Cause for Celebration

As the parent of a child with complex medical needs and disabilities, holidays and family celebrations have at times felt bittersweet.

When your child is unable to truly understand the significance of a holiday or special occasion, customs may not mean so much to them. The festive decorations, lights and traditional foods might not hold any specific meaning for them. However, as parents, we long to create wonder and magic for them; we yearn to experience it all with them.

We decorate.

We gather and sing around the unicorn birthday cake.

We hype up every holiday.

We want to create precious memories for our kids, just as any other parent does.

Year after year, my daughter wouldn’t touch her birthday cake. She experiences feeding difficulties, so my husband and I have always tried to entice her with small bites of her cake, at every birthday party. When she would shake her head “no” or push it away, we always pivoted to giving her tastes of whipped cream or ice cream instead.

This year, as we celebrated her turning 14, she surprised us and achieved the unexpected. She ate nearly an entire cupcake! I fed it to her, bite by bite. A giant smile danced across her face, behind smears of bright pink icing. Watching her in awe, I knew that this birthday had morphed into so much more.

In addition to honoring the beautiful day of her birth, we had a whole new cause to celebrate! An amazing feat took place that day as a HUGE milestone was reached. We reveled in excitement as shefinally delighted in a sweet treat made especially for her, on HER day.

The Christmas season is already brighter this year too.

Our Christmas tree is always decorated by mid-November. Our son loves it, and the sentiment has always brought him joy. It still does today, as a 20-year-old. After years of indifference to it, this year, his little sister is captivated by its presence.

The illuminating lights catch her eye, and she giggles as she repeatedly pulls the same plush Santa Claus ornament from one of the lower branches. She taps to activate the animated Snowman underneath it and she moves her head, bouncing in unison with his merry song. She may not fully understand all the traditions of the holiday, but she’s included in every aspect, and she experiences them in her own way.

When she was little, we longed for her to make connections or show a hint of interest. Today, we’re grateful to witness sparkling glimmers of that happening. It’s pure magic. It’s priceless.

Our celebrations feel so much richer now, and we appreciate every inch forward our girl makes in taking part in them. We’ve always obsessed over the perfect cake, gathered with family, trimmed the tree and wrapped the gifts because all of that is for US, too.

Parents deserve to feel the joy that comes in creating those cherished childhood memories. The twinges of grief that once accompanied our efforts in the past have given way to indescribable happiness. When our kids with disabilities find cheer and amusement in the festivities, right along with us, it’s such an incredible gift. Celebrations become so much more.