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The Hidden Gift Wrapped in a Fatal Disease

It wasn’t long after my children, MaryEllen and Kevin, were born that we got the devastating news. Their condition, although unknown, was probably going to be life limiting. Their lack of development, coupled with seizures and failure to thrive, led doctors to believe that whatever the kids had, it wasn’t good.

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My heart was broken. How could this happen to my beautiful babies? How could I continue to be a good mom when all I could think about was my children dying? This couldn’t be happening.

Every day brought more bad news, and every doctor visit brought another horrible reality. Our sweet babies had a combination of defects that all pointed towards deterioration and death.

“Take them home and love them,” we were told.

Those words struck me like lightning. Our storm was a big one. I was breathless and powerless.

Then, I changed.

It wasn’t overnight, but slowly I realized what these words really meant.

My thoughts were powerful.

“Oh yeah, death? You will not make me crumble and fall to my knees! I will love my kids. And then I will love them some more.”

My perspective about life changed when I was faced with less time with my babies. Suddenly, little things took on meaning. I loved the feeling of Kevin’s cheek against mine. His skin was so marshmallowy soft. MaryEllen’s hands were so dainty and tiny. I felt like I was her protector when they were snuggled in mine. Looking into their eyes, I could feel their purity and vulnerability. I placed each little meaningful moment in a beautifully wrapped gift in my memory bank.

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I began to see these gifts every day.

I felt like a warrior mom — and bam! — we had another day. And I gently placed another pile of beautifully wrapped gifts where I would always have them.

We were staring death in the face, and we were winning. Winning because each day we were given, we conquered with love and appreciation. We weren’t curled up in a ball waiting for the terrible day. We were smiling, loving and making happy memories.

So many people don’t get that opportunity. They lose a loved one suddenly without warning and don’t get to experience the gift of “today” like we do. Their memory banks weren’t tended to and their gifts were not wrapped gently and lovingly. And consciously.

Use the gift this holiday season. Every day, slow down a little and look, hear and feel like you have never done before. Tell someone you love them and mean it. Feel someone’s hand in yours. Remember the feeling of that hug. The smells. The look in their eyes. Wrap it all up and place it delicately, like a treasured piece of china, on your shelf of memories. Pay attention to the small things and consciously remember every detail.

We have been blessed. Our babies grew into their 20s and are still blessing us with their small and astounding gifts every day. Kevin’s cheeks still feel marshmallowy soft and MaryEllen’s dainty and fragile hands have given me so much strength. Their eyes are filled with wisdom, yet still have the trusting vulnerability they’ve always had.

We are not meant to skip through our lives, barely noticing the things that matter. Every day we have means we have one less. After all, we all have a fatal disease. It’s called life.

Think about it.

Follow this journey on The Heartful Mom.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.