A GRACE FILLED JOURNEY • The Four Letters I Hate The Most

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INAD. I never thought I could hate such four little letters until we sat at Children’s Hospital as doctors and geneticists told us the results of extensive genetic testing. Our daughter had INAD.

Those four little letters stood for infantile neuroaxonal dystrophy, or INAD for short.

We sat in that room and listened as they told us about this terminal illness and all the things it would take away from our beautiful Grace.

Initially, we were heartbroken for all our hopes and dreams for Grace. She would never take a dance class or ace her math test. She would never walk across the stage at her high school graduation, never get married, never have children. She would never even get to grow up. And we were devastated.

But as the weeks and months went on, we fell into a routine of care for Grace. We continued to pursue physical and speech therapy as a way to keep Grace’s skills for as long as possible. We still believe that physical therapy is one of the reasons Grace stayed as healthy as she did for so long.

As time went on, INAD continued to steal more things from our beautiful girl. It stole her ability to walk with assistance, stand and eventually even sit on her own. It stole the few words that she could say, like mama, dada and puppy. And last of all, it stole her beautiful smile.

Grace’s smile was infectious and she had a belly laugh that could soften even the hardest of hearts. And for me, that was one of the hardest things that INAD stole from my beautiful girl.

Until this year. When it stole her life.

We knew it was coming. We had known for almost seven years. INAD is a terminal illness with no treatments, no cure. I can remember sitting in that room at Children’s Hospital, and one of my last questions to her doctors was “so there’s no hope?” And geneticist Dr. Beth Kozel kindly patted my leg and said “you hope until there’s a reason not to.”

So, that’s what we did. We held onto hope.

And of all the things INAD took away from Grace and from our family, there were also so many things that it couldn’t take away.

In some ways, knowing Grace had INAD was a gift. We knew our time with her would be short, so we didn’t miss out on any chances to make memories with her. If there was something we wanted her to experience, we didn’t wait. She had two trips to Walt Disney World to meet all her favorite characters. We had an amazing Make A Wish trip to Hawaii, which is still one of our best memories on our journey.

There were sporting events all over where Grace was the guest of honor. Although she would never be able to be on a team, Grace was the Honorary MVP of the Montgomery County Volleyball Tournament every year. She got to dunk a basketball with Hiltopper great Dylan Miller. And she and her daddy threw out countless first pitches at baseball and softball games.

She was even the guest of honor at a minor league baseball game where her daddy threw out a first pitch to now Major League pitcher Keynan Middleton. He still follows our journey.

We read books together, sang songs, and played with her for as long as she was able. And when she wasn’t able to play anymore, we snuggled her every chance we got so she would always know how much we loved her.

In the end, INAD stole one of the most important parts of our family, but it will never steal our joy, our happiness or our Grace. She taught us the value of living in every moment, enjoying every smile and always finding a reason to make someone happy.

INAD may have taken our daughter from us, but it will never take our Grace.

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