Reflections on the day we were told our son was going to die.
My wife and I sat in silence. The gray-haired doctor continued. “The MRI showed an excess of fluid on Hudson’s brain.”
I always hated hospitals. Not sure why. I mean, they represent, in many regards, the best humanity has to offer to this world. People offering their time, talent, and intelligence to care for the sick and dying. A reflection of a society’s collective refusal to leave the suffering to fend for themselves.
I still hated them. The lights. The smells. The feeling that even the air itself was contagious. They creeped me out.
The doctor with the white coat was still talking. Something about a dark area on the MRI. Melissa and sat holding hands. I think.
“We don’t know exactly what is going on with Hudson, but we do know that it is major. Whatever it is, it will affect the length and quality of his life significantly.”
Or something like that. It’s funny how the memory works. I remember the scene being “blurry”. I remember the doctor’s voice being “muffled”. I remember feeling disoriented and yet somehow very cognizant of what what going on around me.
Breaking Bad actually portrayed a scene somewhat similarly to how I “remember” it, though of course in our case it was our son being diagnosed.
And there we sat, as the doctor told us our son was going to die. “Excess fluid.” “This dark area right here.” There’s only so many ways that you can say it without coming right out and saying, “your son is going to die.”
There’s no preparation for getting that kind of news. Even if, as it was in our case, it is clear something is wrong, there is still nothing that can prepare you to hear those words.
Over in the NICU, our little boy of 4 weeks lay fighting for his life under heating lamps. When he was born, within 24 hours of struggling to latch and nurse, it became clear that he had a weak suck. His muscle tone was extremely low. He was not getting the milk he needed. He was moved into the NICU and fed through a tube to give his premature body a chance to get what it needed. Four weeks had gone by, with some, though little, improvement. He was small, being 5 weeks early. But we had already known he was unique. Melissa had been on hospital bed rest 6 weeks prior to his birth. We knew something was up.
But this. This news. The doctor and the white coat and the MRI and the news. It was one of those moments in life. The kind you’re not ready for. The kind you never forget. Maybe you know the kind.
Up until this point we had had many “maybes” and “could be’s”. When you have kids there are always possible difficulties. There are so many variables: so many things that could go wrong. But this moment is different. This was not “could be”. This was, “will be.”
That day was a blur. As usual, my wife remembers the details much more vividly. The doctor’s name, what we did prior, what we did after, etc. etc. etc. I remember impressions, not details. What I do remember very clearly was sitting around our dinner table that night. We sat talking to my parents and my wife’s parents, and we shared the news with them. And we cried. And we prayed. And we cried.
I also remember something else vividly. I remember not believing the doctor.
I have since wondered if it was faith. Or shock. Maybe it was a reflection of my overall tendency towards optimism. Maybe I didn’t really understand what was happening, or, more likely, maybe it was a stubborn refusal to believe. Maybe it was all those things, or some combination.
I can’t say what it was. But I didn’t believe him. Something inside of me wouldn’t let me. I had a hard time mourning the news, even though it was crystal clear.
I wish I could say the same for all of the other times that we received bad news. I also wish I could say that we haven’t had several life defining moments like this one- moments where we received news that we knew would change the direction of our life forever. But I can’t. What I can say, however, is that this was the first. It was the first of many, but still the first. And firsts are hard.
There was good news, however. This diagnosis was not accurate. It set into motion a chain of events that would be difficult and long, but that would ultimately be the best for Hudson and for our family. We changed hospitals within 24 hours and his new hospital assembled what could accurately be described as the Avengers of all patient care. They were thorough, tireless, compassionate, and each one outstanding in their field.
We saw specialists whose focus we couldn’t even pronounce. They ran so many tests on Hudson that they needed to wait for his small body to replenish its blood supply in order to run them all. And, it became clear in time, that he would survive. That though his symptoms were many, and though there were many difficulties ahead, God had other plans for Hudson.
We still take it one day at a time with Hudson. With diagnoses like hypotonia, autism, apraxia, ADHD, Short QT syndrome, just to name a few, we have to take it a day at a time. Our future is not certain. At least in this world.
But this is not our home. As Jesus loving, God serving sinners, we know that this world is not all there is. How could it be?
Though we have received bad news dozens of times, that is only part of Hudson’s story. Part of our story. We believe that Jesus has a plan for all who suffer. That He sees us. That He is well acquainted with grief and pain, and that He is at work making all things right. This world is broken. We see that fully. It is not natural nor “right” that someone should suffer as Hudson does. It angers us. Grieves us. And it should. This is not how it was supposed to be. But Jesus, who died on the cross, bearing all sin and shame, rose again.
He can bring new life. Only He can make something out of nothing. Only He can fix what has been broken. So we look to the One who can make it right. I wonder, at times, why He doesn’t fix it all now. Why not heal all of the suffering and fix what is broken now? I don’t pretend to know. But I believe that one day I will understand. I believe that one day He will restore all things and redeem all of creation. Including Hudson. Including all of us.
That, my friends, is Good News.