The Boy in the Moon

I have more than a handful of friends who love and care about Niko.  But I have two friends who can truly relate and understand the world that I am in.  They are in similar, but very different, situations.  Much like Tolstoy's quote about happy and unhappy families, all healthy children are alike, but unhealthy children are sick in their own ways.

One of these two friends gave me a book over Christmas.  I have been devouring this book.  I'm surprised that I am able to find any time at all to read, but I'm almost half way through the book.

It's called "The Boy in the Moon", written by Ian Brown.  It's about the incredibly difficult journey of caring for a special needs child.  There are so many decisions to be made without any single right answer.  It's not so much about making good choices.  There's bad and then less bad.  The child in this book, Walker Brown, has a super rare condition called cardiofaciocutaneous syndrome (CFC).  What I’ve learned recently is that most “conditions” are super rare.  With the exception of down syndrome and autism, everything else that goes wrong with your child’s health is mind boggling.  Any condition that is considered abnormal causes most people to recoil in horror.  Abnormal conditions are always bad.  You don't see "special" people who were born with genetic mutations that allow them to fly, to never age, or to have self-cleaning epidermis that eliminates the need for bathing.  

Children with CFC are moderately delayed mentally.  They are often small in size for their age.  Most CFC kids can’t talk or eat on their own.  They are fed through G-tubes.  They are not compatible with toilet training.  Some CFC kids (including the one in this book) self mutilate by punching themselves in the face, bashing their ears in or kicking at their own genitals.  But many learn to walk and have normal life expectancy. The author is a journalist so the writing is smooth, honest and revealing.

Of the many striking topics in the book that caused me to pause and think, my mind went back to this: are we so different?  Have we become “that” family?

The following are a couple paragraphs from the book.

* * *

But let me ask you this: is what we've been through so different from what any parent goes through?  Even if you your child is as normal as a bright day, was our life so far from your own experience?  More intensive, perhaps; more extreme more often, yes.  But was it really different in kind? 

We weren’t disability masochists.  I met those people too, the parents of disabled children who seemed to relish their hardship and the opportunity to make everyone else feel guilty and privileged.  I disliked them, hated their sense of angry entitlement, their relentless self-pity masquerading as bravery and compassion, their inability to move on, to ask for help. They wanted the world to conform to their circumstances, whereas – as much as I could have put words to it – I simply wanted the rest of the world to admit (a minor request!) that our lives weren’t any different from anyone else’s, except in degree of concentration.  I realized I was delusional.  People often said, “How do you do it?  How are you still capable of laughing, when you have a son like that?”  And the answer was simple:  it was harder than anyone imagined, but more satisfying and rewarding as well.  What they didn’t say was:  why do you keep him at home with you?  Wasn’t there someplace where a child like Walker could be taken care of?  Where two parents wouldn’t carry the whole load, and could have a moment or two to work and live and remember who they were and who they could be?

* * *

My answer to the questions:  are we so different?  Have we become “that” family?  I would like to say no, we are not different.  We are normal.  But I don’t agree with the author of the book.  It’s foolish to pretend that our lives are not any different from everyone else’s.  While I certainly do not want any kind pity, we are different.  We have become “that” family.  I’m painfully aware of this now.  I see people looking over and smiling at Niko.  And a moment later the smile drops from their eyes while their lips remain frozen.  The lower half of their face cooperates with the façade that is their smile while their eyes betray them.  And I immediately know what they’re thinking, “I must not let them see my shameful uneasiness.  I must not upset “that” family.”  They have already compartmentalized us into a subgroup in their brain.  We are “that” family.  And what exactly is “that” family?  Group: “Special Needs” family.  Subgroup:  person(s) with deformities. 

I used to think that people with “special needs” or “abnormalities” belong to the other side of the line.  I didn’t really think that I was better than them.  I just subconsciously thought that abnormalities happen to families with abnormalities, certainly not to normal people like me or my friends.  I thought that the “special needs” family was a race within itself, as defining as the colour of one’s skin.  Unfortunately I know now that no one, nor any group of people, is immune to it.  And it happens a lot more often and to a lot more people than they are willing to admit or share.

When we go to all those hospital appointments, I know that the doctors and specialists see us as the “parents of an I-Cell child”. And I want to grab them and shake them and say, “No we are normal people!  This is a fluke! This should not have happened.”  But it did.

This fluke that has happened greatly impacted me in two ways.  First is the overwhelming love that I have for Niko that is often too painful to bear.  The second is my need to protect her… from stares, from questions, from judgment.  I see her as my vulnerable broken little angel.  And the protective maternal instinct is at an all time primal high.