This post is written by my high school friend, Brandon Clay.  In high school, we had our faith in God in common. We had no idea, 17 years later, we would share in suffering and new hope.  This is a beautiful article on the honest questions we ask.

Our son, Knox Haddon, was born full term with no complications. Aside from being slightly underweight, nothing suggested he would live a different sort of life. A few weeks after his birth, our pediatrician noticed something strange in his eyes: there was no red reflex. It’s the same red-eye effect seen in some pictures – what normal eyes are supposed to do. Instead, Knox had infant cataracts which prevented the red reflex. Without surgery, the cataracts would obstruct his vision for the rest of his life.

We opted for the surgeries to save his sight. Two surgeries eventually turned into five surgeries to correct other complications with his eyes. The lenses were removed and he could only see with the help of contacts or glasses. All of this happened before his 6 month birthday.

But that wasn’t all.

Knox’s doctors thought something else might be going on with him. Aside from his eyes, there were other, irregular symptoms he was showing: a smaller head, developmental delays, and more. He was referred to a pediatric geneticist. This doctor, who my wife referred to as the “scary doctor”, was very suspicious of genetic problems with Knox. My wife and I endured a grueling interview and multiple blood tests. The blood tests came back negative and we were relieved. But the thing about genetic issues from my non-medical perspective is that there are so many. There’s no way to test for all chromosome abnormalities so they don’t. That’s the reason why our geneticist insisted that something would come to light in the coming months. She was right.

My wife started researching Knox’s symptoms. Thanks to Google, we were directed to a few different rare syndromes which could have fit Knox’s symptoms: infant cataracts, overheats/overcools easily, smaller head, and more. One syndrome in particular, Cockayne Syndrome, kept coming up in the searches.

About that time, another issue arose. Knox stopped eating. He was already not eating much, but completely stopping was a new thing. He got dehydrated and we headed to the hospital. At the hospital, we had a concentrated time with doctors, nurses, and counselors who helped guide us through this new situation. We also got connected to a doctor in Boston who specializes in Cockayne Syndrome research. We sent Knox’s blood sample to the doctor and a few weeks later it was confirmed:

Knox had Cockayne Syndrome.

Cockayne Syndrome is an fast-aging genetic condition. It’s extremely rare with a few occurrences in every 1 million births. Depending on the severity, those afflicted with the syndrome live anywhere from 1 year to 30 years. (Knox has a more severe type.) In addition, it afflicts the muscles, the brain, the bones, and every other part of the body  causing an anything-but-normal life. There is currently no treatment available for children with Cockayne Syndrome.

We have a baby that probably won’t live very long. That hurts.

It also causes Christian parents to ask questions they’ve never asked before. Why us? Like most parents, we want the best for our kids. Our desire assumed things just work out. We thought none of our children would get deathly sick, or if they would, God would heal them. After all, it happened before.

Our first child was diagnosed with brain cancer when she was 18 months old. In accordance with James 5:14, we called for the elders of our church to anoint her with oil and pray for her healing. After a year and a half of chemotherapy, she was healed. As children in the cancer unit were dying around us, our child lived. She is now 16 and has been cancer-free for 13 years. The Lord healed her – with the help of medicine. But this time it’s different.

There is no medicine to treat Knox. We have prayed and so far God has not healed him. We have read the Scriptures over him, laid hands on him, called for the elders of the church to pray over him, and nothing. It’s as if Psalm 103:3 has lost its meaning (who forgives all your sin and heals all your diseases.) We haven’t seen a healing yet and it’s been a world-shaking event. Why would the Lord send us a child who can’t sit up, crawl, or stand without assistance? Why would God give us a baby who will never talk or communicate the way most children do? When I see him in his stander – a metal contraption where he’s strapped in to help strengthen his legs – it’s a daily reminder that Knox can’t do what other 1 year old children can do. What did Knox do to deserve such a body? Did he sin? Did we sin? After all, it was a genetic condition with DNA contributions from both parents.

Or are there other explanations?

The disciples once asked Jesus the same question of a man born blind. “Rabbi, who sinned, this man or his parents, that he was born blind?” But instead of picking one or the other, Jesus went with option 3: it was “that the works of God might be displayed in him”. An unusual healing soon followed where the man recovered his sight and left many people stunned and even angry. In fact, the religious leaders kicked out the formerly blind man from the synagogue for saying that Jesus healed him. In this story, the glory of God was one man’s healing and other men’s blinding – so to speak. (John 9)

But what about our story? Why was Knox born blind and afflicted with Cockayne Syndrome. I don’t know. Why does God heal one child and not the other? I don’t know.

Why do some families have 10 healthy children and other couples can’t have any? I don’t know.

I may not know why this happened – or why something similar happens to a million other families. But it does. There are several ways to react to the situation.For one, I could deny God controls all things and he let this one slip. I haven’t gone that route. I could deny God cares for his children, as if he’s some abusive father who just lets bad things happen to his people. I haven’t taken that route either.

Instead, I believe in a powerful God who has orchestrated these difficult circumstances for his purposes and our good. One verse keeps coming back: “And we know that for those who love God all things work together for good, for those who are called according to his purpose.” (Rom 8:28). He does these things for a good reason, even if the illness is bad. Perhaps it’s a mystery: bad sickness and good purposes happening at the same time. But sometimes that’s all we have to go on.

As trying as this situation has been, physically, emotionally, and spiritually, it’s not over. We don’t know how long we will have our beautiful baby boy. Maybe a few months, maybe a few years, who’s to say? Yet with the Lord’s strength, we will love him and help him along in his little life. He’s a special little guy who is already teaching us. For one, we now have a measure of compassion that we did not have before he came. The Lord has used Knox for good and God is not done yet.

Maybe we don’t know how everything will turn out – maybe we don’t need to. But I’m anchored to the God who promised to work everything for an ultimate good. He is a good Father, after all. Hopefully I can be a good father to Knox, too.