put that supermom cape away

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Every few months, I need a break from the advocating, lobbying, educating, motivating and inspiring.  A wise woman once said to me:  you know, sometimes you can fold up your Supermom cape and put it away.

This is brilliant advice for two reasons.

One, all ‘special needs parents’ need to rest from the heavy work of changing the world.

And two, let me not view myself in such high regard that I think I’m the only one who is capable of changing the world.  Many many others are chipping away at this important work – this is not my sole responsibility.  It is humbling to regularly remember that it isn’t all about me.

The break from being a ‘special needs mom’ is not a break from my ‘child with special needs.’  It is a break from society, systems and the small minded.

So I fold up my cape, and pack up my kids and board a flight to the west coast.

We disembark in the land of the lapping ocean and shadowy mountains. Our generous extended family fetes and feeds us.  We eat fish and chips at the wharf and meander around the bobbing boats at the marina.  Aaron chooses what yacht he’s going to buy for his girlfriend.  We amble through a hidden community garden on the abandoned train tracks.  We carefully examine every single exhibit at Science World and admire the views from the top of a mountain.  We gobble up corned beef hash at a breakfast joint with my daughter and her boyfriend.

We walk laps around the ferry, challenge each other to racing games at the video arcade and hold our hats on the windy deck.

My mom and dad take us to secret island places.  We visit the barking sea lions and chat with the goats at Coombs.  We shriek when we touch the sea cucumbers at the marine field station.  We turn over rocks to find scattering crabs.  We use binoculars to spot thousands of gulls feasting on herring eggs with Pappa Neil at the estuary.

We read chapter books at bedtime, and lounge in bed for a long time before we get up.  We eat pho and Nanaimo bars and lay on the floor while our one year old cousin and niece scampers over us.

All this is done on Aaron slow time, with no heed to clocks or schedules or meetings or the damn Internet.

Let’s give each other permission to fold up that Supermom cape and hide it in the back of the closet.  Sometimes we need to relax into these small moments with our kids, and leave the changing the world business to someone else.

 

humans of new york wisdom

As usual, Humans of New York offers up profound insight, just by walking up to people in the streets of New York, snapping their photo, and asking them for their thoughts.  The wisdom resides in the people who are closest to the lived experience.  (A sentiment stolen from Ann Goldlbatt last month, which I have been referring to a lot).

This gentleman simply and eloquently sums up what it feels like to be a freelancer.

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picture us, too

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photo by Stephen Wreakes

This gorgeous photo is of a Nurse Practitioner and my son Aaron – it was used by a pediatric nursing textbook.  I love two things about this picture:

1.  It shows a lovely, positive connection between a health professional and a ‘patient’.
2.  It shows a child with a visible disability.

I find that so many images associated with children’s hospitals, and foundations for children’s hospitals are of white, ‘typical’ looking kids.  That really bugs me.  These are not the children sitting in their clinic waiting rooms!  There are many kids of ethnic backgrounds, and lots of kids who are in wheelchairs, who have syndromes, who have cerebral palsy…these are the kids who frequent children’s hospitals.

Why are children chosen who look like classic models?  Or if the child does have a visible disability, are the photos styled carefully so the disability is minimized or hidden.  Is the face of children’s hospitals a child who looks supposedly healthy?  Is that the promise of pediatric health care – that after accessing services and care there, all kids will walk out ‘healthy’?  It doesn’t work that way for all families.  Many of us have children with disabilities that just aren’t curable (nor do we necessarily want our kids cured – but that’s another blog post).

Photographers like Rick Guidotti are challenging the antiquated notion of who is beautiful.  I love this.  As the Bloom blog asks:  Who decides what is beautiful?

Kudos to organizations like the editors of the Canadian Essentials of Pediatric Nursing and recently, the College of Registered Dental Hygienists of Alberta – for proudly showing diverse images of the real patients and families they serve.

anyway

Sometimes I go to this church.  I always say it isn’t really a church.  It is somewhere people go to feel welcome and exchange ideas.   I like that it makes me think, even on a Sunday morning.  It clears the cobwebs out of my head.

Like this poem, which was rewritten and posted on the wall of Mother Teresa’s orphanage in Calcutta.

The Paradoxical Commandments
by Dr. Kent M. Keith

People are illogical, unreasonable, and self-centered.
Love them anyway.

If you do good, people will accuse you of selfish ulterior motives.
Do good anyway.

If you are successful, you will win false friends and true enemies.
Succeed anyway.

The good you do today will be forgotten tomorrow.
Do good anyway.

Honesty and frankness make you vulnerable.
Be honest and frank anyway.

The biggest men and women with the biggest ideas can be shot down by the smallest men and women with the smallest minds.
Think big anyway.

People favor underdogs but follow only top dogs.
Fight for a few underdogs anyway.

What you spend years building may be destroyed overnight.
Build anyway.

People really need help but may attack you if you do help them.
Help people anyway.

Give the world the best you have and you’ll get kicked in the teeth.
Give the world the best you have anyway.

© Copyright Kent M. Keith 1968, renewed 2001

photo essay

Here is a beautiful photo essay by Philip Toledano.  It is called Days with My Father, and it is pictures and words about Philip’s dad, who is 98 years old.  Philip is a New York based photographer.

Days with my Father is a lovely (but sad) piece about being a child of a parent who is becoming elderly.  It beautifully honours Philip’s dad in the most authentic and true way.  Read it and weep, especially if you are over 40, because I know you have aging parents/grandparents.

who does she think she is?

There is a new DVD coming out about being a mother and an artist.  It is cleverly called:  Who Does She Think She Is?

In conjunction with this, my husband sent me this quote from Einstein:
“Not everything that counts can be counted,
and not everything that can be counted counts…”
Albert Einstein

I do a fair amount of what I term unpaid work, too – volunteering on a Steering Committee, Advisory Committee, doing presentations, co-coordinating a program for a non-profit organization.  And of course, mothering work is totally unpaid too. 

And in writing, it is not only the paid work that is of value.   Writing from the heart without editorial guidelines and deadlines can produce very important work.  Alas, as with any art…unsold work doesn’t put food on the table!  Aye, there’s the rub.