Old Shoes- New Path

You get a strange feeling when you leave a place, like you’ll not only miss the people you loved there, but you’ll miss the person you were at that time and place, because you’ll never be the same, ever again.’ Azar Nafasi

Even though moving is one of the most inherently stressful things any of us ever do, our current move has been surprisingly smooth. It has been so smooth in fact, that the first real hiccup we have had, arrived a few mornings ago and it was barely enough to register a blip on the radar screen of chaos. Even though the blip was small, the message was big and I certainly took notice.

The hiccup was this- after a busy weekend, come Monday morning as we readied our 8 year old son for school, a thorough search of our current home revealed that his tennis shoes were no where to be found. Now like most kids he has a small collection of old shoes, and even though several pair of them still fit him- this was never going to do. Shoes, and which ones he places his feet in, are a very real conundrum in our household- a truth that can be witnessed by a plethora of unworn sneakers that simply ‘didn’t feel good’ after we got them home and he wore them for a few hours.

The reason for this is a quiet one that no one on the outside of our world would ever be able to surmise. As some of you may remember, our son lives with a chronic autoimmune disorder that sits just under the surface of his life.  Last April it roared to life and he ended up in the hospital because his immune system mistakenly attacked his legs. The only lingering side effect he has had to this, is that the tendons in his knees, ankles, and feet remain in a constant state of inflammation.

Looking at him today, you would never know this. As anyone who is a regular reader of Rx for the Soul knows, on most days he runs and jumps like a gazelle. This is possible only through a whole lot of behind the scenes actions that the world at large never sees. Right now, he takes three daily prescription medications that help keep both the infectious and the inflammatory processes in his body in check. He also obediently swallows spoonfuls of chocolate pudding designed to disguise the myriad of other concoctions that work to modulate his immune response so that his body does not once again send its antibodies to places they do not belong.

After he starts moving in the morning and gulps his requisite meds- he takes off into his day like a rocket. He rarely misses a beat. When he is in motion, he is happy and he is free. It’s when he gets quiet and his body rests, that the inflammation settles in like water pooling in potholes. So ever since his flare in April, because of the left over inflammation, he has become exceedingly picky about which shoes he will wear. So those missing shoes on Monday stopped us in our tracks; they are quite simply the only pair he will wear.

Inflammation is the hallmark of his illness- inflammation that happens on the inside, and often does not show much on the outside. Even we forget…but several months ago, when we were meeting with his immunologist a simple question was posed to us, one that unveiled the truth as stealthily as a magician sliding a scarf off of some stage prop:

“Does he walk like an old man when he gets out of bed in the morning?’

The question hung in the air for a moment while my husband and I looked back and forth at one another without saying a word. We both knew the answer- but neither of us wanted to voice it. It was me who finally spoke.

“He doesn’t walk in the mornings.’

The doctor looked at us quizzically, and I felt sheepish and embarrassed of my own words, words that spoke a truth that neither my husband nor I had even really been cognizant of- until that moment.

This is the truth: Ajay never walks in the morning.  The first words out of his mouth every day are “ I hurt. Can you carry me?” 

 This doctor’s simple question brought realization down like a landslide.  Not once- in years- has our son gotten out of bed and walked first thing in the morning.  How did we get here, without even realizing where we were?

As I began to stammer out an explanation to what clearly must have sounded absurd, this doctor put down her clipboard and gently held up her hand. She then went on to compassionately help us see that what we were telling her fit perfectly with what his physical exam and blood work were indicating.  What we were saying did not sound absurd to her at all. The amount of baseline inflammation in his body is such, that after a night’s sleep and hours of no weight bearing activity, his body simply hurts. She then commended us as parents, saying that we had learned to compromise and live around this so well that even in the midst of it, we couldn’t see it. We were not bad parents… we had simply found a way to make life happen the best way we could.

Her words made me cry- the number of days I have felt like a failure as a mother because of this mercurial illness are more than I care to count.  The number of doctors who have smirked at me and made me feel like an idiot take up more fingers than I have on both hands. The ways that we, as a family, have been questioned, accused, and shamed by those who sit on the sidelines and think they know the playbook- are truly too incomprehensible to even give voice to here.

Autoimmune disorders do not always behave to the liking of a poorly informed outer world, and often it is the least informed who have the loudest voice. For us, the only voice that really matters – is the one I have written about today. This doctor reminded us that Ajay’s truth is this; that just because he is active and he often looks anything but sick, this does not change his internal chemistry. She affirmed the fact that it is not mutually exclusive that he runs like a gazelle all day long- and that he also has a serious chronic illness. The fact that one of the leading experts in the world was not only validating his diagnosis, but also giving us an ‘Atta Boy’ for our small victories as parents, was a moment that meant more to us than she could ever know.

So back to those missing shoes, they symbolize an entire chapter of our lives- three years of a living hell that we have tried our best to get through gracefully but one that has left us all shaken and bruised. There will be things we leave behind as we begin anew, and the fear and isolation associated with Ajay’s illness is one of the things that will not make the trip. The silver lining to his hospitalization in April was that his transfer to an out of state facility secured his referral to not just the doctor I am writing about today, but to an entire team of doctors who specialize in pediatric auto-immune disorders.  Even though  conservative estimates indicate that there are currently more than 162,000 children in the United States who have the same condition as Ajay, physicians who treat it are few and far between. We are among the lucky-  we no longer have to explain, defend, or prove anything… but there is not a day that goes by that I do not think of  the many other families who are still alone in their fight.

Although we still have to carry Ajay out of bed each morning -we are now blessed with a medical team that will carry us on the days when we don’t know what to do… this fact in itself, is every bit as much of a new ‘home’ for us, as is the physical structure we will be moving into later this week.

When we leave this place we have called home for the last decade, we will never be the same people that we were there, and our lives will never be that same way – ever again.

We’re ready…

2 thoughts on “Old Shoes- New Path”

  1. What a perfectly beautiful thing to recognize — to not take with you this difficult chapter in Ajays life, to your new home. I too have been at the isolating and devastating end of not being believed (by family and friends) that another family member has a disease. Even a doctors diagnosis, the facts and the truth would not budge their calcified tiny minds or change their deplorable behavior towards me. Their true nature exposed when life flipped upside down – as yours has. What a silver lining though – to leave those individuals behind as you move from your old home to new. I say let ’em continue to read the playbook for Candy Land while you are playing Life- heck it might even make you giggle?! Keep going Annette, you and Brian are Superstars in a misunderstood, barely known world with Ajay. You are helping hundreds if not thousands of others navigate this specific disease by writing about it so openly and truthfully. Thank you for today’s (& everyday’s) RX. Keep going. And welcome *welcome* to your new home and new *supportive* surroundings!!

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