As I have written elsewhere, Shawn and I have been the recipients of incredible support and encouragement since we began our journey of parenting a child with special needs. We have been truly blessed through the genuine love and investment by others in our lives, and we will always be thankful. However, I now want to focus on the “help” that hasn’t been so helpful. My motive in writing this piece is not to point the finger or be critical of others, but instead to create awareness on a very sensitive issue. Where to begin….I have realized more and more over these last three years that many people tend to hold a “rose-colored glasses” view of having a child with Down syndrome. Shawn and I have cringed inside time and time again as friends or even strangers have made comments such as, “God only gives these children to special people.” “Oh, they’re all such little angels.” “God knew you could handle it.” Do I believe that Benjamin is a gift? Absolutely—just as I believe that every child born is a gift, regardless of the circumstances. I highly value human life, and I cherish my son. However, I do not feel that children with disabilities are only given to special people who “can handle it.” All around the world, children with Down syndrome and other special needs are abandoned to orphanages and institutions. Their parents didn’t feel special and instead rejected the very life they had created. I have heard that in our nation statistically 90% or more of women who receive a pre-natal diagnosis of Down syndrome choose to abort! There is no rosy notion here but a devastating reality.
As to the sentiment that all people with Down syndrome are like angels, such comments carry a bit of a sting as well. Benjamin is a delightful little boy, and I love watching his personality emerge. However, his love or happiness as an individual is not dependent on the fact that he carries an extra chromosome. He will be shaped by relationships and life experiences just like we all are, and he will be his own person with good days and bad days, joys and sorrows. We once had a friend tell us about a grown man who had Down syndrome that she had encountered at a restaurant. He was an outgoing individual, making conversation with many people. She told us, “I thought, ‘That’s Benjamin!” I knew she meant well, but it was upsetting that my son’s personhood was being directly linked to his disability, even if it was in a flattering way. We intend to raise him to value people and to walk in love, but we will not assume that his chromosomal condition will ensure his emotional disposition!When we’ve been told that God gave us Benjamin because He knew we could handle it, I want to laugh. We are not somehow immune to pain and disappointment, and it has only been His grace and His strength that have enabled us to walk through both. The underlying message I have felt from such comments has been, “I’m glad it’s you and not me. God knows I couldn’t handle it!” Now I realize that this attitude is not true of everyone, but I hope that I’m making the clear point that having a child with special needs should not be romanticized.
Another way we have experienced “help that hurts” has been the sense that others are reluctant to acknowledge our pain, but instead are quick to give pat answers. Sometimes we have felt that our pain is not acceptable to others; maybe it makes them uncomfortable, so they give us cheery responses that only seem to undermine what we are feeling. While the intentions may be good the effects are disheartening. One example has been the grief we have experienced over Benjamin’s developmental delays. Many times I have opened my heart to another in this matter, only to receive prompt replies such as, “But he’s doing so good!” “Oh, well he’ll get there!” “Yeah, but he’s so cute!” I’ve even heard such things as, “When he does start (fill in the blank), then you’ll be sorry.” I know that my son is doing well; no one is prouder of him than his dad and me! I know that “he’ll get there,” but it doesn’t erase the pain that he’s not “there” yet. I think he’s the cutest little boy in the world, but that doesn’t diminish my disappointments over his challenges. I have NEVER been sorry when Benjamin has reached a new milestone. Each one is an occasion for much celebration and thanksgiving. Few people truly grasp the amount of work, tears, frustration and prayer that have been invested into each one.As I have experienced misdirected “help” over these past few years, I have realized more and more how many times I have been guilty of doing the same. My hope and prayer is that my experiences are teaching me to be more compassionate and sensitive when I encounter pain in others. I have learned that silence can sometimes be the greatest help. Those that have been willing to simply listen to me share the pain of my heart, without trying to “fix” me, have been the most comforting of all. There are often no “right words to say” when someone is hurting. Listen to me, cry with me, offer a hug, pray with me, and trust Jesus to heal my heart. He is the Great Physician. His words are the words that bring life and healing. Sometimes He may give you words to say, but be sensitive to His leading in this area. As I’ve written previously, we had two friends come to us with the gentle exhortation to set our hearts before Jesus to receive healing. They didn’t speak many words, only the words they felt God had given them to say. I also know that they prayed for us before ever releasing those words to us. As we took the advice to heart, we received a deeper measure of healing than a multitude of well-intentioned words could have ever offered to us. I think we should all seek to follow the wisdom of James 1:19 to “be quick to listen, (and) slow to speak…” This will truly help!