Love in a time of Covid: rescue a dog to save your sanity

Nothing quite takes the ability to blog quite like writer’s exhaustion. It is nearly a year to the day of completing my Master’s degree and I can now put fingers to keys and feel what it is to write.

And it feels lovely.

Not much feels lovely these days.  These are the days of Covid.  Days of teaching my child to wear a mask, of hand sanitizer and fear.  So much fear.  Politics aside, the fear quotient is off the sh-hizzle these days.  Perfectly healthy adults are dying, the death rate for the elderly is disturbing and I love my people.  I need them all alive.  I know medical trauma first hand as well as deeply knowing what it is to live with loss.  These days of Covid truly challenge my resolve to stay present in this grief, trauma and fear.

Therapy helps.  As a trauma survivor, therapy is a tool in my tool belt and I say this loudly, remove the stigma of therapy once and for all.  Seriously, my quality of life is better with therapy.

Getting another dog helps, too.

We didn’t intend to get a second dog during Covid. In fact this red coated beauty came home just 8 days before school shut down and the Covid closure began.  We found her through the same adoption agency as Josie, in a happenstance open house meeting.  We were at a local pet shop to look at items for a new puppy when we saw our favourite dog rescue agency was having an open house.  Penny was there with her foster leader and it was just love.  She is the most soft-natured dog we have ever had the good fortune to have.  Also the cuddliest. And Josie’s name is “little spoon” but this dog wins the cuddle contest.  We know very little about her first year of life, aside from the fact she was found kept in a basement of a home.  And what resulted is an irresistible combination of a dog that loves the outdoors and just wants to hang out next to you.  Preferably in bodily contact, at all times.

Covid has also let me feel the need to write again.  I have many thoughts about what I want for this space, including…perhaps another book….(shush! I did not say that aloud, turn around three times and spit).  Covid has made me tangibly aware of how her loss was 10 years and yet minutes ago.  Loss layers, and we are in the midst of what could be a traumatic and loss filled time.

So here I find myself, writing again and considering the state of things.  Considering this craft, washing dog slobber off my over worn “yoga” pants and wondering about school safety.  These are strange times and dare I say, I am overwhelming sick of everyone declaring them unprecedented.  That has become so overwhelmingly obvious it is nearly nauseating.

But not nearly as much as everyone posting all over social media pictures of intubation and comparing it to mask wearing.  I know that tube, and how it sits.

Just stop it.

Sincerely,

A trauma survivor.

Fuel to the fire

I had the opportunity last week to teach Supporting the Bereaved to a college class.  I am fortunate enough that I teach this curriculum quite regularly, with my audience ranging from doula groups, health workers and quite commonly students.  I have walked away from teaching in recent years, if I am so honest, the politics of teaching sucks.

Yes. I said it.  The politics of teaching sucks a lot and walking away was preservation of my mind, heart and professional integrity in many ways.

It had been about 8 months since I stood in a college class and was able to teach.  8 months since I held that space and it was remarkable.

I had forgotten the rush; I always get this hit of adrenaline when I am sharing our story. This bit of cosmic energy of being able relate our experiences to those that may have the ability to impact change. The rush hit me just as I was beginning to talk about Leming’s Fear of Death Scale and building upon personal constructs of death, where I turned and saw fresh faces wanting to know how to live inside of their fear and still support the bereaved. It hit me again as I was able to say her name many times over in sharing our and her story. And once more with the quiet thanks of the students as we wrapped up questions.

It never gets old and I am not quite sure what I will do.  I know this is my heart space and I know this book is the backbone of it all.  I need to promote the book more; push into the conference circuit more.  This push and wave of energy came at the right time as I am 5 months from finishing my Masters.

5 months and I can reshift once more and focus on how my education can propel this work. Propel our story further.

I believe it is time to start a new goal list for when my Masters is complete; that includes more of those little hits, more educating and allowing for our story to be the starting place to end fear for those accompanying the dying.

Oh! Hi there!

I know, another large break in between postings.

Many things change, at such rapid pace, I cannot even begin to say how many times I think to myself “I should blog about that,” or “I need to write” and I do not do it.  So here is a rapid fire list of things that I know I need to story about and share.

  • I did an incredible talk with a health unit in a neighbouring county this last week.  I do not keep track of how many lectures I have given, hundreds I think by now but this time it felt new.  Perhaps being in a new space with new participants or maybe it was the enthusiasm in which my message was received.  Whatever it was, I want another hit of that again.  And has made me think more about the larger conference circuit.
  • Elgin Community Loss has changed from monthly meetings to an online space with membership initiating their own private meetings. It is working nicely and the online space is super accessible. I know I told myself I would go to a bereavement support meeting 100 times before I finally did. Online makes it easier for engagement which is nice.
  • We built a barnwood accent wall in the living room and I freaking love it.  I took pictures all through the process thinking, must blog, but here we are. Maybe that should be the next written project. I took the opportunity to get a new accent chair and revamp the space.  It will be 5 years this March since we moved into the Dream on Russet!
  • I am 5 courses out of 8 through my Masters Degree as we speak. Who is coming over to celebrate next fall?
  • I continue to be frustrated with the lack of engagement from local hospitals regarding looking at the patient experience. I do wonder if I can use my Masters research to further understanding in this area.
  • Grief season is beginning to close in, with Christmas around the corner. Every year I wonder, what will this season bring?

The more I write, the more I think of to share. I think it is time to crawl under my blanket scarf and get to writing but first, our girl requested a nacho and movie night… pass the guac!

 

 

Preeclampsia Foundation of Canada

It is impossible to describe how lonely it is after you are afflicted with a rare disorder .  Every person that wants to know your story requires a detailed explanation worthy of a medical professional.  People that did not know better treated me like I was contagious, hiding their pregnant bellies and staying away from me as if HELLP syndrome were an airborne illness.  With every “Oh! I have never heard of that” a feeling of dread and isolation sweeps over you.  You are cast out, abnormal and alone.

It would take three years for me to meet another mother that had experienced HELLP.  And another three years after that for me to find the Preeclampsia Foundation of Canada and all the work towards finding a cure for Preeclampsia and HELLP syndrome.  I have participated in two promise walks, arm in arm and in solidarity with other survivors, loved ones and those that mourn for the death this syndrome causes.  It is a magical moment to know you may not be quite so alone, which was a driving factor for me in writing the book.

I came home from the hospital two weeks after she died and put HELLP syndrome in Amazon and nothing came up.

Nothing.

Community matters. Knowing that others are with you in the fight matters.

Just like she matters.

On September 28th I am honoured to speak at the Preeclampsia Foundation of Canada Conference.  Please consider signing up today and if not, donate to find a cure.

 

Puke Free Since 93: Revenge of the Reactive Airway: Part 2

**This post is unsolicited honesty about our journey. It is not medical advise but our story.

In July 2016 we embarked on a new journey to help Lillian’s move toward health and wellness in dealing with Reactive Airway. I wrote about it here.

That July rocked me to my very core, I was enraged and so very grief filled that my child was dealing with a disease that seemed to strike without warning.  Our house felt like we were walking on eggshells, waiting for the next virus to send us into the emergency room.   Although she had periods of control before, we had never seen an attack of this magnitude and adding more medications and “waiting” did not seem like the right answer for her either.

Do not get me wrong, we medicated her.  We followed every order our Dr gave us to the letter; I wanted her to live and I did not want her to suffer, we knew she was controlled on the medications but what I did do with this grinding, gnawing sensation ripping through me was hit the books.

I fell down the research wormhole into reactive airway and all it entails.  I read about personal accounts from all over the world, the impacts of the environment, virus’, activity and chemicals on the lungs and airway. I read about Dr’s that are forefront in their research and what the different approaches are in treatment. I found my Dr’s treatment model and why he prescribes to it.  I added myself to every forum and sat lurking reading every comment, every care plan, every child’s trip to the emergency room and how it was handled.  I read about resident Dr’s that get it and Pulmonologists that did not. I read about babies that have died because treatment is not enough and about desperate parents searching for answers.  I found resolve in knowing I was not alone and after nearly a full month of pure consumption of it all a pattern emerged.

Salt.

It all started with a scientist that found decreased levels of asthma and reactive airway in children that lived on a clean, salt ocean.  That one study and I began to pull the thread.  Personal accounts of parents that relocate their children to the ocean and asthma symptoms disappear.  The European treatment model of asthma and reactive airway includes spending time in salt caves for salt therapy for control of symptoms instead of steroids.

At first I could not believe what I was reading.  Salt therapy instead of steroids? What on earth is salt therapy?

Salt Therapy is a treatment in where you spend time in a salt cave, natural or human made, where low concentrations of salt can enter the lungs and dry up mucus and overtime decrease the inflammation associated with asthma and reactive airway.  To our luck, we happened to have a certified Speleotherapy Clinic about 40 mins from our home.  In July 2016 I made a consultation appointment for us and took Lillian by the hand and walked in.  Right as I pulled the door open, I glance to the right and see a large Eastern Redbud (like Ava’s Tree) right beside the door and had to hold back the tears.

Maybe this would be a good thing? Maybe a wink from Ava?

The treatment would be lengthy, over 14 weeks of 1 hour sessions and costly. It could be done without changing her medications and they warned me heavily of the regression she may have, after 6 weeks or so she could start having reactive airway attacks and we were to follow our protocol and to continue treatment to the full 14 weeks to see the results.

Guys. At first I thought this is a scam.  Nearly 2 grand in treatments, 80 mins round trip for one hour sessions of sitting in a tiny room with my kid, playing toys to have her get worse and ONLY after they have all my money she will be better?

And then I asked myself if I was willing to pay 2 grand on a chance to help her.  On a chance this was right. On a chance this would stop the attacks and the slow down the medicine and help her breathe better.

I signed on the dotted line. I signed it fast and we went for it.

For 14 weeks, from mid July 2016 forward once a week we passed by that Redbud tree on our way to Salt Therapy and I silently begged Ava to help her sister.  She never had a hard regression like they warned.  She had an increase in coughing but not an attack.  It was cold in the room, the therapy is temperature controlled and in the heat of the summer we would bundle up and read books, and play on the crushed salt floor together.  The entire room floor was a sandbox of salt, which Lillian thought was the most fun toy of all.   There are no windows with dark salt block walls,  a comfy sofa on the back wall and blankets to curl up with.  There were no electronics allowed so it was our time to just be the two of us, or maybe another child and parent would be in for treatment and we could quietly socialize.  I could taste the salt in my mouth and my sinus’ reacted.  I had salt dust on my clothes and every time I could feel my lungs opening and wonder what she was feeling as she played dump truck or dollies.

I now know what she was feeling.

Lillian has not had ONE reactive airway attack since June 2016. Not one.

She has had a croup attack (which is upper airway and different) but not ONE reactive airway attack. *touch wood* *throw salt* *spin around three times and spit*

In May 2017 her Pulmonologist said to me, “well, let’s take her off of all medications,” and we did.  I cried the entire way home from that Dr’s appointment with relief and joy. Since May she has been clear and the real test will come with the first major unmedicated head cold that she has.  Since the salt therapy when she would get a head cold  she never reacted and had an attack.  That alone to us was miraculous.   It was just a cold. JUST A COLD! We have never had JUST A COLD.  I could finally understand how people can have their kids get sick and feel indifferent about it.  This fall is her first fall unmedicated since her diagnosis in 2014, her second fall after salt therapy treatment and the results are showing.

She no longer snores.

She no longer bed wets.

She no longer has crippling reactive airway attacks with virus’.

She no longer takes a MONTH to get congestion out of her chest after each cold.

She no longer stops running and playing because she says she can’t breathe.

She no longer has this chronic, dry cough or throat clearing.

I no longer have a sinus infection each and every time I have a head cold, a fantastic bonus of accompanying her to salt therapy each week.

And the only thing that has changed in our world is Salt Therapy.

I feel so fortunate we have a certified clinic near our house and YES that 2 and a half hour adventure once a week was not my favourite thing to do. But I would do it again and again and again to see her this well.

So now we hold our breath once more.  May this winter be gentle and attack free. If it isn’t I know the treatment plan our Dr will want us on, and I know I will be packing her up once more for maintenance sessions at Salt Therapy the very next day.  This year and 3 months of being attack free has been some of the most wonderful I know of and I hope and beg the universe for many, many more.

And I am so very thankful for Salt Therapy.

 

 

 

Brought to you by Holding Space

I have a dear friend named Jackie.

Jackie and I crossed paths years ago through mutual friends.  I remember going to a night out for Christmas drinks at my friend Jen’s house, one of our first evenings away from Lillian.  There was Jackie, with her baby belly, expecting a child and me, obsessively checking my phone wanting to know everything was okay back at home.

If I had known her story and if she had known mine our conversation would have been so much more than due dates and party shenanigans.  If we had known we would have been stolen into a corner talking about all the things.

It took a couple years for our paths to cross again and when they did she quickly became someone I am very grateful to have in my life.  All heart, wit and compassion Jackie is all the stuff.  She now owns her own business, Holding Space Doula Services recently approached me about doing a loss talk for professionals.  I have done many loss talks over the years but she was looking for specific education on supporting pregnancy after loss, supporting at risk pregnancies and full spectrum loss.  At first I suggested the two of us get together and I could cover what she was looking for and she suggested why not get a class together?

The next thing I knew, my inbox was filled with dates, locations, numbers and rates.  Did I mention that Jackie is a go getter?  As in graphic designing logos, writing up descriptions and organizing a fantastic evening in June for now what looks to be 15 of me and some of the finest doulas I know to hang out and talk loss.

So sign up!  Come join us.  It promises to be a fantastic, informative, raw evening with Jackie and yours truly.

http://www.holdingspacedoula.com/classes.html

Finding space

It has been hard to find space here.

I love to write.  And the fact I have not hit “publish” on any blogs in a long time does not mean I am not writing and loving the rhythm I find in this creation.  I simply have not had the space here. Which is odd, as it is my space, created by and for me and yet I am not sharing.  Not publishing, not sharing with the other bloggers I adore and call my friends (Sorry Brooke, Caroline and many others!)

I fret, like a lot of bloggers do, about privacy of my living kid and what I share here becoming an issue for her in some shape or form.  I also find times I need to go quiet for myself because I need life to wash over me and drag me in.  To sweep me up in making lunches, gymnastics classes, writing, writing and writing for my college job.  In my grief group and creating spaces for loss Mama’s and their families.  In educating new students about loss and the treatment of the bereaved in traumatized.  In paper airplane races and advocating in my 3 days a week 9-5 job.  Like pre-loss, when life was just life and not something that was endured or survived.

I did a podcast today for Birthful and the lovely Adriana Lozada.  One of the questions she asked me was in regards to pregnancy after loss, living after loss and how that balance works.  It is not something I think of often, how to balance life after loss in all it’s twisty complexities.  It is something all of us Loss Mama’s just do.  Much like the ever popular query of “how did you leave the hospital with no car seat.” We just do.  Life does not feel complete since losing Ava, however, there is a contentment that returned in the last number of years thanks to this balance and finding it for myself.  Contentment that I am living the life I thought I would in the role of a mother.  Don’t get me wrong, I am not the mother I thought I would be, this is not how I wanted our family to be and yet Adriana saw clearly through the book that I have found a new place of being.  The newest normal.

Like Lillian going off to Junior Kindergarten.  Our newest normal of having a school aged kid in our home, of homework, teaching self reliance  and even more talks about making friends, consent and bullying.  This newest normal is also our beloved cat Simon becoming older by the day and now, after his 15th birthday, becoming more geriatric, loud and attention seeking.  He ran away, terrified us and scared himself as he did not know to get home again back in the summer and it became just how confused and small his world is now.  I want to say I work part time but when you have 2 part time jobs plus a book it is far more than part time it is actually all the time, with lots of flexibility to snuggle our girl when she needs it and just enough time to run to the gym 4 times a week so I do not lose my ever loving mind.  Or gain 20 pounds from all the chocolate consumption it takes to keep up the pace I currently am.  This new normal is relishing any time I have a chance to talk about the book, to talk to readers and share our story.  Of conferences and wine nights with my beloved baby loss mama’s.

So perhaps it is me that has to make the space to create here.  Perhaps it is time to move aside that newest normal and let the words back in, for me.

Hi blog, nice to see you again.

Stay tuned to find out when the Birthful 2 part podcast will be available for download!

 

 

The Revenge of the Reactive Airway: Part One

Lillian’s reactive airway has been under such control.

She was on the lowest maintenance steroid medication and I could not remember the last time we had to use her rescue inhaler.  Like any asthma mama, I have rescue inhalers stashed everywhere and yet could not remember the last time I had to dig one out for her. I was even a little fuzzy as to where they all were.

I got cocky.  I had swagger.  We were going to beat this thing, look at how much she has improved!  She had a few colds over the winter and no bad reaction, we were dancing on air.

And then June hit.

June 2016.  You nasty, brutal and maniacal jerk.

It started with a bad chest bug.  One that went through all three of us at one point.  It was the type of chest bug that lingers in the chest and has a productive, pain of a cough that will not abate.  During this bug I had her checked by the Doctor twice for fevers that came and went, ear infections and yes, chest checks.  Everything came back clear, “just a virus,” which only served to feed my confidence monster that she was healing and no longer having as reactive of an airway.

After three weeks of sick she returned to her normal self and we declared ourselves victorious.  And then,

IMG_1577
Emergency room at midnight

we found ourselves in emerge.  She developed a new virus only three days after the three week long virus finish.  At first it was innocent enough, runny nose and a tickle cough.  I picked her up from preschool on the Tuesday after work and brought her home.  Tuesdays are soccer night and she was just beginning to love it.  She was elated we were going to go, playful, eating but this tickle cough was getting the best of her.  I dug out the rescue puffer and gave her two puffs, then two more as per doctor’s orders.

And it did not seem to work.

Strange.  Listening to her it sounded like it was in her throat, not her chest.  She seemed well, her O2 read was great (yes we have a 02 meter, psycho loss parents alert #1)

Half way through that evening, not even getting to soccer, she descended in to one of the worst attacks we have ever had.  She could barely get through a minute without coughing, coughed repeatedly to the point of vomiting and could barely catch her breath.  The rescue puffer was not even touching it so into the emerge we went as per her asthma protocol.

Matt works with the hospitals and warned me on the drive in that the new Resident rotation was just beginning and thus we had no idea sort of treatment we could be in for.  New residence are not known for the best care, bedside manner or even tact. After checking in and being thoroughly scolded by the triage nurse for not giving her obscene amounts of rescue puffer instead of coming in, they walked us back to the children’s area to wait to be seen.  It was a busy night at the hospital or perhaps it was a bit of a new Resident slow down but we were placed in a small room, at the end of the beds which is usually reserved for mental health patients (appropriate, #2 loss parent alert.) The room was nice for the privacy and had more room so Matt laid down with her while I paced and tried to keep my crazy contained.

The Resident came in and introduced himself to Lillian first, winning points with me instantly.  He had a broad smile and began to go through his gigantic check list of questions, of which I could recite with him.

Identification.

Allergies.

Medical history.

And the dreaded, family history.

“Any siblings?” His eyes smiled at me behind his PPE visor.

The first time they ever asked me this question I remember being ridiculed and having to fight for my daughters well being harder because of the answer.  Perhaps it was the fatigue, the learned confidence of a seasoned Mama or just a heavy dose of grit but I did not even blink,

“One sister.  She died before birth. Stillborn.”

His eyes softened and his gaze met mine.  “I am so, very, very sorry.” And he meant it.  He seemed young, I would not assume a father but he got it.

Sadly the emergency room did not “get” Lillian.  They declared her reaction viral and did not give us any assistance other than the rescue puffer and sent us on our way. Arriving home that night at two-thirty am I pulled her into bed with us where I could keep an eye on her breathing.  By four am she had a fever of forty celcius and I knew we would be off to her airway specialist in the morning.

Her specialist barely glanced at her before announcing this a full blow reactive airway reaction.  He then explained that in RA children’s airways react and swell when coming into contact with triggers, in Lillian’s case her only triggers are virus’.  That swelling takes up to a month to return to normal. A month.  A month for her airway to recover from one bug if it is badly hit, therefore her airway was taking on a second bad bug with swollen, half closed airways.

Poor pumpkin.

Treatment given and maintenance puffer increased and my ego smacked hard.  Did I actually think I could will her well? Did I actually think it would be over so soon?  In the days to follow sadness and grief reigned as I attempted to reconcile that perhaps maybe, maybe she won’t outgrow it.  Maybe it will be asthma for the rest of her life?  Maybe she won’t play sports or be able to sleep outside of air conditioning in the humid summer? Maybe this is just…it?

And then I got pissed.

Really pissed.

Hot tears, white knuckled pissed.

And waged war.

Part two: To be continued.

On Motherhood

I was asked to write a two paragraph reflection upon motherhood by my publisher.

I wrote it a week ago and I find myself coming back to it and considering it time and time again.  Tweaking it, rewriting it and reconsidering the notion of Motherhood more fully.  I thought I would share it for all my loss mama friends out there.

On Motherhood

Motherhood is paradoxical.  The child that made me Mama, that gave me the title and that taught me about Motherhood has died.  I parent her without sight or sound or touch.  I parent through ritual, memories and the written word.  I parent my first born, my Ava, through the constant reminder that my life is now hers and bringing her with me on this journey is in fact parenting her.   My second daughter is the child that gave me the role of Mother.  Colic, diapers, giggles, wipes and all the pacing, worrying and loving that is Motherhood with a living child.  I do not break up fights between siblings, Lillian does not have to share her time or toys yet she understands beyond her years what loss looks and feels like from a very young age. That is Motherhood, parenting the paradoxical.

Motherhood is a lifestyle and a way of thinking.  I mother my daughters very differently yet both with validity and authenticity that is permeated with the love we share.  I relish Lillian, I soak her into my bones and breathe in her life at each moment that allows so I can remember the joy that is living.  Motherhood is life and death, it is remember what is lost and picking the cheerio off your sock all the while wondering if you are raising a heathen that will never keep her food on her plate.  Motherhood is worrying that it is all not enough, it is chasing a wriggling child to put on sunblock and it is time spent on my knees sobbing, missing, mourning and waiting for the wave of grief to pass.   Motherhood is life and death and mine.