March 21 marks World Down Syndrome Day (WDSD), and as a mother of two little ones, I often lose track of the days. However, I know this important day is approaching because, about a week ago, my social media feed began to fill with invitations to “rock my socks” and “see the ability.”
Being part of the Down syndrome (DS) community brings me joy, and I believe that individuals with DS deserve to be celebrated every single day. However, I did contemplate skipping this year’s celebration. Honestly, there are moments when I wish I could take a break from the realities of DS. For instance, there was an instance when I entered my typical daughter’s room only to find her unzipping the footie pajamas of my daughter with DS. Grace, who lacks the strength and dexterity to manage this skill, was being helped by her younger sister, Abigail, who had mastered it long ago. While it was a cute scene, my mind drifted to thoughts of the future—what if, in forty or fifty years, Grace were to face Alzheimer’s, a risk heightened by her extra chromosome? I hope that Abigail will be there to show her the same tenderness she does now.
There are other moments too, like when Grace plays with her dolls and gets called “such a good mommy.” My heart aches a bit at this; while it’s a beautiful sentiment, the reality is that motherhood may not be within her reach. I often find myself contemplating family vacations but feel a pang of guilt over spending money that could go toward Grace’s future needs.
These concerns are typical for any parent, right? We’ve all seen loved ones face devastating illnesses, dream unfulfilled, and deal with financial struggles. However, parents of children with DS often face these realities much earlier. From the moment Grace was born, we were aware of the risks linked to her extra chromosome, which gives our worries a context that many parents don’t encounter until later. Like chronic discomfort or that persistent teenage boyfriend, DS is a constant presence in our lives.
Despite the challenges it brings, I have grown fond of the condition. When I see babies in the store, I often feel let down when they don’t exhibit any DS traits. Spotting another individual with DS creates an instant connection with families who share similar joys and challenges. While DS is part of Grace, it does not define her. She is vibrant, enthusiastic, loving, and persistent, and I witness her impact on others daily.
What once kept me up at night—worrying that Grace would be seen through the lens of her DS—is now a source of empowerment for her. She leaves people smiling, eager for high-fives, and hopefully changing how they view DS. In a world where some countries are promoting prenatal termination of DS pregnancies, I am proud that my daughter can challenge outdated notions simply by being herself. My life is enriched daily by Down syndrome, but this isn’t the sole reason I’m celebrating WDSD this year.
Recently, I watched Grace play with blocks that were gifted to Abigail. While Abigail assembled an impressive structure quickly, Grace struggled with her fine motor skills but persisted with a determination that left me in awe. When I reached to help, Grace firmly reminded me with a “Help, no!” She eventually succeeded in placing her block, and the joy on her face was infectious; she jumped up to give me a double high-five and a hug, repeating the ritual with each small victory.
Couldn’t we all use a little more celebration? Every block, every lesson learned through mistakes, every step forward deserves recognition. Imagine the happiness we could cultivate if we embraced these small moments with gratitude. Grace teaches me to navigate life enriched by challenges, celebrating perseverance and personal triumphs. She dances with abandon, laughs at her own jokes, and constructs block towers that defy conventional expectations. Grace finds joy in her authentic self, unencumbered by what others may think. Adversity is woven into her being, yet she presses on, achieving success and celebrating the little victories we often overlook.
So, this WDSD, let’s honor the spirit of Grace and countless others with Down syndrome by cherishing the small strides, embracing our differences, spreading joy, showering loved ones with affection, and crafting our unique stories without concern for outside opinions.
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In summary, World Down Syndrome Day is an opportunity to celebrate the lives of individuals with DS and to reflect on the lessons they teach us about perseverance and joy. Let’s embrace the small victories and cherish the unique stories we all have to share.
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