Thoughts From the Middle of the Night

by Pam Wilson

Reprinted from Northwest Baby & Child 
(c/o BDS, 400 North 36th St, Seattle WA 98103 USA)
May, 1991, with permission from the Down Syndrome News.
When my son Evan 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.
Evan will be six years old in a month. His sister Zoe 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.
Evan 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. Evan has missed some fine opportunities because many people
are as inexperienced and uninformed as I was six years ago. I believe Evan
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.
Thoughts from the Middle of the Night by Pam Wilson. Northwest Baby, May,

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