Dearest Sharing Families,
As you read our 2024 Annual Report you will see we have done much to bless the lives of people with Down syndrome. When I started this nonprofit almost 34 years ago in July of 1991, I did not know it would grow to be the longest running premier parent support organization that now serves over 5,000 families. I just knew I never wanted another mother (or father) to feel as heartbroken as I felt when my son was born. The wish of my heart was to educate, empower but most of all give hope to families.
Daniel Hughes and his mother, Gaye were my first guest speakers. Oh, how I love this family and even more, of how I love what children like Daniel and my son David have taught me over the years. I met Gaye and Daniel at an audition where talent scouts were searching for a child with Down syndrome to be in a commercial. I loved Gaye the moment I met her. She is warm and genuine and Daniel was charming and so personable. He had no speech delay like my son, David, so when I heard Daniel speak so eloquently, I was both delighted and surprised. I knew my son’s speech delay was due to the hearing loss caused by medication given to him as a newborn to save his life. When doctors told us it would cause profound hearing loss but they thought it would save his life, I said I did not care. I just wanted my baby to live.
When the audition ended, we walked to our cars together, and Gaye and I were chatting as mothers do. Her son, Daniel was walking quietly besides her and my son, David, on the other hand, was also walking beside me, but mostly because I had a firm grasp on his small wrist. Not all children with DS try to run away from their mothers but David thought it was great fun to do that to me. He seemed to get a kick out of seeing me run like crazy trying to catch him. 😊
We reached my car first so we stopped to say our good-byes. I hugged Gaye and it warmed my heart to see Daniel doing the same to David. But then something happened that I never expected. After Daniel hugged David, he just stood there as if he was studying David’s face. I glanced at Gaye and I saw she noticed it too, though neither one of us knew why.
Then, out of the blue, Daniel turned to his mom and with a perplexed look on his face and a confused tone in his voice he exclaimed, “Mom, David has my face!”
The moment he spoke those words a most powerful pain gripped my heart. There church hymn I love and one line of the song says, “ In the quiet heart is hidden sorrow that the eye can’t see.” What took me off guard was that the sorrow I thought I had conquered years ago, had returned.
When David was born, friends and family started calling me, but instead of congratulating me on the birth of my newborn son, the only thing they could say was to tell me how sorry they were.
David was born in 1983, the fifth of our seven children, and at that time I had never heard of Down syndrome and for good reason. Growing up in the 1960’s almost all children with disabilities were routinely removed from their parents to become wards of the state and sent to live in institutions. Those children never knew what it felt like to be loved by parents and grandparents, or to play with their brothers and sisters. At his birth I knew nothing about sad places like “Willowbrook” (see Geraldo Rivera’s 1972 documentary on youtube.com) existed where most of those children in institutions lived and died alone.
But still, it was hard to hear all David’s medical challenges, as a premature, critically ill newborn baby. A well-meaning social worker gave me books to read so I could understand my son’s disability. But each word I read only made it feel as if my world had come crashing down around me. The first sentence said, “We won’t tell you if you should keep your baby or place your baby.” Place my baby!?? It told how 85% of marriages end in divorce when a baby is born with a disability. All I could think of was, “But I like Curt, I don’t want a divorce.” Every word I read made me cry and finally I just slammed the book shut and cried myself to sleep. I knew I could never be a good enough mother for a child with a disability. I was pretty sure God had made a mistake sending my baby to me.
I loved my baby but I felt so afraid. I could not ‘see’ the Down syndrome that was so obvious to everyone else. One doctor even undressed my son pointing out, one by one, each of the anomalies (markers) that proved he had Down syndrome. His almond shaped eyes, his small low-set ears and even what he called a ‘fat pack’ on David’s neck, among other things. I was not in denial, I believed them when they told me he had Down syndrome, but I just could not see it. After pointing to the last marker, he looked at me and said,” Can’t you see it?!” I replied, “No, he just looks like his brothers.” That poor doctor walked away feeling he had failed for sure.
It was in that moment I wished that somehow no one would be able to see David’s signs of Down syndrome. That way they would not feel sorry for me or for my baby.
But the moment Daniel spoke those words, a powerful feeling of grief washed over me when the gut-wrenching realization hit me, “If even Daniel, who has Down syndrome, can see that David has Down syndrome, then for sure others will see it as well.”
The depth of sadness that his words brought to me was palpable. But then I looked at Gaye and could tell she was as taken off guard as much as I was. And suddenly I felt a different kind of sadness. My heart began to hurt for her, wondering what in the world she could possibly say to her dear son.
But to my surprise, Gaye responded immediately. With a smile on her face and gentleness in her voice she said, “Yes, Daniel, it’s a sweet face, isn’t it?”
Hearing her words hit me powerfully!
Not wanting her to notice the tears that were beginning to well up in my eyes, I hurried toward my car.
David (6), Chris Burk (Corkey) from TV show Life Goes On, Luke, Dad, David, Chris B. Seth, Brad, and me.
I did not even know how to begin to process all the emotions I felt in that moment.
I was just about to get David in my car when I could hear Daniel calling to me from a distance. But I could not understand what he was trying to say to me, so I yelled back asking him to speak louder so I could.
I saw Daniel off in the distance standing next to his mother’s car. When he saw me, he began to wave excitedly and then in an even louder voice I could hear his words. It was then I realized he was not talking to me, but rather to my son when in a booming voice he yelled back, “Good-bye Handsome!”
I am sure Daniel had no clue how much his words meant to me. After he spoke those beautiful words, the powerful message behind them hit me so hard. That was when my learning began.
Daniel was trying to teach me to look beyond my son’s disability as I began to see him for who he truly was…a delightful little boywho has become the greatest light in my life. David continues to teach me about what matters most. He is showing me by his example how to have unconditional love for all people. Yes, it is my David who is teaching me more about what matters most in life, then I could ever teach him. I am so grateful. And I know your children are teaching you the same thing. Are we lucky or what?
With love,
David’s Mom (aka Gina Johnson)
