WALKing to a Different Tune

Last year, for the Houston Hydrocephalus Association (HA) WALK, Team Emma Lee raised $1,355. Our goal was $957 - the number of days old Emma would be the day of the WALK. I was overwhelmed that we had so much support and thrilled to have done so well our first year.

Team Emma Lee had an astonishing year this year. Now, in our second year in participating in an HA WALK, we had a goal of $1,328 - again the number of days old Emma would be the day of the WALK. Only this time, I was also Co-Chairing the inaugural DFW WALK. Because the WALK would be local, I also had a goal of having four others join the team and attend the event with us. For the entire team, I set a goal of $3,000 - the number of years old Emma would be the day of the WALK. I was hopeful that we would again reach our goal, but I had no idea how far we would exceed it.

When all was said and done, Team Emma Lee was tied for third place for the number of team members: TWENTY-ONE! I was so thankful that so many wonderful friends and family were there to support her this year. Not only did we have one of the teams with the most members, but Team Emma Lee took the trophy for the most money raised by any team. We not only exceeded our Team goal of $3,000, we nearly tripled it with a final number of $8,743!

The entire WALK had over 500 people in attendance and raised over $54,000!!! When the goal was originally set for $18,000, it was amazing to see our group triple that goal as well. I would like to personally thank the other two Co-Chairs and volunteers - this event would not have been possible without all of them. We had an amazing group of people that really pulled together and got everything done despite the minimal setbacks we had on the morning of the WALK.

I'm already excited about the WALK next year. It will be nice to do this again after having one event under our belt. We learned so much and plan to have an even better event next year!

Hydrocephalus Awareness Month #HAM2014

This year, September is an even bigger deal for us than it was last year. A year ago, the goal was to try to raise awareness during Hydrocephalus Awareness Month (#HAM2014) and get the word out to our local community that this condition is more common than one might think. One way we did that was to have an article published in the Cross Timbers Gazette telling Emma's story. The article was a big step for both of us, and one in the right direction.

This year, now that I am also a Co-Chair of the inaugural DFW Hydrocephalus Association WALK happening on Saturday, September 27th, it is even more crucial that we reach as many people as possible. This year, we are not only raising awareness - we are also raising money to fund research to find a cure. Our goal when planning the event originally was to raise $18,000 and have 200+ walkers. As of today, we are already over both goals with a total amount raised exceeding $33,000 with just over two more weeks to go! If you're interested in donating, please click HERE.

When I started looking for ways to try to reach more people, I remembered the wonderful people at the Cross Timbers Gazette and contacted the man that wrote the original article on Emma last year. I asked if they would be interested in doing a follow up piece to help us and he was delighted to support us! The article from this year can be found here.

In keeping with #HAM2014, here are some facts about hydrocephalus put out by the Hydrocephalus Association (HA).

Just remember - any one at any point in their life can be diagnosed. Help us raise awareness and share!

DFW HA Community Network - dallas.ha.sg@gmail.com

DFW HA WALK - dfw.ha.walk@gmail.com

Dance as Though No One is Watching You

This summer, while Emma was attending Extended School Year (ESY), she started some private physical therapy (PT) to supplement the therapy she was getting at school. We started this because the therapy she would be getting at ESY was different than what she was getting during the school year in her Functional Life Skills (FLS) classroom, and I wanted to be sure that she continued to make strides in her progress if at all possible.

With her summer therapy ending this week, I had to share some of the things she did the last couple sessions that we caught on video. She is still getting stronger everyday, but now she is getting better at standing. Today, she even "fought" to stand up to keep watching some of her favorite Pixar short films. But my favorite was where she started to wiggle her booty to the beat of a Sesame Street song while standing. Granted, by the time I got my phone out to catch it, she had slowed down, but here is a little bit of it. I keep hoping the wiggle in her legs will turn into stopping, and then stepping!

Watching the video together after we got home, I started thinking. I loved seeing her dancing and expressing her joy through movement. I think it means so much to me because she has had to work so hard to overcome her developmental delays on her gross motor skills. It reminded me of one of my favorite quotes from an amazing lady.

"Dance as though no one is watching you,
Love as though you have never been hurt before,
Sing as though no one can hear you,
Live as though heaven is on earth."
- Audrey Hepburn

I know as she continues to work hard, getting closer to her first steps, I will continue to sing as many songs as many times as she wants, and dance as ridiculously as needed so she continues to feel the freedom to dance as though no one (but Mommy) is watching.