Monday, May 13, 2013

Happy Mother's Day

Happy belated Mother's Day, especially to my mom. She's been a rock for me.

Yesterday I was riding back from my parents house after celebrating mother's day with my mom and our family; for a minute I almost started crying because I was just so happy. It was a great day. The weather was decent and Will loved every minute of playing outside with his cousins.

We played basketball, raced cars, climbed on the swing set, played with tools and just enjoyed making each other laugh. I am just to thankful to be where we are right now. We've had some "banner moments" the past few weeks with work, Will and our lives. I am so hopeful for the future right now.

I thought I had given up a long time ago on putting expectations on Will. I still have for the most part, but the kid keeps exceeding my expectations every day. His little hands are getting stronger to cut, work and manipulate items for fine motor skills. And while he doesn't appear to be a huge fan of speech therapy he's doing pretty awesome there. Though as he said in today's session, "This is taking sooo long."

So for today and as many more days as I can muster, I will refuse to think of what will happen when he can't, but focus on all the amazing things he is accomplishing today.

I am honored to be his mom, humbled that I was given this amazing person and incredibly proud of my son, my hero and my little teddy bear Will.

My mother's day flowers and vase. One hand was orange of course - his favorite color these days. I also got a spa day from Neil - one smart husband he is!

Playing with trains over the weekend. I think he enjoyed making them crash into each other the most.

Refusing to take a photo together at the Astros game.

Thursday, May 2, 2013

People Against Leigh's Syndrome

I am really excited to write this post today. A group of our friends came together to form a non-profit called People Against Leigh's Syndrome or PALS in an effort to further push research efforts for effective treatments and hopefully a cure for Leigh's Syndrome.

When they first asked us if we would be on board, I was overwhelmed with emotion - happiness, joy, humbled, nervous, but mostly just thankful. Thankful that we have people in our lives that care so much about our little guy to give their hearts, money and time to help him. I don't think I have ever experienced anything quite like it.

After a few months of really hard work, we have officially formed the entity, People Against Leigh's Syndrome, are putting together a fundraising event and worked through all the other details that come with starting a non-profit.

Debuting the logo, designed by the masterful Jimmy Egeland. Thank you Jimmy!

Debuting the website: - a huge thank you to Andy Dyer!

And most of all, a Gigantic Thank you to the following people who have made this happen:

Bridgette & Keith Bilski
Joelle & Mitch Derrick
Lauren & Andre Granello
Peyton Jones
Bridget & Andre Kostelnik
Sandra & Walker Molinare
Tahra & Craig Peterson
Emily & Mike Sperandio
Janae & Ken Tsai

And a special thanks to some other Leigh's families who have agreed to help kickoff this organization and share their story too.
Elizabeth & Ryan Baker
Sandra Birkaline & Shawn Huddleston
Laura and Paul Vanchiere

If you want to get involved, volunteer, donate or learn more please send an email to We can always use help to secure auction items, inkind contributions such as food, giveaways or simply your time to help stuff envelopes for example.

I can't tell you how much this means to us. This journey, this hellish, unbelievable, tcrazy journey, keeps me on my toes and humbles me to the ground in ways I never thought possible.

Thank you from the bottom of our hearts to the founding members of PALS - they are our friends and our heros.