Maura Weis got news that any expectant mother would dread.
Seven months into her pregnancy, doctors told Weis, wife of then-New England Patriots Offensive Coordinator Charlie Weis and future head football coach of the University of Notre Dame, that their daughter, Hannah, had polycystic kidney disease, and likely would not live for more than a few days after birth.
Today, despite the fact that Hannah, 10, is developmentally delayed and has mild mental retardation, she attends a regular school. Her mother serves as chairwoman of the board of Hannah and Friends, a not-for-profit foundation dedicated to raising awareness of people with autism and developmental delays.
Maura Weis recently spoke to Register correspondent Theresa Thomas.
What is your family background?
I have a brother and step-brother. I attended Catholic grade school and public high school. I met my husband Charlie at a restaurant on the Jersey shore. We have two children. Hannah is 10 and Charlie is 12.
What went through your mind when doctors told you your daughter had polycystic disease and wouldn't live for more than a few days?
I was just shocked. Nothing like this had ever happened in my family before. When we got the news in the doctor's office, I felt absolutely overwhelmed, but because my husband Charlie and I had our 2-year-old son with us, I didn't want to break down. Once we got home, I went upstairs to my room and prayed that the baby would be okay. When I was praying I felt this sense of peace. I felt like God was saying everything was going to be okay. I really believed that. When I went back to my obstetrician, however, she said the only thing she could offer me was an abortion.
How did you react to that?
I was taken aback. This was a child inside me, not a tumor to be removed. Charlie agreed completely. We both knew that our daughter's life had meaning, whether she lived an hour or a day or many years.
Describe the day Hannah was born.
It was April, a nice sunny day, and Good Friday. I had a very peaceful labor, which only lasted three hours. Charlie was with me, and I was trying really hard, doing my Lamaze breathing. I was thinking, “This child is really in for it. I'm going to do the best I can for her.”
Hannah was born in front of 13 people ready to whisk her away because they expected all sorts of problems. But she came out crying and looking perfect with no signs of distress.
So Hannah was healthy?
Hannah's creatinine levels [which measure kidney function] were normal. Her kidney function, analyzed through her blood work, looked great. Her kidneys appeared polycystic on the ultrasound because her ureters were small. Urine had backed up into her kidneys and one had atrophied. The atrophied kidney had to be removed when she was a couple months old, and one ureter had to be opened up so everything could work properly. Once that was done, we thought the crisis was over, and we were ready to move on.
What happened after that?
Hannah seemed to be right on track with her milestones, except for her speech, but the doctor said not to worry, as long as she understood what we said to her. At 18 months, she got her measles/mumps/rubella shot and Charlie left the New England Patriots and went to the New York Jets [as coach]. As we settled in Long Island, I noticed a drastic difference in Hannah. She didn't want to be around people. She was really quiet. She was content watching TV all day.
I thought maybe it was because she wasn't around other kids, so I put her into preschool. The first day, when I went to pick her up, the teacher pulled me aside and asked me if Hannah was deaf. The teacher said they would talk to her, and she ignored them like she didn't even hear them. After a lot of testing, the diagnosis was pervasive developmental disorder, a form of autism. It was really devastating. Later we found out she also has some mild to moderate mental retardation.
Where do you think your strong belief in the sanctity of life developed?
I was very close to my grandmother, who died when I was 13. I specifically remember being at her wake and thinking how important life was, no matter what the age of the person. I valued our relationship so much.
I don't recall a time in my life when I didn't believe that life is precious, but I've come to understand its value in a new way through different events in my life.
For example, a couple years ago my husband had gastric bypass surgery. He had internal bleeding that went unnoticed, and we almost lost Charlie. The doctors actually told me, “Your husband isn't going to make it.”
Through the prayers of many people, though, Charlie recovered and was soon coaching on the sidelines on a motorized cart. When you lose or almost lose people you love, you tend to take life very seriously. These kinds of experiences make you value life.
What is important to know about respecting the lives of children with special need?
It's important to understand what these children need. When Hannah was younger, the hardest part of adjusting to this challenge was the way some people related to her. Here was my beautiful daughter whom Charlie and I loved beyond belief, who made it to this planet under incredible circumstances, having had surgery, for example, when she was just 2 months old. She was happy. She was a good person. She'd never harm anyone, and yet people would stare. It hurt so much.
One time when we lived in New Jersey, Hannah and I were going into my son's school during a thunderstorm. She loved the rain and had a big smile on her face as we ran through the raindrops to the entrance. We were soaking wet when we got to the door. She was about 3 years old and a big baby, a bit overweight. She looked a little different from other kids her age, but I wasn't thinking about that as we ran in. There was a teacher on the phone in the hallway who was glaring at her with an expression that seemed to say, “What's wrong with her?” I went up to her and asked, “Why are you staring at a child like that? I don't understand.” After that the teacher was so nice to Hannah. I think she just didn't know how to react to her.
People with special needs want to have friends just like anyone else. They want to be loved just like anyone else. If they fall under the autism spectrum, maybe they can't verbalize it. Maybe they can't look someone in the eye with love, but they're feeling it inside and their feelings really matter.
Have people ever surprised you in their kindness toward your daughter?
Once we were on an airplane and, for some reason, had to get off before take-off. Hannah didn't understand why, once we were on the plane, we'd have to leave. She got all worked up and started crying and making noise. There were no seats left in the terminal, and Hannah kept crying and crying. Two young women about 18 years old got up and offered us their seats. That kindness really touched me.
How did Hannah and Her Friends come to be?
As we experienced Hannah's struggles and challenges, Charlie and I would talk about other families that were faced with similar circumstances. We thought of parents who have low incomes, trying to put food on the table. We were fortunate enough to have been blessed with Charlie's career and income, but we wondered how other families could afford some of the things our daughter needed and enjoyed.
Some of these things are simple, like a fence around a yard. Children with autism have a tendency to wander, and a fence might be just a nice thing for some people, but it's an absolute necessity for a family with an autistic child. Hannah has a special bike she uses and loves. It cost around $500. Most families can't just go out and spend that. So Charlie and I started talking about a foundation.
After his recovery from the gastric bypass surgery it really got going. Now we have full support of Notre Dame, which is great.
What has Hannah taught you?
People with special needs are God's teachers on this planet. Hannah came into my life and into my husband's life and put everything in perspective for us. When we might've been a little bit selfish, we had to put somebody else before us. Hannah makes us realize what's important in life. She taught us to have faith in God. I learned everything from Hannah.
Theresa Thomas is based in Elkhart, Indiana.