What World Down Syndrome Day Means to Me

Creativeapproach104/ March 21, 2023/ Special Needs Parenting

Me and Azariah

As a parent of a 12-year-old daughter with Down syndrome and autism, life has not been easy. Azariah was delayed in walking until she was 3, and even then, her steps were uncertain and unsteady. She has limited verbal communication and has had several health scares related to her heart and kidneys. It has been a challenging journey, one that has required endless hours of occupational, physical, and speech therapy since she was only six months old.

There have been many sleepless nights spent stressing over her delays, worrying about her health, and just fearing for her future. I am not one to sugarcoat things and like to be real with others. So, being honest, I have to admit that the stress of being a special needs parent, especially to a child with significant support needs, there are times when my marriage struggles, as we both get tired and burnt out with the non-stop advocacy, planning, and teaching. But despite all the challenges, I am grateful for Azariah. She has taught me to look closer at things and see the fine details, to slow down, and take time to laugh, play, and cuddle. She has shown me that there is more than one way to get from A to Z, and that differences are what make us great.

Despite the challenges, I am constantly amazed by my daughter’s resilience and strength. She has an infectious laugh and an unwavering spirit that lights up the room. I am grateful for the many people who have supported us along the way, from doctors to therapists, friends, and family members who have offered their love and support.

Statistics show that Down syndrome is the most common chromosomal condition, occurring in about 1 in every 700 babies born in the United States. While there are many challenges associated with this condition, there are also many inspiring stories of people with Down syndrome who have made a difference in the world.

One such example is Karen Gaffney, a motivational speaker, and swimmer who has Down syndrome. She has completed several long-distance swims, including swimming the English Channel, and has delivered speeches to audiences around the world about her experiences and the importance of inclusion for people with disabilities.

Another inspiring figure is Chris Nikic, who made history as the first person with Down syndrome to complete a full Ironman triathlon. His accomplishment has inspired many, and he is now working to raise awareness about the potential of people with Down syndrome and other disabilities.

These stories serve as a reminder that people with Down syndrome are more than just their condition. They are individuals with unique talents, passions, and abilities who have the potential to achieve great things with the right support and opportunities. As a parent, I am grateful for my daughter’s presence in my life. She has taught me so much about love, patience, and perseverance. While the journey has not been easy, I am confident that with the right support and care, she will continue to thrive and make a positive impact on the world around her.