March 21st marks a significant day for families around the world. We have celebrated this special day for the past ten years, since the birth of our firstborn child. This annual celebration is known as World Down Syndrome Awareness Day.
Families celebrate their loved ones on March 21st by bringing awareness to the diagnosis that has changed their lives for the better. This day makes room for the opportunity to bring awareness in schools and communities. Family and friends come together to express the joy and gift of their special child. This day of awareness seems to be growing each year as social media has allowed parents to connect and share their beautiful stories of life change through their child.
Over the years, we have done our fair share of fundraisers, advocacy, and telling others about Down syndrome. Down syndrome is the most common genetic abnormality that can occur. Down syndrome includes three variations: Mosaic, Translocation, and Trisomy 21. Trisomy 21 is the most common, which describes those who have a third copy of the 21st chromosome. Rather than having the typical 46 chromosomes, this diagnosis marks someone with a distinct 47.
The challenges and wonders of Down syndrome
This one additional chromosome affects an individual in various ways to various degrees. Some of the common features include: almond shaped eyes, flatter face structure, shorter stature, low muscle tone, low-set ears, and a single crease across the palm of the hand (rather than the typical double crease). The internal effects of this diagnosis can impact the heart, blood, digestive system, thyroid, and more. Developmental delays and cognitive impairment make daily routines and tasks more difficult for our loved ones with Down syndrome.
Although there are many challenges associated with this diagnosis, there are also wonderful aspects as well. Our loved ones with Down syndrome are often determined, loving toward others, and quick to make someone smile. They have a beautiful perspective on life, not stressing about the small things, but living in the moment with a joyful spirit. Though they face obstacles, they often love to have fun and bring a party wherever they go.
In our hopes to bring awareness of what makes someone with Down syndrome unique, we also love to help others see how they are more alike than different. Our daughter’s love for music, dancing, swimming, shopping, and reading are just a few things that make her more alike than different from her typical peers.
Down syndrome is not the only diagnosis recognized throughout the year. Other days bring awareness of various diagnoses including World Autism Awareness Day (April 2), ADHD Awareness Month (October), Children’s Mental Health Awareness Day (May 11th) and World Cancer Day (February 4th). The calendar is filled with opportunities to educate others and advocate for our loved ones. Perhaps you celebrate your child on a particular day designated to bring awareness. If so, I am honored to advocate with you for our children. It is important work and is making a difference for future generations.
The testimony within the diagnosis
However, with so much effort geared toward bringing awareness to our child’s diagnosis, I want to invite you to consider shifting the focus. Rather than drawing attention to the needs, the challenges, the obstacles of a diagnosis, what if we took more time to share our story—our testimony—of something with even greater value when it comes to raising a child with special needs? What if we helped others understand the destiny within the diagnosis?
On the day we received a call from the doctors that our child was diagnosed with a life-altering genetic abnormality, we were also receiving a heavenly assignment. A purpose and plan was released into our family, our marriage, and our community. The day we discovered our child’s diagnosis was the day God’s destiny was set into motion. Our lives would never be the same.
Regardless of the details within your child’s diagnosis, more importantly, there is a destiny. God marked your family for something specific and something beautiful. God is changing hearts through your child. Your child’s teacher, doctor, therapist, your neighbor, your church family, your grocery store clerk—they are getting glimpses into the life of your child. Every time you cross paths with someone, have an interaction, or they are in your life for any period of time, you are living out a testimony of what God can do when life gives you something unexpected. Your testimony can become someone’s spark of hope. Your victory can give someone courage to face the unknown. God wants to use your child for more than bringing awareness; he wants to bring his light to those who live in darkness.
God is showing his glory, love, and power through the testimony of your family. What may feel like ordinary day-to-day moments, God is using them for an extraordinary purpose in his kingdom here on earth. He uses our kids’ special needs to do a special work in the hearts of those around us. Let’s choose to not only bring awareness of our child’s diagnosis, but share our testimony of their destiny (Psalm 22:22).
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