July 22, 2012


This week's blog hop asks the following questions:

For parents of children with disabilities: How have earlier interactions with individuals with Down syndrome – or other disabilities influence(d) how you felt and feel about your child’s diagnosis?

For people with disabilities: How have earlier interactions with individuals with disabilities influenced how you feel about your diagnosis?

Where I grew up I never saw a person with down syndrome or any other disability, for that matter. I was educated in a private school, which made my chances of having a classmate with a disability even slimmer. Once in a while I heard about a family who lost their baby "at birth", which to me at the time suggested death, but I have since learned has two meanings.

The first person I met with down syndrome was on June 19, 1993 and her name was Alex. I do not know if that was a good thing or a bad thing, I only know when Alex was born we saw a baby, who just happened to have an extra chromosome. Sure the first weeks were hard, but in our hearts we believed Alex would grow, thrive and contribute just like her siblings and just like her peers.

The following excerpt from our book of lessons of down syndrome, shares how I feel about how down syndrome has impacted on our lives, the lives of our families and our community. Down syndrome has taught us what celebrate really means.


As with many of the other verbs celebrate has two meanings to us. We celebrate the pure joy of Alex; she has enriched our lives in ways I never knew existed. We have learned compassion, caring, and acceptance. We have become better people.

We have met incredible families who have children with special needs, as well as many others with special needs. We have met caring and skilled professionals. These are people we are privileged to know; all because of Alex and down syndrome. We are honored to have this opportunity in our lives. Alex has touched many people in her life and will continue to do so.

We also celebrate the lessons of life we have learned from Alex. Alex has taught us not to sweat the small stuff, to take one day at a time, and enjoy each day. Yes, there are challenges in Alex’s life as well as ours, but we try to look a the complete picture; what happened in our day that we can celebrate? There is always something and Alex has taught us this.

As an example, I relate the “stop and smell the roses” syndrome all parents of children with down syndrome share. It is the celebration of life I believe we used to miss in our everyday lives. Thank you Alex.

I learned early on that our special kids like to enjoy the moment and not rush through life. One of our concerns over the years with Alex is her lack of urgency in everything. She takes longer to get ready in the morning, longer with her meals, and her showers last forever. She enjoys picking out her clothes, her food and the feeling of water on her body. She follows a simple rule, why rush?

The list goes on and on, Alex walks slowly, cleans her room slowly, and is the last one to get in the car when we need to get somewhere. Obviously, we make adjustments for Alex and give her extra time, but sometimes we do not give her enough time. Or I might even suggest, it does not matter how long we give her, she is still working at her own speed.

What we have all learned from Alex is we should stop and smell the roses. We need to appreciate the small stuff. Taking time to talk to our friends, or relax a bit, is necessary to maintain lower stress levels. The cute puppy on our walk, or the baby in the stroller do warrant a few extra minutes of our time. The book with the pretty pictures or the comics in the paper do need a few extra minutes.

Alex is also the one who wants to spend the time to have family game night. She is the one that cherishes the few minutes we can all spend together, and she is the one that supports us all in our activities. She will go to every play that her sister is in, every snowboard competition her brother participates in, and every tennis match I play. She begs her dad for special time together and appreciates her family more than anyone I know.

Alex does this all in her own independent time. She doesn’t rush through life, nor does she waste a moment in her own life. She is the most magical, loyal and truest person I know. Alex’s hugs or the bestowal of her beautiful smile light up my day and my life. She is the sunshine our lives, mine, John’s, Courtney’s and Tom’s.

In many ways, I feel like the guardian of this extraordinary individual, the steward of her life, the protector of her magic. Every day I thank the universe for giving us Alex. I do not know why we have been so lucky, but I do know I have learned a huge lesson in life and I am obligated to share it.

Perhaps I am a Pollyanna, but this is what I want to be, this is my lesson to give to others. I strive every day to make my world a better place for my family and all children with special needs, it is baby steps, but still I believe I can make a difference.

There really is a lesson of celebration in this for all of us.

Please check out these other great posts on this topic:

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