Posts Tagged ‘down syndrome’

What Is “Normal”?

Friday, January 15th, 2010

Monica Gomez

Antonio and Thomas Meet

Antonio and Thomas Meet

Kids with Down Syndrome are said to be “so affectionate and loving”. Being the mother of one, I think it’s not exactly so. It’s not that they are affectionate and angelically loving just as a characteristic of their condition. They have mental retardation, which means that their minds do not develop in the way our minds typically do. That implies that they do not have all the inhibitions that we do.

Typically, a child who starts socializing in kindergarten learns what’s polite and what’s not; what to do and what not to do. You kiss the people your Mum tells you to. You stay away from strangers. Kids with Down Syndrome are not born with that learning ability, so they act according to what they feel, regardless of whether it is socially acceptable or not. I could tell many funny anecdotes about that, but the one that comes to mind happened on a plane when I was flying with my son from Buenos Aires to New York. Tommy was three years old then. I stood up to take him to the toilet. There was a woman some rows behind. She saw that I was picking up a child, and put on the face that says, “Oh how nice, here comes a little child.” When we went past her, she saw his Down Syndrome face, and was shocked. But to cover that shock she uttered, “Ohhhhh, they’re soooo affectionate!” At that exact moment, Tommy slapped her face. My “normal” socialized mind made me say, “No, Tommy, you don’t do that.” However, I secretly wanted to congratulate him. He had understood what this woman was feeling, and he acted accordingly. It was his response to her stupidity.

As you see, instead of acting rationally, he acts with his heart. Now, what’s normal in that situation; following your mind, or following your heart? Where is “normality” written down? Sometimes I have an image of Tommy and people like him looking at us and saying, “Poor little creatures. They suffer from an overdose of mental analysis, and in doing so, they’re missing the basic and wonderful things on Earth” I think that all people with disabilities are different. Oh, yes, they definitely are. But different in what sense?

Let me explain. To me, they are different in the sense that they’ve dealt with tragedy at least once in their lives, and they not only carried on but also overcame daily challenges that are unimaginable to us “normals”. I think that all those experiences give them a completely different point of view of life. Everyday chores that we take for granted, like making coffee or using the toilet, can be a real challenge for these people. Not to mention social acceptance, financial trouble and so on.

So that’s what makes them special. I don’t use the word “special” the way it is usually used by people without disabilities. Some say, “a person with different abilities” instead of “disabled”. However you call it, they live with tremendous challenges! The fact of facing these tribulations every single day provides a kind of maturity and consciousness that we “normals” don’t have. I think we have a lot to learn from “special people”, which they are! Their hearts vibrate at a different rate. I myself learn a lot from my son and my friends Vivian and Ann, who suffered from back injuries and are in wheelchairs. And I humbly thank them for that.

If only we normal people could open up to diversity and be ready to take what others have to offer, the world could become a more peaceful place in which to live.

Choices

Sunday, December 20th, 2009

Monica Gomez

Monica Chooses Her Son

Monica Chooses Her Son

I once heard Ingrid Bergman say,

“If I had my life to live over again and I had the memory of what I had passed, then I would avoid certain mistakes. But if I didn’t have the memory I would do exactly the same because I’m happy with my life and I see no reason why I shouldn’t live it over again.”

I guess not many people can say that. What’s the secret of being happy with our lives? I think it lies in choosing; in being aware of what choices we make. Many times, when facing a decision, we let ourselves be influenced by outside voices: The must’s and should’s – what is socially correct – what our parents or partners or children are expecting from us. We don’t realize that we’re leaving ourselves behind. We’re not being honest with ourselves. It’s as if we don’t trust our inner knowledge.

How many times have you acted upon a feeling that came from your gut? Unfortunately, we’re not taught to look inside. On the contrary, we are encouraged to focus outside, on other people’s thoughts and considerations. And that’s often how we try to make our choices: based on opinions, likes, and dislikes that do not belong to us. In fact, we might barely know ourselves, so how can we see what we really want? Then we feel disappointed, injured, lost and of course we blame everybody else. We forget that the choice was made by ourselves. Nobody is pointing a gun at us. We have free choice. Maybe you’re thinking that in some cases you are not free to choose. Let me give you an example from my own life experience.

My baby who has Down Syndrome was 4 months old. I had a lot of family problems, and I was really feeling overwhelmed with the responsibility of caring for the baby on my own. I missed my job, my friends, my freedom. I felt like a victim. One day, a friend of mine told me: “Well, it’s only a matter of choosing.” I defended myself. “No”, I said. “I have a disabled kid and I can’t choose. I can’t send him back, right?”. He retorted, “You’re right. All I’m saying is that perhaps you can choose to put him in an Institution and work hard in order to pay for all his needs.” I was speechless. He was right! I had a choice; nobody was forcing me to do anything. I was obviously choosing to be close to my baby, but I became aware that I was not a victim. I was choosing.

It is my experience that if I choose carefully and consciously, I never regret what I have done. Precisely because I chose it, I thought about it, I dealt with it, and I chose what I considered was the best. It’s true that maybe later I found out that I had made a mistake. But that’s fine. It was just that: I made a mistake because I didn’t know. No guilt, no blame, no resentment. Just human nature!

If we can acknowledge the choices we make, we can get closer to Bergman’s statement. Choose consciously, from your heart, and be responsible for that. It’ll help you build self-confidence and peace of mind.

We Are Not Victims

Tuesday, December 8th, 2009

Monica Gomez

Through the Valley of Death

Through the Valley of Death

February 14, 1998

A woman gives birth to her son, Tomas. At the moment of birth, the baby is diagnosed with Down Syndrome; a real shock for the mother. As you can imagine, nobody wants to have a disabled child. The baby´s father cannot cope with this reality and leaves. The woman is an only child, and has the support of her parents, but when the baby is only 20 days old, this lady´s mother is diagnosed with pancreatic cancer.

What’s this I’m telling you? Is it the plot of a new soap opera? Not at all. I’m telling you a moment in my own life. That woman I’m talking about is myself. In less than a month, I lost my husband, I lost my job (I had to quit) and was alone with a Down child and a Mum with cancer. Do you think I felt like a victim? Of course, you bet I did!

Some years before, in a Personal Growth Seminar, I had learned that we’re never victims. The idea was that we always create, cause or permit whatever happens to us. Now, what had I done to create this crisis in my life? We could split hairs and say that I hadn’t wanted to have genetic tests done during the pregnancy because I was not ready to abort in case of problems. So, in a way, I had allowed this child to be born with a disability. OK, we could say that.

However, what had I done in regard to my Mum´s cancer? In that case, I could find no explanation of how I had permitted that to happen to me. I felt a real victim.

Let’s have a look at other examples, on a bigger scale. What did the Jewish people do for the Holocaust to happen? What did the people who died in the World Trade Center do to deserve that horrible death? What did their families do, for that matter? What did African kids do to be born with AIDS?

Some people who believe in reincarnation find comfort believing that the answer to all this is that they bring karma from past lives. That may be… who knows? Maybe my situation was karma, but I didn’t feel any comfort from that thought!

Yesterday I saw on TV a survivor of the atomic bombs of Nagasaki and Hiroshima. This Japanese man was saying something that really surprised me. He stated that Japan had been responsible for the bombing attacks, because the U.S. had been urging an end to the war, but the Japanese leaders had refused. He believed that, in that way, the Japanese had caused the tragedies. That is, he thought that – even though the use of the atomic bomb was not justified at all – there existed a shared responsibility on the part of Japan. He concluded his speech by saying that both the American and Japanese governments should express their regret publicly for the atrocities that they caused.

All this confirmed in me that we’re not really victims. But let’s leave aside these drastic cases and come back to my humble story. There was a moment when I realized that I could choose how to respond, how to face whatever was happening to me. What was I going to do with this situation that life was bringing me? It was my choice.

I remembered Christopher Reeve, the former Superman who suffered an accident and was paralyzed. Here’s what he wrote about his own tragedy:

“It’s not about what happened to you, but whatever you do with what happened. A true test for a human being is what you do after the catastrophe. It’s what you do with it. This is not a road I’d have picked but a lot of times things get picked for you. Either I give in, or I say, ‘All right, let’s make the best out of this’.”

So… what could I do with my situation? I could really get depressed. Of course. I remember my own therapist telling me that any other person in my situation would spend their days crying in bed. Well, I felt I couldn’t even “afford the luxury” of doing that, as I had a baby and a sick Mum to look after, which reinforced my feeling of being a victim.

All this went on until I started becoming aware that I had a choice. I could give up, or I could try to survive. I had no idea how to, but it was a question of Attitude. It was like choosing between dying or staying alive.

The film Castaway shows this very clearly when Tom Hanks’ character says: “Keep breathing. You never know what the tide might bring in tomorrow.”

Another example is that of Viktor Frankl, a psychologist whose whole family died in the Holocaust. In the worst moments of suffering, Frankl tried to make sense of what he was going through. He said, “You can deprive me of everything, even of my dignity, but the only thing that can’t be taken away from me is my capacity of choosing the attitude with which I’m going to face the things that happen to me”. He also stated, “That which doesn’t kill me, makes me stronger”.

The point that I´d like to make clear is that you can choose how to respond, you have the power to choose your own attitude toward your predicaments. You can’t choose whatever happens to you, but nobody can deprive you of your free will to choose your own attitude. You can despair and give up (even commit suicide!), or – while you go through your pain – you can go on breathing and open up that magic door that appears when you state your intention to survive, to move forward, and to try to make the best of it.

Those who know me know that that magical door opened up and took me a long way that I would never have even imagined. Exactly five years after my crisis, I got married to a wonderful man who adopted Tomas, and with whom we adventured out of our native Argentina in search of a better future in Italy. If I had given in, I would never be telling you this story right now!

So remember: we’re not really victims. Whenever we have to undergo a tragedy, we have the great power and the wonderful freedom to choose how we’re going to deal with it.

Bear it in mind. It’s up to you. You’re always the master of your life!