Toward the end of last week, I had planned a girls date with my niece Kylie to go get pedicures and dinner before she went on a trip to Florida. Since I barely get to spend any one on one time with that little beauty, I was really looking forward to a few hours of “girl-time.” I had to go and pick up Tessa from daycare before Kylie got there. I was opening the front door and the phone rang.
Normally, I would have just kept walking and let our voicemail pick it up and get to it later because if the house phone rings, it is almost always for Dan’s business. But I felt compelled to answer it.
“Mrs. Carey?” The sweetest of elderly voices asked.
“Um, yes. That’s me.”
“You don’t know me, but I found your phone number and I needed to call you. You see, I had a son named John. He had Down syndrome, and he was the love of my life.”
I shut the front door, went to my bedroom, and sat at the edge of my bed. All the uses of past tense verbs told me I should be alone for this conversation. As the conversation began, I was right.
She is a little old lady who lives in a small town near the Mississippi River in rural Wisconsin. She read a newspaper article that featured Tessa, the book and our story in the Telegraph Herald from the week before. She had a message she
wanted needed to share with me.
I hung onto her every word, and I will never forget this phone call. I didn’t say much. I just let her talk.
“I didn’t know John was a Down syndrome baby when he was born.” The generational gap between her rhetoric and mine was humorous to me because I have learned that some of the elderly unintentionally refer to people who have Down syndome as “the Down’s boy,” or “a Down’s person,” my personal favorite, “…she’s a Down syndrome girl…” Accidentally defining their being by that extra chromosome instead of just saying that someone has Down syndrome. But it’s okay, I understand what they mean; even though I really, really want to correct them
“I found out two months after he was born when I took him to the doctor in Dubuque, Iowa. They told me he would be nothing. They told me he wouldn’t do anything or learn anything. They wanted to take him away from me. They told me I would need to put him in an institution. I screamed and yelled that no one would take my boy–my baby. I ran out of that office with my little boy in my arms, and I never went back to that doctor. I think I cried the whole way home.”
Tears ran down my face. Because I knew she needed to be heard. I knew this was something she had been waiting to tell someone. And I just let her keep talking.
“Now you listen to me. Having John back then was tough, but I loved my son. People weren’t always so accepting. They had their doubts. So please love that little girl with everything you have and for all she’s worth. Because she is the greatest blessing you will ever have in your life.”
She spoke of how she implemented a special needs program in the school where she taught so John could attend school with his friends, how his grandparents adored him. She talked about how her husband moved south to work and how she did it basically on her own. She reminisced about taking John on vacations all over the country and how much he loved to travel and how great the people were. She told me about his work. She told me that John’s speech was greatly impaired and they formed a method of communication that worked for almost everyone that knew him. She told me how many lives he touched just by being himself. She told me about his last birthday shortly after he suffered a stroke during one of his routine throat-stretchings. Then she cried…a lot. She said all of the nursing home staff threw John a birthday party. People made signs and banners. His friends from town came in to see him. Two days after his 53rd birthday, John died.
“So don’t let anyone tell you she can’t do anything. Don’t let anyone break her down. She is worth a lot. Love her with all you have.” While no one has really ever told me Tessa will be incapable of doing things, years ago people told this woman that of her son John. Times are certainly different now. While that may be true for today’s kids like Tessa, her message that stems from experience in a harsher world is important: Never doubt your child’s potential and love them with your whole heart.
A mother’s love prevails against all odds.
I am grateful to have met the people that I have met and continue to meet because of my daughter. I adored the phone call that changed my day–my week. The way in which she reminded me of how wonderful having a child with Down syndrome is, and how she didn’t want me to forget it, was endearing. Her sense of urgency in delivering such specific details about her son stands out like a part of her wondered if I was unsure of what to expect of my daughter’s future. Mostly, I believe it was her genuine well wishes and thoughtful words that touched me most. She loved the idea of 47 Strings: Tessa’s Special Code and only wished she could have shared it with her son.
Today I will be sending her a copy of the book. I only hope she enjoys it as much as I enjoyed the very special phone call she made to me last week.
Photo courtesy of Ann Gorgen Photography