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When I Watched My 6-Year-Old With a Terminal Illness Receive His Diploma

The day I gave birth to my son, Jordan, was so special. It was an uneventful pregnancy and delivery. He was the baby of our family, and he was to make our family complete. A few short hours later, the best day of our life became the worst as we watched our baby being airlifted 100 miles away to undergo emergency open heart surgery. He barely survived.

After his surgery, he began having seizures. An MRI showed alarming results. Part of Jordan’s brain was missing. The part of the brain he had was severely damaged. Nobody knew what it was or what had caused it. It took over a year, trips to geneticists from coast to coast and extensive genetic testing to discover that Jordan had a mutated gene so rare, currently only nine cases have in the world have been confirmed. His brain is outgrowing his skull. Unfortunately, there is no cure. Jordan, my now-6-year-old son, has a terminal disease.

In September 2014, Jordan met a group of high school students when he participated in a program called Principal For A Day. The principal at the school chooses a child undergoing severe medical issues and invites them to his high school to be the principal for one day. It was an amazing experience.

Jordan formed a bond with those students when he was there that day. They invited us to attend the graduation. Then, a few days before the graduation, we got a call from the principal. He told us the graduating class came to him and asked if Jordan could be a part of their ceremony that day. The class of 2015 wanted to include him in their high school graduation ceremony and give him an honorary high school diploma because he may not survive long enough to graduate from high school.

I was shocked! I couldn’t believe their sincerity. I cried on the phone.

Graduation day was very emotional for me as a mommy. I believed all of the mothers in the gymnasium that day were remembering back to the day they gave birth to that child. That moment they placed that child in their arms. That child’s first steps, first day of school, prom, learning to drive and now high school graduation.

When I sat at this graduation imagining what these mothers were thinking about, I must admit I was a little jealous of them. They get to watch their kids go to recitals, homecoming, college… and I get to watch my child die. How am I supposed to do that?

But then I looked at my son walk up on that stage in his cap and gown and receive his honorary diploma. I saw that big grin on his face. Those big brown eyes watching as the entire gymnasium stood to their feet and clapped and cheered for him. At that moment, I realized I was the proudest mommy in the room.

Due to Jordan’s severe brain damage, he really didn’t understand what was going on. I think the only thing he knew was when he was on stage, the whole gymnasium was clapping for him, and he thought that was great. He loves being the center of attention!

Some of the kids from the graduating class have contacted me, and we’re meeting next week for a special day out on the town to say our goodbyes before they head off to college and begin the next chapter of their life. The bond we’ve made with those 40 students will forever remain strong.

We are so thankful to this high school class. Our family knows all too well how short life is, and we cherish each and every day as if it may be the last. Because someday, it will be Jordan’s last. Those 40 graduates made a dream come true for a precious little boy and his family. They are truly an amazing group.

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