A friend of ours came over for a playdate with Emir and Ayelén. With 6 years old she’s curious and talks a lot. She knows that Emir and Ayelen have Down syndrome, and it seems to be a very interesting topic for her to discuss, so 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 when love and true acceptance are in your heart, 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. And I don’t think their eyes are not big enough, but for a weird reason they look smaller.
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.
She kept going…
They would probably talk more, and I would be able to understand them much better. 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.
You are right again. Is not that 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 Ayelén would like to play outside on the monkey bars more.
I’m sure Emir would be taller, but I’m not sure about Ayelén, I said.
She continued… However the most important 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 playdate 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 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.