Finding the Narrow Path

Life is normal, or at least a simulacrum of normalcy that is close enough to count. Since the last scan (in sum, stable), Colin has started school again and is finally able to live without the specter of chemo hanging over his head. If he’s tired, he’s just tired and maybe coming down with something. If his skin is funky, I just slap Aquaphor on it and keep an eye on it.

Returning to Memphis in October, I was struck by the difference in Colin and my entire existence from the previous year. Walking back to Memphis Grizzlies House (the on-campus hotel for patients) from the hospital on the night of our arrival, I admired the backdrop of the sunset and felt the shiver of passing through a ghost, in this case that of myself jogging the one-mile loop around the hospital grounds.

A year before, I had been training for the 5K race associated with the St. Jude marathon, huffing my way around the loop as the de facto smoking police. At the time, I didn’t dare imagine what my life would be like a year from then. Not only was the future simply inscrutable, but it is dizzying, in the sense of the vertigo of diagnosis or other life-changing news, to contemplate the variety of outcomes that fan out from a point in time.

We may intellectually know that the next year could bring a fatal or traumatizing car wreck, yet we don’t factor that into our calculus of future events. Embroiled in the gritty slog of high-dose chemo, the unfavorable outcomes are close to the touch. Even now, while I feel like we have bought the near-certainty of some time with Colin, we know that he may end up on the downswing, and it is too painful a thing to contemplate with any firmness. I don’t hold onto the thought, but I keep it at arm’s length and within sight, like a tchotchke on the shelf, disused and accumulating dust but accessible. I pick it up and look at it, appreciative of the focus it brings to daily existence, and put it back where (for now, at least) it belongs.

Back at St. Jude, everybody clucked and cooed at Colin’s improvement. There, more than anywhere, people understand the importance of grasping the moment. The triumphs are no less glorious when they are followed by a fall.

I Don’t Care if It’s Short!

Starting school was an enormous milestone for Colin, who has been desperately jealous of Aidan, especially the new Holy Grail of the bus. The first day I picked Colin up from school, he sat in the bus exclaiming, “Me bus! Me bus!”

Partly because of the trach, he yells most everything he says. He is pretty emphatic when speaking anyway and has a notoriously exuberant personality that is underscored by the fact that he talks in all caps.

Returning to school was no small feat, though we are extremely fortunate to have a wonderful school system with competent and caring professionals. We know many other families who have struggled to get appropriate services for their children, and our experience has been the opposite.

Colin is in a special education class for preschool children, going for two-and-a-half hours four days a week. Although he’s eligible for busing, we weren’t able to coordinate that, since he would need a nurse on the bus. He has an aide who stays with him the whole day and gets the full battery of PT, OT and speech therapy at school.

After a year of near-isolation, school is a dramatic and welcome change. Colin pretty much wanted nothing to do with us from the first time we visited the class. He is finally exposed to peers and an environment that is his own and completely outside of the family or medical settings. Finally (!) he is using the walker on a regular basis. Overall, his strength has improved dramatically since starting school. However, the most noticeable change is in his speech.

I don’t have to reach far back to find memories of trying to coax Colin to open his mouth using lollipops. Uttering a single word was monumental. Now, he is singing Rudolph the Red Nosed Reindeer and chattering away about all sorts of things, half of which we can’t identify.

More important than all of the developmental changes we have seen, Colin is just plain happy. Hand-in-hand with his language improvement, he produces a lot more speech spontaneously. The hallmark moment for me was when he started saying, “I love you, Mommy.” Sometimes, he underscores the sentiment by scrunching up his face, tilting his head and gritting his teeth.

The ability to express himself verbally has opened up a door for Colin. Even though he has a long way to go, he has a new avenue to get what he wants and tell people how he feels. This has been a true liberation for a little boy who had been trapped in a really f-ed up body for so long.

A Gentleboy of Good Taste

Aside from school, the biggest news about Colin is that he has begun swallowing again. We found this out at a St. Jude fundraising event in New York that featured food from many fine restaurants around the city. He dogged chocolate mousse from Citarella, and I was ready to save him from his overindulgence, but nothing showed up in the trach or around the stoma! In addition to having supreme class in picking foods to test out his skills on, it turns out that chocolate mousse has the perfect texture.

We have been feeding him small quantities regularly (not always chocolate mousse, much to his chagrin) to help rehabilitate the tongue and mouth muscles that have atrophied. Technically, he needs to have a swallow study done, and we have one scheduled for the Wednesday after Christmas, but at this point we feel comfortable testing his skills and helping him improve.

The big news from the swallowing news (drum roll, please!) is that Colin is slated to have the trach removed (decannulated) in March. Our ENT in Memphis will see him after his January scan and wants us to return in February for a preparatory surgery, followed by permanent removal of the trach in March. The timing is contingent more on potential complications from seasonal respiratory illness than Colin’s condition. For a number of months after we remove the trach, he runs a greater risk of contracting pneumonia, so we are delaying it until the bulk of the winter passes.

Closing the Gap

There is nothing that sets Colin apart from normal kids more than the trach. Other kids point and ask questions, and they are usually more than a little freaked out by it. Removing the trach would go a huge way to making Colin less freakish. For our part, the trach prevents us from leaving him with anybody (except at school, where there is always a nurse on hand). I have been sleeping on a couch since May to stay in the same room as Colin, which turns out not to be such a bad thing since my back does better on the couch that’s in his room at home than it does on most beds.

When I first introduced the idea of having the trach out to Colin, he resisted it (similar to his reaction to removing the port). I probed and he said that it made him special, though to be fair I had to lead the witness. Now, however, he is excited about the prospect, and it’s easy to talk it up when our plans are fairly concrete.

Personally, I have remained steadfastly positive in my belief that the trach would come out yet pointedly patient about the timing. I could not allow myself to live only in the time and place where the trach was gone, since it seemed that his recovery was so slow compared to his brain tumor peers. Before we saw clinical evidence about the improved swallow, I felt that his condition at the time did not warrant prophylactic tracheostomy. Thus, I began to question when one decides to remove a trach for patients like Colin.

This is not an easy question to answer, particularly if one relies on Google to address life’s technical problems, as I do. The reality is that most children are trached because of airway issues or long-term use of a ventilator. Few need it for “bronchopulmonary toileting,” which even to me still sounds more disgusting than it really is (providing access to the airway for the purpose of removing secretions and other substances that penetrate the trachea). In the adult population, most people who need it for that purpose get weaned off of the trach because they suffer from a degenerative condition related to dementia or other neuro-muscular diseases.

Damn Google for creating a pervasive dependence on the internet for ad hoc education! I bought a textbook on swallowing disorders just in time for Colin to improve. Don’t get me wrong; I am endlessly grateful. Not only does improved swallowing allow us to remove the trach and restore Colin’s image of himself as a normal child, but it has phenomenally improved his quality of life.

Although Colin still can’t eat “normal” food, he can experience one of the fundamental pleasures of human existence. Right now, our biggest problem is feeding him something other than chocolate. This predilection I blame completely on his father, who often urged me to eat chocolate during my pregnancy with Colin. I had had a miscarriage between the boys and he wanted to see the baby kick, so I would eat chocolate to make fetus-Colin spaz out.

If he were out of the womb, I’m sure that would constitute some cruelty of some sort or at least a near-fetishistic dietary regimen. At this point, it’s hard to deny him. It’s no wonder that, for our Christmas celebration with the family, I made chocolate mousse.

Settling In

For Aidan, all of Colin’s transitions toward normalcy have helped him find his balance at school. Although his teachers were acutely aware that he might struggle at school, he found his rhythm and has settled into a nice groove. We didn’t sign him up for an extracurriculars, in large part because the fall was quite busy, but he started (on his own initiative) taking piano lessons. Although we have an adequate electric keyboard, he has asked for a piano for his birthday. This isn’t forthcoming, but we are trolling Craigslist for the distressed sale of a decent electric piano.

Aidan’s cynicism about Santa has not dampened his enthusiasm about Christmas. He asked to be put to bed as early as possible so he could wake up to Christmas as soon as possible. However, the impetus is not the presents (he has asked us not to spend too much money on presents and only to get a few things) but the day’s gathering with family. When I asked him how he felt about our Christmas last year, when we were together as a (nuclear) family but not with the rest of the family, his response was succinct: “bad.”

It can be hard to digest these facts as a parent. There are so many things we haven’t been able to dictate, and we have tried to make the best choices for our family. At this moment, it’s encouraging to know that he would prefer fewer gifts if he can spend time with his family. Thinking a year ago, when we tried to make the best of it, hanging stockings on Colin’s hospital crib and ducking out to meet with Colin’s neurosurgeon to talk about the latest scans, it is painful.

Aidan suffers collateral damage of Colin’s cancer without the concomitant fanfare. Colin is the star, the miracle of St. Jude. I don’t dispute any of that, and I marvel at Colin’s improvement, but I also feel Aidan’s pain. He had the wherewithal to tell me that he was jealous of the time I spent with Colin in the hospital. My pride at his emotional honesty mixed uncomfortably with my remorse over the missing time, the clock that stubbornly won’t turn back so I can capture that segment of Aidan’s life that sped by during Colin’s treatment.

Not Really Normal

The summer was like a release from prison, where I stood blinking in the blinding light of day, realizing that dogs would not pursue me beyond the fence. We all had to find a new kind of balance during the fall, slipping into the rhythm of life and the habits that bring us sanity.

But normal isn’t what it used to be. Our social circles include an inordinate amount of cancer families, which provides us with support and well informed encouragement, but also exposes us to the uncertainty and tragedy of this life. I don’t regret it, but it’s just not typical for people to watch the lives of so many children hanging in the balance.

On a more mundane level, it has been extremely difficult for me to reintegrate into the community. I don’t talk about the right things or in the right way. I don’t know how to be in public, especially when I’m by myself, which is rarely. In November, I went shopping for Christmas stuff and became almost paralyzed standing among the aisles of cheery seasonal ware. I stood on the verge of tears, calculating the differential between this year and the last. It’s not my own fear; it’s the accumulated suffering that gets to me.

Generally speaking, it’s impossible for me to care about shopping. I can look for things, but it all doesn’t seem to matter very much to me. It’s useful at Costco, where people tend to be anxious and impatient. I just stand there and let people go in front of me because I really don’t care.

My candor about my social awkwardness may give the impression that I’m kind of a mess, though I think that’s not the case. There are moments when the veneer cracks, and it’s healthier more than it’s not.

It’s an Emergency Alright

Recently, I ended up in the emergency room for abdominal pain. I ended up diagnosed with old person ailments that are too mortifying to detail, but the point is not about a sleepless Saturday but my arrival in that familiar place.

I have been to the emergency room at Danbury Hospital many times over the years, but the last occasion was Colin’s diagnosis. They have remodeled the check-in area since then and moved triage to another set of rooms. Sitting there, waiting for my own triage, I saw a family with young children.

I naturally thought about that Sunday I came to the hospital with Colin, the hours waiting for a CT scan and then waiting for the results, and then the doctor coming in to say, “It’s not good news.”

The waiting area of an emergency room is full of people who do not know what innocuous or horrible news awaits them. I had a hard time imaging that a family there might unwittingly be in the middle of an experience similar to my own.

Although I’m not prone to bouts of public crying, I succumbed quietly. An older man sitting near me offered to give me a hug, which I refused. However, he insisted on comforting me and held me hand, which I acceded to. This was a little bit reassuring to me but somewhere deeper in the spectrum of charity, in the sense that sometimes we receive people’s good will in a form that is not especially comforting or valuable but acknowledges the sentiment.

I had no idea how charitable I was being until he started rubbing the palm of my hand with his middle fingers and I quickly extracted my hand, jumping to my cell phone to check/make phantom text messages. If there is such a thing as an emergency room predator, I’ve found it.

Comedy and tragedy define life. If you find one without the other, well, you’re not really living.

The Ghost of Christmas Past

No season passes without reflexive reference to the seasons that preceded it. Dickens notwithstanding, Christmas especially falls victim to this habit. We are inordinately thankful to celebrate this holiday at home with both boys thriving.

Christmas last year was so momentous for Colin medically, but those days ultimately melted into the upward slope of his treatment and recovery. I look back at that time not with shock or pity but with awe and relief. For his part, Colin still seems to be processing the events that took place since diagnosis.

Sometimes, it’s very difficult for Colin to look at pictures of himself during treatment. One night, he sat and held a photo of our family taken in early December. It celebrates the holidays in a blue and white snowflake frame. We’re all wearing funny hats and glasses. I’m wearing a feather boa. Colin became so dolorous that we had to take the picture away and replace it with a pre-diagnosis souvenir photo of him and Aidan at Disneyland as Star Wars clone troopers.

It can be equally difficult for Colin to watch videos of himself before diagnosis, hale and hearty. I can only hope that the image of walking Colin inspires him to work hard to walk again. However, it makes him sad to see it and we have to be careful how we respond ourselves.

It seems like there is always a fine line. We need to navigate our place in the cancer world and the regular one. We need to gauge how much Aidan wants to be recognized as the supportive big brother and how much he needs to be just Aidan. We need to learn how to inspire Colin without pushing him into a dark place.

With Christmas, we balance our exuberance over being home with healthy frugality. How much do we celebrate improvement from last year rather than creating a new baseline? Onward and upward, we search for the narrow path in a minefield that is largely a manifestation of our own weakness.