WILLOW
PHOTO BY RANDY BACON
WILLOW
“In The Unexpected”
(Story written by Sarah, Willow's mother)
When Willow was born, she surprised us all with red hair, piercing blue eyes, and an extra chromosome. At that time, I didn’t know much about Down syndrome. That extra chromosome is just a small part of who Willow is. But that day—the day she was born—I couldn’t see past it. I could scarcely take in those sweet wisps of red hair on top of her perfectly round head. I barely noticed those exquisite, dainty hands and feet, or those blue eyes that looked right into mine from the very beginning; like she knew a secret that I did not. The day of my daughter’s birth and some weeks following, I grieved. I was scared of what her future held, what the future held for her siblings, and selfishly, my own. I was not immune to the stigma the world carries for those that are different.
Willow quickly taught me to not set my own limitations for her. She started communicating with us via sign language at five months old. She continues to amaze us daily with her memorization, academic, and people skills. (Nobody works a room better than Willow!) She is now a vivacious six year old who loves books, red popsicles, kindergarten, and making people laugh. Her presence has taught our family so much, and she is a bright light to all that know her.
Willow continues to enrich the lives of each of her five siblings. Willow shares sign language with my oldest daughter, Kristie, who is deaf. Willow immediately formed a life-long bond with my other adult daughter, Winter, who is one of Willow’s biggest champions. Willow also shares an especially close relationship with her only brother, Noah- they are a constant source of entertainment for each other. Then there is Willow’s love of music which connects her to our other musically-gifted child, Zoey. Finally, there is Willow’s constant playmate and partner in crime, Ruby. Although Ruby is two years younger, Willow frequently seeks out her sister to join in one of her imaginative games. I love seeing the joy that Willow brings to my life spill over into the lives of her brother and sisters.
Sometimes though, this road is hard. Willow has endured three open heart surgeries in her young life. She likely has more heart surgeries ahead of her. That extra chromosome makes some things difficult for her like speech, running and jumping, and learning at the same pace as her peers. On the flip side—that same chromosome makes some things easier for her than the rest of us, like breaking down barriers, and her ability to radiate love and authenticity. Her emotional intelligence is astounding. She is the strongest, bravest person I know and has taught me to seize every day, that life is so very precious, and to cherish every single moment with those we love.
Getting to be Willow’s mom is like getting to see beautiful colors that I couldn’t see before. I’m so grateful. Now, it is hard to remember why I was so sad the day of her birth. I remind myself to extend myself grace. Sometimes, the days following a diagnosis can feel uncertain. After Willow was born, I worried if she would be able to learn all I had to teach her. Little did I know that more often than not, she’d be teaching me—like the fact that there is hope, joy, beauty and light in the unexpected.