DAILY LIVING & MOBILITY

Halloween Fun: Celebrating Down Syndrome

Down Syndrome

Joey & Family

Nothing down about Halloween

When Johanna (Joey) was born prematurely by emergency C-section on October 19, 2012, her having Down Syndrome was a surprise to us. Our family spent the next couple of weeks taking Joey to the needed medical exams and tests, learning about Down syndrome, arranging her baptism, and taking care of a newborn. The busy days were easy for me. It was the nights that were filled with sadness and mourning.    It seemed like the whole world was asleep while my husband and I were up with this baby so small that she drowned in all of her baby clothes.

My husband and I didn’t say much when we were up late nights. He would be feeding Joey and I would be pumping as much breastmilk as I could, which wasn’t much. We were relatively quiet, maybe because we were sleep deprived or because we didn’t want to wake up Joey. But in retrospect, I think because the feelings of grief, depression, and lost was so deafening in the quiet of the night.   

After a couple of weeks, I realized that I would soon be Joey’s first holiday of her life, Halloween. We put her in and small felt trick-or-treat pumpkin bag as her first costume. With her small size and jaundice, we really couldn’t take her anywhere to celebrate Halloween. So we just took pictures and had fun dressing her up. That was the first family picture have of us genuinely smiling since her diagnosis of Down syndrome.   

It was the first moment that I felt life would be ok and had a sense of normalcy. A feeling of acceptance of my new “normal.”  I also had a feeling of guilt. I have been selfishly engrossed with my disappointment of having a baby with Down syndrome and the fear of what it would mean to my life. I never gave Joey the celebration and welcome into this world she deserved. Instead of giving her my hopes and dreams for her, I have only given her my tears.   

From that moment on, I decided that we will celebrate Joey’s life. We would celebrate the miracle we have been given. Starting with her first Halloween. Five years later, Joey had a little sister who loves Halloween as much as Joey does. We don’t only celebrate Halloween. We celebrate every moment of life by helping other families with children with Down syndrome, creating awareness, creating a foundation, and being advocates for special needs. We celebrate every day we have with Joey because every day is better with Joey.

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