Delta Winds: A Magazine of Student
Being a mom is every girl's dream. I grew up watching my mom doing things around the house and taking care of us four kids. She was a great mother and a wonderful wife. She was very proud to have four healthy kids. I grew up in an environment where being healthy was normal. Like any other girl, I played with friends just like me, and our games and dreams were as normal as we were. I had the same healthy environment all the way through high school. All my friends I grew up with talked about our future of having children and having the perfect family. We never talked about what if something went wrong. In our minds everything was beautiful and so perfect I could not wait to be there living my own dream.
I was eighteen when I got married. So I was a child coming out of a perfect world and getting into a life that every girl dreams about for so many years. I was very happy being married, and even happier when four months later I found out I was going to have a baby. I was nineteen-years-old when I had Michael. Everything was so wonderful then. I remember myself being so excited to be a mother. I started to eat better every day; doctors' appointments were very important to me because I could ask them what I needed to do. At nineteen-years-old, I was not a concern for the doctors. I went to regular check ups; everything looked great: sonograms, the baby's heart beat, blood pressure, the basics. The doctor said not a problem with my pregnancy. Everything was the way it should be. I personally had no concern because my husband and I are very healthy people and so are our families.
After nine months reality knocked on my door; my biggest dream became a nightmare. The perfect little child I always wanted was not even close to being perfect. He is a very special little boy with a syndrome called Prader-Willi. It was first discovered by Dr. Andres Prader and Dr. Heinrich Willi in 1956. Thirty years after having been discovered, the syndrome is not known by many people, many doctors or hospitals. This syndrome is very special and very uncommon. It happens one in ten to fifteen thousand people. I felt like I hit the jackpot. Out of fifteen thousand babies, it had to be mine.
My nightmare began when I started reading as much as possible about Prader-Willi Syndrome (P.W.S.). I contacted many families with children with this syndrome, and all the stories I heard and read didn't give much hope for our future as a family, like I had always dreamed of. There are many problems and characteristics of a child with this special syndrome. A few of the most important are eating disorders and behavior problems. To me and my doctors, these two characteristics are related together. Early intervention and management are very helpful to the child's future. Characteristics that are involved with P.W.S. are mental development, personality development, and many others.
As I mentioned before, eating disorders are one of the main characteristics for a P.W.S. A syndrome is a group of signs and symptoms that occur together and characterize a disease or disorder. When my son was found to have this syndrome, I tried to keep Michael from getting overweight. The first years were fairly easy because I was with him all the time. Things got more difficult when he was away from me, going to school or visiting friends and family. Even though I explained to them all about his eating problems, it was and is still hard to control his appetite. The best way I found is to keep food out of his reach, and have him on a special diet all the time--watching calories, fats and sugar in every product I purchase. Michael knows that, and he is pretty much aware of what is good or bad for him. Michael, after all these years, has never been overweight. He tries very hard to keep his weight down. One of the things we do is lots of exercise every day. He has been involved in many sports like swimming, soccer, and baseball. He also loves to ride his bike. So far he has not complained about doing much. I think it is because I have worked with him since an early age.
Before giving birth, I was never exposed to such a situation. I never interacted with people with disabilities. I did not ever think or dream that I could be dealing with people with disabilities, much less having one of my own. At the beginning of this situation, I felt that the doctors were making a big mistake, but now I realize that God has given me a very special child to take care of and that I need to be strong and responsible for him. So I learned as much as I could about the syndrome and my child. My only focus was and still is to do my best so he can be his best too.
My husband was with us for a short period of time. After our son was diagnosed with this syndrome, he could not face reality. The fact of having a child with a disability could not be accepted by his family, at least that is the way I saw it. Since that time and eleven years later, I have learned so much about life through my son's disabilities and his wonderful personality that some of the pain and disappointment I once felt about life have disappeared. My son has taught me to be patient, understanding, organized, honest, and many other little qualities that maybe I would never have learned if I had not had him. We also learn to make time to listen to each other too, spend time together, and to appreciate the happy moments we get to have.
The best way to handle this situation is on a daily basis, one day at a time without thinking about the future, with love, lots of dedication, hope, belief in your child, and lots of patience. At home, the rules for good behavior are very important, and a daily diet is also important. Keeping Michael busy and active has helped him and me reach our main goals, and without knowing it we are accomplishing many more. I have never been able to keep him at home with me. He is a very healthy boy, other than his syndrome. He has never been sick. I think that is because his diet has always been well-balanced.
I sometimes daydream and wonder how Michael would be without this syndrome. Would I be the same responsible, patient, organized mother I am now? I think everyone has a purpose in life. A child like Mike makes me realize how beautiful life is, and how important it is not to waste time. Life only gives us one chance to be good, and we need to take advantage of it.