After Helen Milligan delivered her third child, she and her husband Mark were informed that their new baby, Aidan, needed immediate surgery to connect his esophagus and stomach. He also had Down syndrome. The couple had anticipated the surgery from ultrasounds, but they hadn’t anticipated Down syndrome. As they handed their fears and concerns to God, they came to realize that they also hadn’t anticipated the transformative love that Aidan would bring to their lives and their family.
What was your immediate response in realizing Aidan had Down Syndrome?
Mark: I wasn’t prepared for that as a possible outcome, and so my reaction was one of shock at first, but then… Aidan was about to go into surgery for a pretty significant thing, so while the diagnosis was a surprise to me, my immediate focus became about him getting through the surgery. The doctor we met with, a well-respected geneticist, painted a very bleak picture about what people with Down syndrome could and couldn’t do.
She really kind of scared me with the things she was saying. Over the next few weeks and months as we learned more about what having a child with Down syndrome might be like, it certainly wasn’t what this geneticist was picturing. At the time, though,
I just went to the chapel and put it in God’s hands. I told Him I really loved our new baby and wanted him to pull through the surgery and be a part of our family.
How did people initially react to Aidan?
Helen: I did have some friends, like one from college who, when I told her that Aidan had Down syndrome, said, “Oh, how awful, how awful!” That’s the last thing you want to hear about your new baby. But in general people were really supportive. My neighbor said, “He’s going to be fine and if there are two people who would do a great job with a child who has a disability it would be you and Mark, I wouldn’t worry about it at all.”
A couple of people said, “Just love him for who he is” and I embraced that.
What surprised you about the responses to Aidan’s diagnosis?
Mark: What bothered me was that if Aidan didn’t have Down syndrome no one would be making predictions about his future abilities or disabilities. When our two other children were born, our doctor didn’t come in and say: “There’s a 50% chance that Ryan is going to get divorced after he gets married” or “statistics show that Meagan will probably take drugs as a teenager.” The doctors didn’t look down the road at what the negative possibilities might be for our other kids.
Helen: You can do all the prenatal testing in the world but there’s no such thing as the perfect child; people are complicated and everyone has their gifts and their limitations, whether those are obvious or not. Whether you find out your child has limitations when you’re pregnant or later, you’re going to face challenges. What’s important is how you respond to that – not with disappointment, but with love. For us, being good parents is about helping our children find their gifts and helping them respond well to the challenges life brings.
How have you changed since Aidan came into your lives?
Helen: He has taught us so much. When I was pregnant and found out that there was something wrong, I thought ‘there has to be some sort of vitamin I can take, or something that can fix this.’ Before the delivery my Aunt said to me, “Why do we worry so much? You have to put it in God’s hands now”. I’ve always remembered that. When I’d pray I said, “I’m in your hands now, we’ve done everything we could but ultimately this is in your hands. He’s yours…” Aidan has definitely helped me to be able to let go like that. It is so easy to get wrapped up in the worry, you just have to hope and have faith that God’s going to lead you down the right path. I get a lot of strength from that, that it’s not all on my shoulders. God is there supporting us and our family. You really can’t do it on your own. I have had to rely more on my faith and my family and realize that that is a gift too.
Have your other children been affected by having a brother with special needs?
Helen: Yes and no. Meagan and Ryan just see Aidan as their little brother and they don’t think of our family as being different. They love their brother, and because of that, they are more sensitive to anyone who has special needs. They give people a chance because they see the goodness of Aidan. He wakes up every morning with a big smile and his bright blue eyes shining. Everyday. We’ve all learned a lot from that – to regard each day as a gift, as something special. Aidan also has an amazing ability to connect socially with people. Even when we go into a doctor’s office where he’s had so many unpleasant experiences, he always gives everyone a big smile and a wave. He says hi, and he makes sure everybody says hello to everybody else. That’s very important to Aidan – that everyone says hello to everyone else.
He just breaks through the barriers we put up between each other. He has something about him that is loving and kind, it’s magnetic. To think that he has limited words in his entire vocabulary and yet he can go up to anybody and be comfortable. One Christmas, we were at the pharmacy waiting for his medication, it was busy and an older man sat next to me and you could tell he was grumpy. Aidan can pick up when someone’s having a bad day and he’s quick to go give a hug. He engaged the man right away and kept saying “Ho, Ho, Ho!” as he pointed to the Santa wrapping paper…by the time the older man was getting ready to leave he had tears in his eyes. Wherever we go people are drawn to Aidan. And his siblings notice that. Aidan is a gift not just for our family, but for everyone he meets.
What is the biggest challenge for you?
Helen: The biggest challenge for me when I think ahead isn’t caring for Aidan; but helping other people realize all that Aidan has to offer. I want him to be in a place where people want him there. He may take longer to learn certain things or he may take a couple of extra minutes to get up the steps, but I want people to give him those couple of extra minutes and to be fine with that. I know that Aidan’s going to have a lot of gifts to give. Finding people who are open to seeing them and not just seeing the things that he can’t do, that’s the challenge.
Over 90% of people who receive a diagnosis of Down syndrome during pregnancy end up aborting the baby. How does that make you feel?
Helen: I think the natural thing to feel when you find out that your baby has a disability is fear. The way it’s made to seem like this huge burden and not like a child who is full of love and joy, it makes you want to run away from it all or try to change it. With abortion being an option and so quickly offered, that’s why it’s taken. By refusing to accept these children who are full of pure love we’re making the world a colder place. I think if couples were given the chance to spend time with people who have Down syndrome and their families they would feel very differently. Everyone has those initial experiences – shock, sadness, anger – and then you get to know your baby and those emotions quickly change. You have to give yourself time.
Mark: It’s sad for those couples. because there’s something different that the child with disabilities brings to us, something I would never trade. That’s why there are waiting lists of couples who want to adopt children with Down syndrome. There’s nothing like when you walk in the door at the end of the day and you see Aidan running up to you with his arms wide open ready to give you a hug. He brings out the best in you. He’s our gift.
Aidan is now a junior in high school and enjoys school and lots of extracurricular like playing percussion in the school band, acting in school plays, being on the swim team, competing in Special Olympics, and hanging out with friends.
Originally published in our Winter 2006 issue of Imprint.