Sunday, December 7, 2014


In Utah I was connected with so many families of kiddos with spina bifida who lived nearby. We had a few lunch/play dates and we chatted with each other online. Our family was also part of a local foundation that supported families of children with disabilities of all kinds and sponsored swimming, skating, and pizza parties for us. Moving to California kinda killed that network for us. I tried but failed to find similar groups here so I started my own Spina Bifida California families Facebook group. That helped. Then I reached out to Evan's therapists to find other local families for play groups. None of Evan's therapists work with or know any other kids with spina bifida. Zero. From what I could find there are literally ZERO other kids with spina bifida within an hour and a half in all directions from us.

That's one of the reasons why today was nice. The Spina Bifida Association held a Walk-N-Roll for Northern California. Families from all around gathered in a semi-centralized place and we were able to meet some of the faces we've seen online and learn about their families and their kids. Most of the families are more experienced than ours--most deal with more issues than we currently do--and they offered advice and shared their experiences. I don't need a formal support group to sit around a circle with and talk about my challenges, but what I really enjoy is seeing how families like mine deal with everyday life--seeing the "normal" life of a family with spina bifida.

Now for the good stuff.

The event was held at Coyote Point Recreation Park in San Mateo. It's a large park along the bay where you can see the planes from the San Francisco airport. When we first arrived there were some kid games (toss the ball/beanbag). They had some breakfast snacks and there were sponsor booths like healthcare people and Coloplast--stuff for bowel/bladder management. Exciting, huh? There was also Bucky the Bronco, the mascot from a local school. Evan kept an eye on him the whole time out of sheer terror. To start the race you had to walk past the cheerleaders and Bucky, but Evan was paralyzed with fear. We ended up as the last group to take off and we didn't leave until Bucky had walked away.

The walk was a one-mile trail around the park. Evan took a lot of breaks to watch the ducks and the airplanes. There were lots of bumps in the road (literally), but he plodded along alright. We gave him a little break in the middle but he walked a good portion of the race and finished strong...once Bucky left the finish line. 

All of the teams had coordinating t-shirts, and leis were used to distinguish the stars of the event. Our team of 3 didn't make shirts. We just decided to match with black and red, not knowing that Team Ethan would be showing up in red as well. They were a large team so there was lots of red and their shirts had the superman logo with an "E" on it. A lot of people approached Evan and said, "So this must be Ethan!" We had to explain ourselves a lot. At the awards ceremony we won the "Smallest but Strongest Team" award. 

Evan helped draw a number for the raffle
Team Evan and Team Ethan
Ethan's mom, Jen, and I had met on Facebook. We both had fetal surgery at UCSF and we both have the cutest boys in the world. We gladly passed on Evan's parallel bars for Ethan to use as he starts standing and eventually walking. I think these two were the youngest ones at the event.


  1. Go Evan, that is so amazing. I am glad you were able to stop for a few minutes this week and what luck/fun to have Zoe here to play/remember Evan and his greatness. We love you all.

  2. Heart=melted. That video of Evan running! Love!!