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What Would He Be Like If He Was Not Born with Down Syndrome?

Disponible en Español, aquí

The most curious questions always come from the mouths of innocents, those who are not afraid to make mistakes, or hurt others’ feelings when expressing their thoughts or concerns.

Some days ago, a little friend of ours came over for a play date. Like any other 6-year-old girl, she talks a lot. I had previously explained to her why Emir and Ayelén look kind of different. She has been always surprised and interested to know more about them. Since meeting them, she says, she understands them better than other people. I can’t deny that talking to her is always a delight and easier than talking to many adults.

Well, as usual, the other day she got me with a tricky but simple question. “How would they be if they didn’t have Down syndrome?” she asked.

Years ago, if I’d asked myself this question, I would’ve felt it was a sin. I wouldn’t have dared to question God or my love for my kids. I would have felt guilty and upset with myself for even thinking about it. Asking that question would have meant a lack of love and acceptance from myself. Even answering would have broken my heart.

But the amazing and wonderful thing about love and true acceptance is that one day, you wake up to the realization of just how much you have matured and evolved. There is a time in our lives when questions are just that, simple questions that may lead us to deep reflection.

How do you imagine them without Down syndrome? I asked her.

 

  • I can imagine them with bigger eyes, she said. 1 of 4
    ojosazulesalcielobabble

    And I don't think their eyes are not big enough, but for a weird reason they look smaller, she said.

     

    You are right, I told her. Is not that their eyes are not big enough, but it's the way people perceive them. But I'm sure they see as well as you do. The world doesn't seem different from their almond-shaped eyes.

     

  • They would probably talk more, and I would be able to understand them much better … 2 of 4
    talkmore

    ... And it's not that I don't get them, but sometimes I have to pay more attention and slow down to be able to understand them, she said.

     

    You are right again. Is not understanding them that is hard, but not everyone is willing to slow down as you do, to listen to them and give them the time and attention they need to be understood.

  • Maybe Emir would be taller, and Ayelen would like to play outside on the monkey bars more. 3 of 4
    taller

    I'm sure Emir would be taller, but I'm not sure about Ayelén, I said.

     

  • She continued … 4 of 4
    morethanyouthink

    However, the most important thing is that we love them the way they are. When I look at them, I don't see any difference but some times I can´t help myself from seeing different. I'm not sure if you understand what I'm trying to explain.

     

    More than you think, I said.

     

And the play date kept going. Laughter, tears, playing and fights. She got her answer, but my mind was just starting to process hers.

 Would I have loved them more or less if they were not born with Down syndrome? I don’t think so.

 Would they be happier or better if they didn’t have this extra chromosome? No way.

And even knowing that this question may generate a great discussion between those who have a child with special needs and those who do not, the truth is that it’s absolutely possible to find happiness while living with a disability, or raising a child with one.

Breaking the prejudice is essential to start seeing life from another perspective, to celebrate its miracle and to find to the tools to believe in different ways of living and loving.

As the mother of two kids with Down syndrome, I know that sometimes the future seems scary. As parents, we may feel overwhelmed when we try to look at the future from where we stand today. However, all these years have taught me something. And that is that the only thing I can do is to focus on the present, give them a typical life without limitations, and never deprive them, under the guise of protecting them, of the natural opportunity to learn from their triumphs and mistakes.

In the hardest times of life, when I have felt lost and insecure about the future, I have learned the most important lesson. The problem is not their disability or their extra chromosome; it is instead my lack of faith in myself and in love. Everything starts in our hearts, and from the way we perceive the ones we love.

I don’t know how they would have been if they were not born with Down syndrome, but I know how they are now, and I love and accept them just the way they are.

Sometimes people think that loving a child with special needs is a heroic act. But loving your own child is nothing out of the ordinary. It is natural, motivating, and the reason why we evolve as individuals to become parents.

I guess the most important lesson is to understand that love can’t ever be underestimated. Once we get that, everything else seems clearer—even the questions we were afraid to ask and the answers we were afraid to ponder.

“In memory of Ethan Saylor who would have been 27 years old today; January 09, 2013″. Please, use the hashtag #Toast4Ethan to claim for justice and support his family. ” Let’s keep sharing our stories and love for our kids with Down syndrome. That’s the best way to educate our communities. Ignorance is hurtful.

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