This I Believe

Nuria - Madison, Wisconsin
Entered on April 10, 2007
Age Group: 30 - 50
Themes: children


When my daughter was born, I thought I was so unfortunate! I can still visualize her in the incubator with an intravenous needle on her head, tiny, with very little meat on her bones and attached to a monitor for her apnea and bradycardia. A cerebral dysfunction caused her developmental delays, communication problems, mental retardation, epilepsy and much, much more. She had three strabismus surgeries, wore braces on her ankles and had to be taught many things that kids learn by themselves. We never really knew what her exact diagnosis was; for practical purposes she was labeled autistic.

Years went by, full of challenges: early intervention education; therapies; medical evaluations; years of potty training; constipation; horrible tantrums and devastating 40-minute-long seizures. Of course, we knew there were parents with bigger challenges, but how could we not compare our lives with those of families with “normal” kids. How could this happen to us, educated, healthy parents who did all the right things?

Although some scars never heal, with the passage of time we learned to live with them and acceptance came, but I never thought I would learn to love them, too.

Today, kids live in a very harsh world and have to deal with peer pressure, drugs and bullies; but many of us, parents of children with severe cognitive disabilities, have found the reward and the blessings of our long-term sorrows.

We are the ones who never have to worry about our kids demanding designer clothes, crazy hairdos, tattoos and body piercing. I am the mother of a teenager whose demands are stuffed animals and baby toys, and when she dresses herself she is more concerned about wearing red than about the shape, brand and matching of her tops and pants.

Our kids won’t resort to drugs, alcohol and violence to cope with the pressures of life. They are also free of guilt; many are free of concerns about sex and free of having too many responsibilities. I count these blessings every day when I think about the many things my daughter could never do. She does not understand her limitations and therefore she is happy. Think how lucky some of us are, never having to worry about our kid’s happiness because in their little world they already are and always will be, as long as we provide for their basic needs. And, here is a bonus: we do not have to worry about what our purpose in life is. It’s very clear that our mission is to make sure that these kids reach their full potential and get all they need and deserve.

I believe we have been blessed with our child and the many things she has taught us: kindness, acceptance and patience. I believe these are angels among us. They are here to let us see the world through a different lens where all colors and shapes contribute to the harmony of the human race. This…I believe.