Andrew and Rachel Wilson have written a book that I think will be a Christian classic for parents of special needs children. Through a repeated cycle of obedience and lamentation (weeping, worshiping, waiting, witnessing, and breathing), The Life We Never Expected teaches us to grieve and to laugh and to trust.
I've pointed to this first chapter, "When Life Gives You Oranges," before, but one of the chapters I found to be most profound when reading the (British version of the) book this past Spring was Rachel's "A Note to Friends and Relatives." She writes:
A fantastic extended family has helped practically in a myriad of ways. Our group of friends and church network have given countless kind words and prayed faithfully. Our experience of interacting with friends and relatives through our whole journey has been superb.
At the same time, though, we know that this is not always true for everyone. Some reactions, however well intentioned, can be extremely unhelpful. So since it is hard to know what to say when people are going through a hard time, and since words have such power to build up or tear down, we though it might be good to give a few suggestions on how to respond when friends or relatives of your are hit by disabilities, particularly in the case of their children. In saying this, please know that we have gotten this wrong as much as the next person!
Here is Rachel's advice in brief:
First, sympathy alone is more helpful than trying to cheer. So many find it hard to stop at "That is so hard, and I am so sorry." But looking for an explanation or a silver lining too quickly can do more harm than good. This is especially important for parents of autistic kids. She writes, "The reality is that most children with disabilities won't be among the savant few and won't have their whole worlds turned upside down by horse whispering or crochet or the latest therapy fad, and there is, consequently, a very real reason to grieve."
Second, practical acts of service are enormously powerful. Often Christians want to pray for healing but no one offers to provide one-on-one care for a child with needs while the parents attend a church gathering. While reading this section, I gave thanks for the special needs ministry at our local congregation and for the many women who have spent time in our home each week taking care of Lucy. But I was reminded about the weeks during our diagnosis process when I could have better cared for Megan simply by asking others in our church to prepare a meal. I was also reminded that the population of special needs children in churches is 73% lower than the population in public schools. Practical service of grieving caretakers is a great need.
Finally, it should be acknowledged that those around the special needs family suffer as well. Grandparents, siblings, and close friends also grieve a difficult diagnosis. Rachel writes, "We have really benefited from the speed with which those around us have come to a place of acceptance and the fact that we have not had to justify decisions about schooling, mealtimes... More than almost anything else, we have really appreciated the leeway we have been given by friends and colleagues to miss birthday celebrations, duck out of evening events, arrive at things late, leave things early, or retreat with children into bedrooms (during parties) and side chapels (during weddings)." At the same time, those closest to a special needs family have had their dreams rearranged as well. Just as those around us have a role to play in helping us, we also have an important role in helping them too.
How do you receive Rachel's counsel? If her words are an encouragement to you, pick up the book and leave an encouraging comment below.