Thursday, August 6, 2009

Ties That Bind, Connections In The Down Syndrome Community

Every one of US has been there......at one point the Doctor says those words that change your life FOREVER! Whether it be while you're pregnant, at birth or even months later. Your child has Down syndrome or Trisomy 21. Little did we know how those words REALLY change our lives. At first you don't know what to do, lost if you will. You are just trying to figure it all out. How? Why? What do we do now? Your head is swimming with questions and with information. Then it happens....That first connection, the first person that gives you comfort or insight on this life you have just entered. It could be a nurse, family member, friend or even a stranger. Little do they know what kind of impact that person will have on you for the rest of your life. It's the first step to the rest of your new life.

For me, it was my mother-in-law, (who has a child with Cerebral Palsy) saying to me as I weep in my hospital bed, "it all happens for a reason". Brings tears to my eyes as I read those words today. Those are words you hear all the time, I know but that day; it's what I needed to hear. As the years have past this has happened time and time again as we have traveled this new path given to us. We have met some amazing Medical professionals, families, friends, and strangers! Each one just as important as the next.

Our family albums are full of the usual stuff, family gatherings, birthdays, weddings. But as you look through our albums you will see what look like complete strangers. But to us they are far from that. Some have titles others do not. They are the many physical therapist, occupational therapists, speech therapist, cardiologists, nurses, teachers, aides, ESE Specialist, Coaches, other families (not in order of importance). Each of them saying or doing something a little extra, helping make this new path we travel a little brighter and happier. Having such an impact on Wesley's life or ours, far more than they might ever know. People our family have became so familiar with that we all know each other on first name basis'. That we have spent so much time together that they have been "pictured" in our families life. These ties BIND us for life. Even if they are not in our life forever. They have left a connection that will always be there. Wesley in almost 10 years old now and that list of ties is continuing to grow everyday.

The most resent tie for our family is CJ and her Traveling Afghan Project. Check out this unbelievable act of kindness and dedication for friends and strangers alike. http://www.thet21travelingafghanproject.com/ We are super excited about being a part of this experience. Again, a stranger (not so much anymore), has made an impact our path know as Down syndrome, helping make our path a little brighter and happier. And again pictures will be added to the family album.