The Hidden Gift Wrapped in a Fatal Disease




It wasn’t long after 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 the doctors to believe that whatever it was the kids had, was not good.

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.”

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 in their eyes, I could feel their purity and vulnerability. I placed each little meaningful moment in a beautifully wrapped gift in my memory bank.

I began to see these gifts every day.

I felt like a warrior mom! BAM! We had another day! And another pile of beautifully wrapped gifts placed gently 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, and loving, and making happy memories.

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

This holiday season, use the gift! 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 very blessed. Our babies grew into their twenties 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 so filled with wisdom, yet still have the trusting vulnerability they 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.


3 thoughts on “The Hidden Gift Wrapped in a Fatal Disease

  1. Lori I have been keeping up to speed on u n ur childrens hectic life for the past year. I’m 36 years old, have no children of my own,am single and have no one in my life with special needs but in my eyes u have it all! No matter what life throws at u,u keep smiling. Kudos to u and yours. Love those kids of yours and the fact that they inherited that fabulous smile. Keep on keeping on wonderful mama:-)

  2. Thank you for putting life…and death…into perspective. And thank you for adding this incredible post to’s Tuesday link up.

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