The Wonder

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My kids: Ella, Isaac + brand new Aaron, 2003.

Note: this essay is based on my talk at The Wonder Years Workshop at the Edmonton Down Syndrome Society on February 25, 2018.  It was a true honour to speak to this group of new families who have babies with Down syndrome.

My youngest son is now almost 15 years old. The trajectory of our entire family’s lives changed when his doctor uttered the words ‘Down syndrome.’ I’ll never forget that moment – I can remember every detail – how the room smelled and even the shoes my doctor was wearing.

Aaron’s diagnosis was a significant time for me, bordering on the traumatic. The baby we expected was not the baby we got. I irrationally blamed myself, thinking I was too old and I had grown up too close to the refineries – irrational thoughts when I was neck-deep in grief.

As the years have passed, the intense grief has faded as I’ve realized that there is loss associated with parenting all children. No child is perfect and all children are hard work. But with typically developing children, we learn this lesson gradually as they grow up. With our kids with Down syndrome, we are told this immediately upon diagnosis. For me, it felt as if I had been hit by a truck.

We must honour the healing that comes from the dark times. For many months, I felt like I had a suffocating blanket thrown over my head. I was mourning the loss of the so-called perfect baby. I had to grieve for the baby I thought I was going to have in order to accept the baby I got. My baby boy did not allow me to stay stuck in the grief. Looking back, there were many factors that helped me move forward to see the light again. I want to share my story of gradually appreciating the wonder that is our son.

Coming to The Wonder Years is an important step to start building your own community. Finding other moms who had babies with Down syndrome saved me. Fifteen years ago, there were no moms groups, no EDSS office space – but us four moms with our tiny, flexible babies with almond eyes – found each other. We would get together every month at each other’s houses with our wee ones. Helga, Veronica and Karen were my saving grace. They knew what it was like to have an unexpected child with Down syndrome and we could talk to each other freely and without judgment.

Today Aaron is friends with these (now) teenagers, who he first met when he was 5 months old. He and Helga’s son Vincent spend a glorious weekend each summer on their family boat in the Okanagan – endlessly jumping off into the lake, tubing and engaging in rowdy burping contests. Aaron and Veronica’s son Andrew Face Time each other regularly – I can hear the two of them roaring with laughter on the iPad in Aaron’s room. These friendships in my new community began by helping me, a lonely sad mom – but have evolved into deeper relationships for our entire family, including our son with Down syndrome. Aaron needed to find his own people too. However you find your peeps – through in-person connections, via social media – it doesn’t matter. When you are ready, reach out. You will need each other throughout the years.

My personality is good for people – for love – like my family. –Aaron, age 15

Having Aaron in our lives has changed our entire family. He has infused all of us with wonder. He has two older siblings who were 6 and 9 when he was first born. His sister Ella, now 21 and in third year nursing school, reflected back on how Aaron has made a difference in her life:

Aaron has taught me to be more patient and more inclusive, accepting and nonjudgmental at an earlier age than most of my peers. Honestly, it is cheesy to say but he truly is a bright light in this world. He’s kind, smart and HILARIOUS and he changes the lives and opinions of everyone who takes the time to get to know him. He’s why I wanted to be a nurse – not to cure sick people, but to see the spark that is so often ignored in vulnerable populations.

Aaron’s older brother shares similar sentiments, adding that Aaron has greatly strengthened his compassion. And my husband, Aaron’s dad, emphasizes that Aaron has challenged him in ways he didn’t expect, but also warns not to underestimate your child’s ability to learn or enjoy the things you enjoy. (For example, Aaron loves swimming competitively, watching Oilers’ hockey and eating hamburgers just like his dad). The majority of our children’s genes come from their mom and dad – it is only the one chromosome that is extra. Don’t forget that our kids are more like us than they are like Down syndrome.

My friend KC offers up this wisdom: throw out the milestone charts and celebrate every hard-won achievement. Only surround yourself with family and friends who love and support you and your child, she says. Make connections with other families within your new community and keep them close. And be flexible in the direction you choose – there are lots of decisions about therapy, preschool, recreation that will need to be made. You will make the best decision at the time and it is okay if that choice doesn’t stay the same. As your child grows and changes, you will too. This constant recalibration is hard for those of us who want control and a crystal ball in life. I’ll add: listen to your heart; it will always tell you what to do.

Speaking of hearts, please remember to be kind to yourself in this new life. Find yourself safe spaces where you can feel all your feelings.   You don’t have to be strong all the time. Do more of what nourishes you. Often we search for meaning once we’ve had a child with Down syndrome – we do this through our necessary advocacy work to make the world a better place for those with differences. This is important work, but also remember to take time for yourself, your partner and your kids too. Changing the world is exhausting so it is crucial to take breaks and allow others to take their turn to change the world too. It is hard to be vulnerable and ask for help, but that’s what I’ve had to do.

As Natalie Merchant says in her song Wonder:

 I believe, fate, fate smiled
Destiny laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child with be gifted
With love, with patience, and with faith
She’ll make her way.

You and your child can – and will – live a good and rich life. Have love, patience and faith (whatever faith means to you) and listen closely to your child with Down syndrome. You and your baby are valued, worthy and loved. I promise that your child, above all else, will be the one to help you find your way.

make space for the suffering

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The older I get, the more conflicted I feel about everything.  I hope feeling conflicted is in fact related to my growing sense of humility as I open up to other points of view.  The more I know, the more I know I don’t know.

I used to despise the word suffering, as it is misused all the time in reference to people with disabilities.  The horrific term ‘burden and suffering’ is often widely applied to human beings with differences, both before and after they are born.  I still call bullshit on this stereotyping of other human beings in order to categorize them as less human.

So I dismissed the word suffering outright until I was diagnosed with cancer last year.  It was then I felt the true meaning of suffering, as the past few months have been fraught with unresolved physical and emotional pain which was triggered by my cancer.  I continue to heal from that experience.

I encountered Carlyn Zwarenstein’s writing about pain a few months ago.  She invited me to look at the notion of suffering in her important book called Opium Eater, The New Confessions.   Opium Eater is a small but mighty book that examines the use of legal opioids to manage chronic pain, looking at the historical, economical and emotional aspects of alleviating pain. Carlyn deftly draws upon the literary world for understanding. Andrew Sullivan’s recent New York article The Poison We Pick also tackles the concept of pain.  He identifies pain as simmering underneath the terrible mounting opioid overdose deaths.  As he explains about opioids: It is a story of pain and the search for an end to it.

A year ago, I wouldn’t have comprehended the depths of such pain.  But today I have a glimmer of understanding.  While I am privileged enough to keep pain at bay with the occasional Ativan and regular therapy sessions, cancer has humbled me enough for me to glimpse at the great suffering in this messed up, beautiful world.

Part of my own healing has been writing.  A few months ago, I was asked by Dr. Janice Bell to write a guest editorial for the Journal of Family Nursing about my perspective on suffering.  It was published yesterday and is called Make Space for the Suffering.

I’m pleased that health care academic journals are starting to make space for the patient voice on their prestigious pages.  I believe the inclusion of the patient voice makes their pages even more prestigious (and legit).  This most recent editorial is a plea for health professionals not to turn away from patients’ and families’ pain.

I will continue to say over and over again – I’m a broken record – as I dare you, health professionals, families and friends, to draw upon compassion and not turn away from our pain:

Healers turn toward patients and families during their pain. A warm gesture, kind word, or gentle touch reminds us that we are not alone and makes space for our suffering. While health care can (sometimes) cure, it is love that will heal us in the end.

Twenty Days Last May, part II

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(A prompt from my writing class:  describe a moment you are at peace)

For twenty days in between appointments, I walked. I walked in concentric circles around the hospital – down to False Creek, up the Cambie hill, west to the fancy shops and east to the hipsters with their big beards.

For twenty days, I looked for a picture. In the hospital, all my photos were taken in black and white. But outside out on my stroll, I searched for colour.

I snapped a tabby cat sunning on a step, the city view peeking through the condos and a bicycle parked against a tree, its basket filled with flowers. Once a crow flew at me on 10th street, angered I had passed too close to its babies. I continued on. There was a coffee shop filled with books, a burgundy mosaic pattern on a store floor and the blossoms slowly filling the tree canopies with early spring.

On my last day of those long 20 days of treatment, I spotted some graffiti on an alley wall. It was a perfect pink circle with stencilled words that simply said – you are here.  And that is enough.  xo.

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The Sinister Side of Patient Engagement

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I was a patient engagement person before there was such thing as patient engagement. Ten years ago, I was a mom who was hired by a hospital to advise leadership about family-centred care.  Back then, us family advisors were pioneers, cowboys in a new frontier.  The movement was focused on making the experience in the hospital better for families by creating a family council and it grew from there.

Something more sinister has accompanied this growth. While some hospitals maintain the purity of these patient engagement jobs by hiring those with lived experiences, others have sought to dilute it by hiring staff who do not even demonstrate compassion for the patients and families that they are supposedly to serve. Today, it is often clinicians who are hired into leadership positions in patient engagement, citing: ‘but everybody is a patient!’ – leaving authentic patients and families behind in their dust.

I’ve been despondent about this before, throwing my hands up and despairing: Patient Engagement Has Been Stolen From Patients, but after reading Isabel Jordan’s essay Patient Engagement: You’re Doing it WrongI grit my teeth and dig in my heels, solidifying this stance.   Please take the time to read Isabel’s important story.

How can these new Patient Engagement leaders get it so wrong? How is it that patients and families are used for their stories and then crudely discarded? Why has even the common courtesy of responding to emails gone? I’ve gone on and on about the best practice of patient engagement: here, here, here, here, here, here, here, herehere.  Here’s an example of best practice, to contrast Isabel’s horrible awful experience.

If you are working in the area of patient engagement, consider Isabel’s piece very carefully. If you truly are a professional, you will welcome constructive feedback and reflect on what you’ve learned and how you are going to change your practice based on your learnings.  Perhaps you see an element of yourself mirrored in her words.

If Patient Engagement is becoming a profession, there needs to be accountability for it. Like other health care professions, Patient Engagement needs to protect the public they serve – through common best practice, standards, training + continuing education requirements and a path for the public to report misconduct and follow up with disciplinary action. If the health professionals have stolen patient engagement from us patients, then they need to start acting like professionals. Not rude, inconsiderate and disrespectful of the people they are supposedly committed to collaborate with.

Thank you Isabel for sharing your story and wisdom with us. Please share her post widely with those who engage patients: in health authorities, governments, hospitals, research projects, health affiliated organizations – anybody who says they engage patients. Patient engagement, patient experience people – wondering if you are doing a good job?  Turn to the patients and families and ask them.  That’s the only way you’ll ever know.

Never forget, it is an honour to work with patients and families in any capacity. Words are hollow here. If you don’t demonstrate to us through your actions that you believe this work is about serving people, you are in the wrong field of work.  

advocate me

sue patient

This post is a follow up from my interview with Donna Thomson for The Caregivers’ Living Room and was written for + originally published on the Cancer Knowledge Network.

I never wanted to be an advocate. I’m a conflict-adverse introvert by nature. When my youngest son was born with Down syndrome, the title of Advocate was foisted upon me. I was also suddenly a Special Needs Mom. These were clubs I never signed up for.

Thrown neck-deep into the health system with a baby with medical issues, I quickly learned to speak up at specialists’ offices to get my questions answered. I figured out that most advocacy work is relationship-based, which means if you have a relationship with the person you are directing your advocacy efforts towards, things will go much better.

To paraphrase Guy Kawasaki, a magnificent cause can overcome a prickly personality, but why make things harder? I got to know my son’s clinicians and recognized the value of chitchat, being nice, giving thank you cards and remembering people’s birthdays.

I’ve been to protests and marches to call for fair government funding for people with disabilities. I’ve spoken to the media about policies that segregate my kid. I lobbied a children’s hospital to start up a medical Down syndrome clinic and then fought hard when an administrator tried to shut it down a few years later. I have a fierce reputation as a strong advocate and I would take a bullet for any of my children.

Last year my advocacy efforts came to a screeching halt when I was diagnosed with breast cancer. Many people said watch out cancer world, strong advocate Sue Robins is here – but all that bravado did not come to pass. I’ve often failed miserably at advocating for myself as a cancer patient. Newly diagnosed, I was meek, prickly and vulnerable. Intellectually, I knew what to do to speak up for myself in stark oncology clinics, but emotionally I sat as still as a little mouse, hunched over, compliant and broken.

It had been easier to advocate for my son. He was one step removed from me, and I could hide behind my role of the strong Mama Bear. Cancer is exceedingly personal and not one step removed at all, for my own cells have turned rogue on me. Breast cancer is an especially intimate sort of cancer – my breast tumour was an affront to my feminine body.

Sitting in exam rooms in thin gowns, exposing my breasts to strange hands and painful machines, I couldn’t figure out a way to salvage my dignity, never mind advocate for myself. I was stripped bare, as small as a little girl. Be brave and strong, they said. I was scared and weak instead.

People who knew me from the disability world told me to buck up, to advocate for myself as I had for my son. This call to action was not what I needed; it only served to pile guilt at my own helplessness on top of me. I simply craved compassion instead.

I slowly turned to writing to process my cancer patient experiences using both a personal journal and my blog. Even if I was unable to speak up during an appointment, I could write about it afterwards. On my blog, this caused me some trouble.

Cancer hospitals don’t like accounts of experiences, even anonymous ones, unless they are positive. Many of my own touches with health care were traumatic and a number of encounters were even unkind. I asked their patient engagement person if there was a way to share my photos I had taken during radiation and she told me they don’t ‘privilege’ one patient’s story over another. Then she added that the writing on my blog was raw. More injured, I left the public eye and turned inward.

This took funny turns – I signed up for a poetry workshop class and wrote about cancer in poetry. This was freeing – I could fictionalize my experiences and not be worried about being factual. A friend kindly showed me how to make a collage from my radiation photos that the cancer hospital wasn’t interested in. Art was a different way to speak up for myself. I was advocating, but coming at it sideways, not in a clinic room.

I poked my head back into published writing. A leader in radiation therapy asked me to co-author a journal article about my experience having radiation. A nursing professor asked me to write a guest editorial for her journal about suffering. I am hopeful my story leaves remnants for clinicians to pause to consider how patients feel when they are in their care. While this might not help me, this may help others behind me in the cancer world. Making meaning from my experience helps me heal too.

There are many ways to speak up for ourselves. Some people fundraise, lobby governments, give direct feedback to clinicians, and bring along support people to appointments to help given themselves a voice. Other folks just hang in there, endure and try to forget about the whole damn thing. That’s okay too.

Just as there’s not one right way to do cancer, there’s not one right way to advocate. The most important thing is to be kind and forgiving of yourself as you find your own way.

the gerber baby

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This is a slide from one of my presentations to health professionals explaining the reality of having a child with a disability.  This is a picture of a Gerber Baby, a so-called blue ribbon, or perfect baby.

This week, the Internet is abuzz that the new Gerber Baby has Down syndrome.

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Gerber Baby Lucas Warren

I’m obviously going to have to rethink my presentation slide.  My point was that we all expect a perfect baby when our children are born.  The honest fact is that no child is perfect, but with most children, this is something we gradually figure out as the years pass – particularly when adolescence hits and we get the inevitable call from the principal’s office.  Our job as parents is to help our children embrace their imperfections, for that’s what makes them – and all of us – human.

If you have a child with Down syndrome, the fact your child isn’t perfect is immediately pointed out by many people upon diagnosis.  I am happy for Lucas’ family and I know that having a baby with Down syndrome represent the Gerber Baby is a big deal for new families.  I’ve seen lots of sharing of Lucas’ image on social media and indeed, this news should be celebrated.  It is great that children with differences are starting to get a shot at modelling.  I pause here to say how I wish we were more evolved as a society and this wasn’t big news at all; that the advertising world chose images that represented the diversity of our world – including diversity of ability.  But that’s me with my rose-coloured glasses on.

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Aaron is the dude in the middle

When my son Aaron was three, he was chosen to be on a campaign to advertise a Buddy Walk, an annual fundraiser for organizations who support people with Down syndrome.  We were thrilled to see his image on the sides of buses and up on billboards.

I understand how validating this Gerber Baby news is for us families who are anxious about the reception our children will be received in the world.  Lucas will be a role model for families with young children, no doubt.  We search for role models for now-14 year old Aaron, too – in television shows with stars with Down syndrome like Born this Way or through plays like King Arthur’s Night, co-written and starring Niall McNeil, who has an extra chromosome like my boy.  Aaron needs to see other people with Down syndrome in the public eye to show him what’s possible.  It affirms his very existence.

Having Lucas as the Gerber Baby will bring awareness to babies with Down syndrome. But will this mean the world will start to change to embrace disabilities?

“I’m skeptical this is a significant moment,” said David Perry on CBC’s The Current this morning.  I feel jaded saying this, but I agree with David.  We have to go further.  Awareness is not even a start to anywhere significant.  Awareness is just awareness.  We can’t pat ourselves on the back for being so progressive that Lucas’ modelling gig represents great change in a world that continuously and repeatedly discriminates against people with all sorts of disabilities.  That would naive and foolish.

I’ve written before about The Cute Thing.  Lucas is super cute, as was Aaron during his brief modelling career.  Aaron grew up and Lucas will grow up, too. We all grow up.  Teenagers and adults are not cute, whether they have Down syndrome or not.  Are those who are not cute – for whatever reason – simply discarded, if cute is all important?  Is it only those people with disabilities who make us feel better about ourselves (a disturbing phenomenon called Inspiration Porn, as explained by the late great Stella Young) the only people of value?

I don’t know the Gerber Product Company’s intentions by choosing a baby with Down syndrome to be their Gerber Baby.  I’d hanker a guess that it is for the same reason they choose any baby:  an attractive baby helps them sell products. The baby food business is big business.  I note that Gerber was sold to Nestle in 2007.  I’ve boycotted Nestle products since the mid-1990’s, ever since I found out about their unethical marketing of infant formula – allegations of which continue today.

I do so wish this news was associated with a more ethical company.

What I’m asking for is for us to consider: Is that all there is?  When a large corporation chooses a baby with Down syndrome to represent their product, does this mean that my son’s own life is going to improve?  Will he now have friends?  Will I have funding for therapies, respite or childcare for him now? Will he be able to find a job?  Love? Will he be safe as he makes his way in this world?  These are deeper questions that bubble up for me.

As I said about cancer, awareness is simply not enough.  It is a feel-good road to nowhere, unless it is followed up by real action:  a change in practice about how prenatal screening and testing is offered to women, a commitment to inclusive education + employment opportunities, equitable health care and governments who demonstrate they value all sorts of diversity.  For sure, let’s pause to celebrate the new Gerber Baby. Then let’s roll up our sleeves and get to work.

the real people behind canada waits

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Yes, it’s a slug.

Last November, Globe and Mail health journalist Andre Picard encouraged Canadians to share their wait time stories through the hashtag CanadaWAITS.

I am a woman whose breast cancer diagnosis last year took three months from the time I went to my family physician with a lump in my breast to the day I got diagnosed. I can’t find any Canadian standards online about what the ideal wait time should be before diagnosis, but eleven years ago, a CBC article indicated that the median wait time in my home province of British Columbia was 2.9 weeks in the Fast Track Program or 4.1 weeks for those not in that program, like me.

Fast forward to 2017, I waited a total of 12 weeks in British Columbia from the time I presented to my family physician to when I was diagnosed.

Some smart ass on Twitter tried to debunk the whole Canada Waits concept by tweeting that the reasons for the wait times weren’t known so wait time stories were meaningless. I have news for you pal:  stories are never meaningless because there are real human beings behind these stories.  Patients are not statistics.  We might be a N of 1, but 1 is enough.

I’d bet money if you bothered to actually ask the patients about their wait times, they could give you insight into the reason for the delays.

Here is my story, presented without commentary (save for the occasional descriptive adjective):

  1. Time between my initial family doctor visit and mammogram was over a week. I called the mammogram place to set up an appointment the moment I left my doctor’s office and the first available appointment was nine days later – this was for both a screening mammogram (in my right breast) and a diagnostic mammogram (a more extensive mammogram in my ‘suspicious’ left breast).
  2. I was told at the mammogram (in a public waiting room, no less) that I needed an ultrasound right away and they could do it on the spot. But that the radiologist said my family physician ‘forgot to check the referral box’ for an ultrasound, so I would have to go back to my doctor for another referral.
  3. I dutifully called my family doctor, who was mortified and immediately sent over another referral. The soonest I could get in for the ultrasound was three weeks later, despite the fact I had a ‘concerning’ mammogram.
  4. At the ultrasound I was told (again in a public waiting room) that I needed two biopsies. They could have scheduled these biopsies three days later, but I made the mistake of mentioning that I have a bleeding disorder. The radiologist at the diagnostic imaging centre said they would not do my biopsies and that I needed a referral to the women’s hospital – which my family doctor immediately arranged.  (Note:  I never did meet this mysterious radiologist who held a lot of power over me – all the messages from him/her were relayed through technicians and receptionists).
  5. I received a call ten days later from the women’s hospital, telling me that I would need to see a hematologist before they would do my biopsies, which were scheduled 33 days after my ultrasound because the breast clinic at the women’s hospital was closed over Christmas holidays.
  6. My biopsies then got delayed an additional 16 days because the women’s hospital refused to start an IV on me so I could be infused with a clotting medication before my biopsies. This had to be done at the hematologist’s clinic, at a different hospital, on the same day I had my biopsies. The hematologist’s clinic was full – hence the extra delay. (On the day of my biopsy, I was given IV meds at one hospital and then my husband had to rush me over to another hospital to have the biopsies done).
  7. I received a call with my breast cancer diagnosis one week after my biopsies. Two days later I was meeting with a breast surgeon, and two weeks later I had a partial mastectomy. I began radiation therapy 5 weeks later.

It is interesting to deconstruct these delays. The main reasons for my elongated wait time were:

  1. The radiologist refused to do an ultrasound on the spot because my family doctor did not check the correct box on the referral form = 21 day delay.
  2. The women’s hospital was closed for between Christmas and New Years = 10 day delay.
  3. The women’s hospital would not start an IV for my meds before my biopsy = 16 day delay.
  4. The rest of my delays seem to have to do with old-fashioned wait times at both the diagnostic imaging centre and the women’s hospital. This might have to do with the volume of patients and/or staffing or physical space issues; I don’t know. One delay had to do with me having a bleeding disorder, so I guess that’s my own damn fault. (Note: yes, I did advocate for myself, calling receptionists and politely and persistently asking to get on cancellation lists and pleading my cause – to no avail).

I was speaking to a friend who had breast cancer and was treated in Hong Kong over ten years ago, and she went from mammogram to surgery in FOUR DAYS. I am not sure what best practice is – maybe there is such a thing as being too rushed. But there’s a big difference between 4 days and 84 days.

Did my cancer grow during that time? Sure it did, but I had (have?) a sluggish, slow-growing type of cancer so who knows if this caused me much physical harm. The harm I did experience was of the emotional kind instead.

In 1999, a research study in British Columbia found: These findings confirm that, regardless of its outcome, waiting for definitive diagnosis after an abnormal screening mammogram is an intense and often agonizing experience for the women involved and for their families.

We knew of this ‘agonizing’ time 19 years ago and I don’t think wait times have decreased since then.  As Adriana Barton pointed out in her recent superb article, the emotional harm caused from cancer treatment is well researched, but from my perspective, there are little to no mental health support or services offered to cancer patients.

I’d add harm is caused even before you get a diagnosis – so this includes the excruciating waiting time thrust on the scores of people who have benign results, not just those of us who end up with cancer.

In my experience, the health system does not seem to care one whit about preventing emotional suffering and harm. Patients and families care, most clinicians care, but health care administrators and government bureaucrats who create these punitive policies and processes? Not so much. Wait times are shrugged off as the Canadian Way.

I only hope that the more we share our real human stories behind #CanadaWAITS that somebody with influence and a heart will finally pay attention.  Patients and families, refuse to be silenced, even if they write you off as difficult or hysterical.  This is undue suffering and this is not okay.