I’m going to start saying that time is our best teacher. Time provides us with experience, and it is through experience that we learn to open our minds. When that happens, we are able to overcome what scares us with a new perspective and only then can we move forward.
I grew up thinking of disability as a terrible monster that would harm and destroy the lives of those who were touched by it. As the mother of two kids with Down syndrome, disability is now a part of my world. Everything has changed in my mind and in the minds of those who are close to my family. Disability has a new meaning; it’s no longer the scary, limiting word that defines or dictates. Now it’s a non-invited friend who happened to arrive and stay forever. But we’re making it work.
Like any other unexpected or unplanned circumstance, disability wasn’t welcome at its time of arrival. I hated it for a while. Eventually, I found myself looking at it in a different way. I noticed one day, my hate and resentment were not there anymore. They were gone. And I was ready.
Disability seemed to be so strong and powerful before it hit my home, but as it happens with everyone else, in the living with it, I realized that disability is not invincible. It’s not stronger or more important than what I have in my heart, and it cannot touch or transform what I feel for my children: true love.
When I think back to our first years living with this unexpected guest, I have fond memories but remember a feeling of melancholy and incompetence, and I get stuck thinking of all the things it took away from us. I would blame disability for the bad times, the challenges, and all the stress I felt as a mother.
Eventually, disability showed itself off as what really is, a bold circumstance unable to create or influence our reality unless we let it. Our lives are still lead and directed by us, and disability, instead of dragging us down, has become a motivation in several circumstances.
Disability itself is totally disabled when people with disabilities are full of abilities and demonstrate how strong and faithful they can be when they are loved, accepted, and cherished as individual human beings.
Oh boy, now I look at us and smile. We have spent priceless moments together, hand in hand with disability. I treasure those times when I’ve seen my kids conquer it. The presence will always be here, but it’s not an enemy anymore. So much I’ve gotten used to it and now I often feel it represents the sincerity and harshness of a friend, pushing and pulling you hard sometimes to get the best of you out into the world. Like a good friend, it’s testing you, because it knows you can always be better, you can always be more creative, you have so much to give and to learn in life.
Disability is tough sometimes, and in those times I want to kick it in the ass. Then, I go back to the basis of love: acceptance. I review my notes and diary entries from years past, and I find the strength to smile one more time in spite of and sometimes because of disability. Life is not a race, and it is when we stop comparing ourselves to others that we discover our own unique strengths. Life doesn’t always follow a plan or a schedule, and learning to tackle the challenges is the real meaning of being alive.
Disability has never been strong enough to hush the joy of my children, or to destroy or disable our dreams as a family. Yes, it has forced us to adapt and many times change them all, but it hasn’t been a bad experience for us. We live, we learn, we love, and we dream big. Really big.
We´ve learned great things over the years with disability. The most important thing we’ve learned is the power that acceptance has in our lives. Accepting ourselves and one another is the first step to discover, love, and celebrate the unique circumstances that make up our lives.
Our life experience doesn’t have to be like everyone else’s to be good. Life is learning to do our best and to think outside the box is the best way to discover real joy, spirituality and true passion to live and love, with and without disability.