Life Unexpected by Susan

Life's Lottery

Every year there are 353 015 births in the world. At every birth, every mother has a tiny chance to give birth to a sick child. Life is like a giant lottery game, except that instead of winning money you have a child born with an illness. Most of the time people have healthy children and live happily ever after. I am going to tell you about the others, the winners of the Life’s lottery. I call them winners because they are people who, thanks to their children, their gifts, learn so much about life than you and I usually do.

Having a handicapped child isn't an easy thing every day. You have to deal with the treatments, the doctor’s meetings, the medical injections, the hospitalizations... You feel like it is your fault is sick. Many parents don't understand at first why their child is sick and so they blame themselves. After a certain time, they start to stop looking for someone to blame and start enjoying what they have. Love wins.

Most people can do anything they want, when they want. For handicapped kids, life is a struggle every day. They have to deal with the fact that their child is sick, and accept people look at them all the time because they are different from other kids. Consequently, I’d like to remind you to remember that our society is the responsibility for everyone and we can’t live in a world of selfishness. As we have healthy lives, it is our duty to help people who do not have the chance to be healthy. As a confirmation of my talk, I have interviewed C., she is the mother of L. an 6 year old kid who was born with a mental and motor handicap.

S: Hello C. !
C: Hello Susan!
S : So today I’m going to ask you questions about your son L. He is 6 years old and has a rare disease called a deletion. Can you tell us more about this illness?
C : A deletion is a mutation in which a part of a chromosome is missing. It is a loss of genetic material. Every person who has this disease is different because the mutation takes different forms.  For now, there is no treatment available to heal it. The only way to help the patient progress is to stimulate him so that he can develop his mental and motor functions.
S : How old was he when the doctors gave you their diagnostic ?
C : He was 14 months old, but I had been suspicious since he was only 7 months because he wasn’t like other kids. I don’t like to say he wasn’t “normal” because there is no right or wrong way to be normal in my opinion. After a multitude of examinations, the doctors said that he was sick.
S : Wow, it must have been really tough news to handle ! How did you react? Did you have to drop certain things?
C : Yes, sure it was really tough, I was like “My God, this isn’t happening. No”. Then I had to stop working because we had so many meetings with doctors and you know a disabled child requires a lot of attention and also I was too sad to be focused on my work!
S : Did the attitude of your entourage change when they heard that your son was sick?
C : Yes, and they changed their minds and became more positive about the handicapped people. I think they’ve learned over time that we all have to enjoy what we have because we don’t know the future has in store for us. The fact that my son is handicapped made them realise that it can happen to everyone so you have to share and spend time with people that you love.
S : Have people ever told you things that have hurt your feelings about your son?
C : Yes, but not a lot, a maximum of 3 times. It is not a recurrent thing. I think people are just clumsy.
S : Do you have to endure people staring at you  when you are with L. ?
C : Yes, all the time, but you know humans are curious and clumsy. It doesn’t bother me anymore; I’m not ashamed of my son.
S : Have you ever wished that he hadn’t been born and that you’d never had that child ?
C : Not at all ! If I had to do it again, I would. I love my son. He gives lots of love. You know handicapped children are more natural; they give you everything. Besides, I didn’t chose him, he chose me.
S : Your son has been hospitalized many times, do you have a special memory of one of his 
hospitalizations ?
C : Yes, I especially remember his first Christmas, which was in hospital. It was one of the hardest periods of my life. I couldn’t stay with him the night so I only could see him during the day and when visiting hours were over I had to go. He spent his first Christmas alone. It was a tough period because was still under the impact of the announcement and I couldn’t see my son as I wanted to.
S : Do you think people can be parents of an handicapped child and still be a happy parents?
C : Yes of course. I mean I am, so why would other not be? But you know there is always the fear that you will die and leave your child without anyone to take care of him like you do. However I think, it is the fear every parent has whether their child is handicapped or not.
S : What has Loic taught you? How has he changed you?
C : He has  taught me tolerance and showed me how strong I was. You never know how strong you are until you have to face difficulties! I also learned that you don’t know what future has for you so you don’t need to be perfect, you just need to be happy.
S : So to finish if you could spread a message what would it be ?
C : It would be :“Be Tolerant, because you are not protected from anything ”

Our society needs to develop solidarity. Many associations already exist in France, the most famous is Téléthon, an association that raises money for the research in rare diseases. In our school, Mrs Woods is the president of Ponto Link for Life, an association that raises money by holding a talent exhibit of artwork that people have given for free. The money earned is used to help hospitalized children. So you can help them by giving them your art project or by going to the talent exhibit and buying the art creations.