the unwinding of the miracle

unwinding

Whenever I’ve been fraught with anxiety, particularly since the stupid cancer arrived, my youngest son comes up to me and says firmly:  Mom. Sushi, bath and reading.

My boy knows what calms me and reading is one of those things.  I made a list of books that soothed me around my cancer treatment time and I’m going to add The Unwinding of the Miracle by Julie Yip-Williams to this group of illustrious books.

The Unwinding of the Miracle book began as a blog, which of course sparks hope to those of us who write about our own cancers.  It saddens me, though, when I realize how many books were published posthumously – like Julie’s book, and Nina Rigg’s The Bright Hour and Paul Kalanithi’s When Breath Becomes Air.  I hope the authors got to see their book in some sort of form – a draft of a cover, or a printed manuscript – before they left this world.

I am still drawn to books about cancer two years after my diagnosis.  This might seem weird to non-cancer people.  As one relative said to me:  why can’t you just put it behind you?  I can’t put it behind me.  It is part of me now.  We all integrate cancer into our identities in some way, even those people who seem to be ‘over it.’ (They aren’t over it.  They just don’t talk to you about it). Reading stories about cancer, especially metastatic cancer, helps me shine a light on the Bogeyman.

The Unwinding of a Miracle is both a memoir and a commentary on dying.  I read the first few chapters impatiently, hoping the author would get to deeper reflections beyond her chronological story.  Don’t get me wrong, her story is fascinating – Julie was born blind in Vietnam, arrived in Hong Kong on a boat as a refugee when she was three years old and eventually settled in California.  Hers is the American dream story – she overcame the struggles of her childhood, went to Harvard Law School and practiced as a lawyer in New York City.  She got married, had two children and lived an affluent life in Brooklyn.  But then at age 37, she got colon cancer.

When I read a book, as in real life, I like to cut through the chit chat to get to what’s important.  I’m glad I didn’t give up on The Unwinding of the Miracle, because my perseverance paid off.   The first chapters are mostly a re-telling of Julie’s life up until cancer.  The rest of the book is a deep dive into what I call what really matters in life.

I’m always searching for commentary on the patient experience in books about cancer, and Julie does share some of that.  Her diagnosis occurs in a sketchy hospital far from home, where she’s travelled for a family wedding.  She calls the physicians there ‘dubious’ and arranges to get transferred to a ‘more reputable’ hospital.  This was a very American reminder of how having good insurance and money gets you better care (in Canada, there’s no transferring around hospitals, no matter how wealthy you are).

She speaks candidly about her forays into alternative medicine, “…I could roll the dice with traditional Chinese medicine, which after all has been around for thousands of years and is a part of my noble Chinese heritage.”  Those who mock patients for searching for complementary treatments will gain a greater understanding of why patients stray into alternatives.  (It is because we are afraid, we feel ignored by our doctors, we have lost trust in the health care system, we go through bouts of feeling desperate to do anything to live just a little bit longer).

I admire of Julie’s telling of what she terms ‘her darkness’ that hits her two years after diagnosis, as she’s deep into Stage IV cancer. “There is a natural, intuitive fear of darkness, people who are gripped by it are ashamed to speak of it,” she says.  But speak of it she does.  The book turns here from a chronological tale to one that is thoughtful and reflective.  I imagine this mirrored Julie’s own experience having cancer, which can flip flop between denial and to trying to stay on this side of cheery to dark depression and eventual sad acceptance.

Julie shares many jewels in the caves of suffering (as David Gilbert has termed) in her book.  These jewels are not necessarily shiny or sparkly but they are hard-fought jewels, hard and dusty.

I find and continue to find delusion, fake optimism, and forced cheer in the face of a devastating diagnosis where death and all the fears that come with it must be avoided at all costs.

If you aren’t afraid to consider death, if you believe that people facing death can offer up jewels in the midst of their suffering, then The Unwinding of the Miracle is for you.  It isn’t a light book but it is an important book.  Julie Yip-Williams’ legacy is her story, her children and how she lived an unflinching and authentic life, right up until the end.

 

retweeting is not enough

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Last month I made a racket about leaving the patient engagement world.  I resigned from all my current positions as a patient representative on committees and groups.  My rather rhetorical question was: To what end have I put hundreds of (mostly unpaid) hours of work working with organizations to change a health system that does not want to be changed?  I have been sold a lie.  Nobody can show me any evidence that patient engagement efforts lead to meaningful system change.

Many people, including senior leaders of health organizations, retweeted my blog post saying things like: A must read!  This was momentarily flattering, until I recognized once again that talk is cheap without action. Of the organizations I departed from?  Three simply ignored me after I resigned.  One said, ‘I’m sorry you are burned out.’  And one leader sent one of her staff members to meet me for coffee.  I found the last response most promising.

And I hereby introduce the notion of The Exit Interview into the patient engagement world.

If you are collecting feedback about how you are doing patient engagement, I would respectfully suggest not only speaking to those currently involved with your organization.  Please consider scheduling a conversation with those who have left.  There are great lessons for those leaders who are unafraid of constructive feedback and who are open to being curious.

An Exit Interview says this:

  • I am not making assumptions about why you left.  Common assumptions associated with patients are: you burned yourself out, you are too busy, you are sick.  (Note these reasons deflect the responsibility for the leaving solely onto the patient).
  • I am open to the notion that if this is relationship-based work, I might have a role in your departure.
  • I am curious how our organization (and indeed me) could have done a better job engaging you.
  • I will apply the learnings from the Exit Interview to improve and grow.
  • I will do my best not to take your constructive feedback personally.
  • I acknowledge the courage it takes to speak up to give this type of feedback.

Alas, the lone organization who scheduled the Exit Interview with me cancelled our meeting.  We picked another date but then the staff member cancelled again.  This time she didn’t reschedule.  I get it.  I won’t let the door hit me on the way out.

Less Retweeting.  More Action.  An Exit Interview is a great start, a practical idea that could be implemented right away in Patient Engagement programs.  Unless you are only looking for cheerleaders, which means that engagement is an exercise in tokenism to you.

I only get one swan song and this is it.  My own take-away lesson is this:  perhaps sharing our time and stories isn’t about changing the health system after all.  Maybe it is instead about making connections with one person at a time.  Maybe one single person chatted with me in the hall or read my writing or heard me speak and tilted their head and paused to think, ‘gosh I never thought about things that way.’  If us patients and caregivers advance the understanding that there are different perspectives, diverse points of view, other ways to look at things – well then maybe that’s not a failure after all.

I See You

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Aaron + his mama. (Shared with his consent).

Last night, Aaron and I got fancied up and went to out to a play. He wore his suit jacket and a black tie and I changed out of my regular mom jeans into a green velvet dress. This was a big occasion for us.

This is the Point was playing at the PuSH Festival at the Cultch Historic Theatre in Vancouver. This play initially caught my eye because the two lead characters, Tony Diamanti and Liz MacDougall, are actors with cerebral palsy. They share stories about their own lives along with Dan Watson (and Christina Serra, represented by video), the parents of their nine-year old son Bruno, who also has CP.

Aaron doesn’t have CP; he has Down syndrome. But I’m not sure the difference in diagnosis matters that much – he lives the common experience of being disabled. He enjoys his grade 10 drama class at school and is becoming more interested in live theatre. A play featuring actors with disabilities is an unusual thing. (It shouldn’t be. But it is). I think it is my job as his mom to show him what is possible.

This is the Point is a real-life montage of stories, shared through live performances and video vignettes. It includes audience participation – we were encouraged to read Tony Diamanti’s words out loud as he pointed to letters on a communication board. I loved this invitation to be a part of Tony’s world – a contrast to the common notion that disabled people must always fit into our abled-bodied spaces.

Before the play began, Dan wandered about the audience handing out Hershey kisses. He then announced, ‘We do things at our own pace,’ to set the tone for the show.

The play is a peek behind the curtain of having a disability and being parents to a child with a disability. It gave space to stories that are told but not often heard or acknowledged by the general public. The play explained communication devices, talked about consent (or lack of it) and touched on abuse.

I think that stories can teach you something new or validate what you already know by creating a mirror for your own experience.

Here’s the something new from This is the Point: disabled people don’t always communicate as we do, they have a sense of humour, curse, are sometimes horny, have sex, fall in love and drink vodka. The question for me is: why should this be new to me? How does being surprised by this reflect on my own misconceptions about adults with disabilities? As human beings, we are all the same. And we are all different too.

This is the Point offered a commentary on my own experience as a parent too. Dan recounts a heart-breaking scene from his local playground, where the neighbourhood kids keep asking about Bruno, over and over again: What is wrong with him?

“Why do I have to keep explaining why I love my son?” asks Dan, exasperated in response.

I’ve felt that pain too. Playgrounds are an especially cruel place, a petri-dish for children whose parents who have never to bothered to explain about disability or kids who are different. At another point, Dan exclaims, ‘Suck it doctors!’ in reaction to the doctors who told him everything his son wouldn’t do. I almost stood up on my chair and cheered.

After the final applause, I leaned over to Aaron and asked what he thought. I wondered how it felt to see disabled people in a play.

“Good!” he said enthusiastically (although he hid behind his suit jacket during the ‘sexy’ scenes). He was eyeing the actors, who were all still on stage chatting with audience members.

‘Do you want to meet them?’ I asked. ‘Yes,’ he said, ‘but come with me.’ ‘You go,’ I suggested, always eager to pull back from my hovering mother role.

He took a breath, marched up to Liz MacDougall and extended his hand. They looked at each other, smiled and shook hands.

‘Did you say anything?’ I asked when he returned. ‘No, I shook hands,’ he said. Somehow that handshake – the congratulations, the job well done, the nice to meet you, the thank you – was simply enough.  Aaron does things in his own way and that is how it should be.

Thinking about the play, I thought how rare it is for Aaron to see himself reflected in anything other than fundraising or awareness campaigns. We need more stories like This is the Point in our increasingly polarized world. Not as ‘special’ stories, but as stories as a matter of course, on regular rotation, in the media, performing arts, literature and film.  I promise that when I find them, I will amplify them.  And you can too.

You see, if you open your eyes and bear witness to stories that are different from your own, you never know what you might discover (mostly about yourself).  Bravo to the This is the Point cast and crew.  You made your point and you made it well.  xo.

to what end?

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Me in my glory days.  Photo credit: David Hungate

I have been slogging along as a family advocate and then as a patient in the health system for the past 16 years.  I’ve had paid positions at two different children’s hospitals where I was deeply committed to improving the family experience.  I even moved my family to another province for one of those jobs. I’ve logged countless hours as an unpaid volunteer on committees.  I’ve spoken at many national and international health conferences as an inspirational speaker.

Before that, in the 1990’s, I worked on projects for a provincial health department in funding, costing and information management.  In the 1980’s, I was a nursing student for two years before transferring into English, worked as a nursing attendant and went on to get a graduate certificate in health care administration.

I tell you all this not to prove my credibility, but to say that I’ve been around the block a few times.

All of me is tired.  Getting cancer two years ago tipped me over the edge.  Improving health care for patients and families has been my life’s work.  My ongoing experience in oncology has shown me that things have not improved for patients one little bit.  To what end have I dedicated myself to this work?  What difference have I made?

I’m not trolling for compliments.  I am truly wondering where the evidence is that my hundreds and hundreds hours of paid and unpaid patient engagement work has made any positive change.  There is no evidence in my recent clinical experience.  So why continue?

I started my advocacy work in pediatric health care after my son was born with Down syndrome.  I co-founded a community based peer support program, lobbied for a Down syndrome medical clinic and helped build a family council at a children’s hospital.  If you had asked me, I would have said that I was trying to make meaning of my son’s diagnosis.

Reflecting on this seemingly noble rationale, I recognize that this is actually rather insulting to my son.  What does this say about how I felt about the meaning of my son’s life?  Now I know that he has meaning by simply being human.  I don’t need to try to change the world to validate his worth and existence.

I would have also said that I did advocacy work to ‘make a difference.’  But other than a shot to my ego and some brief warm fuzzies for the audience, what difference did making myself vulnerable and standing behind a podium sharing my story (and even worse, sharing my son’s story) even make?  Show me the evidence.

This past week I had a trifecta of events.  I heard Andre Picard speak at City Conversations at SFU but his wonderful talk rattled me.  If I had been less worn down and brave enough, I would have stood up and asked:  What can us patients do to improve Canada’s health care system?  His clear and factual accounts of the myths of Medicare hit very close to home.

“As Canadians, we are all too accepting of mediocrity,” he said.  “Once in the health care system, you ask yourself – what the hell is wrong with the system?”  These true statements chilled me to the bone.

Then I had an unpleasant encounter with a new oncologist.  And then a terrible appointment letter showed up in the mail.  My never-ending shitty patient experience just goes on and on and on.

What the hell is wrong with the system?

All my talk about kindness, compassion and the patient voice has been for naught.  (Read Isabel Jordan’s reflections and Jennifer Johannesen’s critique of the whole patient engagement movement for food for thought).

The past two years I’ve slowly been withdrawing from the patient engagement world.  I no longer accept speaking engagements.  I don’t volunteer on committees or with projects.  I think: what’s the point?

I still rabble rouse on Twitter and Instagram and I write essays on this blog.  I’ve written a memoir and manifesto about health care called The Bird’s Eye View and I’m in the midst of editing it and shopping around for a publisher.  But writing is something in my realm, in my control.   My own self tries to treat myself with respect and kindness.  I no longer rely on health organizations to do that for me, because 93% of the time, I’m deeply disappointed.

I don’t want to deter you if you believe that patient engagement will change the health care world.  This has not been my experience but maybe it is yours.  But I must plead with you: Please don’t allow yourself to be taken advantage of.  Don’t let them ‘use’ your story.  Be particular when accepting opportunities.  Think, as I rarely did:  Why am I doing this?  What is the organization’s intention?  What is my own intention?

Zoom back 12 years and I was at a health conference with a team of family members and clinicians.  Something rotten happened there – we were there as a team, but a team decision was made and I wasn’t even consulted.  I mean, the details don’t matter – I have allowed this to happen to me a thousand times since then.

I left the conference room and went into the elevator to compose myself up in my room.  I was naive and hurt.  The pain of this made me weep.  I had thought I was a full partner and I clearly was there only as a token family representative.

The elevator doors opened and another woman walked in.   It was a mom who had volunteered with another Canadian children’s hospital for many years. I hastily wiped away my tears but I was still clearly upset.

“What’s wrong?” she said, gently hugging me.  “Come to my room and we will have a chat.”

I sat on her bed and cried, feeling betrayed and used by the clinicians.  She comforted me but then said firmly:

Don’t give ever them all of your heart.  Because if you do, they will chew you up and spit you out.  

I’ve given this same advice to patient and family advocates over the years, but have not heeded it myself.  I’ve allowed myself to be treated shittily by the system (and never ever forget that the system is made up of real live people) over the past dozen years.  Why have I done this?  I wanted to belong.  Attention massaged my fragile ego.  I had a need to be heard.  And yes, I wanted to make a difference.

No more.  I quit you health care.  Except for my minimized touches in a clinical setting – I have had cancer after all, which never really goes away – I’m done.

I’m breaking up with you patient engagement.  You’ve been a rotten partner. You don’t deserve me anyhow. It is finally time for me to take my own heart back.

Far from the Tree Documentary

I lug the book Far from the Tree, all 962 pages of it, around with me to family meetings and client sites at children’s hospitals and disability organizations.  It is a meticulously researched and beautifully crafted book on parenting, and more importantly, on love and acceptance.  Andrew Solomon has written a masterpiece.  This book has moved me so much that I titled my essay that I wrote for the New York Times Far from My Tree. (It is a piece written about my punk rock son, inspired by Solomon’s work).  Solomon has helped me dig deep about parenting all three of my children, who are different from me in their own unique ways.  It made me ask:  did I really have children to create versions of Mini-Me?  Or was it my job to unconditionally love, support and accept them to be full versions of their fine selves?

I’ve been scrounging around to find a way to bring the Far from the Tree Documentary to Vancouver.  GREAT NEWS.  It has been released on Netflix Canada.  If you love or work with someone with a disability, please take 90 minutes of your time and settle in and watch this exquisitely crafted film by Rachel Dretzin.

Solomon has broken the fourth wall to tell his story as an author and what writing a book about parents, children and the search for identity meant to him.

Writing this book set me free.  It broke me out of the narrative from my childhood. -Andrew Solomon

His parallel story as a gay man is gently presented along with stories from Jason, Jack, Trevor, Loini, Leah and Joe.  Jason is 41 and has Down syndrome, like my 15 year old son.  I watched the segments with Jason closely. He’s the son of Emily Perl Kingsley, who famously wrote the essay Welcome to Holland.  (Anyone who has a child with a disability has been gifted this essay by well-meaning friends).  Jason speaks many truths.

Here in reality, everyone is different. -Jason Perl Kingsley

Jason is right, of course.  We are all different but us typically-developing people are terrified of difference and shun this reality. Far from the Tree examines this paradox with little commentary and judgment.  The stories are strong and stand on their own.

I especially loved the film for the space it gave to the people with disabilities to do the talking. Us parents normally take up a lot of airtime, when we should be making room for our loved ones to speak in any way that they can.  I’m learning this lesson slowly as my son gets older.  His story is different than my story.  He lives with disability.  I do not.

Joe is a philosophy professor, has dwarfism and is eloquent with his words.  “What body you are in has everything to do with your perspective in the world,” he says.  “It surprises people when I indicate that I’m not suffering.”

Far from the Tree offers up a lot to think about.  As Joe points out, physicians see normality as the end goal.  But why is that?  To what lengths do we chase the normal?

The dad of Jack, a young man who is autistic and non-verbal, tearfully says about his son,  “He’s abnormal in a really good way.”  Far from the Tree rightly challenges the concept of normal and offers up the question:  what makes us human?

I’ve always thought the disability community and its allies could learn much from the LGBTQ2S world.  As Solomon asks, drawing a comparison between the two worlds:  Is defectiveness a matter of perspective?  How does illness become a celebrated identity instead?

How do we decide what to cure and what to celebrate?  -Andrew Solomon

I wept at the tenderness of this film: the scene of Jason at the museum with his mom, the image of him sitting on his back deck with his two roommates.  Andrew Solomon walking arm in arm with his father, Trevor’s family gathered around the video screen to talk to their incarcerated son.  Loini meeting people like her for the first time at the Little People’s convention, Leah and Joe dancing quietly together on a rooftop.

I thought about my own instinct to protect my son to the point of overprotectiveness. I thought about all the therapy we subjected him to in his early years.  I thought about how hard he tries to fit into the regular world, and what joy he finds with other people with Down syndrome.  I thought about fixing and curing vs. love and belonging.

Far from the Tree, the book, and now the movie, has made me think about all this in a good yet hard way.  I thought about my son and how, as the movie says, he has his own mountains to climb, which aren’t my mountains – they are his mountains.  I thought about how I can support him to do that.  I thought about how it is also my job as his mother to set him free.

What am I looking for from any book or a movie?  I want to be surprised or validated.  Far from the Tree magically does both.  Through stories, it asks many questions that only you can dig deep and answer for yourself.  That’s what good art is all about:  to see another way of reality that is not your own and to help you question what you think you already know.  Far from the Tree is poignant storytelling at its best.  It touches hearts to change minds.

Pura Vida

I wish that every new family who finds out their baby has Down syndrome could see this goofy little video.  I wish that every physician who discloses a Down syndrome diagnosis would watch this too.

This is my son Aaron boogie boarding in Costa Rica last week.  Aaron is 15 years old and has Down syndrome.  He also gleefully jumped off the second level of a boat into the Pacific Ocean (four times) and went for a long hike in the jungle where we encountered a troupe of wild capuchin monkeys.  (That was AMAZING). These were all hard-fought victories for him.  It took many years of swimming lessons for Aaron to be confident enough to put his face in the water, never mind jump off a boat.  Even five years ago, he’d balk at the notion of going for any kind of walk by sitting on the ground and refusing to budge.  It has taken supportive community support folks, Physical Education teachers, Special Olympics, a move to a warmer climate and many meandering walks to the grocery store to get him to the point of hiking in the jungle.

Pura Vida is a popular saying in Costa Rica.  It roughly translates to ‘a slower life’ or a ‘pure life.’  A more literal translation from Spanish is ‘nothing but life.’

While Aaron is not on this earth to inspire us (as explained well by the late great Stella Young), he does live a full life.  I did not know this was possible when he was first born.  Everybody told us how hard life would be, but nobody told us about the Pura Vida.  Our family has made damn sure that Aaron lives a good life (and we do too, through our fortunate association with him).

How I wish I had a crystal ball during the dark time of Aaron’s diagnosis almost 16 years ago to catch this little glimpse into his future.  How I wish that instead of being handed that stupid book about every possible thing that could go ‘wrong’ with babies with Down syndrome that I had been connected with another family with an older child to see that our lives were not over. In fact, Aaron’s diagnosis offered us the beginning of a new life instead.  Yes, in many ways having a son with an intellectual disability has made our lives slower. But a slow life is not a bad life.  It is just a different life.  And don’t you think we all could use a sprinkling of a little Pura Vida too?  xo.

good inclusion

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I read the Globe and Mail article today with the rather misleading headline: Are Inclusive Classrooms Failing Students?  (I’d edit this headline to say people are failing students, not inclusive classrooms).

I feel deeply for the families who shared their stories for the piece.  I’ve been one of those families.

We can blame the system but the system is made up of people.  Never forget that.

My son is 15 years old and in Grade 10.  He has Down syndrome.  His story of inclusion is a rocky one, especially in the elementary school years.  His experience from grade 1 – 3 was so bad – and included torment by boys in his classroom that went wholly unaddressed by the principal – I think because the main perpetrator was the son of a prominent lawyer and doctor – that we sold our house and moved across the city to get him into a more welcoming school where we knew he’d be safe.

It was then we realized that each school is different and each year is different, depending on the mix of other kids, families, principals, teachers, Educational Assistants and school districts.  If even one of those factors is misaligned, inclusion is so precarious that the whole house of cards comes tumbling down.

I don’t want to dwell on the bad inclusion.  I want to offer hope to families who have loved ones with disabilities.  It can get better.

Now Aaron is in his third year of high school.  He attends all regular classes – classes that he himself chose – including two academic classes.  He does not balk at going to school now.  As far as I can surmise, he’s happy and importantly, he’s learning and growing.

His first year of high school was a tough transition.  He tested the teachers and it took them some time to get to know him.  But then one unusual thing happened.

In November that year, the special education teachers asked me if I wanted to speak to the school’s Professional Development Day about what inclusion means to our family.  This was my last big talk before I was diagnosed with breast cancer.  Believe me, I took this talk very seriously, as I had a sense about how seminal it was.  I prepared extensively  – interviewing many other families about what they wanted me to share.  I talked to Aaron at length about what was important to him.  (I wrote about what I said here).   It was the most important presentation of my life.

This was because I had a chance to share family stories with the teachers – almost 100 of them – about what mattered to families like mine.  On the day of the talk, I was a sweating nervous wreck.  Thankfully, the audience listened graciously, about what was important to Aaron and to other families who had children with disabilities.  I also spoke about how inclusion benefits the other kids, and how disability is part of diversity just like race and gender orientation.

The teachers’ openness to listening to family stories was everything.

I have been ‘that’ mom for years.  But after the teachers heard my stories, something shifted.  Maybe I was was no longer the difficult ‘special needs’ mom.  Maybe I was someone like them, a person who had something unexpected occur in their life – in my case, I happened to have a child born with a disability.  I was firm in my assertion that my kid had a right to an education just like any other kid.  I was clear that Aaron wasn’t just a problem – he was in fact someone worthy of love and belonging, just like anyone else.

I’ll never know if my talk made a difference.  I don’t think I am the best speaker in the world or that I imparted great wisdom.  But I did tell my story, and shared elements of other family stories, and the teachers did listen.  I do believe this helped Aaron be understood and accepted, even a little bit.  At Aaron’s high school, I have a strong sense that the leadership and teachers believe in Aaron.  That’s so crucial.

I’m writing this post as our little family of three is in the middle of a sleepy vacation.  Today we were in a surfing store.  I noticed the owner watching Aaron intently.  Finally he said, “I have a son with Down syndrome too.  He’s three.”  We talked for a few minutes about how his son was doing and also about how hard life is sometimes.

As I was going out the door, I turned to him and said, “Ah, but it is the most important things in life that are hard.”  He paused and nodded.  We smiled at each other, our secret shared.

The most important things in life are hard.

For the families struggling, I want to say that things are hard because they are important.  I agree that it isn’t fair and it isn’t right.  But also I know you can do hard things.  Keep speaking up.  Keep sharing your stories.

For the educators, please make the space to listen to family stories.  I promise you it can make all the difference in many people’s worlds, including your own.