Monday, July 18, 2011

Trying out new wheels

Just update Hayden's blog  www.haydentrigg.blogspot.com please go there to donate to the SBA.

This is one of the biggest purchase decisions we have had to make for Hayden.  So many things to consider.  We will have to get a new vehicle, change all our doorways and many more things.  But most of all we have to find the best fit for him to last him several years.  We haven't made up or mind just yet, but the kids are sure having a good time trying them out!


This one is called the Tiger Cub
This one is called Ottoboc

trying offroading

Sunday, July 3, 2011

National Spina Bifida Convention and Disneyland

Please DONATE now to the Spina Bifida Association and check out Hayden's blog at www.haydentrigg.blogspot.com.

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.