Special child brings family special blessings
Son is seen as a transforming and miraculous influence
By Linda DeVries
"There's so much pressure on parents today to terminate a pregnancy when prenatal testing shows that their child will have disabilities. We want parents to know that it is not horrible to have a child with special needs.
"Our son, Willie, has been a gift to our family. So much good has come into our lives because of him," says Lisa VanderMaazen-Bierstaker of Appleton. She and her husband, Mike, are members of St. Bernard Parish and are involved with Elizabeth Ministries, supporting other parents whose children are born with special needs.
Willie was born six years ago with myotubular myopathy, a disease that impairs muscle tone. Fewer than 10% of children born with this disease survive to age two. Diagnosed at 15 months, Willie is wheelchair bound, ventilator-dependent (because his respiratory muscles are so weak), and requires round-the-clock care.
"It was difficult to share our feelings even with each other after Willie was born," Mike said. "Talking with other parents and connecting with them helped us, and we want to offer that same kind of help to others."
Jeannie Hanneman, founder of Elizabeth Ministries, said, "The Bierstakers' story is the most powerful I've ever experienced. You couldn't ask for a more loving or happier family, in spite of the constant care demanded by their son, whose body is so dysfunctional. The rest of the world would have said, 'What a waste.' But they didn't. It's such a miracle, the transformation of a family."
"Our family life has been re-prioritized," Mike said. "We've learned to not sweat the small stuff. The biggest thing Willie has brought to our family is that he brought us closer to Christ. Lisa and I have grown closer over the last few years too, and we share our feelings with each other now."
"When Willie was born," Lisa said, "at first we were devastated. He spent a month in the hospital, and we were overwhelmed with all the machines and the total care he needed. We went through the whole grieving process. First came the guilt. Even though I had taken care of myself during my pregnancy, I kept asking myself what I'd done wrong. If I did everything right, I should have had a healthy baby, right? Wrong! It really helped to talk with other parents who had experienced similar things, to get our feelings out and learn from each other."
Now finishing kindergarten at Highlands Elementary School, Willie is homebound during the winter months to protect him from the flu and colds, which could cause pneumonia. He has nursing care 10 hours each weekday. A nurse also comes in on Saturday evenings after the family attends Mass, so Mike and Lisa can go out, usually accompanied by their 9-year-old daughter, Elisabeth.
"We were warned that having a disabled child would be hard on our daughter," Lisa recalled, "since we would need to spend so much time with Willie. But Elisabeth is the most compassionate child. She has a heart of gold."
Elisabeth plays with Willie and smiled as she talked about him. "Sometimes it's good, sometimes it's frustrating," she admitted. "But I love my brother."
Willie enjoys watching Veggie Tales videos and spending time on the computer. Though severely limited physically, he can operate the mouse. His speech is unintelligible, but his mind is sharp, and he tries hard to communicate through a voice-output device or other push-button instruments and with facial expressions.
"When Willie was first put on a ventilator," Lisa said, "a neurologist gave us the option to take him off of it. Of course, that would mean he would die. We couldn't do that! The message we want to get out is that it's not the end of the world to have a child with special needs. Yes, it's affected every part of our lives, but for the best."
"I even pray differently now," Lisa said. "I used to just pray for a cure. I still do, but I most often pray that we'll have the strength to do what we need to do and have wisdom to know which battles we should fight. God has even taught us how to fight battles, like with the insurance company or the school district or the medical system. They have learned to respect us. They know that we will only fight for what Willie really needs."
Mike, a commercial estimator, took two years off from his job soon after Willie was born to adapt their house to Willie's requirements and organize his nursing care. Mike is back working full-time, and Lisa continues her career as an attorney and family court commissioner, on a reduced schedule.
Recently, the Bierstakers moved into a new home with wide door and other accommodations to Willie's wheelchair; they added an elevator to take him to the second floor.
"God gave us two gifts through Willie," Mike said. "I've gotten more organized, and Lisa has far more patience. It's amazing how God has answered our prayers. We're now more active in our faith and in our church. And although family was always important to us, now it's even more so."
Mike and Lisa talk with other parents through Elizabeth Ministries and through contacts made through professionals. They are helping Elizabeth Ministries put together a video for parents who have had an unhealthy child.
"It's a good way to minister to people," Mike said. "I'd really like to talk with more men. I couldn't talk about my feelings for a long time, even though I needed to. I wish I could help other men do that early in the process."
The Bierstakers will participate in a pro-life conference at 2 p.m. Saturday, June 3, at St. Paul Church in Combined Locks. The conference will also feature the testimony of and a benefit concert from 6:30 to 8:30 p.m. by internationally renowned Irish tenor Mark Forrest. He and his wife, Muriel, have a son born with birth defects, including no muscle tone.
When prenatal tests showed abnormalities in the Forrests' next child, doctors encouraged an abortion. They refused, and the baby was born, even though he lived only five days. They are strong advocates for parents to realize the value of welcoming any child that God gives them.
Elizabeth Ministries have resources for parents who are struggling with a disabled child, including a book, Miracles Sometimes Hide, and two booklets, Prenatal Testing: A Closer Look and When Something's Wrong With Your Unborn Child.