Nancy and David had a son named Matt and were joyfully expecting a baby girl. This was before sonograms were routinely performed so they didn’t know there was a problem until her birth. The doctors were immediately concerned about Hope, and the next day a geneticist told her parents she had the metabolic disorder, Zellweger Syndrome. Imagine their heartache to learn that there were no survivors; no cure; just months of life ahead; no “hope.”
199 days later she died.
Because of the high risk of having another child with Zellwegers, David and Nancy made the very difficult decision to surgically prevent another pregnancy. Nancy started writing her book, Holding On To Hope, to bring comfort and hope to other grieving parents. As I came to page 44 last week, I read these shocking words:
“Evidently the procedure reversed itself , and today as I write, I find myself pregnant.”
Pregnant? Again? She and David hoped beyond hope that this baby, like their son Matt, would be okay. But a series of tests revealed the awful truth that their unborn son also had Zellwegers. They didn’t know Hope was sick until she was born. But from early on they knew their baby boy would have a very short and very hard life.
I finished the book yesterday. It was gripping. Nancy was painfully honest. She talked about unhelpful things people said and did during her years of suffering. She shared her despair; her why, God? questions; her frustrated desire to understand; and the reality that part of the hardness of going through difficulties is having to navigate the reactions and responses of friends and family.
Yesterday I also had the opportunity to hear Nancy speak at a conference here in Orlando on the topic of dealing with grief. I haven’t recently lost anyone close and have never held a dead baby in my arms. But I just wanted to listen to her. To benefit from her words and life. I’ve often heard “more is caught than taught” and I couldn’t miss the opportunity to catch something from a woman who has so beautifully allowed suffering and pain to produce the desire to embrace it without becoming a ball of bitterness and destructive anger.
I’m so glad I went.
Losing a baby isn’t the only way people suffer. We suffer when long held dreams or ambitions we really thought were “right” don’t look like they’ll ever happen. Children we’ve sacrificed our lives for break out hearts us with chronic ingratitude or disrespect. Co-workers gossip so they can get a leg up with the boss. Someone we’ve chosen to love forever betrays us through adultery, pornography or lust. Financial irresponsibility means we may always have to count pennies and have to give up thinking we’ll ever get ahead. Elderly parents need us to change their diapers even though they’ve forgotten who we are. The test results show the tumor got larger.
One man said, “It only takes living long enough for suffering to happen.” Hardships come to every person because we live in a broken, fallen world. Sadly, some Christians believe that real godliness and faith protects us from suffering. If we believe enough, we’ll have all the money and happiness we need because God wants to bless us, not hurt us.
But think about it. Look back on your life and think about the difficulties through which you’ve walked. Aren’t some of your greatest lessons and blessings the result of your deepest pain? That doesn’t mean you would ever want to repeat that horrific season of life and genuine faith doesn’t say, “Bring on more pain and suffering!” But the promise that “God causes all things to work together for the good of those who love him” (Romans 8:28) means that the disorienting perplexities of death, illness, rejection and pains of all kinds really do “work together” for good.
Our suffering isn’t meaningless or useless.
I can’t recommend Nancy’s book enough. But I have to warn you: this book is not for anyone who wants to marinade in your pain. Nancy’s solutions, forged in the fires of suffering unlike I’ve ever experienced, are full of both grace and truth. Using the life of Job in the Bible — a man who lost everything — she provides hard fought but life changing help to hurting people.
You can find Holding On To Hope here. And whether or not you ever read it, I trust that God will bring you your own special and personal hope in the midst of your suffering. If for any reason you would like to contact me personally, just leave your email in the comment section and I would be glad to reach out.
The Ultimate Blog Challenge: Day Ten