““We worry about what a child will become tomorrow, we forget that he is already someone today.” ~Stacia Tauscher
Dearest Beloved Friends,
Do you want to know what I love most about my job, well, besides getting to smooch on the cutest newborn babies ever and being allowed to watch those children grow up to become amazing people? What I love most is seeing the gift these children give to me by what they teach me. My friend Kris Holladay always told me that her daughter Kari, who had Trisomy 18, who never spoke a word or took a step was her finest teacher. I promise this is true.
What our children with Down syndrome do is help me see the world through their eyes. They have no guile. They have no hidden agenda. They see things as they clearly are. It is as if they gave me a lens that helps me put into sharper focus what it is truly before me. They often can level the playing field by just being who they are. If others are unkind to them, they react by being kind. A poem my mom taught me years ago that describes what they do perfectly…
He drew a circle that put me out.
Rebel, heretic, thing to flout.
But love and I had the wit to win.
We drew a circle that drew him in!
~Edwin Markham
When you have a baby with Down syndrome, the news feels hard to hear. If you are like me, you may have felt inadequate, feeling certain you do not have what it takes to be the mom of a child with this disability.
When my son David was born, I was only told negative ‘facts’ about my son. About all he would never do or never be. It felt as if my heart had broken into a million pieces. But time has taught me that they forgot to tell me the most important ‘fact’ of all…that I would love my him with all my heart, regardless of what he could be or do. Each of our children comes with his own unique personality. Some are shy and others, like my David, will be the one with the lamp shade on his head dancing on the table-top. I just did not know the joy he would bring me 39 years ago.
This is my friend Parker, who I met over 25 years ago when he was just 3-weeks old. Parker is an intelligent kind young man who has accomplished many things in his life. He graduated with honors from Mesa High School where he also was on the swim team all four years. He played the cello in the Mesa High orchestra and at his community college. He is active in his church and in the Boy Scouts where he earned the rank of Eagle Scout. During high school, he was on the Student Council doing Public Relations. He is a hard worker and works three days a week at the Whole Grain Bread Company in Mesa. His boss, Ron Anderson, loves him and his customers do too, as they come into buy his delicious, “Parker’s Pastries.”
He belongs to a dance troupe called “The Hip Hop Homies with Extra Chromies.” He is fluent in sign language and along with his Homies, he performs almost every week for church youth groups sharing the message of acceptance and inclusion. He often closes the performance by signing the song, “Angels Among Us.”
Something people with Down syndrome have taught me is that they do not judge another person by how they look, how much money they have or if they are famous or not. They don’t even care about those things. They have the uncanny ability to look into your heart. Each year I bring Parker and his mom and some other friends to speak at the Mayo Clinic to future doctors and to ASU to speak to students. I tell the students I have read their chapter about Down syndrome, and though it is factual, that’s not who are children are. I love watching the surprised looks on the students’ faces as they listen to Parker, Eric (Gardner) and David as they begin to see our kids for who they truly are. (Though I’m not sure they believe David that he is in the band, Back Street Boys.)
On the day I met Kay, she was telling me about their family, saying Parker was the last of their nine children. I only have seven and I thought that was a lot. She explained that they had six, and she thought they were done, but a feeling that kept nudging her, telling her there was one more baby to come. She tried but when she was unable to conceive, they decided to adopt two young children, a little girl age 3 ½ and her half-brother age 4, who desperately needed a loving secure home. Six months after the adoption was final, Kay learned she was expecting. To say that Kay had her hands full is an understatement. She worried about how she could care for her large family, especially the two children whose challenges required extra attention. She wondered how she do all those demands and have a newborn as well.
When Parker was born and then diagnosed with Down syndrome, Kay had to go through those hard but natural feelings we all go through as we try to find the answers and comfort we need. When I visited on that day, I brought her New Parent Gift Package, but I included the New Parent Welcome Folder I provide to all birthing hospitals. In that folder is an essay called, “Welcome to Holland.” Kay later told me it was reading that essay that brought her the answers and peace she needed. The author, Emily Perl Kingsley, is a friend of mine. Years ago, I couldn’t sleep so I got on the computer and wrote to her. I knew she lived in New York, but I said if she ever came to ‘our neck of the woods” I would love if she could come and speak to our parents. Ironically, she wrote back to tell me her granddaughter was graduating from ASU and that she’d love to.Her son Jason is ten years older than my David, and she grew up like me in the generations where children with disabilities were routinely removed from their homes and sent to live the rest of their lives in institutions, never to see their family again.
When Emily spoke at that parent meeting, she told us when Jason was born in 1974, the doctor told her and her husband that Jason had Down syndrome and that she should just go home and “Go on with your lives” and that he would take care of the baby. Confused, Emily asked her doctor, “What do we tell ourfriends and family?” His response, “Just tell them the baby died.” But instead of giving Jason to the state to care for him, Emily and her husband brought their son home and as they say… “The rest is history.”
Emily was a writer on the TV show Sesame Street from 1970 until she retired in 2015. She has received 21 Emmy Awards and 22 additional nominations for her work on Sesame Street. Emily was recognized by the U.S. Government for her longtime work to include children with disabilities on that children’s show.
This is a video clip you can Google showing her son, Jason on Sesame Street as he spells the word, “LOVE” with Cookie Monster.
I guess what I am trying to say is, dear parents, you will never know the powerful impact you and your child will have on the world. I will include “Welcome to Holland “at the end of my blog, but I want to share the sweetest experience I had with Parker when he was age 19-years-old.
One day, when Parker was walking home from work, he stopped by my Sharing Down Syndrome Arizona office to say “hi.” I love this dear young man, and I was so happy he stopped by. As we were chatting, he noticed all the pictures hanging on my walls of children with Down syndrome. He knows many of the same people I know, and he asked me how I knew so many people with Down syndrome. I told him I am so lucky because when a baby is born with Down syndrome the hospitals call me and I get to go and visit
them. I told him that was how I met him when he was a new baby. I told him how cute he was the day I met him. He blushed a little as he tried to hide his smile. I told him I loved them as babies and I love staying friends with them as they grew up.
As he listened to me, I saw his eyebrows furrow a little bit and as if wasn’t quite sure I was telling him the truth, so he decided to test me.
He said, “Well, do you know Megan?“ I thought for a minute about all the kids I know who were about his age and I replied, “Do you mean Megan N.?” He said yes, but I could tell he was surprised. But then he tested me again, “Well, do you know Hannah?” Without missing a beat, I replied, “Do you mean Hannah B.?” Again, he looked at me in disbelief.
He was quiet for a moment, as if trying to think of someone I would not now and then he asked, “Do you know Ethan?” When he said that, I was stumped. I could not think of anyone with Down syndrome his age named “Ethan.” I kept trying to think of who he was referring to, but could not think of anyone. So, I asked, “Parker, does Ethan have Down syndrome?” With complete innocence he replied, “No, he has optimism.”
Oh, dear friends, If I could only put into words the feeling that filled my whole heart at that moment. I knew that Parker had intended to say “autism” instead of “optimism”, but his answer was perfect to me. That is Parker. He found the perfect word and that spoke volumes of how he sees our world. Oh, how I wish we all could see the world thought his lens.
This month is Autism Awareness month. I know many children who I love who are dual-diagnosed with Down syndrome and Autism. Each of these children blesses our world, just as Parker does.
Love,
David’s Mom (aka Gina Johnson)
