We are Never Alone Because We Care
One day when I was on Facebook, I got an announcement from the Madison Area Down Syndrome Society group to which I belong stating that a quilt was in the area and that the people with Down syndrome who lived in the Madison area could get his or her picture taken with the quilt to post on Google Maps. I clicked on a link and it took me to a map with little pins scattered on a globe. I clicked on a pin and it brought up a picture of an adorable child wrapped in a blanket, with the child’s location as a subscript. This got me to thinking, “It certainly would not take us long to send a blanket around the world to spend some time with each of our IWSA families!”
I proposed my idea to the officers and board members of the IWSA. Catherine went out and purchased a quilt before I could even blink an eye. The quilt is multi-colored and covered in zebras. How beautiful for our children, each one of a kind, and yet connected by their deletions of some little genes that most of us had never heard of before WAGR syndrome.
So, now the fun begins! We are going to send our Caring Quilt around the globe! I have acquired a notebook that will be used as a journal to travel with the Caring Quilt from WAGR home to WAGR home. The Caring Quilt will stay with a family for approximately a week before being sent to the next family. When and if possible, I’d love to have a photo taken with the family or child wrapped in, sitting on, or holding up the Caring Quilt so we can start to put our photos on Google Maps and create a mosaic of our families around the world.
I will need each family who wants to participate to send me their names and address so I can create a flow chart of travel for the Caring Quilt. Families are asked to journal while having the Caring Quilt so we can get a glimpse of what was going on with the family at the time. The Caring Quilt may be with a family that’s going through treatment for Wilms, through recovery from another illness, through diagnosis of some sort, or through nothing dramatic at all besides being the family of a person with WAGR syndrome. Questions can be explored in the journal like: When did you learn about WAGR syndrome, what has affected your family the most, (for example: glaucoma, Wilms Tumor, learning disabilities), how does the IWSA help you, what is your outlook on life with WAGR syndrome being a part of it?
What is our goal with the Caring Quilt? Our goal is for us to feel connected physically because it’s very difficult for all of us to get together with one another. Our goal is to give a piece of ourselves to one another by traveling vicariously through our Caring Quilt and wrapping one another in the hugs we so desperately long to give over cyberspace.
Can you even imagine what it will be like for the new family who joins our group to receive the Caring Quilt in the mail and read the journal that has the thoughts, feelings and experiences of another family with WAGR penned on its pages? The Caring Quilt will be an extension of our selves that is free to mingle with our families and give comfort, hope, and assurance to those who may have otherwise felt alone.
The first step to sending out the Caring Quilt is to let me know that you would like to participate! Please send me, tammiejo@mhtc.net your names, addresses, and e-mail addresses so I can begin a roadmap for the Caring Quilt’s travels. When you receive the Caring Quilt, you should receive an instruction sheet, the journal and the quilt itself. Of course, since this is her maiden voyage, we expect there will be bumps along the way, but that’s all to be expected when we are talking about WAGR syndrome! We will take this a day at a time and see just what our Caring Quilt can do.
