MOSAIC MOMENTS

When CJ Field, creator of The Traveling Afghan, challenged Down syndrome bloggers to blog about the ties that bind us in the Down syndrome community for a chance to win “An Afghan of your Own”, I couldn’t wait for my chance to write.

As a parent of an adult son with mosaic Down syndrome, I have watched the world evolve over the past 20 years with the incredible invention of the internet. With this device, families are able to connect with one another in a way they were never able to do so before. We now have blogs, Facebook pages, Twitter, and our beloved email groups and listservs that connect us on a daily basis to provide support and information to families throughout the world. With this invention, the Down syndrome community has become one voice.

Think about your next door neighbor for a moment. What do you know about that neighbor? How much do you know about their children? Do you know when they are going on vacation and where they will be going? Do you know how many ear infections their child has had in the past year? Do you know when your neighbor is sad or happy or stressed or angry?

Now think about a family who you know online that lives thousands of miles away and the only thing in common that you share is that you both have a child with Down syndrome or mosaic Down syndrome. How many children does that family have? Do you know when they are going on vacation and where they will be going?  Do you know how many ear infections their child has had in the past year? Do you know when they are sad or happy or stressed or angry?

It is one tiny little chromosome that connects us all. This chromosome is one of the smallest in the body, but it carries the most love. You can connect with your next door neighbor if they have children the same age as yours, but when your child has that extra chromosome, you connect with other families who share that amazing addition in such a different and remarkable way. 

Why do families of children with Down syndrome connect more than others? 

Because we have all been there. No matter where “there” is. We as parents know how it feels for your heart to drop down to your toes and up in your throat simultaneously when you are told your child has Down syndrome or mosaic Down syndrome. We know how scary it is when your child has to have heart surgery or PE tubes in their ears. We know the frustration of waiting for those milestones to come about. We know the never ending alphabet soup of IEP’s. We know the worry of being accepted in the typical community.

But we also know that all these things will be ok! After a while, we realize that the extra chromosome is not a bad thing, and in fact it is a blessing because not only does it tie us to this special and wonderful community, it also allows us to see things that we never knew existed before! We know that the surgeries, although scary, quickly become a story of “remember when…”. We know that the milestones will come eventually, and when they are adults no one will wonder how old they were when they took those first steps or spoke those first words.  We know that we will get through the IEP’s and learn the alphabet in an entirely different way. And, together, we discover how to work with the typical community, so everyone is accepted for who they are and not what they have.

No matter where you go in life, no matter what you are doing, if you have a child with Down syndrome or mosaic Down syndrome, you are part of a very elite group of people. If you are in the grocery line or across the world visiting a foreign land, if you meet a family with a child with Ds or mDs, something comes over the both of you. That knowing smile, that spark that forms in each other’s eyes; with a nod of your head you feel the heart strings that have genetically attached you to this family who otherwise would be complete strangers.

And together you know that you are Never Alone….. 

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