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What 'Independence Day' Means for My Daughter With Down Syndrome

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Traffic was heavy on the interstate. The fact that I had not left before the 5 o’clock rush to nowhere put me at odds with the inevitable. The hours would be long. The miles would be incessant. The music would be on repeat. Nevertheless, my SUV is loaded with a week’s worth of everything as I trek toward the acres of homestead that lie in wait for me and the precious cargo: flour, eggs, sugar, cream cheese, butter, a fluted pan passed down a few generations and a little girl riding behind me laughing at Scooby Doo. It is the Fourth of July week and I am the baker.

In a few days, there will be as many sweets as there is smoke. My little one has requested cupcakes and icing. It seems that this request is a staple in our household. I use measuring, pouring and mixing as extended occupational therapy for my daughter with Down syndrome. The fact that she likes a sweet treat helps reinforce those life skills that she will need later in life. At current, she knows which mixer and utensil to use and, depending on which ingredients are on the counter, which treat is being made. She is 8 years old. She’s going to be able to bake her own Sweet Sixteen cake in a few years, or perhaps she will choose the beloved cupcakes. Either way, the choice will be hers and she’ll be ready.

Little girl with Down syndrome holding mixer

As I prepared for the next day’s ensuing bake-a-thon, I could not help but to take pause and think about the Fourth of July. Independence Day. The day our country exacted the final separation from those we had previously been a part of. A day marked with celebration, family gatherings, plenty of food and fireworks, and a sense of accomplishment to be felt for those who call these United States of America our home. I wondered about my daughter and her future. What would an independence day look like for her?

Today it was making her bed. We work hard to establish a routine, and today she was so proud that she called me to the room with a quick, “MiMi… look!” She had straightened the covers and ever so evenly placed her pillow on the bed. The decorative pillows were arranged in an order unbeknownst to anyone but her, but they were neat and she was beaming. So was I.

The evening news was populated with stories of our country at odds on the eve of a day we should celebrate unity, and I continued to think of what independence would mean for her. Will she own a home? Will she get the job she wants and not what a coach thinks is acceptable for her? Will she make a livable wage for her talents and not the standard sub-minimum wage many laws allow for in this country? Will this standard ever be abolished before the time comes that she should begin to build a career? Will she live in a world that accepts her as an equal and not the sum total of her disability?

These thoughts race through my mind as the parent of a child with disabilities. We fight daily for things many take for granted. In each instance, those minor miracles add to monumental feats of glory and inch us one step further toward independence for our loved ones. Whatever it will mean for her: graduation, college, a car, a career, a relationship, marriage — it means even more for me. The tireless motherly effort coupled with all the sentences beginning with “why do you” and “I don’t think I could” interspersed with stares and glares would mean that I ran the race set before me with gusto and though we may not finish first, the end goal still yields the gilded prize. We are always striving for next. We compete with no one but the day at hand and what it will bring. Each goal lends itself to a new challenge and another opportunity to start fresh. We never stop learning. We never stop trying. We simply never stop.

This is our independence. It is found in our journey. Though it may not look like what tradition dictates that it should, it does not matter. Traditions are to be made and we break a barrier each time she advocates for herself. I watch her work a room with reckless abandon, ever vigilant, and leaving no hug undiscovered in her wake. In these instances, I grieve the future a bit less and embrace the present a bit more.

I hear little feet approach the kitchen and soon the treat connoisseur was purveying the countertop contents. She found a box of powdered sugar and asked, “For icing?” I shook my head yes. One megawatt grin gave me all the approval I needed. She would be just fine. This is her independence. This is our independence day. And these will be her cupcakes. There is always room for a celebration.

Originally published: July 5, 2018
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