Monday, November 9, 2009

Down Syndrome Awareness Excites Me!

I hope you all will be patient with me. My blog may look different every time you visit for a while. I'm just not very tech savvy and it takes me a while to make it's definitely a work in progress.

Just this morning 2 boxes from Woodbine House (publisher of lots of special needs books) were delivered and left on my front porch. These boxes contain a total of 54 books!! Some of these will be given to several local libaries, some are for our FRIENDS library, and others for our new parent packets that we are putting together. It is exciting to me to be able to be a part of helping others have a more positive (accurate!) view of Down syndrome. For those that have the patience to read the long story, I'd like to tell you how we got to this point.  I so well remember the time that being able to do things such as this was just an idea, a dream.

I mentioned in a previous post that when Jessie was born there wasn't a Down syndrome group in our area, there had been and the people organizing and running it had moved away and it had just kind of dissolved.  At the time Jessie was born,  there was no system in place for making sure every new parent had good information and a way to make connections with other families.  Our pediatrician gave us the book, "Babies with Down Syndrome" but others who used the same practice, but different doctor, didn't receive one. The nurse who was with me in recovery after my c-section knew someone who had a child with DS, and asked if I would like to have her number. It was just hit and miss as to what information new parents got or whether they knew how to get in touch with other families.  If you've read my new parent story, you know that I knew very little, really nothing, about Down syndrome when Jessie was born.  I wanted to read everything available to try to get some idea of what to expect. I especially wanted to read real family stories of what their life with was like with a child with Down syndrome and I pored over every picture.

I had an advantage over a lot of other new parents....When I was pregnant with Jessie, I became friends with Heather who was also pregnant.  We had daughters the same age, had sons the same age (we met because they were on the same tball team) and delivered babies with Down syndrome within three weeks of each other, Jessie first.  Neither of us knew our babies had Down syndrome before they were born.  When a mutual friend called me to tell me Heather had delivered and that her baby had was a really weird feeling...I said, "Robin, I know you wouldn't joke about something like that!".  I had never personally known anyone with Down syndrome, and even having been around anyone with DS seemed very vague to me, so for my new friend that I already had so much in common with to now have a baby three weeks after me with DS.....could only be a God thing. Right away I always had someone in the same boat, that really understood..period. That alone is worth so much.  We have both always been very thankful that God put our families together, and it wasn't long before we began to feel that there was a responsibility that came along with that blessing.

One at a time, through various connections we found other families further down the road than we were and were always so grateful every time.  How helpful and healing it was for us to see how, overall, their families functioned in very normal ways, and that they were thankful, yes thankful, for their children that had Down syndrome.  When our babies were 10 and 11 months old we had the opportunity to go together to the NDSS conference.  Another God thing...we received assistance through our local Early Intervention to be able to go, and since that year it has never been near enough again to be within driving distance.  It was a vague idea at the time, but there was birthed the idea of our FRIENDS group.
F.R.I.E.N.D.S. That stands for quite a mouthful: Families Reaching, Influencing, Educating and Networking for Down Syndrome. Whew! I still remember the visit to IHOP, with Katherine (our babies' Special Instructor who helped us get FRIENDS started) where we ate, drank lots of coffee, laughed and spent hours trying to come up with the name that that we felt represented who we wanted to be. If you are interested in visting our website, it is  There are still some typos on the front page, that too is a work in progress. 
That late night, early morning was about 6 years ago. The progress has been slow, but steady.  A little over 5 years ago God brought our way, Anne, who contacted us when she had a prenatal diagnosis of DS.  Anne has become a dear and precious friend, and a much needed (critical!) asset to our group .  She has a very needed and different skill set than Heather or I possess. Things really took off for us two years ago, when we had our first Buddy Walk. Another God thing! The nearest Down syndrome group to us is about 2 hours away and we had gone to their Buddy Walk.  Having one of our own, we had no idea how to make that happen.  I'm not sure where all Knology is located, but in this district, every branch of Knology supports a Buddy Walk in their area.  Knology contacted us about having a Buddy Walk here.  What are the chances, really, of a corporation contacting you to help raise awareness and funds for your very hearts desire?! God is too good. We just had our 2nd annual Buddy Walk and because of the Buddy Walk there are 54 books on my kitchen table waiting to be distributed. We had a very successful Buddy Walk and will be able to do many more good things as well.

It is my great hope that because of these books, some high school student will have good information for the report they prepare, and that anyone who wants to know about Down syndrome will be able to access GIFTS, and Babies with Down Syndrome. Every new parent in our area will have a lovingly prepared (by Brenda, another Godsend) new parent packet which includes:  Babies with Down syndrome, a devotional book,a burp cloth that says "I am wonderfully made" and a notebook of our family stories and contact information in a bag embroidered with our logo.  We are currently working on making connections to have in place a system where new parents receive our packets at the hospital or when they receive a prenatal diagnosis. I clearly remember when all these things were just good ideas and we wondered if we could ever make them happen. We've come a long way, baby!

1 comment:

  1. I have stuff for you! TONS of information for packets for OB offices, hospitals, specific info for those who receive a prenatal diagnosis, etc. A very helpful friend sent me copies of ALL of the different packets that their (very big) Ds group put together. I was so impressed with these and I really want you to see them!