Roadmap to Holland

I just read a new book, Road Map to Holland, by Jennifer Graf Groneberg, that I could. not. put. down. It is an amazing book. I first learned about this book from the blog, Big Blueberry Eyes, written by a wonderful mom, Michelle. Michelle's blog chronicles her life with her hubby, her daughter and her son. Michelle's blog is a lot of fun to read. Once a week she tells about great giveaways. She does a "grains of gratitiude" post each week that always makes me take some time to think about what I'm grateful for that week too. She has a new baby, so it's fun to think back and remember what those days were like. And, her daughter Kayla has Down syndrome.

Road Map to Holland is the story of Jennifer Graf Groneberg's journey through the first two years of her son's life. It is an unflinchingly honest look of what it was like to receive Avery's diagnosis of Down syndrome, and how it affected her. It's a wonderful testament that what you think could be one of the worst things you'll ever go through--in reality can be something absolutely wonderful. One of my favorite lines from the book is, "He's the child that I wanted, that I did not know I wanted."

I wish this book would be read by every woman. I think that so many times, "negative" results from prenatal tests are presented in the bleakest possible terms. Yet, actually, I think there are many, many times that that bleak diagnosis is not at all representative of the actual child who is born. My son went to school with a little boy with Hydrocephalus and Spina Bifida. When I was pregnant, I remember those things as being portrayed as being inconsistent with a meaningful life. Yet this boy is a wonderful, happy, smart fully capable boy. If you did not know his diagnosis, you would never know anything is wrong with him. Periodically he requires the draining of his shunt, but it certainly doesn't seem to affect his day to day life. His life is absolutely a life worth living. It makes me sad to thing what the world would be missing without Ben in it. Yes, I know that not every story turns out that happy. I know that there are horrible stories out there. I'm not trying to judge people or the choices that they make. I just wish that doctor's were a little more willing to present the fact that there is often another side. I remember when I was pregnant with number 4, we refused, with my doctor's blessings, prenatal testing. However, I was the dreaded "AMA", so she did encourage me to have a level 2 ultrasound to see how the baby was. During the ultrasound the doctor berated me for not having an amnio. I did not want one for several reasons. I do not like needles! More importantly, I was scared of the risk of miscarriage that accompanies amnios. I was extremely excited to be pregnant with number 4, after being told years before that we would never have more than 1, I did not want to take ANY chances. Also, I knew I could never choose to abort, so why go there? In some respects, that is a cowardice on my part. There's also a measure of, "if I don't know, I don't have to deal with it". Anyway, this doctor made it very clear he felt we had made the wrong choice. He kept telling us over and over, if you refuse to do the amnio, I can't guarantee you a healthy baby. Well, I have news for him, even with the amnio, he couldn't guarantee us a healthy baby. There are no guarantees. Life just doesn't work that way.

I think this could be a scary book to read when you're pregnant, because it makes you think about things that are difficult to contemplate. Yet it offers so much hope and inspiration. I did not know that 92% of women who receive a prenatal diagnosis of Down's will abort. That statistic deeply troubles me. I think, and the book makes an excellent case, that if more people were offered an honest picture of Down syndrome, that that statistic would not be so high. This book really makes you search your soul about what makes a life worth living, and what is truly important. I know that I will keep it close by, and in the likely case that anyone close to me ever receives a troubling test result, I will encourage them to read it for the comfort and education it offers. I encourage you to read it to. It really is an inspiration.