I was 27 and my wife 26 when our second son Peter was born with a serious birth defect. Looking back over the decades, we were just kids—kids who had just had a bomb dropped on us.
I could write a book about the things I’ve learned in the intervening decades that would have been helpful to know. But here are just a few of the things that I wish the me of today could have told myself in those first few days back then.
This is not the worst thing in the world. Pastor Robert H. Schuller used to tell the story of a Chinese peasant. The story goes through a number of twists and turns, but the moral is that in this life it’s often very hard to know which events will turn out well and which won’t, with only God knowing the grand design. Don’t assume the worst. This may turn out to be a blessing.
Dealing with “Why.” When anything like this happens, it’s normal to wonder why. I think part of that is the process of grieving the loss of your dream—in this case, having a healthy child. While it’s natural to wrestle with it for awhile, don’t get stuck there. In most cases you’re never going to find out why. The better question to ask yourself is, “OK, where do we go from here?”
This is overwhelming. How can we ever cope with this? You’re right, this is huge. But how do you eat an elephant? One bite at a time. And how do you parent a child with disabilities? One…day…at…a…time.
Take care of your marriage. The stats on marriages of parents of children with serious chronic medical problems are really awful. But the efforts to not become one of those statistics is worth it—for you, your spouse, your special child, your other children, for the rest of your lives and for future generations. Be alert for the stresses that will be coming, be proactive, get help if you need it. You’ll be glad you did.
Shoot for normal. Yes, you now have a special-needs child, and you obviously need to make some adjustments. But beyond that, treat Peter as normally as possible. Inside that defective little body is someone who desperately wants to “just be a normal kid” like everyone else. Kids, even special-needs ones, are more resilient than you think.
Shoot for “no regrets.” Now that you have a challenging situation on your hands, give it your best shot to give Peter the best life he can have. Don’t wind up kicking yourself years later, saying “Gosh, I wish we would have done ______.”
Cultivate a good support system. Having a team of family, friends, church family, and others is huge. Very likely the difference between whether you’re able to survive this challenge or not. Look for ways to start building that network.
Bitter or Better? Adverse life experiences, like having a child with chronic disabilities, can make you either bitter or better. This one’s a no-brainer. Bitter is ugly. Better really is better.
Don’t neglect the spiritual. Events like this bring up all kinds of really deep questions. “Why did this happen?” “What’s God’s role in this?” “Does God even exist?” “If so, can I depend on him?” Over the years I’ve learned that yes, he does exist, and that he does care for us. But I’ve also learned that in this life I only have the vaguest of notions of what’s going on behind the scenes. Don’t try to figure it all out. Just trust him, and take this opportunity to draw all the strength you can from him. You’ll need every bit of it.
