Matthew was 6 months old before we thought much about the fact that he had Down syndrome. We were elated to find out that Matthew’s heart had miraculously grown enough to be corrected by surgery, but there were also some mixed feelings. We were more than a little overwhelmed by the fact that now we would be raising a child with Down syndrome. What did this mean for our family? What did we need to know? What did we need to do? Were we already behind, having spent the past 6 months without reading up on the diagnosis and no “early intervention” services? Where should I start?
It was at this point that we met Libby and her family. (See my post, Miracles and Expectations) Libby’s son, Charlie, is 2 weeks older than Matthew, but she was way ahead of me, both emotionally and intellectually, as far as Down syndrome was concerned.
When I told her how overwhelmed and behind I felt, she said, “Don’t worry. I’ve read lots of books, so I can tell you which ones are good and which ones to avoid.” The first two books she placed in my hands were these:
Gifts, Mothers Reflect on How Children With Down Syndrome Enrich Their Lives, edited by Kathryn Lynard Soper.
Road Map To Holland, How I Found My Way Through My Son’s First Two Years With Down Syndrome, by Jennifer Graf Groneberg
These books are excellent – real stories about real families, many of them echoing our own thoughts and feelings. Suddenly, I had not one friend, but many, many “friends” in the books who really understood. There were people who sounded just like us, who understood our worries, but also our joys. The more I read, the more I saw that the love, the joys, and the blessings far outweighed any hardships for these families. If asked, the majority of them would sincerely say, “I wouldn’t change my child, even if I could. He’s perfect exactly the way he is.”
Libby has continued to be such a blessing and support to me, and now she is reaching out to other families who are new to, or adjusting to the idea of Down syndrome. She is generously sharing these books with other families like ours.
In Libby’s own words:
“These books are meant to be shared. Given to a mother who receives a prenatal diagnosis and worries about what the future holds for her unborn baby. Shared with a family that just welcomed their new baby and received an unexpected diagnosis.
A bit of hope in a sea of often outdated, biased, and negative information.”
Visit Libby’s blog, Blessings and Glory, and click on the “Sharing our Blessings” link near the top of the page, or go directly to her post, “Sharing our Blessings,” for more information.
If you are new to the Down syndrome family, I hope you take advantage of this opportunity. I have been amazed by the welcoming and loving community of families with Down syndrome. There is an incredible amount of support out there, especially online through “chats” and blogs. Join us! Leave comments, visit our websites, and read about our families. We are eager to share our stories, and hear yours. We love to hear about progress, and encourage each other through more difficult times. We especially love seeing photos of your beautiful babies and darling kids. Welcome, welcome to our family.