My Boys and Fragile X

By Charlotte Spahr

“The results of the genetic analysis confirm the diagnosis of Fragile X syndrome,” said the pediatrician. Years later, those words still bring me to tears.

We are blessed with two sons, Nathan, 29, and Jason, 24, who both have Fragile X syndrome. For those of you who have never heard of Fragile X syndrome, it is the most common cause of inherited intellectual disability and the most common known genetic cause of autism.

Our sons have many challenges. Nathan is higher-functioning in reading, writing, and computer skills but more affected socially. Jason is very social, but only reads sight words and has limited writing.

Both boys love sports, especially the Angels. Nathan is limited to watching games on TV, as he cannot tolerate crowds and noise. Jason is usually overwhelmed too, but when he’s at an Angels game, he is focused on the game and doesn’t have the usual meltdowns that are so frequent for children living with Fragile X syndrome.

Jason has been the manager of his high school softball team, the Loara Saxons, for almost 10 years, thanks to “The Coach” Todd Rolph, whom Jason idolizes!

Jason’s first Angels game was with his high school classmates and they sat in the Mayor’s Suite! At another game, he got a personal visit from the Striker Force Girls, thanks to a friend, Karl, who works at Angel Stadium.

After every game, Jason goes to watch the Angels Live broadcast with Victor Rojas and Tim Salmon. He loves watching the announcers and stays until they finish, then he asks them for their autographs or to take a picture.

Jason achieved his ultimate dream at a game earlier this year when Victor Rojas asked him to come up on stage. Jason got to stand behind the broadcast desk and hold the microphone, he also received an autographed baseball, and got to chat with them. It’s a night he’ll always remember because it made him feel so special!

Since both of my sons relate everything to sports, I truly believe “it’s not about whether you win or lose, it’s how you play the game” of life!

After a high school game where there was some conflict, Jason came up with the word “classmanship” (a combination of class and sportsmanship) to describe how his team and coach handled the conflict. He explained the other team had no classmanship compared to his own team.

For me, I have chosen to live my life with classmanship and to enjoy it to the fullest!

My sons are my life and I wouldn’t change that for the world! God gave me Nathan and Jason and God doesn’t make mistakes. I get asked about the future and my answer is: I take one day at a time. It breaks my heart to know that when the time comes for the boys to live in a group home, they will be taken care of, but no one will love them like their dad and me.

That being said, we look for the joy in life, not measuring it in highs and lows, months and years, but in good moments. The joy of a song that calms Nathan, the pleasure Nathan gets eating Goldfish crackers and drinking peach nectar, Jason “managing” a softball game, his friendship with his coach — those are the things that matter.

Jason’s pure delight when he is acknowledged by an Angels player or sports broadcaster, and the many friendships in life that we would not have formed if not for Fragile X syndrome, make all the difference in our lives.

Life with two special needs sons is tough, busy, exhausting, and tragic. I will never see my sons graduate from college, drive a car, or dance with them at their weddings. The most heartbreaking thought for me is that I will never have the blessing of grandchildren.

The rollercoaster of emotions never stops, but I have learned a lot about myself, the people in my life, and life with Fragile X syndrome. People tell me I am a strong person, but what other choice do I have? Life is made up of choices — I have the choice, every day, to be strong, to enjoy life. And that is the choice I make, every day. Not just for myself, but for my family.