Let me preface this by saying that I have not experienced the loss of a child…yet. But running the Helping Everyone Reach Outstanding Educational Success (H.E.R.O.E.S.) and being a special education coordinator, I have known family and friends who have lost a child, and I cannot imagine the agony.
Before he was 16, Nick, our oldest, was a healthy teenager. Sure, he had his issues with his autism, intellectual disability, cerebral palsy and seizure disorder, but all in all, he was able to participate in all the activities that make up the day-to-day life of a typical teen.
That all changed, however, shortly after his 16th birthday. It was a snowball effect that started with an unexplainable rapid 30-pound weight loss. Nick was admitted to an in-patient feeding program where he underwent daily feeding therapy in an attempt to help him gain weight. It didn’t work. Then he developed dysphasia (difficulty swallowing), which increased the risk of aspiration. He sometimes aspirated on his own saliva. Next, we were referred to a cardiologist who diagnosed Nick with a not-otherwise-specified (NOS) heart condition (fancy talk for they don’t know what the hell is wrong). And finally, a geneticist performed several yearlong tests, all of which came back unanswered. Why Nick’s health was deteriorating remained a big frustrating question mark — to all of us.
Right around the time he turned 17, Nick’s medical team, who still admitted that they didn’t know what was going on with our son, told us that what they did know was that Nick’s health would continue to decline until it ended his life.
What? We were completely taken aback.
And the snowball only got bigger. Nick developed neuromuscular scoliosis. He had to have 14 screws and two rods put into his back — a surgery that almost killed him. While he was in the hospital recovering, he was diagnosed with ileus and gastroparesis, a condition that slows his GI track, delays his stomach emptying, makes him swell and causes him lots of pain.
So for the last year and a half or so, Nick’s been given all of his nutrition and hydration through his veins. He’s on a 24-hour TPN (which is how he gets his nutrition), 16 hours of saline and daily intravenous medications. He’s had pneumonia six times, sepsis three times and candida in his blood once. The sepsis and candida nearly killed him. He’s had fevers that spike to 105 degrees and violent seizures.
Each time the ambulance is called, my wife and I look at each other thinking, “Is this it? Will Nick come home again?” Even my almost 10-year-old daughter has started vocalizing this concern.
Death is a difficult subject to talk about and near impossible when it comes to your children, but my wife and I have had to have that conversation about Nick. And ours isn’t a hypothetical what if. It’s a conversation of when. When that horrific day arrives, we’ve talked through what’s needed.
We actually thought that day arrived in early December of last year. Nick’s colon tore causing sepsis and drug-resistant E. coli throughout his body. Nick’s surgeon explained the severity of the situation and said he didn’t think Nick would survive the procedure. I sat with Nick before the surgery, talking to him and letting him know that if he was tired of hurting and fighting, that was OK. Though I know it was the right thing to say, it was the hardest thing I have ever uttered.
Ever.
But Nick pulled through (the doctors couldn’t believe it). He’s clearly got more to do here. He’s a fighter, and he has a very special relationship with the Lord. Though my wife and I pray for many more years with Nick, we understand it’s not up to us. It’s in God’s hands now. We continue to support and love Nick through his fight and thank God for every day he lets us have with our incredible son.
