If it ain’t broke, don’t try to fix it

Thoughts of a “normal” person

I am what most people would consider “normal”. I have no marked physical disabilities, I went to school, can read and write, I have a job, pay rent and live what most people would call a “normal” life. There is one thing that is not normal about my life. I have the great pleasure of having a Down’s syndrome brother. Most people would not understand how this is a pleasure but until you have the chance of having your life touched by someone as special as Randy (that is my brothers’ name) I can see how it would be hard to believe.

Most people see special kids -like those that have Down’s syndrome- as big responsibilities, someone you will always have to take care of and that will always depend on you, someone who most likely lacks some basic social skills, someone who can not be left alone, that can not understand basic rules for daily living, someone that lives in his own world. All this is true. Randy will depend on my parents and me for the rest of his life. But what most “normal” people don’t understand is that I will depend on him for the rest of mine.

What most “normal” people don’t understand is that Randy is the single most loving person I know. He would never do anything with the purpose of harming anyone. He will go out of his way to give you a hug and a kiss when you need it the most and when you least expect it. He can make the worst of problems seem small and the biggest joys even bigger. He can look at you and smile and change your mood and your day. He will give anyone anything they need if it is within his reach. He will laugh with you or cry with you without even knowing what is going on, he does not need to understand anything, he feels what you are feeling, he is kind to those he knows and to people he meets for the first time. He does not know what social differences are. He does not hold anything against you. He doesn’t bargain to give you affection or ask for anything in return. He doesn’t know what the word hate is but is an expert on the word love. He is the most organized person I know, everything in his life has a place and so does everyone he meets.

I remember days when my family would have to decide who was going to pick him up at school. Everyone would volunteer. We all knew that the second he saw you arrive at school and got in the car he would look at you and smile and your day would change, traffic would not seem so bad, and office problems would disappear – at least for a while. You could sing along to Disney songs you have heard a million times before and feel like you where listening for the first time when you saw the excitement on his face.

I remember taking big groups of people to Disneyworld as part of our work for our family travel agency and even though some years we would go 4 times, in the high season when lines could be up to 2 hours long, just looking at his face would make it all worth while. He knows those parks inside and out. He knows every single movie, character, song, parade and attraction. He knows the order we follow when we visit the parks and even though we’ve tried, we could never fool him or change our route without his saying something.

Randy now has a job. He works at the local supermarket where he bags in the 10 items or less check-out counter, helps stock, returns items and carts left around the store to their places. But most of all he smiles at people and will never say no to a hug or a kiss. He started there with a teacher who would supervise him and stay with him all afternoon. We thought this was as good as it was going to get and we where thankful to the owners of the supermarket – family friends for years – but were not sure what to expect. The owners where so impressed with him that we were told he no longer needed supervision and that we could leave him there by himself all afternoon. He is loved by the other people he works with to the point that for his last birthday one cake was no longer enough. He is popular everywhere he goes. We are now known as Randy’s family. Everywhere I go at least one person will come up to me and ask “Are you Randy’s sister?” and few things make me feel as proud as I feel when I answer that question.

I have always known I love Randy more than anyone else in my life, but I never sat down and thought about the place he occupied in the world until a few months ago when door to door religious preachers told my mom that someday there would be a cure for him, that he could be normal. This made me think - would I ever want him to be “normal”? I am by no means implying that I think everyone should have Down’s syndrome or that sometimes I don’t wish he could do more things or experience different things nor am I implying that “normal” people are not nice or are not capable of honesty, love and kindness. What I am saying though is that, in my opinion there are a lot of other people, in most cases “normal” people, who should be ahead of him in line to get fixed or to get cured. What I am saying is that I think we need more “normal” people with the simple values that Randy has, more people to understand what is really important in life, how simple and easy it is to touch someone’s life, more people to understand that no matter what your political, economical or social position we are all the same and we need to be here for each other. What I am saying is why fix something that isn’t broke?

If Randy depending on us means he is always there for a hug or a kiss, if his lacking some social skills means we always get a laugh, if living in his own world of Disney characters, movies and songs where each of us reminds him of a different character and movie, if being known most of the time as Randy’s sister and sometimes not having enough water in our tank because he doesn’t understand and takes long showers is what some “normal” people see as misfortunes, then I wish these misfortunes on everyone and would not change them or him for the world. He is the only person that I can truly say dances like no one is watching, sings like no one is listening, loves like he’s never been hurt and lives like there’s no tomorrow

I hope after you read this, you look at people in a different way, that you let someone touch your life and be there for you no matter what and that you try to do that for people that need you, that we don’t wait for a natural disaster or a war to realize what is really important and even though we have to go on with our normal lives, and work and pay bills and deal with things we may not like and may be very difficult, we keep what is really important in perspective and we know where we can turn when we need a hug. And hey! if you can’t find a “normal” person to be there for you I’m sure Randy would not mind adding someone to his list.