My Daughter's Disability is Her Superpower

"If you judge people, you have no time to love them."

Mother Teresa

When my daughter Lucy and I walk down the street, we receive looks ranging from pity to fear to empathy. Rarely, do we experience the freedom of walking past someone who is indifferent to us. That's because my daughter Lucy has Down syndrome.

Thirty years ago, when the pediatric doctor walked into my delivery room to share the news with me and my husband, Steve, I reacted as most people did at the time -- with shock, grief, and inconsolable sorrow. How could I, a healthy 28-year old woman have given birth to a baby with Down syndrome? As much as it pains me to admit it now, the first word that came into my head hearing the news was "retarded." In 1990, that's how our society regarded people with Down syndrome, and I was as ignorant as the rest of the population.

But, while I suffered intense grief at Lucy's diagnosis, like any new parent, I was also in love with my baby girl. For the first time in my life, gazing at Lucy's pink round face and sparkling blue eyes, I felt absolute and unconditional love. There was sorrow, yes, but there was also a fierce urge to protect my baby. And so, I was furious with the doctors and nurses for treating the birth of my daughter as a tragedy and couldn't bear one more sad reaction from a family member or friend. All I wanted to do was rush home and hide with Lucy in my room. I wish I could have comforted my younger self with just a shred of the wisdom I have today. The truth is Lucy's birth had wounded my vanity and destroyed the idea I had of my "perfect" life.

Knowing Lucy as I do now, I still can't get over how one-sided the doctors' discussions of Down syndrome with us were. All Steve and I heard those first few weeks was how Lucy would suffer from delayed speech and walking, a lower IQ, possible heart problems, digestive issues, and the likelihood of early Alzheimer's. A cardiologist even volunteered to Steve that Lucy would never graduate high school (an ignorant and hurtful pronouncement that turned out to be false). In the long parade of doctors and professionals who came to speak with us, not one explained that while our daughter would be challenged cognitively and physically, she would far surpass us and other people in her capacity to empathize and love.

After three decades of living with Lucy, I find it astonishing that no one told me how my daughter would model for me each and every day what true love and compassion look like; how she would help me to slow down and appreciate each day and moment as a gift; how she would love me unconditionally (even as a teenager) regardless of my mood or behavior; how her pure heart would chip away at my vanity and the mistaken ideas I had about what constitutes a good life; how her refusal to sweep difficult emotions under the rug would make me a more vulnerable, kind, and authentic person.

What does is say about our culture that these extraordinary gifts of Lucy were so consistently ignored and overlooked?

Most people have a vague understanding that people with Down syndrome are unusually sweet and kind. But, as the mother of Lucy, I can't help but hear condescension in that superficial understanding. Lucy isn't just kind. She actively loves people in a way no one else I know does. For Lucy, loving others is her mission, her way of life. Although her mental acuity might not be as developed as it is for other people (she can read and write), her compassion and emotional intelligence are off the charts.

I first got a glimpse of Lucy's extraordinary gifts when she was only 4 or 5 years old. Lucy and her younger brother Matty were standing in my parents' kitchen, innocently drinking from their juice boxes, when my Dad, a stickler for cleanliness, snapped at them about not spilling their juice. To appease my Dad, I quickly sat them on the counter stools. Matty stayed quiet and kept his head down. But Lucy gave her granddad, who was seated in his armchair, a quizzical look. She put her juice box down, walked over to his chair, and hugged him really tight. No words. Just the most love-filled and sincere embrace that lasted far longer than her usual hugs.

Not once growing up did I or my seven siblings ever think to hug my Dad when he was grumpy. But Lucy saw beyond my Dad's gruff exterior and sensed that what he needed was love. Her reaction was so pure and simple and perfect. My 5-year old daughter with Down syndrome was already teaching me that loving people means loving them even when they aren't at their best, when they need our love the most. Needless to say, my Dad was caught off guard by Lucy. When she was done hugging him, he smiled wide and said sweetly, "Thank you, Lucy."

That incident gave me my first glimpse into Lucy's extraordinary compassion, which was clearly on a much higher frequency than that of anyone else I knew. And her compassion isn't only reserved for the people she knows. When she was about 8 years old, my sister Ann took Lucy to the store to get her school uniform. In the dressing room, they heard a mother screaming at and berating her little girl. Ann was so uncomfortable by what she was hearing that she whispered to Lucy that the uniform was perfect and it was time to get dressed.

As they were walking out of the dressing area, Lucy turned and saw the mother and daughter. She ran towards them, and Ann naturally assumed that Lucy was going to hug the little girl. But she rushed right past her and hugged the mother, who immediately started to cry while Lucy continued to hold her. Everyone in the store who saw what was happening stopped what they were doing to take it all in: how did this little girl know it was the mother who was suffering and in need of love?

The great Buddhist monk and teacher Thich Nhat Hanh regards hugging people as a form of meditation. For his "hugging meditation," Nhat Hanh explains, "you have to really hug the person you are holding. You have to make him or her very real in your arms, not for the sake of appearances, patting him on the back to pretend you are there, but breathing consciously and hugging with all of your body, spirit, and heart." His description perfectly describes Lucy's hugs, and I believe it's the reason the mother of that young girl started to cry. Lucy's hugs are healing because she gives all of herself; there is no underlying judgment or withholding of affection. Her hugs fully accept and love you as you are. She has taught Steve and me and her brothers, Matty and Brendan, and sister, Georgia, how to hug with all our body, spirit, and heart.

I wish I could recount all the many ways Lucy loves: her insistence on staying up till midnight to be the very first person to post on Facebook a Happy Birthday greeting for you; her courage, as a teenager, to snuggle up next to my Mother when she had Alzheimer's and lovingly talk to her (with more patience than I could muster); her eagerness to attend funerals so she can comfort people in their moment of grief; her determination to remember the anniversary of someone's death years later and never fail to message their loved one to offer her support.

As someone who's had the privilege of watching Lucy's love in action for so many years, I want to shout to the world, "This is what you are missing! You think the Lucy's of the world have no value? I'll let you in on a great big secret. The rest of us are the ones with special needs because we are missing the whole point of our lives -- to give more healing love and compassion. Take off your masks and let your true selves be seen! Don't be afraid to love!"

One of the most important lessons Lucy has taught me is how shallow our understanding of each other is. We have categories we confidently put people in to help us make sense of the world and feel in control, but these categories cut us off from experiencing the full humanity of another person. The label "Down syndrome" is helpful in understanding the condition and how to treat it, but it tells us nothing about who the person is.

Unfortunately, for Lucy, she can't hide her condition. As soon as people see her, they know she has Down syndrome. The rest of us get to hide our "condition" -- our depression, addiction, narcissism, chronic disease, mental illness, or whatever else might be ailing us. While our culture has made great strides in accepting people with intellectual disabilities, we still have a long way to go. My daughter Lucy isn't just someone who deserves to live as rich and full a life as any other person. She is someone whose extraordinary capacity for love and compassion we should be praising and modeling. Our future as a species depends on it.

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Carin Collins is writing a memoir about her life with Lucy. You can find out more about Carin and Lucy at www.mylifewithlucy.com.

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