Connecting. . . and a give-away

When Wil surprised us with his early arrival three years ago, and then his extra chromosome and heart defects we hardly knew where to turn. We didn't know anyone with Down syndrome. Our images were those of adults in group homes being led around the mall or a festival by their caregivers. And those were just images, we had no facts. So, after talking with the very unhelpful social worker that came to my bedside and Wil's after his diagnosis, we turned to the internet. We found a lot of outdated information and the occasional encouraging essay or paper. What we quickly learned is that the most helpful information came from other parents of children with Down syndrome. Parents who were a few steps ahead of us and could give us a truer picture of what life might look like for our son and our family. Message boards like downsyn.com became a lifeline and parent blogs a huge source of encouragement.

Of course no two experiences are the same but we sure did find understanding, hope, medical knowledge of ds and the related issues that rivaled the average pediatrician's knowledge, and most importantly to me pride and privilege. I felt this sense of privilege from early on, there was just something about Wil that stirred it in me, but it was challenged by the grim outlook many medical professionals offered. As I read the blogs of other parents and began to dialogue with them and as I began to experience Wil myself my sense of privilege was cemented.

One of the mom's that I read regularly is Jennifer Graf Groneberg. She is vulnerable, honest, insightful, and loves her boys deeply which oozes from her writing. One of her twin boys, Avery, has Down syndrome and she writes about this in Road Map to Holland: How I Found My Way Through My Son's First Two Years with Down Syndrome which was published this month. My copy arrived yesterday morning and I am already well into it. I have found myself nodding in agreement and understanding as well as filling up with tears as her account throws me back to our own early days of confusion. If only I knew then what I know now I wouldn't have been so scared. While we all have to take our own journey hopefully, with Jennifer's book now available, new parents getting this diagnosis will feel a little more ready for the ride of their lives.

I purchased two copies of Road Map to Holland. One for myself and one to give. And this book, by the way, will speak to every mom and mom-to-be, not just those parenting kids with special needs. So if you would like your own copy of Jennifer's book then just leave your name in the comment section. I will be randomly selecting the recipient on Monday evening. Thanks for playing and have a great weekend. I am going to be reading.

3 comments:

jennifergrafgroneberg said...

Don't give me the book! (Though I still don't have one...)

Just wanted to thank you for this post, and your support, and for sharing your experiences with Wil. I too wish I hadn't been so afraid...I really, really wish that.

Spitmonkey said...

I'm not commenting to get the book (wink) but I did want to say that I've read the snippet about the Road to Holland somewhere on the boards (maybe it was you that posted it?) and it's so, so true. I think from the second we find out we are pregnant we form all these ideals in our heads about how life will be when Baby gets here - and then when they do arrive, even medical issues aside, we find that life has a way of giving us challenges that we never could have fathomed.

And yet, here we are, stronger on the "other side." Thank goodness for the Internet. :)

Mary said...

My daughter, Leah, was born with Down syndrome in January '07. I just now found the numerous blogs in cyberspace that so many wonderful families keep updated for the world to see. Jennifer's book is on my wish list. I am hoping to read it soon. It is getting wonderful reviews.

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