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Life with Katie: My child with Cerebral Palsy

I am guessing if you are reading this article you either have child with Cerebral Palsy or know someone who has this condition. If you do not know what Cerebral Palsy is, I will tell you in layman’s terms. It means brain damage. The damage can be either so minor that it is hardly noticeable or it can be severe mental and physical damage. My daughter was born with Cerebral Palsy because while in the womb, her intestine twisted causing my wife and her to be under stress. Katie had six strokes before she was born. The damage caused her to be partially paralyzed on the left side of her body.

Now this article is about how my wife and I dealt with raising her. Recently, I joined a personal development website. As I have been listening and watching some of the audios and videos, I have realized that some of the virtues taught, we have been doing for years. We have just not had any training. Probably like yourself, we had some of these qualities, but did not know how to harness or exploit them.

The first feelings we had were uncertainty for the future. We were both young. But really, no one is ever ready for anything like this. At first, no one would tell us what was wrong or what to do. All we could think was we had the worst situation ever. We did not know if it was a freak accident or genetic. Would this affect any other children we had? But after the shock wore off, we realized God had blessed us. Other babies in the intensive nursery weighted around 2 lbs. Our Katie weighted over 6 lbs. She stayed in the hospital for 51 days. We were told at the beginning that she would be in the intensive nursery for possibly 6 months.

From this uncertainty of the future, my wife and I learned our first lesson when dealing with a handicapped child, which was to realize how blessed we were. We had family members who had helped us get through the initial shock. I had a good job with insurance that paid almost all of the medical expenses. Our child was alive. You really do not understand how strong you are until something like this happens. All you can really do is try to take care of the moment. Abraham Lincoln once said “The best thing about the future is that it comes only one day at a time.”

The next thing we learned was to make a commitment to our child. A quote I enjoy by Marian Wright Edelman goes like this, “You are not obligated to win. You are obligated to keep trying to do the best you can every day.” It was almost a year before anyone would tell us she had Cerebral Palsy. We knew something was wrong, but did not know what it was. She was not doing the things that normal babies could do. After we were told she had Cerebral Palsy, my wife and I had to make a commitment to Katie that we would do whatever we needed to do to help her function in a “normal” world. We could hide her from the world or treat her like our other children. We chose to do the best we could to help her.

After you make the commitment, you have to be willing to follow through. You are going to be the person taking them to the doctors. You are going to be focusing a lot of time on helping this person. Katie could not walk by herself until she was eight years old. But my wife and I decide we would not put her in a wheelchair if she could at least walk with help. They have a therapy called Conductive Education. We sent her to Canada three times for five-week courses. We actually raised the money to send her, and for us to stay with her, by holding garage sales. We would hold one every weekend in different locations for two to three months. We would tell people the garage sale money was being used to help Katie get to the camp. Do you know that people would bring us stuff to sell or tell us to come by and pick up stuff. You may not believe this, but I had a sixteen-foot horse trailer loaded up when I got ready to have the sale. By the end of the sale, we were restocked with new items. Also, sometimes people would donate money. My wife, our family members and I were willing raise the money to get her to the camp. Remember, “Where the willingness is great the difficulties cannot be great.” says Niccolo Machiavelli

Now, the most important thing I have learned in my life with Katie is never give up. Now I understand that not everyone has the same circumstance, but set goals. Something always told me that she could walk. Now I knew she would not walk perfect, but she would walk. And through her efforts and the effort of my wife, others, and me, she can walk. We also knew she needed an education like the other kids, so we required her to do the same as other kids. It always took her longer to do everything. But she has ended up graduating early and is now in college working on a degree in accounting. We are still helping her adjust. But our goal is for her to be as independent as she possibly can. Do not hide the person. Try to include them in everything you do. We always took our daughter out in public. When she was in school, we pushed her to do her best. Ruth Gordon once said, “Never give up and never face the facts.”

I believe that when facing the challenges of dealing with a Cerebral Palsy person or any person with a handicap, there are three things to remember that can help you through. First, realize when the uncertainty of the future overwhelms you, that you have family and friend to support and help you through these trying times. If you are the one helping the handicap person, you will need to make a commitment and be willing to go the distance. And last, but most important, never give up. There are going to be times when you want to throw in the towel. Take a step back, and grab a breath. Think about what Booker T. Washington once said, “Success is to be measured not so much by the position that one has reached in life as by the obstacles which he has overcome.” I am a firm believer that God does not give a person more than they can handle. If you are a parent of a Cerebral Palsy child, God has given you a special gift. He has entrusted you a special person. Do not be afraid to pray. Sometimes that may be the only thing that will get you through the hard times.

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