(In this edition, the RT yields the floor to his far more balanced alter-ego. You may rest easy in the knowledge that the usual snarkiness of the RT will return in due time.)
Exactly 20 years ago (as I write this), my young family’s world was spinning rapidly out of control and there was absolutely nothing we could do to stop it.
At 8pm on Friday, January 29, 1999, Michelle and I found ourselves virtually alone in the ER at Arkansas Children’s Hospital with our two-week-old son, Riley, who was suffering uncontrollable seizures. We had no idea why and it would be many long hours before we did. A whirlwind of shock, worry, vaporizing hopes and dreams, anger, helplessness and sadness – interspersed with a million other feelings and concerns – engulfed us.
But I’m getting ahead of the story.
Our life journey began simply. When we married, Michelle wanted a house full of kids, but I wanted only two. You know, the typical American family: Mom, Dad, a son and a daughter. We had already been blessed with two beautiful girls, but I was willing to go one more to round out the litter with a son.
In the spring of 1998, Michelle called me from a pay phone outside a Sears store in a mall in Ohio to say that she was pregnant. She had slipped away from her Mom and a long-time family friend to buy a pregnancy test at a drugstore. After a positive result, she called me in tears of joy to share the news – which explained why she had been nauseated in the mornings. While we were both reeling from the news, she had to hang up because she saw her Mom coming and wasn’t ready to share anything.
We didn’t know that our third child would be a boy. But if he was, he would have his grandfather’s name – or something like it. At least his grandfather’s first name and middle initial. I didn’t want him to have his grandfather’s middle name for fear that someone would actually call him by it. We settled on Riley as his middle name the night before the scheduled C-section. Robert Riley McClanahan would be the second in our clan’s history with the initials RRM.
Riley came into the world the morning of Friday, January 15th, a typical Arkansas winter day. He was every bit as perfect as his two older sisters. Ten fingers, ten toes, round face, rosy cheeks. At birth, Riley was the spitting image of his oldest sister. We took him home two days later, after Michelle had recovered a tiny bit after the C-section.
With the third child, things are almost on autopilot. Changing diapers is automatic. Rocking, burping, patting and jiggling are all muscle memory at this point. Even dealing with cholic is ingrained in Mom and Dad. Except that we didn’t have any of those magic simethicone drops that we’d pumped the girls full of in their first weeks, so I got to make my first post-midnight visit to a Walmart Supercenter to buy some. Nothing to it.
On Thursday, January 21st, an F3 tornado ripped through my work campus, taking down our on-campus electric distribution system. I spent the next several days coaxing a portable generator to provide emergency power to our critical computer systems. My in-laws were in town to see the new baby, so Michelle had plenty of help. We do what we have to do to keep things going.
With that crisis behind me, the next week looked to be a fairly normal week. By Friday, Michelle felt like getting out of the house for the first time after the birth. After I got home from work, we left the girls with a sitter and took Riley with us to the Outback Steakhouse. It was nice to have a quiet moment together after a couple of pretty eventful weeks.
During dinner, Riley became fussy, but it was no big deal. Michelle nursed him and he settled right down. We finished eating, paid the check and headed to the van, planning to go visit some dear friends at the hospital who were celebrating the birth of their second child that morning. As we put Riley into the van, he cried out sharply. It was unsettling to us, but we thought we had possibly bumped his carrier as it passed through the doorway and startled him.
His loving Mom checked his diaper and found that he needed changing. After that, he seemed to settle in and go to sleep. Off we went to the hospital for a visit.
After arriving there, Michelle took the first visit and headed into the hospital while I waited in the van with Riley. It was a cold night, so I kept the van running and the heater going. A few minutes later, I heard Riley spit up and choke. I hopped out of the driver’s seat and over into the second row, where his carrier was strapped in.
This wasn’t my first rodeo, so I checked to see that his airway was clear, then carried him back to the driver’s seat with me. I laid him face down across my knees, so that if he spit up again, he wouldn’t choke on it. Again, he seemed to settle right back to sleep.
Michelle came down a few minutes later to relive me so I could go up and see our friends. When she got in the van, I told her what had happened, and that Riley had scared me a little bit. She picked him up from my lap and when she did, he arched his back away from her until he was facing straight up. Then he went slack. Seconds later, he repeated the cycle. She had me turn on the dome light to give her a better look. In the slightly-improved light, his skin was grey and splotchy. It took Neonatal Specialty Nurse Michelle McClanahan no more than a few seconds to say: “take us to Children’s”.
Children’s Hospital is providentially located less than five miles from where we were visiting our friends and it took no more than ten minutes to get from there to the door of the ER. I dropped off Michelle and Riley and went to park the van.
By the time I got back to the ER, there was no sign of Michelle or the baby, nor was there anyone else – except the security guard, who made me pass through the metal detector before I could go further. Now when, on a Friday night, in January, in the middle of cold and flu season, has the ER waiting room at any hospital been empty? That was the first sign that maybe something incomprehensible was at work.
And now, we find ourselves at the point where this story began. Michelle and I had no earthly idea what was wrong with our son. He was having seizures for no apparent reason.
With an empty waiting room and few patients in the unit, Riley had the attention of almost the entire ER staff. We knew that he was in the right place, being seen by the right specialists. But we still had no idea of what was going on.
One of the staff took us to a quiet room to collect our thoughts. We made three phone calls, I think. The first was to the babysitter to give her a heads-up that we wouldn’t be home anytime soon. She agreed to stay the night, if necessary. The second was to my sister, Cindy, to let her know that something was going on. The third was to a friend who was a social worker on staff at Children’s.
The first report back from the attending physician was that they still didn’t know why Riley was having seizures. The next report was that they had done a spinal tap and found blood in his spinal fluid. The next was that they had done a CT of Riley’s head and found that it was filled with blood. The news was not good, though it did explain the seizures. The question now was: “Where did all that blood come from?”
Now, before this turns into the book that I’ve always said I would write (and appear to have started), let me compress the next few hours and try to bring this “chapter” to a close.
Around midnight, a Neurosurgery Fellow (not a guy; some uber-resident guy) with a thick, Russian accent told us that, unless he drilled a hole in Riley’s head to allow the pressure to escape, our son would die. And how do you respond to a statement like that? You say: “Then you had better drill a hole in our son’s head”
Our social worker friend had showed up several hours ago and had taken complete and total charge of us (she earned the nickname “Sarge” for life). She had lined up a waiting room in an area of the hospital that wasn’t used on Friday night for us to have a quiet place collect our thoughts, away from the chaos of the ER. And far away from the Russian neurosurgeon who was preparing to drill a hole in our son’s head.
When we got to the quiet, vacant waiting room in an unoccupied remote corner of the hospital, we found about 30 people from our church family waiting for us there. At 1am. In the middle of the night. Or very early in the morning. In winter. On an unseasonably cold January winter night. When all of these folks should have been at home in bed with their families.
But they came. Just to be with us. To hug us. To cry with us. To tell insanely funny stories and laugh with us. To support us in any way they could. This was the second indication that something bigger was at play.
There are more stories from the next few hours than I have time to write. Remember, I’m cutting this short.
Twenty years ago – right now – we were losing our son. Twenty years ago, we thought that, if he survived the night, he wouldn’t survive a year, or a month, or even a week. Twenty years ago, we never imagined there would be a twenty years later – with or without Riley. There was only that moment.
Twenty years later, we still have Riley. He did survive that night, and the crucial days that followed. And the rough weeks that followed that. And the uncertain months that came after. And the challenging years that stacked up until here we are … twenty years later.
They’ve not been an easy twenty years – not at all. Here’s a short list of what Riley has dealt with in that time:
- Major loss of brain mass. The bleed he suffered when a blood vessel ruptured took a substantial amount of brain with it.
- Hydrocephalus. The blood that filled and surrounded his brain after the bleed damaged the surface of his brain, making it impossible for him to absorb excess cerebral-spinal fluid (CSF), which is generated inside the ventricles of the brain. This creates pressure inside the skull and on the brain, causing all sorts of problems.
- Stroke. Riley’s neurosurgeons performed an emergency “procedure” (which you and I might be inclined to call “brain surgery”) in an attempt to flush the clotting blood from the ventricles in his brain. If they hadn’t, the pressure on his brain would have killed him. During that procedure, Riley suffered one or more strokes that further damaged his brain.
- A ventricular-peritoneal (VP) shunt. A hole was drilled in the side of his skull to allow tubing to channel the excess CSF from the ventricles inside his brain to his stomach cavity through a pressure-controlled valve under the skin behind his ear.
- Surgery to correct eye position. One of his eyes was turned in because the nerves that controlled the muscles required to balance the eye position were damaged in the bleed.
- Poor vision. The alignment of his bad eye is now permanently set, so he cannot track with it. The vision in the other eye is not great.
- Allergies. Riley is allergic to almost everything: beef, chicken, turkey, pork, eggs, milk, latex, bananas, pineapple, green peas … and the list goes on.
- Gastro-Esophageal Reflux Disease (GERD). Possibly exacerbated by the weak muscles in his torso, preventing his esophageal sphincter from closing properly. At any rate, he has bad reflux.
- Orthopedic Issues. Atrophied muscles in his leg are unable to keep his hip joint in the socket. His leg has been out of socket for years.
- Scoliosis. As the muscles in his torso have atrophied over time, the curvature of his spine has gotten way out of whack.
- Eosinophilic esophagitis (EoE). Riley was recently diagnosed with EoE, which is a weird allergic reaction to certain foods inside the esophagus. Mind you, we don’t know which foods cause the irritation and Riley cannot communicate that to us. This may eliminate many of the few foods remaining that Riley once could eat.
- Can’t walk. With his leg out of socket and no hope at balance, Riley cannot walk and has been confined to a wheel chair since infancy.
- Can’t sit up. Riley lost the ability to sit up on his own a decade ago.
- Can’t dress himself. With damaged motor skills, Riley cannot put a shirt or pants on by himself.
- Can’t toilet himself. Without the ability to walk or move himself around, he can’t use the toilet.
- Can’t feed himself. He cannot prepare a meal, though he can put bites of food in his mouth by himself. But if we don’t watch him constantly, he will choke.
- Has no concept of danger. Riley requires constant attention or he could easily hurt himself. His curiosity makes him want to grab everything, but he doesn’t know that the pan on the cabinet could bust his skull if he pulls it off on top of him.
You know, this list could go on for pages. But here’s a short list of things Riley can do.
- Love. Riley knows only love. Unconditional love. No hate. No jealously. No envy. Only love.
- Trust. Riley trusts. He knows nothing else but trust. He trusts his caregivers in every single thing. He never questions.
- Laughter. Riley laughs and squeals at the simplest things. He doesn’t need the latest and greatest of everything. He LOVES to play with a $3 Slinky. Better yet, he LOVES to play UNO.
- Charm. I’m not exactly sure what it is, but people melt when they meet Riley.
- Smile. Riley is almost always smiling, except when he’s overstimulated. And it’s a smile that will melt your heart.
In Matthew 19:14, Jesus said: “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.”
That’s what Riley is. He may be 20 years old, but he has always been, and always will be, a little child. A loving, trusting child. And in his face, I get to see what the Kingdom of God looks like. He is God’s child. He was God’s before he was mine and he’ll be God’s when one or both of us is gone from this earth.
Riley is the biggest challenge that I have faced in life. But, without a doubt, Riley is the greatest blessing in my life, apart from the saving grace of Jesus Christ.
The challenges of the “Riley Experience” have made our family stronger, our time together more dear, our compassion for others more real. We are better people because of what happened to Riley.
God used the greatest tragedy in my life to bring about the greatest blessings in my life.
Yes, I still struggle with it. Michelle will tell you that I do. But when I lay down in Riley’s bed to snuggle him at bedtime, all the fears, the uncertainties, the heartaches, the worries – they all melt away.
Thank you, Lord, for all of my children. But I thank you in a very special way for Riley and the twenty years I’ve had with him. And thank you for their godly, loving Mother – my wife – who blesses all of us with her gentle spirit and never-ending faithfulness to You.
Wow! 20 yearsâunreal.
Wonderful read. You, Michelle and Riley have been such and inspiration for so many people, for so many reasons, from so many perspectives. I continue to marvel at your story. Thanks, brother.
Love you, KB5ZEU!
Dale Carnegie Training
Howard, Mohorn and Associates