Sean and Margie Doyle raised their four kids and Margie, figuring that one path was ending and another path was opening, had just gone back to her career.
Were they in for a surprise, one Margie calls “a big, beautiful surprise.” At 45, Margie found out she was pregnant.
She knew there were risks. Tests confirmed baby Colin had Down syndrome, a moment she recalls filled with “pure fear.”
“With four other children, it wasn’t just my husband and I whose lives would change or grow in a way we didn’t know. For me as a mother, I needed to be able to address it for myself and be a source of the right, loving information for my children (John, 26, Packy, 24, Tara, 21, and Brian, 16).”
So she logged on to her computer and started to research, which led to the Down Syndrome Research and Treatment Foundation, of which she is now a director. Its goal is to improve cognition for the 6 million people with Down syndrome and prevent early onset of Alzheimer’s disease that she says is inevitable for virtually every person with Down syndrome as they live longer than ever.
She doesn’t dare say how much time she devotes to DSRTF but does say she couldn’t do what she does without Sean.
“Sean shares the same passion. Together we have made it work. It’s a balancing act at times.”
Margie says Colin, 5, has taught her so much, particularly to pause and participate in the moment, rather than rushing through it.
“We call him Boss Doyle. He is everything that’s right. We are just so grateful for his joy and his beauty and his complexities. And he accepts our complexities,” she says.
In mom’s words
The one piece of advice you would share: Keep reaching. Reach until you find the support and friendships that will help you grow and allow you to experience and live your journey in good company. Seek the people who will bring to your life experience, wisdom, support, peace, direction, empowerment and true friendship. In doing so, you will be able to extend yourself to another parent in need. Most importantly, you will be able to share these same riches with your child.
Your happiest moment: First and foremost was when Colin was born and Sean and I looked upon the most beautiful face and simply embraced this profound moment, a gift of new life. Then, watching our four other children walk into the room, with flowers from Dominick’s for me, and melting upon seeing their little brother. As each child held Colin, Sean and I witnessed a love, and an unspoken commitment in their embrace, that as a mother, was by far the greatest gift I will experience.
If I could change one thing about being a parent with a child with special needs: It would be to eliminate the “moments” in a grocery store, school setting, anywhere we find ourselves frail, vulnerable or self-conscious as a parent. There is no room for those feelings and they serve no good purpose, but they can, and do happen. Hold your head high and walk on, you have tremendous feats to accomplish.
How to help
- Find out more about Down Syndrome Research and Treatment Foundation at dsrtf.org.
- Funding Futures Chicago, a huge charity auction, grew out of a DSRTF meeting in September 2011 to raise money for research. Its first event raised ,000. Last year, it raised more than 0,000. Planning is under way for this year’s event.
- fundingfutureschicago.com
