherish our memories.

God bless all the families we met at the Spina Bifida convention and Disneyland for making it easy and fun for those in wheelchairs.


Lisa Maksus said...

I LOVE the picture of both the kids in the stroller slumped over sleeping. I felt like doing the same thing at the end of the day. It was so wonderful meeting you and your amazing kids.

Colleen said...

She rode Space Mountain! Oh my gosh, that ride was scary for ME! That girl is brave!

Stephanie said...

Looks like a fun time! I still have nightmares about riding space mountain when I was little-brave little girl you have there! :)

Leigh and Andy said...

It was SO great to meet you and your family!! The others are've got one brave little girl mountain?!?!?! :)