WILingness

Pockets of life experienced with my son Wil, who has Down syndrome.

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Last night the word “retard” was said on a tv show Elizabeth and I were watching. We both reflexively flinched. “Why did they even need to say that?” Elizabeth said. “It wasn’t needed at all.” Word, sister! Can you imagine proving the value of your child? The mere fact your child was born with one more chromosome leaves you in a position to prove his worth. To tell the world he is not “less than.” He is not the subject of a joke on tv. Because that is how he is seen from the second he is born. In fact, if you have prenatal testing, many will share words of sympathy with you even before your child is born. Can you imagine? Sympathy for the miracle of a new birth? I wonder, sometimes, why should I have to prove his value? Why do I have to tell people I’m not sorry? Isn’t the fact that he is a human being born into this life miracle enough? But it’s not enough. So when occurrences like last night happen, I am reminded not to get lax. That even though my immediate community is supportive, there is much outside work to be done. So I prove. I prove by sharing Wil with you. Wil sings the whole way to school. Every single day. When you and I are complaining that it’s cloudy, or raining, or snowing, or windy, or what’s ahead in our day, Wil is singing. He has bad days too, but he always makes room for singing. And when the sun comes out, no matter how we may be rushing to the next thing, he always stops, tilts his head to the sky and says, “Oh mom, what a glorious day!” I can’t help but stop and realize the same. How much can I expect to prove to you? How much can I expect to prove to the television show writers? How much can I expect to prove to the new moms? And expect to prove to those who utter words of sympathy that we’d really love to hear words of their congratulations? Proving is hard work. That’s why it frustrates me. It stresses me. I feel it falls on closed minds and ears. Rather, I have chosen to share. Sharing is fun. Sharing is grateful. Sharing is personal even across these vast social media waves. Sharing is what Wil does best. Sharing is the miracle, the singing, the glorious in this life. #downsyndromelove 💙

WILingness

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Put a Spin On

September 15, 2019Christie Taylor

I opened the car door, felt the wind hit me and my body instinctively stiffened in defense. I looked over to see Wil stepping out of the car–when he felt the wind he muttered an ahhhh, tilted his face to the sky, opened his arms wide and spun around in circles. I decided to follow his lead.

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