Monthly Archives: January 2013

Light at the End of a Marathon

Congratulations and thank you, Roxane! Roxane ran the entire marathon, not walked and ran, but ran the entire marathon and also raised $1,400 for our scholarship fund. But the biggest event was Roxane’s epiphany. I would like to share with you her own words describing her wonderful experience:

“A personal note about the race that I’d like to share with you. Before the race, I hugged my daughter Mila for making me so strong and allowing me to achieve such a grueling athletic performance. On race day, I received a very big gift. One I could call: ” And with the running, came the healing” …in a very unexpected yet beautiful way. As I walked to the starting line, my shirt proudly said “Mom of 4. My special-need kid rocks.” I realized how much I, as a mourning parent -you know, we all have to move on past the loss of a “perfect” child – needed this final step in my healing. Yes, we helped Mila overcome many of her challenges. Yes, she surpassed all of our expectations. But there was one thing I forbade myself to do for a long time. Maybe out of shame, maybe out of guilt, or to protect her, or for reasons still unclear to me: I did not want the world to know that she had a genetic disorder. I did not even discuss it with many of our family members. I kept it in the hiding from a lot of people I knew. Yet, there I was, walking around 25,000 random strangers letting the world know that my child was different. And that was OK. That was more than OK…that was my very personal running leitmotif. Many people out there were running for cures, lost ones, personal records…and I was running with a bold statement about my own daughter on my shirt, finally letting go of the shame, getting an immense pride out of it. And guess what, that statement healed my soul and also made sure I would run all the way. And for once in my life, that “special-need” label did not drag me down or expect more of me…it made me take off, it took me one step above them all. And with the running came the healing. Final step of a long mourning process, first step of a great marathon race.

Thank you, NACD, and thank you, Mila.”

And thank you, Mila and Roxane. Our NACD moms and kids are the best!

Related Links

Read Roxane’s very personal account of her marathon experience here

Read about her fundraiser here: Part 1 Part 2

Here Comes Super Bowl XLVII – CTE Chronic Traumatic Encephalopathy

Here Comes Super Bowl XLVII- CTE Chronic Traumatic EncephalopathyNext Sunday a huge percentage of our population will be watching the Super Bowl. I won’t be one of them. I will actually be seeing kids in Cincinnati, or I would probably be one of the millions watching the game. I honestly try to watch the Super Bowl more as a piece of cultural literacy than out of a great passion for watching the sport. My passion for organized football ended in junior high school in my very first and last “organized” football game. My coach directed me to go in and “take out” a player on the other team. I proceeded to walk off the field, never to return.

This morning, Sunday January 25, on ABC News- This Week, I heard George Will make some meaningful statements about football, statements that mirrored my own thoughts. George Will said, ”The most important letters in football are not NFL, but CTE, Chronic Traumatic Encephalopathy, the cumulative impact of brain damage of small unrecognized, unrecorded impacts in a game that is inherently dangerous.”

My boys wanted to play football, but I would not permit it. Spending your life trying to fix brains tends to give you tremendous respect for an intact healthy brain. If we are fortunate enough to have healthy children, we really need to do everything we can do as responsible parents to protect and nourish that brain. We parents are responsible. These decisions as to whether our children engage in inherently dangerous activities are not their decisions to make; they are ours. In like manner it’s not our children’s decisions as to whether they eat healthy food or do the things that are required to learn responsibility or to develop their brains or become educated. As adults they can make all the decisions they want; but responsible parents do not abdicate important life altering decisions to children who are ill equipped to be making such life altering choices. As parents you can decide whether or not football is safe and establish your own opinions on nutrition, education, and everything else concerning your children; but you need to be the one making the decisions, not your children. In the end you are responsible for the consequences; they just have to live with them.

Raising Expectations

Today I was doing evaluations over Skype with one of my second-generation NACD families in Alaska. The mom of the three kids I was evaluating today is a physician, and back in the 80s was one of a group of little kids I used to see up in Anchorage. Talking to Chrystal, who is like family as many of our long term folks are, reminded me of one of the other little girls I saw back then. Carrie gave me one of my favorite NACD kid memories. Carrie’s mom had picked me up at the airport and was taking me to my hotel, and little 5-year-old Carrie was in the back seat. Carrie’s mom asked her to tell me what her two new words for the week were. Carrie responded with her very cute, but sophisticated, five-year-old voice that I can still hear. She said, “Bob, my two new words for the week are ‘obstreperous’ and ‘ebullient’.” I was obviously quite pleased and said, “Carrie, I love your new words; so tell me, are you obstreperous or ebullient?” She responded with, “Well, Bob, sometimes I’m obstreperous and sometimes I’m ebullient, but right now I’m rather tranquil.”

Don’t underestimate your children. They are capable of producing great things if you keep raising your expectations and providing them with a chance.

It’s a Marathon – Part 2!

Yesterday I posted information about a fundraiser by one of our NACD moms. As Part 2 of the report of Roxane’s marathon training and fundraising efforts, please see her most recent note below:

Dear friends and family,

Miami Marathon for NACD FoundationI trained for 5 months. I ran in the Florida heat, through hurricane storms, on very dry days and soaked ones.

I woke up at the crack of dawn, or stayed up on a treadmill late at night.

I ran with hurt knees, injured toes, split shins, painful hips and even a broken shoulder once.

I ran easy and I ran hard. On beautiful days and some very dark.

I challenged myself to go just a little further each time. I kept telling myself I could do it, ignoring my body’s plea to quit.

And because I did all this, next week I will run a marathon, from mile one to twenty-six.

I swear I won’t fail; that part is easy. Because all I’ll have to do is remember: I am running for my daughter, to make sure other kids get to be just like her.

Thanks for your support; every dime and every step counts!


It’s a Marathon!

NACD FamiliesWe at NACD are so fortunate to be able to spend our days with really great kids and fantastic parents. Please see the link for information from NACD mom, Roxane Sarrazit, below. The NACD Foundation will use these funds to help provide scholarships to exceptional families who are not abdicating their responsibilities for their children or waiting for some government agency or school, but who are just taking care of business.

Roxane–You’re the best!

To see the full story and make donations, please visit:

For more about the NACD Foundation, visit:

To read Mila and Roxane’s original testimonial, read the article here: