Many parents of kids with special needs don’t like to discuss milestones, because their children’s progress is slow and small. So they celebrate inchstones instead. Sometimes, when their kids do achieve a milestone, the parents aren’t quite sure how to react. That’s how guest blogger April Brownlee felt when her daughter’s doctor announced Catie had reached a major milestone.
The Divorce
“I think you’re done with me,” he said, as I fidgeted nervously and practically sobbed at the revelation. And just like that, our beloved doctor divorced me and graduated my 5-year-old daughter, Catie, from his care. “Graduated,” you know, usually means a child no longer has the medical need to see a particular doctor. It’s a victory, for sure, in the special needs community. However, as we sat there in that office, while he smiled kindly and remarked on how far Catie has come, it felt a lot more like a divorce.
Looking Back
I thought back to the time, 4-and-a-half years ago, when this man, this hero, agreed to see us. He’s a pediatric intensivist—a doctor who specializes in helping children with chronic medical conditions or who are medically fragile. I worked hard to get an appointment. Catie was, at that time, undiagnosed so we had little ground to go on in the often black and white medical world. Fortunately, a well-connected friend pulled some strings. When Catie was 9-months-old, it happened. From the moment he walked in, I knew he’d make things better. He just has this air about him that must bring the same sense of peace and comfort to the mother’s of all the children in his care. I struggled to absorb every word he spoke through his thick German accent. “This child has far too many doctors for someone so young.”
Too Many Doctors
I’ll never forget those words because they were so startling and true. I’d never considered she might have too many doctors. In my naiveté of having a yet-to-be diagnosed child with a multitude of quirky and complicated medical issues I thought the more doctors, the better. My heart wanted a diagnosis and my brain told me that surely, if she saw enough doctors, one of them would figure it out. But this doctor saw it differently. I learned that sometimes a flock of doctors results in the patient being treated in segments… each doctor dealing with and focusing on his own speciality. I would come to see that this doctor would treat Catie as a whole person. It may be the most profound and important lesson I’ve learned through this journey about advocating for someone.
He Is a Healer
Immediately that day he made changes in Catie’s care. And since that day, I’ve looked forward to each and every appointment with him. Within a few months Catie was a little better. In a year, she was markedly better. After two years, she was remarkably better. Today, she’s a completely different child—healed in so many ways. Many symptoms of the Noonan Syndrome that made our lives hell throughout Catie’s early years have practically disappeared… though I know the syndrome will always be there.
I also came to appreciate and marvel at his omniscient approach… he is a healer. Time and time again I would suggest something that I thought might help manage a symptom and he would explain that it would only be a Band-aid. He isn’t interested in treating patients. He wants to heal them. And, once again, I find myself knowing I’ll forever carry that knowledge with me and use it to make all future decisions regarding medical treatment for Catie, my other kids, even myself.
Only a Phone Call Away
As we sat there in his office, hearing the words I had feared for some time, I knew he was right about Catie. She has come so far. The things he was treating her for are, for the most part, resolved. Continuing under his care would only make me feel better. And yet, that’s just what he agreed to do, offering to see us one last time—a year from the day he attempted to divorce me graduate us. I know he’s only humoring me. Surely, I’m not the only mother who practically had a stroke when he released her child from his care. I’m sure when our last and final appointment rolls around, I’ll have accepted the reality and maybe even embraced having one less appointment to go to…. Or maybe not. I have 11 whole months to let it sink in. And if not, as the good doctor kindly reminded me, he’s only a phone call away.
When Did You Feel Like April?
Have you ever been thrown off-balance when your child with special needs reached an unexpected inchstone or milestone? How did you feel? How did you process it? Leave a comment about your experience.
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What an amazing doctor and a wonderful end to your daughter’s story!
Jolene
What an amazing doctor and a wonderful end to your daughter’s story!
Jolene
I’ll never forget the day we took Kaelyn in for heart surgery. The discussion about the necessity of the procedure had been floating around since the NICU. Kaelyn’s cardiologist kept telling us we should wait until she gained more weight and was a little older. Needless to say, Mommy and Daddy didn’t agree. Why wait? It’s her heart. She could die. Despite our fervent pleas, the cardiologist insisted that waiting would be better for Kaelyn.
We put our faith in this man and prayed every day that we had made the right choice. Then the day we had been waiting for finally came. “Time to go to Dallas”, was all he said during Kaelyns biannual check up. I assumed the worst and that we would be flown to Dallas on a Medivac and rushed into surgery. I was wrong. The nurse scheduled the surgery a month from that day.
Then we met Dr. Nugent. His soft spoken yet confident presence alone made my wife and I relax. He explained to us that he would be using a new procedure called a PDA occlusion device (say that ten times fast). He patiently expalined repeatedly to us that a weblike device would be inserted through Kaelyns femural artery and placed on the hole between the walls of her heart.
As simple as he made this procedure we had waited years on sound, we expected a prolonged stay in the hospital. I made sure the hotel we were staying in was okay with a longer than expected stay. We went in the next day, Kaelyn had the procedure and was sent to recovery. My wife and I slept that night in her hospital room and discussed how we were going to work out being there for at least a week.
The next morning, Dr. Nugent comes in, checks Kaelyns monitors and the tiny incision on her leg and promptly tells us we can go home. What? Don’t you know we live in Amarillo? That’s a six hour drive. He assured us that not only could we head home that day, it might be good for Kaelyn to get out and about. He suggested a trip to Bass Pro Shops (at least that’s how I remember it) and then we could drive home. Two years of anxiously waiting on a surgery that literally took a day.
Bass Pro Shops was a blast!
I’ll never forget the day we took Kaelyn in for heart surgery. The discussion about the necessity of the procedure had been floating around since the NICU. Kaelyn’s cardiologist kept telling us we should wait until she gained more weight and was a little older. Needless to say, Mommy and Daddy didn’t agree. Why wait? It’s her heart. She could die. Despite our fervent pleas, the cardiologist insisted that waiting would be better for Kaelyn.
We put our faith in this man and prayed every day that we had made the right choice. Then the day we had been waiting for finally came. “Time to go to Dallas”, was all he said during Kaelyns biannual check up. I assumed the worst and that we would be flown to Dallas on a Medivac and rushed into surgery. I was wrong. The nurse scheduled the surgery a month from that day.
Then we met Dr. Nugent. His soft spoken yet confident presence alone made my wife and I relax. He explained to us that he would be using a new procedure called a PDA occlusion device (say that ten times fast). He patiently expalined repeatedly to us that a weblike device would be inserted through Kaelyns femural artery and placed on the hole between the walls of her heart.
As simple as he made this procedure we had waited years on sound, we expected a prolonged stay in the hospital. I made sure the hotel we were staying in was okay with a longer than expected stay. We went in the next day, Kaelyn had the procedure and was sent to recovery. My wife and I slept that night in her hospital room and discussed how we were going to work out being there for at least a week.
The next morning, Dr. Nugent comes in, checks Kaelyns monitors and the tiny incision on her leg and promptly tells us we can go home. What? Don’t you know we live in Amarillo? That’s a six hour drive. He assured us that not only could we head home that day, it might be good for Kaelyn to get out and about. He suggested a trip to Bass Pro Shops (at least that’s how I remember it) and then we could drive home. Two years of anxiously waiting on a surgery that literally took a day.
Bass Pro Shops was a blast!