I am headed to Springfield today with Arc Advocates to meet with Director Casey about flexible day services and leadership development in Illinois. Great Op Ed in today’s Chicago Tribune.
A beautiful journey
How life improved after Down syndrome diagnosis
Dear mom who just received a prenatal Down syndrome diagnosis: I know how you feel. Except, unlike you, I was holding my new baby, Kate, in my arms when I found out. She was wrapped in a blanket, looking up at me as I cried, listening to the neonatologist on staff tell me (only minutes after she was born) that she had Down syndrome. And what that meant. He said that it meant she had an extra chromosome. And that she would have learning delays. He said that it meant she was significantly predisposed to certain medical conditions, including congenital heart defects. And that we should get her heart tested right away. He said that it meant she had low muscle tone and may not be able to breast-feed. He said that it meant she would do things on a different schedule than other kids. And in those first few days, after hearing those statistics, talking to doctors and researching online, I thought I knew what it “meant” to have a child with Down syndrome. And, quite frankly, I was devastated. And so it is with you. But let me tell you, from one mother to another, those facts are not what it means to have a child with Down syndrome. Many of those facts may not even apply to you. Some might, but many might not. I’ve learned this with all of my children. And I never allow generalizations to set my expectations. (For the record, Kate breastfed like a champ and continues to break stereotypes.) What those facts didn’t tell me about Kate is that, along with almond eyes and slightly lower muscle tone, she would also have my thick, blond hair and full lips. That she’s a daddy’s girl. That she loves peanut butter waffles and rocking her baby doll to sleep. They didn’t tell me that she’s a nurturing big sister, a doting little sister — and the star in the room wherever we go. Those facts didn’t tell me that she would make funny faces and dance like crazy to Fresh Beat Band. That she loves to sing. And swim. And go to gymnastics. And unload all of my kitchen cabinets. What those facts didn’t tell me in all that they “meant” is what she would mean — to me, to our family, to our friends. I look back on those first days and I remember the feeling of craving normality. I didn’t want to hear how life would be forever altered in some big way and that I would just learn to accept it. I just wanted life to be the way it was before: routine, “normal.” I wondered, will things ever be normal again? And then one day — soon — they were. Except they weren’t like before. They were better. Suddenly the overwhelming facts and fears faded. Because instead of knowing a diagnosis, I grew to know her. And so it will be with you. Because of her life, I have the unique perspective of seeing the best in the human spirit — and not just in her spirit (though she’s quite spirited!) but in everyone else. In a world where it’s easy to view strangers through skeptical eyes, I have seen an outpouring of love and compassion surrounding her. I have connected to those I wouldn’t have otherwise. I have had strangers stop me on the street just to tell me how beautiful she is. The world can seem like a scary place for any child, especially one with a disability. But I have met so many who just want to love her. I cannot tell you what challenges your precious one might have, just as I cannot tell you what challenges anybody’s child will have, “special needs” or not. One aspect of your child’s life just happens to be detectable by prenatal medical technology. But prenatal testing cannot tell you who your child will be, any more than a fuzzy, black-and-white sonogram can tell you how your child will look. When Kate was just a few months old, I went to Target to pick up some groceries. In line that day, I met the mom of a19-year-old man with Down syndrome. And when I shared that my daughter also had Down syndrome, her eyes softened and she held my gaze with a warm smile. It was as if we were both part of a secret sorority and she was an old pledge member. She asked me a few questions and before leaving, softly said the words that I’ll pass on to you here: “Welcome to your beautiful journey.” Lauren Warner is a freelance writer who lives in Houston. She blogs at SippingLemonade.com .
PAUL LACHINE ILLUSTRATION
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423