Friday, July 4, 2014

Disneyland California Spina Bifida Conference Adventure

Coming from Mexico following the stem cell surgery and witnessing mass poverty in Tijuana, then traveling north to the land of opportunity, excess and indulgence at Disneyland was quite the transition.  You can read about the stem cell journey at

The first time attending the national spina bifida conference in 2011 felt like a culture shock. It was a culture shock to see so many other families that look like our family. I found myself staring at them the way the people stare at us.  This time around, it felt like coming home.

The conference was a three-day event. Opening-night was great to see many of our long-time Facebook friends and fellow spina bifida families.  This is the first year Hayden had the opportunity to attend spina bifida camp with other children his own age. He attended all three days of camp. He continued to feel energetic and do remarkably well following his stem cell surgery.

Scott and I each took a day at conference while the other took care of the children. It was a great opportunity for each of us to go and learn and report back at the end of the day. We both got to learn from the testimonies of many successful individuals that are attorneys, doctors, and athletes that also happen to have spina bifida.   They bravely shared what it was like growing up with their various difficult challenges and how it refined them to achieve success.  They were bold, brave, determined and humble in the face of daily extreme adversity.  

I also got to do around table discussion with families from all over the country sharing the latest and greatest information of what medically works for them and their families in various parts of the country.  Our doctors are going to get a long list of new information from us when we get back home to Austin.

Scott also got to learn from various specialists. He got to learn from orthodics, orthopedists, neurosurgeons, and urologists from Philadelphia to Seattle to California. Unfortunately, the big missing component of the conference was what research is currently being done for the benefit of those living with spina bifida?  Spina bifida is the most devastating and permanently disabling birth defect compatible with life affecting one in 1000 people from occulta to the most extreme cases like Hayden with myelomeningocele.

While we are hopeful with stem cells, something else has to be done for research with the daily issues that effect those with spina bifida.  You might think that the biggest challenges are mobility, but the daily battles largely lie with incontenence and issues associated with urology, neurology, scoliosis and gastrointestinal issues that are not only physical issues, but social issues.

The best part of the conference was getting to meet with other families and talk about the successes and challenges they've had in the medical community and get to collaborate all of our information.  They just get it.  We can have a conversation without having to do any back stories on how we got to where we are.  They understand the daily therapies and life of special needs.  I especially love our super subculture and friendships with those of our same Christian faith and understanding the special joys, blessings and opportunities of having a family member with special needs.

With the reorganization of the association, conference will only be held every other year. The next location has yet to be determined.

One of our special opportunities following the conference was spending two days enjoying every minute with the children at Disneyland.  One of the greatest pleasures of this trip was getting to see the joy and excitement in our children's eyes as they saw the real life Cars' Radiator Springs & all the Princesses.  Disney treated us fantastic even with the changes in policy for those in wheelchairs.  Hopefully it will be a little harder for people to abuse the system and keep it a wonderfully accessible vacation destination.

The parades were awesome as well as the fireworks as we conclude our Fourth of July experience.   

Following this journey, it is hard not to go on seeming too religious. It has been a prayerful experience that we can not deny.  Our prayers have been answered in God's timing. We continue to pray to have insight and patience along our continued journey.
Meeting up with many fantastic moms that I admire and glean from daily.
The highlight of Hayden's vacation.  He even gave him a kiss and Mater said, " wow, hot dog!"
Radiator Springs with our star guided tour by Cinderella...this day.  We were guided by a different princess each day.

He can't even stand it.  I though he was so star struck he could faint right there on site.  Good thing there was ice cream to revive him there at the Cozy Cone.
Trigg family with the one and only T-I-double-ggER.
After standing in line to buy the dress at Bippity Boppidy Boo, she was the most happy that they had re-stalked after days of being sold out of the Elsa dresses.
Squashbuckling Pirate brothers.

Full on character accompanied by spontaneous song and acting.

It is with deep gratitude to the nameless many who have helped make this trip possible. We are forever grateful for these memories to you our many friends and family who have sacrificed to help us make this brave and joyful journey.

These are but a few of our iPhone pics and we will share with you our better ones once we get our home unpacked and internet.

As they say in Disney, ta-ta for now.

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