What is normal now?


Update: We’re back at the hospital.  It’s not nearly as bad as the last time when Marshall had the flu, but given his respiratory issues (choanal stenosis), any congestion causes big problems for him.  

I read an incredible book last year that I haven’t been able to stop thinking about since I first picked it up.  Andrew Solomon’s “Far From the Tree” is about people who differ from societal norms and the families of those people.  Deafness, Down syndrome, exceptionally gifted thinkers, and many other topics are covered.  It’s a fascinating look at small groups of our population who, when you add it all up, are all around us, struggling to manoeuvre through a world that doesn’t necessarily celebrate differences.  Somewhere, maybe some time traveller knew what would happen to us this year and planted the book in my life to prepare me for what lay ahead.

When I read the book, there was a theme that was part of most of the chapters that has stayed in my mind.  For many of the parents of children with profound disabilities, most of them say that even if given the opportunity to go back in time and chance the circumstances, they would not do so.  Changing their child – giving them perfect health – would take away all that their child has added to their lives.

I remember reading that with incredulity.  Surely, they were kidding, right?  You wouldn’t wish away any suffering and pain they suffered?  I couldn’t believe it.

The other day, Bridget met up with a friend of ours and her daughter.  With Bridget were our two sons, Quinn and Marshall.  When I asked her how it went, I could already see it in her eyes.  “It was hard.  There were a lot of kids there, and none of them had any differences.”

My heart broke.  This must have been incredibly difficult for Bridget.  As a general rule, she does not give a damn what people think of her, and she is a bold and sassy person (she’s a redhead, right?), but this was hard for her to bear.  In all likelihood, most of the parents and kids were too busy playing to have noticed Marshall, but some probably did.  No one asked about him, but that doesn’t matter.  When I’ve been out with him, walking around with him wrapped in a sling around my chest, I have felt an intense urge to keep him cocooned next to me, protected from all prying eyes.

I don’t go on Facebook much anymore, as I mentioned in an earlier post.  Besides wanting to be anti-social, I’m also intensely jealous right now.  I see photos of your beautiful newborns, and I long to remember what it feels like to hold a child and not have worry be the overriding emotion.  I am jealous that this time around, I have barely had the chance to hold my child without constant anxiety.

Anyway, the other day, I found myself on Facebook secretly catching up on the lives of my friends and co-workers.  I noticed that Bridget had joined a new group – an Apert syndrome awareness group.  She had tagged me in her first post to the group forum.  I clicked on it with a not inconsiderable amount of dread.  The topic concerned whether or not other parents had any warning before the birth of their child (the majority of whom said no, but this is a topic I’m not ready to talk about yet).  Part way through the responses, I realized that there were a couple of posts that were completely different in tone and perspective.  Instead of the usual first-person response (“I didn’t know…”, “I had no warning…”), all of a sudden a few talked about how their parents knew or didn’t know before their birth.

Although I shouldn’t have been surprised, I was not expecting someone with the actual syndrome in question to be posting a response.  Why not?  In my mind, I have been fearing the worst and not giving myself a chance to hope.

Bridget sent me a powerful email the other night.  In it, she said that she needed to move past the hope that one day, our child would look “normal”, and the sooner this happened, the better.  After reading some of the responses on the Apert syndrome forum, I wondered if my thoughts about normalcy and such were insulting to the men and women living with the syndrome.  This surely must be something they’ve been subjected to their entire lives.  I know I need to move past this and start thinking positively, for the sake of my child and my mental health, because I’m tired of the fear I feel.

It’s a beautiful Sunday afternoon.  I’m sitting in our seventh-floor room, finishing off this post that I started in the middle of the night.  Next to me, Marshall is singing to me.  His cooing sounds soothe me when I should be the one singing to him.  I’m going to go pick him up and try to rock him to sleep, hoping he has sweet dreams of endless milk supply and dry diapers.

3 thoughts on “What is normal now?

  1. Keep processing. You are both amazing parents. I seem to remember us talking about that book, because I heard the interview on CBC with the author last year. Crazy and fantastic that you read it.


  2. Hi!My name is Francesca McGuire and I just wrote an article about my friend Vivi, a college student living with Apert. francescamcguiredj.wordpress.com and I think you should give it a read! It will enlighten you as to how children with Apert’s grow up to be individuals with so much to offer and inspire the world. I’m also writing another article about Apert awareness and I was wondering if I could quote a few sentences from your blog? As another family’s experience. If that’s not okay its totally fine! But I think you should definitely read about Vivi. Have a good one:)


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