Not quite gone, or forgotten


OK folks, I’m officially going to put good ol’ halfpastnormal into semi-permeant retirement as I work on a few other projects.

So what you’ll see are our greatest hits, and a few reference pages about Prader-Willi Syndrome and Duchenne Muscular Dystrophy and a bunch of other things (ADHD included).

And I hesitate to do this because I know how this blog has touched so many people in different ways – from parents of children with special needs, to practitioners, to the folks themselves – and I love you for it.

Thanks for staying on with halfpastnormal


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halfpastnormal is who we *still* are


Welcome to halfpastnormal, a blog about our super-powered special needs family.  We try to live life to the fullest as we juggle the strengths and needs of all family members.  Hubby has ADD, my six year old has Duchenne Muscular Dystrophy, my four year old has Prader Willi Syndrome and my two year old is typically developing, not that we love him any less for it.

Regular readers may notice that I’ve fallen behind in frequent updates – my apologies, but we’re expecting Baby #4 in January, so I’m spending naptime napping, rather than blogging.  I hope to fix that now we’ve settle into our new home in Smalltown, Ontario.  We’ve recently moved from the busy Greater Toronto Area, population 6 million and famed for traffic, condos, and a high cost of living to Smalltown, Ontario, famed for farms, forests and lakes, and close ties to family and friends.  And you can bet we’re thrilled to be living in Smalltown.  The kids are happier, Hubby and I are happier and we are truly living life to the fullest.


Right now our days are spent with me as SAHM – tackling housework and visiting our local Ontario Early Years Centre with two year old The Dunk.  The Dunk is such a regular at the centre that staff ask him to help with chores such as loading the dishwasher, cleaning, and vacuuming!  He loves it.


Little Miss Adorable, a proud four year old with Prader Willi Syndrome started Kindergarten this year in our local public school.  School is a place she shines, super social and outgoing, all 360 students know her by name.  The day she started walking independently all staff knew about it 15 minutes after her arrival.  Little Miss Adorable loves animals (especially our latest addition, a new dog named Maggie) and is a veteran of therapeutic riding and dance class.  She also has the Princess Gene (it’s not a coincidence that her first steps were in a large urban shopping mall, where she then proceeded to march into high end jewelry and clothing stores).


Six year old Mr. Sensitive has Duchenne Muscular Dystrophy and is considered to be ‘in a good place’ with this progressive disease.  Check out Right Now for more on this.  He can walk, run, and hop (sort of) and fatigues easily and gets muscle cramps, but he loves exploring the forests, lakes and wetlands that surround our new home.  Mr. Sensitive loves rough and tumble play with other kids, visits to the library and Early Years Centre and joining the boys in Beavers on their adventures.

Welcome to our halfpastnormal life, stick around, have a cup of tea and visit for a while.  We’re thrilled you dropped by.

Please check out:

The Adventures of Little Miss Adorable

Mr. Sensitive vs. His New Winter Coat

My Husband is Superman

A Story of Angels – Before you were born

In Praise of Slow

Big Truck – A Day in the Life of The Dunk


Posted in Big City to Small Town, Duchenne Muscular Dystrophy, Halfpastnormal is who we are, Parenting, Prader-Willi Syndrome, Sensory Processing Disorder | Tagged , , , , | 4 Comments

Halfpastnormal – Moving with kids


Thoughts on moving with kids:

One word – don’t

OK, sometimes you have no choice. We had to move, and the place we’re at now is WAAAAY better for our quirky needs.

Accessible bathroom – check

Wheelchair ramp – check

Accessible bedroom – check

Huge backyard for the kids to play in – check that too

Office for me – absolutely

So we’re now in what could be our dream house, of sorts, a haunted 1930’s house with a modern addition tacked on set on a huge property in the middle of our town. And we can see the lake from the end of our driveway.

But honestly, the kids would’ve been happy moving into an RV and roaming the continent. (Requests included Florida, Mexico, and Hawaii 😉

What we’re left with is dealing with stuff. And there’s SOOOO much of it. It feels like we’re living in an episode of hoarders – furniture, boxes and clothes scattered all over the place. The day after our move, Hubby set up my office for me, and three days after our move and we still haven’t assembled the kids’ beds. They’re actually pretty happy sleeping in a heap of sleeping bags on the living room floor. (TV and internet services were set up even before we moved in.)

Of course, there’ve been a few glitches in our move. Like the fact that we have no hot water. It’s truly not the landlord’s fault, just a service repair issue (something to do with the flood that filled our basement on the night we moved in) and a now dysfunctional hot water heater. And given the fact that it’s a weekend and service people seem to take a while about these things, we haven’t had hot water for three days.

So we make due. My stove works, so do the kettles, so boiling water for doing dishes gives a whole rustic feel to the place. Welcome to our halfpastnormal life.

But if you’ve been following me on Twitter, you’ll know we had some MAJOR issues with Uhaul. Now, I don’t want to disparage anyone, but if I’ve booked a 26’ truck and they confirmed the reservation, and then switched it to a 9’ van that I had to pick up in another town half an hour a way, I have a right to be pissed off.

Can you imagine fitting all the crap six people have in a 9’ van? I think not.

So Uhaul tried to fix things, apparently. Last reservation showed a booking in a town over two hours away. A total of four hours of driving to pick up and drop off, plus loading all my stuff.

Uh, no.

Fortunately my local smalltown storage company came through; I got a small truck and did a few runs over a couple days with some heavy backbreaking lifting by Hubby.

In short, we made it work.

And this, my friends, is our halfpastnormal life – aka the land of special needs. Stuff happens, things don’t go according to plan, and some flexible thinking, hard work, and stick-with-it-to-itness (yes, it’s a word) are what carries you through. Some of my Christian friends might call it grace and perseverance.

But it’s what special needs parents go through every day.

Welcome to it. Halfpastnormal is who we all are.



Posted in Big City to Small Town, disABILTY, Halfpastnormal is who we are, Parenting, Special Needs | Tagged , , , , , , , | Leave a comment


What matters to the average nine year old? Birthday party invitation and the stuff of a nine year old with DMD

What matters to the average nine year old?
Birthday party invitation and the stuff of a nine year old with DMD


A couple days ago a nine year old with Duchenne Muscular Dystrophy passed away. Nine years old. Nine.

Dogs live longer than this child did.

For you folks out there that know me, the long-time listeners, first time callers kinda people, you know I tend to shy away from the serious stuff. Because there’s enough of it out there already, and I’m already so busy with the challenges of daily life (unpacking after our recent move and getting the kids to school and various appointments) I’ve become kinda short sighted in all this.

Most days I can barely see beyond my cup of coffee.

And honestly, that’s not a bad thing. The land of denial is a safe and comfortable place. But, sometimes something happens that jolts you out of complacency and hits you. Hard.

Like a nine year old passing away from complications resulting from a common cold.

A freaking nine year old.

I don’t pretend to know the family and this is their story to tell, so I’m leaving it here; but I just want to say that Mr. Sensitive is turning nine this summer. Nine. And we’re truly blessed with good health or freaking good luck – I don’t know which it is – although all the kids had very bad colds and upper respiratory issues this winter (the Dunk ended up on inhalers); not one child had the pneumonia that swept through our town. Friends, family, and even their teachers did.

So we’re lucky, I guess.


I can’t imagine what this boy’s family is going through right now, but my thoughts and prayers are with his family, and all families touched by DMD.





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