sharing your story

sharing your story

The original of this infographic can be found here: Sharing Your Story.

As families of kids with disabilities, we get asked to share our family story and our child’s story over and over again in different settings with different professionals.  This infographic is meant to acknowledge the work that goes into sharing stories, gives communication tips to help get messages across and encourages storytellers to take care of themselves.

These tips can also be applied to other storytellers, like patients and caregivers.  Please share this widely as a tool for advocates as they build their own toolkits of resources.  It is helpful for clinicians, educators and other professionals to understand the complexities involved with asking people to tell their story too.  I’ve been fortunate to have given workshops and presentations to audiences of families about The Art of Storytelling too.  Stories are important.  It isn’t just what you say, it is how and why you share stories too.

And now a little story of my own.  This visual was designed by Karen Copeland, who has been a terrific colleague and friend.  Karen is a mom to two teenagers and is no stranger to navigating systems of care or telling her story. She is passionate about providing families with the information and tools they need to be successful. Karen loves creating visuals to strengthen our key messages, hoping to frame information in a way that is easy to understand and impactful. You can see more of Karen’s visuals at her Champions for Community Wellness website.

I first met Karen when I moved to the west coast almost four years ago.  I followed her on Twitter after reading her blog post called I am ‘that’ parent and connected with her immediately online because I’m that parent too.

Karen kindly agreed to meet me for coffee.  I knew very few people here in British Columbia and I wanted to connect up with other moms for all the ‘peer support’ reasons (to share information and resources, for emotional support) but mostly because I was lonely and lost and needed a friend.  Karen was my first mom friend here and I’ll never forget her generosity in taking the time to meet with me, a complete and total stranger who she had met on the Internet.

We met at a Starbucks and clicked immediately. We said we’d collaborate together one day and we have.  She’s designed other infographics with my content:  Sharing the News, Meaningful Family Engagement and Giving a Talk.  We also travelled to Halifax together for a CFAN conference and she and I partnered to deliver presentations from a family perspective to groups of medical students. Karen has been a personal guiding light to me as she’s navigated her own balance of being a fierce advocate and caring for herself.  She also was there for me as a listening friend when I was diagnosed with breast cancer last year.

Our story is a testimonial to many things:  how vital it is for families to be connected together, how ‘just’ moms are always more than just that – we all come with other professional skills.  In Karen’s case, she has wicked design and storytelling talent of her own.  Our story also speaks to the power of two moms bonding over lattes, which can be the engine for innovative collaborations.  In fact, I think meaningful change in the world comes from these ‘kitchen table’ conversations and not from organizations or governments.

I’m deeply grateful for Karen and the other women I’ve met since I’ve become a mother 25 long years ago.  We lift each other up.  We believe in each other. Family to family connections can spark magic – Karen and I are evidence of that.

 

All the Feels: The Breast Biopsy

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Since I started writing about breast cancer on my blog, I’ve had the good fortune to hear from some lovely women who are in the midst of their own cancer scare or cancer experience, which of course starts with diagnostics.

On any given day, there many women (and some men too) are waiting for a breast biopsy appointment. While I was handed a mountain of patient education pamphlets over this past year, nobody told me how a procedure or test actually feels. Here’s my take on my own breast biopsies, with the important caveat that everybody’s experience is different – because of differing personalities, way to cope with stress, type of biopsy, health care environment and health care professionals.  This is a personal insight into the way I felt last year this time.

1. Waiting Sucks

The waiting really is the hardest part. When the day of your biopsy comes, you put your head down and get it done. But waiting beforehand can be excruciating. Acknowledge that it is hard. Be kind to yourself. Use whatever distraction and comfort methods work for you. For me, it was long walks, movies, Netflix, baths and sleeping. A beautiful healing book I read during this time was Birds Art Life by Kyo McLear.  Looking back, I realize that it was torture to wait but somehow you just do it, one day at a time.

2.  Nuts + Bolts of a Breast Biopsy

I’d recommend getting a ride there and back.  I was anxious during the drive there and afterwards I was sore and bandaged up. Make sure you ask the staff how long you are scheduled for so your support person can go for a walk during your biopsy and not be stuck in the waiting room.

There is no shame in taking your doctor beforehand about anxiety medication. There was no sedation with my biopsies (I had two done at once). Ask your GP about a prescription. For me, it was Ativan.  All it does for me is take the edge off my anxiety and makes me feel ‘ok’.  I don’t like taking pills, but I’ve also learned the hard lesson this year that I don’t have to be strong all the time.

Here’s what I wrote about the mammogram tech at my biopsy:  “The tech there is matter of fact but kind.  She rubs my arm when I get the freezing – I think her kindness is what made me cry.  When I was distorted under that mammogram machine, she brushed my hair out of my eyes.  I think she must be somebody’s mom.”   May you have a kind mammogram technologist and radiologist assigned to you. You can ask them to explain what they are doing during the procedure to help with your anxiety.

The whole procedure is weird.  I had core needle biopsies.  One biopsy involved being positioned in the mammogram machine and being squished and the other one was guided with an ultrasound.  Ask what kind of biopsy you are having.  They give you a needle for freezing before they take the biopsy.  That pinches.  Then there’s this strange ‘box’ that has the core needle in it and they press it down on your like an old-fashioned hole puncher and it extracts the biopsy.  It makes an awful noise.

I looked down during the biopsy extraction and wish I hadn’t because I was bleeding a bit and this made me woozy.

I thankfully kept my eyes closed most of the time, did some breathing like I was meditating and pretended I was on a beach in Hawai’i.  Breathing and visualization has helped me a lot through this whole damn thing.

I walked out with bandages on each biopsy site – which were basically little ‘pokes’, not scars.  My arm was sore for a couple of days from having been in one position for so long.

They likely won’t tell you any results at the biopsy, but you may get hints from the radiologist.  Ask them how long before the results will come in and who will call you. For me, my pathology results came back in 7 days and I got a call about my diagnosis from my family doctor, who had to give me the bad news that I had breast cancer. I hope you are in the 80% of women who have benign results! Again, waiting for results is a horrible time too. My most important tip continues to be: BE KIND TO YOURSELF.  This is a very stressful time even if it isn’t cancer – don’t minimize that.

It is a strange thing to wait for a breast biopsy (or any diagnostics) and then the results.   You don’t belong anywhere – like to a patient community – but you are suspended in an awful purgatory.  I didn’t want to talk to friends who had breast cancer about it because I was worried if my results had come back benign, that might have upset them. I realize now that I’ve had breast cancer, I’m happy to talk to anybody during this awful waiting, whether they end up with breast cancer or not. It does help to connect with folks who have been through similar experiences.

I’ll write more about All the Feels in future blogs…

you’ve got a friend in me

IMG_6099I have been asked to speak about the value of peer support at an upcoming conference.  But this time I’m not sharing research or best practice or information about community peer support programs.  I’ve been asked to simply talk about what peer support means to me, as a mom.

I had mom friends when my two eldest kids were little.  I was a young mom, with no family in town and I didn’t know anybody else with a baby.  I met these friends by stalking them at La Leche League meetings.  There I met crunchy granola moms like me, and our like-minded connections stuck.  These women helped me through the early bleary days of motherhood, a cross-Canada move, and a divorce.  I picked up other mama friends in playgrounds, neighbourhood alleys, school hallways and at my kid’s t-ball games.  I even moved to Norway with my kids to live with one mom friend and her family (long story).

Seven years and one marriage later, enter Aaron, my son with Down syndrome.  At the beginning, it was important for me to be surrounded by moms whose kids also had an extra chromosome.  I began a little moms group, and twelve years later, I am still friends with those awesome moms (the lovely ladies are pictured above).  As Aaron started in his neighbourhood school and I became invisible on the playground as the mom of a kid who was different, I gravitated towards moms who had kids with a ‘special needs’ designation at the school.  Diagnosis didn’t matter then – our commonality was our struggle with systems and society who couldn’t see our kids as kids first. (Don’t worry.  I have friends who don’t have a kid with a disability.  And friends who don’t have kids at all.  And friends that aren’t women, too. I don’t discriminate.  But this is about my mama friends). It took me 12 years, but I had a pretty healthy circle of mom friends in Edmonton.  They were my peeps, my lifeline, my confidantes.

Six months ago, my husband, son and I packed up our stuff and moved to Vancouver.  I am starting from scratch here to build my tribe, for adult friendships are constructed very slowly.

Since we’ve moved, I promised myself I’d say ‘yes’ to any social invitation that came my way.  As as a result, I’ve surprised myself by going to musicals and church events and having a great time.  The one mom I already knew in this Down syndrome world has been exceedingly kind.  Helping us unpack.  Bringing over food when my husband was sick.  Inviting us for dinner.  Introducing me around.  Showing me the ropes.  Another mom, who has an older son with autism, spent an afternoon with me in the coffee shop, going over her carefully researched list of services that she had typed up for me.  I was a mom she didn’t even know.  She also connected us up with the lovely young lady who did childcare for us this summer.  Lucky lucky me.

One morning in June, another mom approached me on the street – ‘I’ve heard of you!’ she said.  She has a young daughter with Down syndrome.  She invited our family over for a barbecue the very next day and we met some of her peeps too.  She kindly and unexpectedly looked after my boy as I drove my husband to the hospital emergency (another long story).  We went bowling with a family whose son plays baseball with Aaron.  I drive around the Lower Mainland to Abbotsford, New West and Squamish to meet with other moms.  I am happily getting to know my sister-in-law – a new mom herself – better too.

Twitter helps.  I find moms who are both writers and who have kids with differences just like me. Soon I am going for beer and burgers at a pub with a new gaggle of moms. Slowly, slowly, it builds.

The bond between mothers with children with differences is very strong.  We know without saying.  We don’t clean up our houses for each other.  We help each other as others have helped us.  We never apologize for our kids.  We appreciate the notion of a very short playdate that includes french fries and quick exits.  We commiserate over the (hilariously-named) Disabilitini.

Mothering any child is hard. We all need support, disability or not, and I wish our world was kinder to moms in general. I feel thankful for my trail of mom friends across Canada and now in Vancouver.  Is peer support valuable?  Hell yes.  But what is peer support, but caring for another human being?  These women don’t provide peer support to me. We are simply each others friends.

connection to other families

Me & Aaron & one of my best mom friends - 12 years ago!

Me & Aaron & one of my best mom friends – 12 years ago!

I’ve ranted and now it is time to get constructive.  Instead of hand-wringing about all silos in the worlds of health, education and social services, I’d like to propose some simple solutions to actually do something about it.  This is meant for professionals, people trying to help families and families themselves.

My first suggestion:
Connection with other families. If you know of families who have a new diagnosis, or who are new to an area, please find a way to connect us up with other families in our world.

Here’s a story:  A lovely soul at my work introduced me via email with another mom who lives in our neighbourhood and who also has a child with a disability.  We arranged a coffee date to meet at our local Starbucks.

I’ve been living here for two months, and I’ve had contact with many providers, professionals, specialists and coordinators.   This mom shared more helpful and comprehensive information in the first few minutes of our conversation than I had acquired in many hours of reading websites, looking at pamphlets and calling/emailing/meeting with professionals.

Her son is seven years older than Aaron, but this didn’t matter.  In fact, it was very useful to talk to another family member who was further down the road on their journey.  Here’s what was astounding to me:  it took us a full 15 minutes to realize our kids have a different diagnosis.  When she mentioned the Canucks Autism Network, I’m like: Oh, they have programs for kids with Down syndrome, too?  And she’s like:  Oh, your son has Down syndrome?  Mine has autism.  And we laughed and marvelled that IT DOES NOT MATTER what our kids’ diagnoses are:  our journeys are almost exactly the same.  Do not think that you have to connect one family up with one diagnosis with another family with the same diagnosis.  Our truths transcend diagnoses.

She gave me a carefully typed up sheet of contact information about who to call to set up services.  It flew right over the health, education, social services and recreation silos.  She told me the most helpful of all the agencies, and even called her contact there for me the next day to follow up on an email I sent about summer camps.

We chatted animatedly for an hour.  She said:  it will get better.  In fact, I left that meeting feeling a whole lot better.  I would figure this mess out because she had figured this mess out before me.  I was feeling hopeful (she had shared how her son took the bus to work, and I loved that insight into the future). I could email her anytime if I got stuck.  She was kind and generous.  I was a complete stranger to her and she dedicated her afternoon to me.  I didn’t have to have a doctor’s note proving my kid had a disability.  I didn’t have to sit there for two hours convincing her I required support.  I needed help and she helped me.  That was enough.

That’s the power of families.  Please please find opportunities to connect us families together.  It can be difficult to find these connections ourselves.  For instance, even though are other families with kids with support at school, I haven’t met even one of them yet – I’m not sure how to run up to a mom in the hallway at school and ask her:  Hey, does your kid have a disability?  #awkward

Us families support each other by sharing our lived experiences – this is something that health/education/other professionals – however well-meaning – can never do.  Step #1 to tackling daunting silos?  Connect us families up.  Together, we are stronger.