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Thoughts from the Middle of the Night
When my son was born and I was told he had Down syndrome, I did not cry for a long time. But when I saw a girl walking hand in hand with her little brother to the viewing window of the hospital nursery, I could not hold back my tears. I knew my daughter would never walk with her little brother that way. I knew he would never experience the small pleasures of life I always took for granted. In those minutes my heart was broken and I was overcome with sadness for both my children.
Now, almost six years later, I am filled with pity for the misinformed, heartbroken woman who sat crying in that cold hospital corridor, without hopes, dreams, or fight in her. She was wrong about so many things. That part of me continues to be reeducated: I am grateful for every new lesson I learn.
I am thankful to that woman. She found she did have some fight in her. She was not the first mother to fall in love with her newly-diagnosed child. She learned of brave and stubborn mothers who put themselves forward in the media to spread a message of hope. She let the memories of those mothers stir her into action. I shall always revere the mothers and fathers who reached out a hand, and who built a foundation of support, information, and resources for women like me to draw upon. What they did for their children transformed my son's life. They continue, still looking forward, always reaching back to help others.
I still reach back to the woman I was. I hold her gently and wish that in her grief she could hear me. "It's not like that. Please don't lose yourself in that sadness. Hold on, wait and see. So much of that grief is over things that are just not true." I know she has to sit there crying, and I don't know how long. I will wait with her and be a friend.
My son will be six years old in a month. His sister is seven and a half. When they are not arguing ferociously or ignoring one another, as siblings do, they are the best of friends. They help one another scheme, and protect each other from harm. Both have argued seriously how life for the whole family would be better if the other disappeared, leaving an "only child." Each misses the other when they are separated overnight. I rarely think about the sister and brother walking toward the nursery viewing window, but sometimes when I see my two walking hand in hand down the beach or up a hiking trail, I think of the poor, sad woman I was that day.
I can't imagine life without my son. Sometimes when he barrels into my bedroom early Saturday morning to tell me a great cartoon is on, I wonder what life would be like without little boys. But I get up, and find he has quite good taste in cartoons. I think of him in his preschool days, chin raised in pride over some fabulous work of art, like the turkey he pasted up when he was three. I remember him seeing his good buddy from class, Terrell, at a school carnival, and how their eyes met. They squealed in unison and ran to one another like sweethearts in a perfume commercial. I enjoy the story his teacher relayed to me about how, during a cookie-baking class, he slyly nibbled his chocolate chips instead of saving them for the cookie. I am glad every day to have this son. The world is a better place with him in it.
My son is not a Down Syndrome "superstar," but I wanted him to have the experience of a regular kindergarten. He loves school and has a wonderful teacher. His classmates are charming and funny and bright. But I was afraid of their parents. My son has missed some fine opportunities because many people are as inexperienced and uninformed as I was six years ago. I believe he needs an edge before he can participate successfully in mainstream activities, and that edge is casual acceptance.
Last night was parent night at my son's kindergarten class. I was overwhelmed by the relaxed but purposeful way different parents let me know that they accept my son simply as a child in the kindergarten class. Their hands reach back to comfort the heartbroken woman in the hospital corridor. They comfort her in ways that I cannot. I thank every person who has brought us all this far. Thank you so much.
Browse at your local bookstore, public library or online retailer for books like Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives and its companion, Gifts 2: How People with Down Syndrome Enrich the World.
Kindergarten Inclusion Cohort
To Repeat a Grade - Or Not?
National Center for Prenatal and Postnatal Down Syndrome Resources
Diagnosis to Delivery: A Pregnant Motherís Guide to Down Syndrome
by Nancy Iannone and Stephanie Meredith
Loving a Child With Down Syndrome: Far From the Tree Doesnít Do It Justice
Far From the Tree: Parents, Children and the Search for Identity
What to Expect from Your Baby with Down Syndrome
Amy Julia Becker
Nine Myths About Raising a Baby with Down Syndrome
Life Lessons from Lisa
"... I would like to share five things I have learned in the last year about being a mother of a child with Down Syndrome ..."
Down Syndrome: Shifting Perspectives at the Dublin Arts Council
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