A Mother's Worry Never Ends

Like every mother, I fall into that old cliché: “A mother’s worry never ends.” I can’t even pretend that my worries are worse or more exaggerated than others. However, we also know that the worries of mothers differ according to their own personal circumstances. Mine are not unique but I thought I’d share them, nonetheless.

I have two sons, Pete and Frankie.

Pete was born not too long after my 19th birthday. While I was still young, he was the light of my life, every mother’s joy. He was such a good and happy baby. Often, I would hear him in his crib just cooing away at the dust particles he’d see floating in the sunlight that drifted in his window through the slatted blinds. His smile was contagious.

Was he rambunctious as he got older? Absolutely! He loved to sneak in my bedroom and walk away with my hairbrush. Ironically, he never took anything of value but for whatever reason, was fascinated by that little stupid hairbrush. It started to become a game. “Pete, where’s my hairbrush?” He’d toddle in the bedroom with an “OOPS” grin on his face, hairbrush in hand.

Eventually, as he got older, much to my dismay the game stopped. I wanted so much to rewind time and will his childhood to go on forever.

Frankie was rambunctious from the second he was born. No! Actually, it stated long before he was born, but that’s another story for another time. This is about Pete.

When Pete turned four years old, I noticed a small red patch on his elbow. At first, I didn’t think much of it. When I was a baby, I had a severe case of eczema, so I thought, “Like mother, like son”. I started a cream regime like my mom did with me. However, eventually, mine went away. Pete’s didn’t.

After about six months, I mentioned it to the pediatrician who recommended a pediatric dermatologist. The diagnosis wasn’t a happy one but one I thought we could live with. He had infantile psoriasis. The doctor was positive that the condition would disappear once he hit puberty. The upside was the hope he’d given us. The downside was that puberty was still many years away.

At that time, there were no medications available to children who had his horrible, very noticeable condition. Once Pete started school, he refused to wear short pants and short sleeved shirts. Physical Education? Not happening. I had to get a doctor’s note explaining why Pete couldn’t take gym or should be allowed to wear sweat clothes. For the most part, the principal excused him knowing the vigorous workout the boys would encounter. Pete was sent to the principal’s office to wait out the class. He wasn’t happy.

Once in junior high, the psoriasis rather than disappear, took on a life of its own and began to spread quickly over his body. Worse yet, his doctor’s note was considered a feeble excuse and it was demanded of him to attend PT. By this time, his dad left, and I found it necessary to return to work to make ends meet. Little did I know that Pete began skipping that class, often skipping school entirely. We had a long talk about it and while he started attending on a regular basis once again, he still refused to wear shorts and short sleeved shirts. His PT teacher, also a sufferer of psoriasis understood and allowed Pete to wear whatever made him comfortable.

While this was disfiguring his body, it was also torturing his ego. He shunned people, getting close to no one. The only friends he had were his brother and the boy next door who he’d known since he was three.

I worried constantly but at that time, he wasn’t even considered a candidate for child mental therapy. Honestly, even if he were, I didn’t have the money for treatment.

Then things went from bad to worse. At first the doctors thought he developed irritable bowel syndrome often exaggerated by nerves. This condition became more apparent during his second year of high school. Unfortunately, the worst was still yet to come.

Pepto Bismol became Pete’s best friend, and he carried a small bottle wherever he went. As soon as that all too familiar pain hit, he’d open the bottle and swallow a mouthful. Yes, I alerted his teachers so if he needed to quickly leave the classroom, they wouldn’t try to detain him. While he wasn’t happy about having others know his situation, he was still grateful that they allowed him to exit the room without a fuss.

Pete opted not to attend college and while I wasn’t thrilled with his decision, a part of me blew out a sigh of relief. I had no idea where I’d get tuition money. At that time, student loans had not become popular and obtaining one wasn’t easy. With Pete’s condition, he wanted to be alone, and trucking was something he thought he could do.

He graduated from high school at 18 and agreed to seeking employment for one year in the company where I worked. I encouraged him to take that year to be completely sure of his decision to drive a truck for a living.

It wasn’t common for my supervisor to ask to speak with me privately so when he did, my stomach felt like it hit the floor. Yes, I suffer from IBS.

He told me my son passed out and they were calling an ambulance and I should leave to be with him.

Once in the ER and after many tests, it was determined that Pete was bleeding internally. What? Internally? How? What on earth is wrong?

While more tests were being made, I excused myself to find the nearest restroom. My IBS kicked in again.

I made it back to the ER cubical seconds before the doctor. His diagnosis wasn’t good. Pete had ulcerative colitis with several bleeding ulcers in his bowels. Pete’s hemoglobin, rather than being between 11 and 13 was down to five. He needed blood and badly.

Three units of blood and several IV meds later, Pete’s hemoglobin was up to nine. Three days later, he was released from the hospital with a referral to a doctor who specializes in UC.

The next ten years were hit and miss with more doctor visits than I can remember. We often tried to make light of the situation saying that if he were given any more medication and jumped up and down, he’d rattle. Yet, that was the life he led. Work, eat, poop, mediation, sleep and the next day would begin again. And his psoriasis persisted.

Pete’s social life increased by one sort-of new friend. He became remarkably close to his cousin Nicky, a very wild young man from his father’s side of the family. However wild he was, he and Pete got along wonderfully and helped bring Pete out his self-imposed shell a bit more. I was delighted until I found out that Nicky also encouraged Pete to drink more than just a few beers.

The alcohol consumption didn’t help Pete’s UC one bit. In fact, it made it worse. But Pete being the private person he was, never told anyone. Not even me. Unknown to me, he carried extra underwear in a pouch while he worked so should a slippage of this bowels occur, he could change, and I’d never be aware as I still washed all his clothes.

One Halloween eve, Nicky called to inform Pete about a Halloween party in a nearby town. Pete didn’t want to go but Nicky insisted. Pete caved and finally agreed. It was the best thing to happen. That night, Pete met the woman who would two years later become his wife.

Angela was as sports crazy as Pete. No, wait! She was worse. While Pete loved every sport that was played, Angie kept track of the players, their stats, salaries, health conditions that might affect their games. Etc. It was definitely a match made in heaven. Then Pete told her about his psoriasis and UC.

She didn’t care. “I’m not going to marry you because you have physical problems. I want to marry you because I love you. We’ll worry about your health once I can take care of you.” They set the date.

Three years later, Angie called me. They lived only a few hours away. “You need to get to the hospital. Pete needs surgery.”

His UC had gotten so bad, it was now threatening his life. The surgery lasted twelve hours and a complete ileostomy was performed. While Pete was happy that his UC would be more manageable, he was horrified that he would be wearing a colostomy bag for the rest of his life.

What was supposed to be a two-week recovery period, turned into a three-year lingering illness and recovery. From one surgery to one infection, to a regimen of procedures, to more surgeries and infections, finally after three years, Pete was deemed ready to return to the work arena. He was still not happy with wearing a “bag,” but he needed to work.

One year later, a friend called him stating a doctor had moved into the area that performed a special kind of reverse colostomy. Pete explained that he had no bowels to reverse. His friend explained that the new procedure was a BCIR which removed the external bag but give him one internally that was emptied a few times a day by use of a catheter. Pete called the new doctor and made an appointment.

The doctor explained that the surgery doesn’t work for everyone. For some reason, not everyone’s body can handle the new procedure. Pete said they’d never know until they tried, and he was more than willing to try.

Finally, something went right for Pete! The surgery was a success, and the medication Pete would be on for the rest of his life began to clear his psoriasis. Everything was falling into place.

Because he’d been out of work for so long, his company said they couldn’t hold his job. However, once healed from this new surgery, he found another that he said he liked better. He was still driving a truck but enjoyed his co-workers more than previously. He was a hard worker and had the respect of others in the company – until two years later.

A disgruntled co-worker arrived at work in a very foul mood. It was his responsibility to secure each load on each flatbed truck – just like the one Pete drove.

Pete made it part of his responsibility to check each load before he left the truckyard. On that fateful day, the load was loose. Pete approached Hank and told him to fix the ties on his truck.

To this day, we are not clear as to what happened. This is all we know for sure: an argument ensued, and Pete said “(expletive), I’ll fix my own (expletive) truck.” Then he left to make his delivery. That day, we know Pete was delivering I-beams to a construction site. If the load hadn’t strapped down tight enough, each I-beam could have the possibility of sliding of the truck into any car driving behind him.

What is still uncertain: Pete got back to the yard and according to Hank, the argument resumed with Hank attacking Pete (this was stated by Hank.). He hit Pete hard enough to knock him unconscious and then Hank left. Someone inside heard tires screeching and ran out to find Pete lying in the dirt. They weren’t’ sure if was alive or dead. They called the ambulance.

Angie called me as soon as they called her. “OMG, please get to the hospital. Pete’s in the ER.”

I’m now thinking something is wrong with his bowels. What else could it be? He’d been fine for three years but even the doctor said he could easily relapse.

I made the two-and-a-half-hour drive in about ninety minutes thankful that every mile didn’t produce a following police car ready to give me a ticket.

Once in the ER, I was directed to the ICU. What? ICU? For a bowel problem? That didn’t make sense, but I followed the path to the ICU where I met Angie. She was shaking and pale. Pete was sitting up with a huge bandage around his head. What the heck?

Angie explained what she knew. The doctor came in and announced somberly that Pete had a fractured skull. HUH? What? How? How hard did that guy hit him? And with what?

The fracture has healed but the damage produced irreversible brain damage.

Here we are now five years later. Pete still needs a cane to walk. It was only last year that he called and said, “Mom, I graduated. I no longer need the walker. I’m using a cane now.” He still has blurred vision and short-term memory loss. In fact, he called me two days after that call announcing he was using a cane and repeated the conversation almost verbatim. He still experiences extreme sensitivity on a daily basis to light and sound. He can’t sit still for more than fifteen minutes at a time. His neck is still to the point where he can’t turn it more than a 45-degree angle. He is still no longer able to drive. His doctor told him that he needs a companion if he plans on walking through his neighborhood since his gait is still and always will be unsteady. Angie takes him shopping with her weekly so he could get some exercise. Pete walks around the house from room to room.

Another downside to all this is one of the medications he needs. As the doctor explained, it could have one of three side effects: complete lethargy, severe depression, or heightened anger issues. Pete ended up with the anger issues. In a way, it’s a good thing. When he finds himself frustrated, he gets extremely angry. When that happens, he shouts. That gives him a severe headache and he goes to bed. It’s much better than feeling nothing at all or becoming suicidal. He’s prone to seizures which make him faint.

We are now at the present day – almost seven years since the attack. Pete’s condition hasn’t changed. Every doctor he has seen says the same thing: he’ll never get better. Will he get worse? Probably not but he’ll never be the person he was. Does he enjoy any part of his life? Yes, for only a few minutes a day. Do I see him every two weeks as I used to? No. it’s unfortunate but he wouldn’t remember if I did. I see him a few times a year. Even at that, when we speak on the phone, which we do every week, he’ll ask when the last time we spoke – not when I visited, but when we spoke. I tell him we spoke on the phone two days ago and I saw him for his birthday a few months ago. He doesn’t remember.

It breaks my heart to think of my son in this condition especially knowing there isn’t a thing I can do to make him better.

I think of him and pray for him every day. My heart bleeds for him but there isn’t a thing I can do but worry. I worry he might stumble and fall. I worry that while Angie is at work, something will happen that will make him worse.

My son will be 56 years old in 2022 and I worry constantly.

Like all mothers, we all worry constantly.

My mom once told me when I was pregnant with Pete, “A mother’s worry is never done.”

She was so right!