In the Pursuit of Perfection

(or So What Did You Eat Today?)

We just got home from a weekend conference where we had hoped that our older son would realize that he is really not so alone in this world.  I’m not sure that this objective was met – it’s hard to get much in-depth emotional processing out of a 6-year-old.  I, however, came away with a whole host of revelations of my own.

But to get to those, I need to start at the beginning.  You see, my son was born with a very rare, very serious metabolic disorder that, if left untreated, causes irreversible damage to the central nervous system.  Or to be exact: brain damage.

It is hard to fathom that the very foods that so many of us eat, and take for granted, are toxic to the hundreds of thousands of people with inherited metabolic disorders.

To protect both his and my anonymity, I’m not going to name the specific metabolic disorder that he has.  His specific diagnosis isn’t all that pertinent, and I hope my own thoughts on this topic apply to anyone raising a special-needs child, far beyond the reaches of our very small metabolic community.

Besides, if there were a Venn diagram of all of the people with this particular disease, and all of the families headed up by two moms or two dads, in the intersection of those two circles is exactly one family.  Ours.  We are a minority within a minority.  And that is part of why it can feel so isolating.

So getting back to the beginning… I had a complicated pregnancy with our first son.  The worries began at the 20-week mark when the routine anatomy scan turned up concerns with his lungs and kidneys.  I spent the rest of my pregnancy under careful watch, with near-weekly ultrasounds to monitor the both of us.  We changed to a hospital with a NICU on site.  We bought minimal clothes and baby gear.  I resisted putting the crib together and decorating the nursery, terrified that we wouldn’t have a baby to bring home.

My due date came, and went.  But when I finally did birth our son, the NICU nurse who attended the delivery proclaimed “well that’s the healthiest baby I’ve ever seen.”  There were ultrasounds of every organ and everything checked out fine.  He was healthy.  He was perfect.  We were discharged a few days later.  I remember sitting with him in the rocking chair in his nursery, in floods of tears.  This was a moment that I had long and desperately hoped for, that I feared would never come to pass.  But it did, and here I was rocking my son in his nursery.

And then, less than 24 hours after coming home, the phone rang.  Something had turned up on the newborn screening test.  It probably wasn’t anything to worry about, we were told.  We needed to take him for additional testing – immediately.  We were told not to Google, advice that we promptly ignored.  The information online was useless, and did nothing to assuage our fears and anxieties.

Of course, it wasn’t a false positive.  There was a lot to worry about.

At the time I hated the newborn screening test.  I know now, with a few years’ distance, that this test saved my son’s life.  But at the time, I hated it for disrupting the illusion of my perfect baby.  I had spent the last 20 weeks fearing the worst.  I had just had 3 euphoric days of holding perfection in my own arms.  He was here – alive, healthy, perfect – and then this one phone call took all of that away in an instant.  I hated the newborn screening test because I was angry and needed someone, or something, to blame.  How could this be happening?  After all we had been through why couldn’t I be allowed to hold onto this illusion just a little bit longer?

There are approximately 7,000 different types of rare diseases, of which only about 5% have a treatment [source: Global Genes].  I know that my son’s condition is considered to be one of the treatable diseases.  But this “treatment” borders on cruel at times.  He has to eat a very restrictive diet and subsists mostly on a liquid formula.  He is hungry a lot of the time.  The diet is so demanding that a large number of patients (especially adolescents and adults) are non-compliant or not-as-compliant as doctors would like.  It’s just too hard.  There is too much deprivation required.  I know my son is learning responsibility, and self-control, and delayed-gratification, and I’m awed by his maturity and how well he copes with what life has dealt him.  But it saddens me that we ask him, on a daily basis, to be so “grown-up,” at a time when he should be able to just be a kid.

For a long time after he was born, I couldn’t go out to eat.  I couldn’t bear to be around other parents, watching them feed their kids anything they wanted.  It was too hard.  I envied all of those parents, who didn’t have to worry about every single piece of food that their child put in their mouths.  All.  Day.  Long.  I envied those with normal children.  I quietly seethed in anger and jealousy that my child wasn’t normal.  That my baby was deformed or somehow broken.

The first clinic we went to told us that they had, up until very recently, a social worker on staff.  It’s too bad that clinics do not seem to support the psychological processing of this kind of news, first to the parents and later to the patient.  There is so much focus on medical treatment protocols that the overwhelming emotional processing is overlooked and neglected.

I remember that, at the second clinic we visited, the doctors kept telling me over and over and over again “he’s perfect” and I wanted to scream each and every time “no he’s not.”  It felt as if by saying this, repeatedly, they could make it so.

At one point, very early on, it even crossed my mind that we should put him up for adoption.  Not because I didn’t love him with every fiber of my being or didn’t think we could manage his condition, but because it felt like too much “otherness” to thrust on the shoulders of this very tiny baby.

Even at this conference, we didn’t see our family reflected back at us.  As with many genetic rare diseases, the patient population is strikingly homogeneous, which seems to magnify even the slightest of differences.

As a mother, one of the cruelest side effects of this disease it that it robs you of your ability to feed your child.  It disrupts the most natural of interactions between mother and child.  I could not breastfeed him the way I wanted, I can’t just give him any snack when he is hungry, I can’t leave any food-based interaction to chance.  When it comes to food, there is no room for spontaneity in our lives.  Every meal, every snack, every food-based event must be thought about in advance.  We don’t leave the house without knowing exactly where the next meal will come from.  We navigate meals out, birthday parties, school lunches, school parties, holidays, travel.  We plan ahead so that there is room for special treats.  We try to always be ready for the unexpected.

This is a far-cry from the expectation I had before he was born.  I wasn’t going to be a short-order cook.  I was going to make one meal for the whole family to eat.  Son T(wo), with food allergies of his own, put a decisive end to that mirage.

Son O(ne)’s diagnosis even changed my own relationship to food.  We rarely go out to eat, and not just because it’s expensive and dining with two small children is more work than fun.  It’s more because food has lost a lot of its pleasure.  It has been reduced down to nothing more than fuel for the body.

But we make it work.  We cook and plan and unconditionally support him.  We teach him to be his own advocate and to know what he can and cannot eat.  He is blessed with exactly the right temperament to manage this disease.  He takes it in stride.  Not that it makes it easy:

O: I’m the only one in my class with <disease X>.  I know because I asked everyone.

And then on our way to a local event:

O: Will everyone with <disease X> from <our town> be there?
Me: Yes! In fact, everyone from <our country> will be there! It’s just you.

It’s not like we’ve been withholding children from him.  It’s just that he’s the only one.  Truly one of a kind.  [Correction: I met another family who also lives in our county, so there are two kids now!]

As I found myself sharing my son’s story, and by extension my own, I had forgotten how much of my own grief I had buried.  I was surprised when the tears welled up because I had forgotten, or maybe I had to forget in those early days, what we had lost… hopes and dreams and illusions and expectations were dramatically altered.  I had a child to take care of, a child who needed me even more than I had been prepared for, and no time to dwell on my own emotions.

For the most part, management of my son’s medical condition and diet has receded to the background and just become part of our daily routine.  It’s still there, and still requires vigilance and monitoring, but it’s not as front-and-center in our lives as it was during the first few years of his life.   Sometimes I even think we make it look easy, and that can be frustrating too.  Not everyone appreciates what goes into the day-to-day management, or remembers to think about what my son is going to eat at an event.  Perhaps the nicest part of the conference was the break from meal planning for two whole days!

And maybe that’s why the conference was in some ways exhausting and over-stimulating.  This was the topic of non-stop conversation over the course of several days: presentations, break-out sessions, meal-time conversations, elevator small-talk.  We haven’t talked this much about this topic since he was born.  It was a strange combination of hope, despair, pride, regret, connection, isolation.

But here we are, six years later and I’ve learned that he is perfect.  He always was, and always will be.  He is perfectly my son.  And that’s all that matters.

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