Childhood Letter of Introduction

Thank you for visiting this section of our website. The information provided in this section will likely provide you with up-to-date facts about Down syndrome. We are fortunate to have an organization right here in the Capital District that provides information and support to parents, professionals and individuals who seek information on issues about Down syndrome.

The Down Syndrome Aim High Resource Center (DSAHRC) is a not-for-profit organization with a Board of Directors, a professional staff, and families and professionals committed to increasing opportunities for individuals with Down syndrome. The purpose of DSAHRC is to enlighten and encourage the broader community to recognize the individuality, uniqueness, and capabilities of individuals with Down syndrome, and to reflect the hopes and dreams of those individuals and their families.

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Monday, 15 August 2011 13:51

Thoughts From the Middle of the Night

Written 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.  Then, as I was waiting for my daughter to visit us in the hospital, I saw a girl a few years older with her little brother walking hand in hand to the viewing window of the nursery, and I could not hold my tears back.  I knew that my daughter would never walk 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 re-educated and I am grateful for every new lesson I learn.

I am grateful to that woman who found she did have some fight in her.  I am thankful she was not the first mother to have fallen in love already with her newly-diagnosed child, and that she let some memories of brave and stubborn mothers who put themselves forward in the media to spread the message of hope 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 on.  What they did for their children has transformed my son’s life.  They continue, still looking forward, always reaching back.

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 the 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 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 those other children at the 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.  And sometimes at night, I cry for Baby Doe.

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 I 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 how during a cookie-baking class he shyly 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.

Last night was parent night for my son’s kindergarten class.  Even though Evan is not a  Down syndrome superstar, 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 already missed opportunities because many people are as inexperienced as I was six years ago.  I feel that Evan needs an edge before he can participate successfully in mainstream activities and that edge is casual acceptance.  I was overwhelmed by the relaxed but purposeful way different parents let me know that they do accept my son as first a child in his kindergarten class.  I know today that their hands reach back to comfort the heartbroken women in the hospital corridor in ways that mine could not.  I thank every person who has brought us all this far.  Thank you so much.

Reprinted from Down Syndrome News, June 1990, page 66.

By Pam Wilson , SE of Seattle WA