March 21, 2013 marks the eighth annual World Down Syndrome Day, the second official date since it was recognized by the United Nations last year. People with Down syndrome, their families, friends, teachers, coworkers and supporters will be celebrating across the globe. Celebrated on the 21st day of the third month of the year, the date is symbolic of the third copy of the 21st chromosome that characterizes Down syndrome. There are over 400,000 Americans living with Down syndrome. It is the most common chromosomal condition.
In honor of Down Syndrome Day, I could think of no one better to guest blog than Gillian Marchenko.
Gillian is a writer, speaker and advocate for kids with special needs and their families who, together with her husband Sergei, serves a church in Chicago (Christian Fellowship Church) where families of kids with disabilities are welcome. She leads a ministry (The King’s Table) offering weekly respite care to families of children with special needs, and an inclusive ministry for weekend worship.
Gillian has written very authentically and poignantly about her experiences as the mother of four children… one (Polly) with an extra chromosome who has had a stroke, two brain surgeries and a diagnosis of Moyamoya Disease, and another (Evangeline) who came to their family through Reece’s Rainbow, an organization that helps kids with Down Syndrome from around the world find loving families. For this year’s Inclusion Fusion, she spoke on the topic…Loss and Grief in Parenting Children With Special Needs.
Here’s Gillian’s post…To the New Mother of a Baby With Down Syndrome
I remember the feeling.
That first meeting with another family farther along the path of Down syndrome after the birth of our child with the same diagnosis.
I remember fear and fascination.
Fear of the child four or five years old whose eyes mirrored my baby’s. She shouldn’t have looked like him. I birthed her. She should have resembled me.
Fascination, as I watched his sister play with him; he hit her, she cried, mother reprimanded. So common, so usual, so family. Things I thought we may have lost with the appearance of an extra chromosome.
I cried quietly for two hours while visiting this dear little boy and his family. They loved him. They cherished him. He played games, and communicated with his hands and with his voice. He chowed down on his lunch.
But still, I cried, because this path wasn’t my choice. At my point of weakness his mother appeared strong. I was an anthill. She, a mountain. I clutched my baby to my chest, each second teetering between relief and uncertainty.
His mother was gracious, tender. We whispered to each other as her children played nearby. ”I love him. Our life is good. Really. It is.”
Her smiling eyes met mine.
I looked away.
I loved my baby.
But that day I did not love Down syndrome. It was too big, too unknown.
Your husband contacted us last week. We scheduled dinner. The following days you kept popping up in my mind. A mother forced to move from a typical parenting landscape to some place new, a place everyone claimed was special. If you are anything like me, shocked by a culture wildly unknown and unsolicited.
“Mom, why are you cleaning up around the house, and making us all put on fresh shirts and brush our hair?” Elaina asked as I set the table. “You usually don’t make such a big deal out of dinner guests.”
Several responses queued on my tongue. Instead, in a brief moment of clarity, understanding that Elaina would learn more from the truth, I responded.
“Because, this family had a baby a few months ago with Down syndrome and I want them to feel welcome. I want them to see that we are happy, and that Papa and I treasure all four of our girls. I want them to see that we are OK.”
Your family arrived. We cooed over both of your children. I held your new baby in my arms. He smelled like sunshine.
His eyes mirrored my daughter’s.
I held your little one to my chest as our children played close by. Polly hit Zoya. Zoya cried which made Evie cry, and Elaina played on the floor with your son.
You probably aren’t excited to be a part of our special needs club. I have to tell you, though, welcoming you into my home was like welcoming family.
You teared up as you talked about your love for your son. “Down syndrome is something different. It’s a lot to take in.”
Oh, how I know.
I am a bit farther down your new path. Give yourself time to fall in love with your son, and to get used to Down syndrome. Breathe in his baby smell. Watch how his brother kisses the top of his head, how your husband gently puts him down to sleep, how your baby locks eyes with you when he eats. The weight of the world is in those eyes.
Today, you don’t have to love Down syndrome. Just love your son.
And know that we, other parents in this very special club, are here when you need us and that someday, you will be the one looking a new mother in the eye saying,
“Our life is good. Really. It is.”
In addition, I’d recommend two other posts from Gillian…21 Things You Should Know About Down Syndrome and Ten Things Not to Say to the Parent of a Child With Down Syndrome.
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