Thoughts From the Middle
of the Night
Journey of Hearts
A Healing Place in CyberSpaceTM
From the Middle of the Night
by Pam Wilson
|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 sonís 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.
ďItís not like that. Please donít lose yourself in that sadness. Hold on,
wait and see. So much of that grief is over things that are just not true.Ē
I know she has to sit there crying, and I donít know how long. I will wait
with her and be a friend.
|Evan will be six years old in
a month. His sister Zoë 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 ďonly child.Ē 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 canít 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
ďsuperstar,Ē 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 sonís 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.
Reprinted from Northwest Baby
& Child (c/o
BDS, 400 North 36th St, Seattle WA 98103 USA)
The Down Syndrome News, newsletter
of the National Down Syndrome Congress.
Thoughts from the Middle of the
Night can also be found at the website for Our Kids. Our-Kids is a "Family"
of parents, caregivers and others who are working with children with
For more information on Down Syndrome,
check our Resource page, or use the search engine.
Last updated July 9, 1998
the Middle of the Night by Pam Wilson, copyright Northwest Baby, May 1991.
Used with permission of the author and Northwest Baby & Child. Permission
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