Tuesday, 20 December 2011 14:46

If I Had Only Known

Written by  Emily Murgo

I have a dream. My dream is born of 19 years of living with a daughter who has Down syndrome. It is a dream created by Amy as she continues to teach me, and others who know her, about life and living.

My dream is that the birth of every child be celebrated—whether or not that child has Down syndrome or some other disability. I say this with a heavy heart because I did not celebrate Amy’s birth. What a breach of faith that was! She has had to rise up against my early misgivings, sadness and disappointment. I worry that she knows somewhere deep inside that in those first few hours after her birth I didn’t want her. I wanted the baby who fit my ideals and my standards. Little did I know then that I had been given a gift—a daughter who would give true meaning to spirit, courage, love and joy. If only I’d known in those first dark hours that our life together would be more ordinary than extraordinary. If only I’d known that this daughter would more than fit my ideals and standards—she would fit hers, which are higher than mine.

I wish someone could have told me not to be afraid. Someone should have told me that Amy would make things okay—that she would grow to create a life for herself—a life that makes sense to her.

I’ve been thinking lately of how much Amy enriches my life and brings joy to our home. She’s spunky, always active, always planning something and alternately independent and asking for help.

At 19, Amy is so typical that it’s difficult to define her disability and what it means. Certainly, she still needs support daily in ways other 19 year olds may not, but her days are full and rich. Amy goes to school, works part-time, saves her money for things like clothes and jewelry, has a boyfriend, goes on dates and is very excited about going to her Junior Prom in a few weeks. She often has friends to visit and to sleep over or does the same at other houses; she’s constantly using the telephone and wears make-up and great clothes (of her choosing). She just had a slumber party with five friends to celebrate her birthday. It fills me with joy and pride to see her doing these things—what more could a parent ask for? What more could I have wanted when she was born?

There are times when I wish I could go back to those early days and experience them differently. I’d like to erase the pain and tears and give Amy the knowledge that she was wanted, accepted and celebrated from the first second. Of course, I can’t. I can celebrate now, though, and I am. I cherish every moment with her—even the ones spent arguing about how long she’s been on the phone or how much make-up she wears!

I feel like we began running a marathon that day in 1972 and that we’ve just finished. I have a feeling of breathlessness as I realize that we’ve made it. We moved at our own pace with our own style and once or twice we almost lost our way, but we reached the same chute at the others like us—you know, the one marked “Mothers and Daughters—this way”.

Amy has a new saying that she probably would have used if she could have at her birth. She would have said (as she often says to me now), “Oh, Ma! Take a chill!”

Reprinted from “Community”, Spring 1991. “Community” is a publication of the Coalition for Community Living and the Nemasket Group, 56 Bridge Street., Fairhaven, MA 02719.

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