One of my granddaughters, Sadie, has Down syndrome. She is one of the greatest joys of my life, and I deeply cherish her. It is as if we have a little Buddha in our family.
Sadie doesn’t live out of her head like we do. She doesn’t strategize, manipulate, worry about the future, or ruminate about the past. She has no guile. She doesn’t analyze her feelings or restrain her expressions of joy and love. She does cry and get angry, and it’s always clear why she’s upset. She is wildly exuberant about the smallest things, and loves to laugh. My daughter Heidi calls Sadie her anti-depressant.
Something that I practice when I go to visit Sadie (and, ideally, would practice in all life situations) is leaving my agenda at the door. I keep making the choice to relax in her presence and attune to her wavelength. I feel and move with her, aligning myself with her rhythms. I surrender (not always, of course!) to the moment, and these are some of the most fulfilling hours of my week. Sadie flows with life. She is spontaneous and fully present with whatever’s in front of her. She doesn’t hold on to grudges or grievances. If one of her siblings takes a toy away, she may get upset, but the feelings move through quickly, and then the incident is completely forgotten. She’s very friendly, always smiling at people and saying “Hi,” and sometimes hugging them, especially other children, whether she knows them or not. If someone is sad she often picks up on it, and moves over to console them in her sweet, gentle ways. When her baby sister fusses, she pats her, makes cooing sounds, and puts the pacifier in her mouth. My eyes fill with tears every time I witness these acts of kindness. Someone told me that folks with Down syndrome have the “love gene.” I’m quite sure they do.
For me, Sadie is a teacher of love, especially with regard to allowing full demonstrations of love and generosity. I’ve become more aware than ever before of how often we “normal” adults hold back our feelings of care and love for each other. We subdue our emotions, we’re appropriate, afraid to be too effusive lest we be deemed weird or strange if we walked around hugging strangers. As for me, I’m letting myself be more weird and strange, and it’s very freeing.
There is, of course, a dark side to Down syndrome. I don’t want to paint a purely rosy picture of a serious disability. Sadie definitely has her difficult days, but she is high-functioning and, so far, doesn’t have to contend with the serious health issues that befall many DS children. Almost one half of all children born with DS have a congenital heart defect and half have problems with hearing and vision. Some have thyroid problems, respiratory conditions, and seizure disorders.
My world has expanded greatly since Sadie entered our lives. Every time that I see a child with DS or any type of disability, my heart opens wide. I never turn away or feel tentative about how to respond. Before Sadie came into my life, I was somewhat awkward when I encountered folks with developmental disabilities. Theirs was a foreign world to me. Now, when I see someone with Down syndrome I feel like running up to them and giving them a big hug. I live in a much bigger world now.
I asked Heidi if she would like to write a paragraph about the gift of Sadie in her life. This is what she wrote: “If I had to describe Sadie in one word it would be “perfect.” But because I am allotted a few more words here, I will expand. Sadie doesn’t look like my other kids, but her beauty exudes from her every pore, which makes her a beauty queen. I call her my koala bear because when she hugs you it’s a whole body hug – arms and legs wrapped around you. It’s bliss. I could watch her all day. I stare into those beady little eyes and wonder what her world is like and how she experiences life. She’s pleasured by the simplest activities: drawing circles, dancing, cuddling, and singing. She’s always so proud of herself. I will never forget the first time she walked. She was entirely overtaken with joy when she finally did it. Sadie has to work hard to learn. I took for granted how easy it comes to typical children to walk, talk, sit – most everything in Sadie’s world takes more time and patience. She’s taught me to get out of the race. I just love her and don’t know how I could ever be without her.”