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Our Daughter's Short Life Taught Us So Much About Joy

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Dear Down Syndrome,

You snuck into our lives quietly alongside several scary diagnoses our baby girl received. We knew nothing about you except that surgery could not “fix” you. For this reason, we feared you the most.

We began to research what you would mean for our daughter’s life and became even more frightened. The research said many things would be difficult for her and she may not even achieve many milestones like walking and talking. We feared our daughter would not be loved or accepted.

Down Syndrome, you caused us to grieve the child we had dreamed of having. She was meant to be perfect with brunette pigtails in a twirly dress dancing in a field of flowers. Her smile would be radiant and her laugh infectious. You, Down Syndrome, stole that dream from us.

We were angry for a little while, but not too long. Soon we learned to cherish things we could not have dreamed of that you brought as a gift. The first was her little feet and separated toes. Oh, how we loved to paint her little toenails! The second was her low muscle tone in those early days of a long NICU stay and how it made her little body snuggle into the crook of our arms like a newborn for a little longer than her twin’s did. Third came her tolerance for pain. It sounds strange to say this one, but she needed it to endure all of the surgeries that came with the other diagnoses.

Do you remember the radiant smile and infectious laugh we dreamed she would have? It was better than we had imagined. Pure love flowed from her in a way that made thousands of strangers fall in love with her.

Down Syndrome, soon you became our least-feared diagnosis as our sweet girl battled illnesses and infections brought on by the others. We began to embrace you and saw a new dream for our child that was so similar to the first. Only now, that dream was for her happiness, not ours.

We learned that hitting a milestone late or not at all did not steal her joy. So why should we allow it to steal ours? We watched as she smiled through the trials and loved through the pain. Soon, we learned to do the same. We discovered that happiness can be found in every moment, even the most painful ones. 

On February 18th, another of the diagnoses took our sweet girl home to Heaven. We miss her terribly.

We miss everything about her, including you, Down Syndrome. Thank you for the gifts we received through your presence in our daughter’s life.

You are no longer something that we fear and hope to help others embrace you as well.

This post originally appeared on WeWiggins.

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Originally published: March 25, 2015
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