My 321 Why: Down syndrome Awareness Month

For the month of October, I am setting out to run 321 miles.  That’s three-hundred-and-twenty-one total running miles.

Why?

Because of Kate.

Kate is my daughter.  She is five years old, the youngest of four children, and was diagnosed at birth with Down syndrome.  Though she is not the first of our four children to introduce me to parenting a child with a disability (we have a son with Autism) she is my “why”.
For every milestone, a typical baby achieves it takes Kate 3.21 (or so I say) times longer to achieve the same milestone.  She pushes herself in her own way, at her own pace, just to keep stride with peers her age.  Her muscles flex much more due to low muscle tone, so grasping scissors or using her fingers to count from one to five requires some extra stabilization (usually managed by her picking her fingers up one by one with her other hand).  It takes a little bit of extra for her to do the same things that you and I take advantage of each day.  But – she can still do it in her own way.

What most don’t know about Kate is that aside from her diagnosis we see her for who she is.  While some may just see her diagnosis, we know there is a person behind it.  To us, it’s just a label ascribed to her by doctors that don’t get to see her in a natural environment.  A person with the same spirit, strength, and ambition as any one of our other kids.  She has the same desire to want to make friends and feel included among peers her same age, as well as the same desires to be heard, listened to, and have a conversation with you.
Except for her, it’s hard.  She does not talk she is non-verbal, however, she is as expressive as can be and will take your hand to help you to understand.  She will guide you if you let her help you to understand what she is trying to say or do.  If you don’t – you’ll never see behind that curtain in which she is labeled.  Her humanness is greater than a label.  She has the patience to give you grace so you can learn more about her and what she can do but she needs you to do it with a bit more love, a bit more dignity.

Sure, I get it, I was scared too.  I knew little about Down syndrome except what came from a science class in college.  I did not grow up or know anyone with Down syndrome.  I just knew it as a picture of 47 chromosomes displayed in a textbook.  Yet every day, for the last five years, she has shown us, exactly what that extra chromosome can do, what that textbook fails to tell you in science class.  Our feels its hugs, tender touches, and desire to just be loved.  We see its ability to be heard and do as much as we will allow her to do.  Let me say that again, as much as we will allow her to do.

As a society, we need to get comfortable talking about our differences, about disabilities, and supporting each other in ways that go beyond our own norms, comfort zones, and assumptions.  When we open up our perspectives to new ideas and lay witness to things that go beyond what a textbook says a diagnosis will or will not do in life, we can learn to realize most of those books are wrong.  Those books are talking about one person with a diagnosis, not realizing one in every 600 or so births, or over 300,000 people in the United States have Down syndrome. Now I don’t know about you but as a person who hates to eat chocolate, I could hear the outrage and snuffs being made if a textbook stated all women hate to eat chocolate.

So you see, these 321 miles are to create awareness.  I am reaching new heights in my own realm that are not nearly equivalent to the feats that Kate overcomes each day.  These miles are being completed in the hope that I can open up the eyes and change the perspective of someone -one person- in understanding, we need to see each person for who they are, not by their diagnosis but by their name – for who they are.  We need to see each person by their smile, the twinkle in their eye, and realize it takes everyone to see the goodness in each of us.  We need to support and help each other in order to allow for people like Kate to have the same equity and acceptance to so many of those “social luxuries” that we take for granted.

So, I hope you’ll follow along, help us to celebrate these differences not out of empathy but truly out of the desire to want to learn more about Down syndrome.  Then, maybe the next time you meet someone or see someone with Down syndrome in the store, at a school, or in your community, you can smile and say hello, knowing they may be different, but they are not too different from you and I.