What Everyone Should Know about Raising a Child with Special Needs

When Dana Hemminger asked me to review her new book about raising a child with Down Syndrome, I readily agreed. Knowing Dana’s blog, I knew the book would bless me. But to be honest, I was motivated for one other reason: sheer curiosity.

In 1987, Emily Perl Kingsley coined an analogy to describe the experience of raising a child with disabilities. In the analogy, pregnancy is like planning a trip to Italy. Parents eagerly pack and dream and make preparations with Italy in mind, only to deliver their baby and realize the “plane” has landed in Holland. Naturally they’re shocked, grieved, and confused. Nothing is as expected. But eventually, as they learn to adapt, they realize Holland is beautiful in its own way. Dana borrows this analogy for the title of her book, Reflections from Holland.

The Shameful Truth
Here’s what we moms who have only been to Italy don’t like to admit: Holland scares us. We’re curious about it because, on some level, we fear that a journey there might destroy us. Much of that fear is due to the fact that Holland is entirely unknown territory. But these past few weeks, that changed for me. When I sat down with Dana’s book, I thought she was going to teach me about raising a child with Down Syndrome from a biblical perspective. And she did. But she did so much more than just that. Dana invited me onto the plane with her. She let me climb inside her heart and journey to Holland, beginning from the very moment her pregnancy test was positive.

As a result, reading Dana’s book felt like reading her diary, and I found myself unable to put it down. The lessons weren’t grouped in clever phrases or listed in simple steps. Instead they were woven into her life. Shimmering on the surface of her tears. Rising from the ashes of her prayers. They were everywhere. In the big moments when Benjamin endured open-heart surgery at two months old, and when his parents (and I!) cried as he finally took his first steps at nearly four years old. And the lessons were in the small moments, when Dana opened a Christmas card with “perfect” pictures of a friend’s baby, or listened to her 8-month-old daughter say “Mama” before her 4-year-old son had ever said it.

What Everyone Should Know about Raising a Child with Special Needs (or Why You Need to Read This Book!)
Of all the things I learned from this book, 3 things especially stand out:

Ignorance is hurtful.
Before reading Reflections from Holland, I had no idea how many medical challenges Down Syndrome can present, including hearing and vision loss, heart problems, seizures and more. I knew it caused developmental delays, but I underestimated those as well. By the time I had journeyed with the Hemmingers in and out of hospitals, through multiple forms of therapy, and heard their desperate prayers for their son, I, too, felt the sting of insensitive comments like: “Just wait until he does learn to crawl; you’ll be wishing he didn’t!”

In one of my favorite chapters, entitled “Help that Hurts,” Dana gives several examples of ignorant comments like this, and graciously explains why they are hurtful. I was so grateful for this knowledge. In my opinion, it is invaluable. As the church, one of our greatest callings is to minister to people in their suffering. But sometimes we have no idea how to do that, because the form of suffering is so foreign to us. Educating ourselves is crucial in becoming equipped to love others as Jesus does.

Everyone will face disappointment in parenting.
This book is about so much more than Down Syndrome. The reality is, we are all going to face disappointment in parenting, whether or not God calls us to Holland. This book is about experiencing God in the face of that disappointment. It’s about laying our plans and our dreams on the altar, and delighting ourselves in God’s will for our life, even (or perhaps especially) when it’s not what we had in mind.

Hope in Christ withstands every storm.
In other words, you can do more than survive Holland; you can thrive in it. When it came to parenting Benjamin, almost nothing went according to Dana’s plan, from the smallest details of the delivery to the greatest challenges presented by Down Syndrome. For some people, this would justify lifelong resentment and bitterness. But there was one crucial key to Dana’s ability to thrive in Holland–she made Jesus her treasure. She chose to treasure Christ more than milestones, or expectations, or appearances. And in so doing, she found great comfort, overflowing promise, and abundant reasons to rejoice.

This is a book well worth every mom’s time. Initially, when I sat down to write this review, I was going to say that by the time you close the last page, you will feel like Dana is a close friend. But perhaps it’s more fitting to say, by the time you close the last page, you will wish you had a friend like her.

For more from Dana Hemminger, visit her blog or buy her book on Amazon.