From the Archives: 2009

Written by Martha Addison

When a friend asked me to describe the experience of raising a child with disabilities, I thought of an article I read recently. It compared the anticipation of the birth of a child to planning a trip to an exotic destination, like Italy, only to find when the plane lands that you are in Holland. It’s not that Holland is a bad place—it has its own charms—it’s just a different place. The language is different. The sights are different. You meet different people who speak a different language. That’s my life raising Leah.

It all started on Mother’s Day weekend, just 2 weeks after my youngest son, Sam, was born. I was supposed to sing in church that Sunday morning but had to excuse myself because Leah, our 23-month-old daughter, came down with a fever that ended up lasting 3 weeks. At first, the doctors couldn’t find anything wrong. They treated her with antibiotics, but she didn’t get any better. Every day, it seemed, we were taking her to the hospital. After a couple of weeks, Leah was sent to Baptist Hospital in Winston-Salem where they did a spinal tap to check for meningitis. The tests said there was none and we came back home to Boone where Leah continued to get worse.

She had a continuous fever that ranged from 100 to 103 degrees. During the third week of her illness, we were sent back to Baptist Hospital. Following an X-ray of her head, a shunt was inserted to relieve pressure. Leah was admitted and ended up staying there for 3 weeks. I was able to stay with my infant son, Sam, at the Ronald McDonald House nearby during that time. What a wonderful blessing that place is.

During the whole ordeal, Leah would often rub her cheeks right below her eyes. We never thought anything about it at the time. The doctors had told us Leah couldn’t have a sinus infection because sinuses aren’t fully developed in a child her age. We had no reason not to trust our doctors but it turned out they were wrong. She did have a sinus infection which was why she was rubbing her cheeks. As it went untreated it grew and blew up into her brain causing meningitis and even some mini-strokes.

By the time the infection was cleared up, Leah had incurred serious, long-lasting damage to her health. At this point, she was in a vegetative state. The doctors gave us no hope for improvement and advised that we institutionalize her. They said she would be this way for the rest of her life, but I still remember my mama saying to them, “Our Lord has the last word on that.”

There was no way my husband, Dana, and I would put Leah in an institution. If you know Dana, you know he was going to do something. He immediately began treating Leah himself with water therapy in a warm water pool, and we also had a professional therapist working with Leah.

And things did improve. Within only 10 days of bringing Leah home, we were able to remove the feeding tube that doctors said Leah would need for the rest of her life. I began feeding her cream of wheat. After about a month she finally managed her first smile since she got sick. She started to recognize people once again and began to respond to stimuli.

At 4 years old we enrolled Leah in the Hardin Park Center for Exceptional Children. This is another one of those blessings we would never have experienced if our lives had gone the way we had planned them. The people there were wonderful caregivers and teachers. Leah learned so much. She went from there to Watauga High School, and since graduating from there has continued her education at Watauga Opportunities.

Leah still can’t care for her daily physical needs. She can’t walk, talk, or feed herself, but she is just like anyone else in many ways. She is very aware and responsive to what goes on around her. There are people she likes and people she doesn’t. Don’t talk to her like a baby or pat her on her cheeks unless you want to make her mad. She’s 25 years old and wants to be treated and spoken to like an adult.

I wouldn’t wish what we’ve been through on anyone. Raising a child with disabilities is very hard on a marriage and a family. But I also know that we—my whole family—wouldn’t be the same people we are if not for Leah’s sickness. I don’t know how people who don’t believe in prayer make it through a crisis as we have gone through. It was the prayers of hundreds of caring family members and friends in this community that brought us through and still give us strength day by day. If not for those prayers, who knows, but the doctors’ original prognosis might have been right. But like my mama said, “Our Lord has the last word.”