My bag is nearly packed, I bought a huge umbrella because it’s supposed to be raining and East Coast rain requires an umbrella (unlike Seattle rain, which often doesn’t), I’ve cleaned the bottom of my refrigerator that I never noticed was disgusting until last night, and I’m baking banana bread so Jay and Zack won’t starve while I’m gone for three days.

I’m nearly ready to attend my first advocacy day in our nation’s capital! I fly out tonight at midnight, get trained tomorrow afternoon along with 150 other parents and advocates from across the U.S., and meet with our representatives on Capitol Hill Wednesday.

My “speech” for the Hill

This is what I’m sharing with the representatives I am privileged to meet (a sheet of family photos with my “story” on the back):

Shortly after our 3-year-old, Zack, was diagnosed with fragile X syndrome, we were at a family gathering where a wealthy, well-educated woman made a beeline to talk with me. I was flattered that this acquaintance appeared to take such an interest in my life. The conversation quickly zeroed in on Zack and his disability, however, and she asked if I was planning on having more children. Having gone through early menopause, I explained that it was no longer an option.

“Good,” she said. “Because people with disabilities are cute when they’re children, but they grow up and then they’re not.”

That was the first time I was directly assaulted with the false perceptions about those affected with disability that many people hold. Horrified, I was speechless and the conversation soon ended.

How do we define the worth of a life? The adorable little boy of mine who was running around the family gathering that day has grown into a handsome, amiable, funny, loving adult. At 20, my son still has the mental ability of a preschooler in many ways; but in other ways he shows more insight and ability than many. He has his priorities straight—people and relationships being at the top of his list.

My son makes the lives of people around him better every single day. How do I know this? Because they tell me about it. He walks into school and greets every teacher and administrator, even taking special detours to seek out those working in the office so he can raise his hand, wave, and flash an enormous grin as he says “Hi there!”

During one year of high school, a student volunteer helped Zack participate in a physical education class. At the end of the semester, she told me that Zack helped her make it through the grief and depression she struggled with following her grandfather’s death. Seeing my son daily became the highlight of her year.

My husband and I hear stories like this all the time. I have to admit that going into Zack’s special education program at school always brightens my day. There aren’t many places in the world where an adult is greeted so warmly by a group of teenagers. No wonder Zack’s bus driver, a retired man in his 60s, claims that driving a bus for special education kids is the best job he’s ever had.

Zack will never be a rocket scientist. He will never play an instrument brilliantly or teach high school students or build houses. The best we can hope for is that he will be able to work at a simple job in a safe environment where he experiences the worth that giving to others brings him on a consistent basis. If we can find a place that values his skills enough to enable him to do this, I can guarantee the love and joy he brings will make him a highly valuable employee.

The value of Zack and others with fragile X syndrome is the impact they have on those around them. Knowing him, and knowing his peers, makes me a better person. Being his mother has taught me how to love, and shown me what unconditional love is.

Is there anything more valuable than learning that?

Zack will never live on his own. When we are no longer able to care for him, he will live in a group home with people we hope and pray will take good care of him. It is my greatest dread that my son will be treated poorly or live in substandard conditions. My highest aspiration for him is that he will always know he is loved and will always be happy.

Isn’t that what all parents want for their children? All the rest—college degrees, high-paying jobs, a nice place to live, healthy relationships—are just a means to that end.

Our family does not give us support in our care of Zack, but we have built a community for him though our friends and church. Without the government financial support that provides Respite and Medical Personal Care for our son, meeting his needs would cripple us financially, emotionally, and physically. As much as we love him, we cannot do it on our own.

Please continue to support research to find treatment and cures for fragile X syndrome and fragile X-associated tremor/ataxia syndrome; and Medicaid programs for families who live with and love those in need of continuous care.

Thank you!  Jay, Elizabeth, Zack, Taylor and Cassidy Griffin

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