an open letter to radiation therapists

June 9, 2017

Letter to folks at Radiation Therapy

I’m done! I moved a crabby, wounded animal on my first week of treatment through to feeling a glimmer of joy today that this cancer business is done (for now).

You have helped me these past four weeks. Thank you. I always presumed competence, but it was your kindness and humanity that set you apart. Here are the small things that meant the world to me:

  1. Eye contact, introductions and smiles.
  2. The offer of a warm blanket.
  3. Chit chat – about the weather, colour of my nail polish, my family, plans for the day.
  4. Helping me on and off the table.
  5. Covering me up as much as possible.
  6. Telling me what you were doing as you went along. (This lessened anxiety, a lot).
  7. Your respectful treatment of my husband and son when they came in.
  8. Being open to answering my questions. Prompting me to ask questions. Saying, ‘what questions do you have’ instead of ‘do you have any questions’
  9. A reassuring hand on me.
  10. Not appearing rushed, even if you were.
  11. Your demonstrated compassion: empathy for fatigue, burning, itching, how crappy this whole experience is.

I am grateful for all those so-called little things. I think medicine can cure (sometimes) but it is the love that actually heals us patients.

Please keep doing these things, even if the system tells you otherwise. They matter.

Warmly,
Sue Robins.

(Shared with the Radiation Therapists on my unit at the cancer agency (and their manager) on my last day of treatment.  Although I’m quick to provide ‘constructive feedback’, I also strongly believe in saying thank you too).  

my many mentors

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Me, Laurene Black, Heather Mattson McCrady

Throughout my life, I’ve been blessed to have been gifted mentors to help me along my way.

My first mentor was my boss when I worked at Alberta Health (oh my) 25 years ago, when I was fresh out of university.  Her name was Nandini Kuehn, and she had the unusual mix of graduate degrees in English and Health Care Administration (a combination that I now possess).  From her I learned how to write a decent sentence (drop the dangling participles) and to overcome my paralyzing fear of public speaking.  She pushed me way out of my comfort zone by sending me around the province to present the new hospital funding formula to audiences of (sometimes hostile) health professionals.  This terror was a time of great growth for me.  After my mat leave with my first son, she invited me back to work on a costing project, where I learned even more about myself and dispelled the myths of what I thought I couldn’t do.

Zooming ahead, I learned how to be a good La Leche Leader from a number of exceptional mama bears, including my friend Maureen Andreychuk.  I summoned up my bravery to dare to be published through writer friends like Melissa Steele.  I learned to speak up for myself from Inger Eide, when I lived in Norway with her family.   I was saved from single mom unemployment by the very kind Shirley Groenen.

And finally, these two women pictured above introduced me to my current world of patient and family centred care.  Laurene Black just won a greatly-deserved Centennial Award from CARNA, her nursing association.  She paved the way for the incredible work at the Stollery Children’s Hospital.  From her I learned:  keep your head down, keep going and don’t give up.  Heather Mattson McCrady taught me, by her gentle role modelling, the crucial importance of holding space for families and health care professionals – and the value of active listening.

All these women are a little bit older than me, and a whole lot wiser.  The key for me has been to be open enough to accept their gifts, even if they offered hard lessons to bear.  Personal growth is damn uncomfortable, which is why most of us take great pains to avoid it.  When exceptional people cross your path, say yes instead of no.

In my short time on this earth, I aspire to live up to these words, which were kindly given to me by a mom I knew in Aaron’s old school.  Thank you Nandini, Maureen, Melissa, Inger, Shirley, Laurene and Heather – and many others – for lighting my path along my way.

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the perks of being aaron

Lest I give the impression that it is all doom and gloom having a kid with a disability – here is our reality to provide some needed balance.  YES systems are BAD.  YES some people who say they will help you DO NOT HELP YOU and this is especially BAD.

But also YES some systems are good, like most things to do with recreation, which are easy to access, and FUN.  Aaron plays Challenger Baseball, which is the most awesomely organized recreation activity for kids with disabilities EVER. You show up with your kid, whatever age, whatever difference they have, and they get assigned a peer buddy to hang out with and they have FUN.  I do not have to get my pediatrician to fill out a form proving Aaron has Down syndrome or have a psychologist administer an IQ test for Aaron to play baseball.  (Sarcasm intended).

(Special Olympics is pretty good, although they demand a cervical spine x-ray for kids with Ds – an x-ray that isn’t even relevant anymore).  

I don’t see Challenger Baseball or Special Olympics as anything ‘special’ – I firmly believe that my kid should play sports as easily as any typically-developing kid can.  Challenger, in particular, makes it easy for this to happen – for my kid to be active, be part of a team, learn some skills and have fun.  There is another group in Vancouver called Soccer Dogs that has a similar philosophy.

This past month has been crammed with some extraordinary activities for Aaron because he has a disability.  I’m totally ok with that, considering all the cursing and struggle he has in the health and school systems – any perks?  Bring ’em on.

The school arranged a day at the Playland at the PNE, which was sponsored by the CKNW Children’s Orphans’ Fund. That was super because it was adapted – shorter line-ups, lots of volunteers to go rides with kids.  In Edmonton, Northlands has a similar event in July called Magic Monday.

There was some pizza and bowling action for the kids with special needs at school on Friday…and a Challenger Jamboree (more pizza) and we attended the Lower Mainland Down Syndrome Society picnic at beautiful Belcarra – there was a nature interpreter who took us families on a tour of the sea life, which was very informative for us prairie folks.

IMG_7225This is a photo of a super activity from Vancouver Fire and Rescue Services.  Aaron and I received an invite from a lovely recreation therapist that I work with at Sunny Hill Health Centre for Children.

We felt very fortunate to be included in this fabulous event – which included even more pizza, real rides in real fire trucks round and round the block with the sirens wailing, and holding the fire hose and aiming at pylons, a building and (most fun) one of the Fire Academy students.  My absolute favourite part of the night was seeing the fire fighters lifting kids up from their wheelchairs into the fire trucks for a ride.  Now that was pretty special. I even got to go for a ride in the fire truck and I COULD NOT STOP SMILING.

I’m not even counting all the kindnesses, lollipops, cookies and extra stuff that I know this kid gets because he’s Aaron.  It is very important for me to pause and be thankful for the people who go the extra mile for our kids.   Lucky?  Yes.  Fortunate?  Yes.  Blessed?  Yes, that too.

The fact is that Aaron has a very good life – he is beloved and he is loved.  And isn’t that what we all want from this earth?

an ode to aaron’s ‘helpers’

Aaron had a spectacularly awful day at school yesterday.  In today’s communication book, his lovely Educational Assistant wrote:

ps

That has to be the most awesome, understanding note back from a school ever.  My eyes filled with tears when I read this.

I just want to pause to acknowledge the amazing women who have been what we call ‘Aaron’s Helpers’ over the past six years – Naomi, Anne and Debbie.  (And before Grade 1, Lisa and Jess).   These folks have used their skill, patience and creativity to work with our son for five hours a day, ten months a year.  Aaron is pretty good at testing skill, patience and creativity, but they have stepped up to be kind, compassionate and understanding with our boy.  If Aaron had a rotten day, Anne, his EA from his school in Edmonton, would always say:

tomorrow

I believe Educational Assistants are educators, too – in fact, they are responsible for delivering curriculum to our kids in a way they will understand.  They get to know our kids really really well – for better and for worse.  I know they don’t get paid much, and sometimes see us parents frustrated and angry.  I hope they know how much they mean to us, and that we remember to say thank you to them along the way.

 

recognizing an act of kindness

secondcupTwo weeks ago, I had the good fortune to witness a lovely interaction between a Second Cup staff member and a young man who was waiting for his drink.  I am quick to complain if I see an injustice, and I believe that we should also be just as quick to hand out compliments, too.  I sent this email to Second Cup customer service, who promised they’d contact the manager.  I also saw the young lady, Kaitlin, again a few days later, and had a chance to express my feelings in person (which I could not do without welling up with tears – I am such a softie).

I challenge you to recognize an act of kindness that you see this week – in health care, in education, or out in public.  Tell the person directly, let their supervisor know, and write a letter.  It is all good.  I’d love for us to reinforce acts of kindness as much as we pour our energy into complaints.  You rock, Kaitlin!

Hello:
I wanted to share kudos for a staff member at Terwillegar Rec Centre Second Cup, on Leger Road in Edmonton.

I was there last night, and there was a lovely barista named Kaitlin, who was behind the counter (she is very tall with dark hair). A young man, who appeared to have autism, was by the bar, and became confused about his order and seemed agitated.

Kaitlin was very patient and kind towards him – checking on his drink order, talking to him to reassure him that his drink was coming up. She provided exemplary customer service to a customer who others might have dismissed. She treated him very respectfully, and with great dignity, and I want you to pass on my compliment to her for her general awesomeness. We need more open-hearted, accepting people like her in the world. Second Cup at Terwillegar Rec Centre is very lucky to have her on staff.

Could you please pass this onto her manager?

thank you,
Sue Robins.

 

thanking teachers

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Today is Aaron’s last day of Grade 5.  Every school year is a bumpy year for him, and my emotional pendulum from September to June swings from feeling totally despondent to feeling incredibly grateful for Aaron’s school experience.  I’m on the incredibly grateful side of the spectrum today.

Last week, we had the ‘transition to Grade 6’ meeting with his Grade 5 teachers and the administration.  As is my way, I wept at that school meeting, but this time I didn’t cry out of frustration and anger.  I teared up out of deep gratitude for the teachers and the Assistant Principal for the effort they poured into teaching Aaron this year.

They never gave up on him, even during his darkest days in December, when a cold snap resulted in no outdoor recess, he had to share his Educational Assistant with a new student, he had increased academic pressure and way too many Christmas concert rehearsals.  These factors, along with excitement over Santa’s impending arrival, threw him totally off-balance (and was reflected in his behaviour).   I knew the teachers were feeling frustrated, but after a meeting to talk proactive strategies for success, things brightened in the new year.

Are things perfect at school for Aaron?  No.  Most of the imperfections come from troubles in the system:  large class sizes, lack of time for teachers to adapt curriculum, better education about how disability can affect learning and behaviour.  Is school ever easy for Aaron?  No, but he’s learning how to be a good student.  Sitting in a desk and ‘behaving’ does not come naturally to him.  But he will give it his best effort if he senses that he has teachers who set high expectations for him.    And this year he did.

I took the time to write long letters to each of his teachers, his Educational Assistant, and his Assistant Principal this year.  I believe in the Thank You Project for educational professionals too.  After all, their impact on Aaron is profound – they spend six hours a day with him, ten months out of the year.  I really wanted to express my gratitude to them, in a more substantial way than a ‘thank you’ and gift card.

For his Educational Assistant:

You teach him, you care for him, you give him confidence, you make him laugh, and you help him be as successful as he can in school. You always have a beautiful smile, even if I know you must have had a frustrating day – I never see it show – you have such grace in that way.

For his teachers:

I so appreciate your efforts to assess his ability, and to modify the curriculum for him – particularly in math, which has classically been a trouble spot for him. I have never seen him express his own enthusiasm for math before!

You are one of those exceptional people who see the good in others, and make people feel like they are all special. That is a very powerful gift, particularly for young students, whose sense of identity is just being formed.

Thank you Anne, Robyn, Terry, Scott and Terry for being a part of Aaron’s team.  Thank you for never writing him off or giving up on him.  Thank you for believing in my boy, nurturing his spirit and keeping his love of learning alive.

unsung heroes

Before Aaron was born, I’d think of the health system and doctors and nurses would come to mind.  And yes, in terms of numbers and influence, both physicians and RNs are a very significant part of health care teams.

But over the past 11 years, I’ve acquired big respect for other health professionals.  Administrators often consider them auxiliary professionals, but I absolutely do not.  These folks are just as essential to health care as their well-known colleagues.

These people have all had an impact on Aaron’s life and our family’s life.  They’ve either come into our homes, or we’ve had appointments or contacts with them in some way.

  • Pharmacists
  • Pharmacy Technicians
  • Speech Language Pathologists
  • Audiologists
  • Occupational Therapists
  • Physical Therapists
  • Social Workers
  • Psychologists
  • Licensed Practical Nurses
  • Health Care Aides
  • Dieticians
  • Dental Hygienists
  • Optometrists
  • Opticians
  • Pediatric Dentists
  • Laboratory and Xray Technicians

I’d like to see our language about health expand beyond ‘doctors and nurses’ to include all the professionals on a health team.

Here’s to the Pharmacist who translated my son’s different inhalers to me and avoided a medication mix up.  The Speech Language Pathologist (and the SLP assistants) who runs the amazing Chatter program to teach my son how to be a good friend.  Stephen, the Aaron-friendly Audiologist at our children’s hospital who makes hearing tests fun.  Heidi and Theresa, the OT and PT from Home Care who used to come into our home and who were Aaron’s biggest cheerleaders in those early days.  Our new Social Worker from Family Support for Children with Disabilities, who has been informative and helpful.  LPNs, who are nurses too, and who make a big difference at the bedside to patients and families.  The Dietician who counselled us about Aaron’s diet without shaming or blaming.  Our Pediatric Dentist and the Hygienists and Assistants who made Aaron so comfortable having dental work done in the chair that he doesn’t need dental work under general anaesthetic anymore.   The optometrist who didn’t assume that Aaron couldn’t read, and the optician who patiently fitted Aaron with his hip new glasses.   The lab tech who used a warm cloth on Aaron’s arm before she drew blood.

It really does take a big team to support children with disabilities.  I want to pause and take the time to say thank you.  Sometimes I don’t know your name.  Sometimes we only have contact for a few minutes.  But in those few minutes, you really do make a difference to children and families.

The work you do is often unnoticed, but I’ve noticed.  You are the unsung heroes of the health system.  Let’s all start singing your praises…