To whom it may concern: Twitter, Tears & Search Engines

From my Twitter account:

my heart is breaking for the person who Googled “how to tell if my 2 y/o has Duchenne Muscular Dystrophy” & got me #sendinghugstostrangers

From my WordPress Site Stat Page: Search Engine Terms

how can i tell if my 2 and a half year old has muscular dystrophy

I’m sitting at my laptop having a big ugly cry for you, whoever you are.  Maybe your child does not have muscular dystrophy, maybe they do.  I guess neither of us know, right now.

I wish I could find you.

I tried Googling ‘who Googled “how can I tell if my 2 and a half year old has muscular dystrophy?” and got links to my own blog.  Funny, because I haven’t posted this yet.

Ahh, me.  I try to be funny and see the brighter side of things.  If I didn’t I would go insane.  (No, I’m not being funny here, although I guess it could be;)

Duchenne Muscular Dystrophy.

It sucks, big time.  It steals life and sucks out your soul.  And this is the view of a parent – watching your child with his enlarged calf muscles and scraped knees stumble and fall – again and again.  You watch your son finally master some playground skill that kids half his age can do with their eyes closed.  Look, mommy. I’m climbing the ladder to the slide!

You don’t want to say be careful! because that’s all he knows.  He knows he falls, a lot.  He knows his friends don’t fall so much. If saying be careful!  would stop him from falling it would have by now.  So you smile, and say, wow! Look at you go, up so high! through a clenched jaw.

And you watch his hands with weak muscles and loose ligaments grip the rails of the ladder to the slide.  You watch his legs with enlarged calf muscles – so tightly knotted – cautiously reach for the next rung on the ladder.  And you hold your breath.  And think to yourself, I need to appreciate this moment, this is the best it will be.

And time moves on.

As my son moves through life his muscles break down, only to be rebuilt with fat cells, instead of muscle.  I’ve wrote about the technical details in other parts of my blog.  I don’t want to go into them here.

I have a Science background.  I hide in the facts, and sometimes ignore the feelings.

When I walked into the doctor’s office, June 23, 2010, I knew something was up.  It was the chairs.  In the centre of the office were three chairs placed in the classic counselling, triangular position where the people seated feel connected, but are a slight angle to each other so they can have privacy to their thoughts and feelings.

I sat in a chair.

The children played on the floor.

The doctor leaned forward, “I have a diagnosis for you.”

Like she was offering me an unusual appetizer.

“Duchenne Muscular Dystrophy.”

I cried.  I had known two young men with Duchenne Muscular Dystrophy, and both of them had died in their teens.  (I realise now there is more hope, especially if people decide to use ventilators.)

I cried.  The doctor looked concerned, and went on.  She talked about increasing life expectancy through steroid use and medical care.

So, back to you, the unknown person who stumbled across my blog in a search for truth:

How do you know if your child has muscular dystrophy?

Someone tells you.

But, first, you need to ask the questions.  You need to ask your doctor, ask a pediatrician and chase down a diagnosis.  We were lucky, we stumbled into our diagnosis out of sheer dumb luck.  But we had been asking what’s wrong? for most of my son’s life.

He was just a little late on meeting all his motor milestones – sitting at  7 months instead of 6, walking at 16 months instead of 12.  But all within ‘normal’ ranges.  Our family doctor was not concerned.  One of my son’s legs turned out, he never really crawled properly.  Even his walking was awkward and ambling.  On his second birthday my son fell and fractured his femur.  The break went from his hip to just above his knee.

Leaving party guests sitting with cake, Hubby and I rushed him to the hospital.  Three hospitals, one surgery and one hip spica cast later, we still did not know he had Duchenne MD.  We asked the countless medical professionals why his leg broke from a trip on a suburban lawn.  No one had answers.  Fast-forward to my daughter’s birth and major genetic issues.  We were on a first name basis with the Chief of Genetics.  We asked the doctor, and she thought it was a sign of a more generalized muscle weakness (it is nearly statistically impossible to have two children with unrelated genetic issues like this).  We still did not know he had Duchenne MD.  One kind pediatrician, upon hearing of the problems my son was having with all things muscular, referred us to a pediatric clinic for children with special needs.

It was at this clinic we met with the right doctor who asked the right questions and sent off the right testing.

Our genetic test was proof – Duchenne Muscular Dystrophy.

We’re lucky, I guess.

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About Angela

Super-powered, Special Ed teacher and special needs mama to FOUR (!) children with an assortment of special needs; including Duchenne Muscular Dystrophy and Prader Willi Syndrome. Our family features a heavy dose of good ol' ADHD). I blog about our halfpastnormal life.
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