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Nov 21 17

In the Shadows: Book Excerpt

by julie

I am anxiously awaiting the passing of this week as next week, I will receive the revised and expanded edition of my beloved book “What I Would Tell You~ One Mother’s Adventure with Medical Fragility.” I have updated and tweaked the existing chapters from the first edition but have also added 12 new chapters. The book is graced with a glorious fresh look as well as a new Foreword and reviews. I have written a section in the book entitled “What I Would Tell You About Preparing for the Inevitable.” This was a challenging section to write and should come with a trigger warning. I felt that since it is a reality for so many of us that it was necessary to tackle this topic that we often choose to shrink away from. Here is an excerpt from that section from the chapter “In the Shadows.”

Excerpt from “What I Would Tell You~ One Mother’s Adventure with Medical Fragility.” Chapter 36

“I was raised in a home where birth and death were openly talked about and viewed as a normal and necessary part of life. From the time I was very young, we attended wakes and funerals because my parents taught us that it was the right thing to do and because my sisters and I often ended up singing in the church choir. I have never felt fear around death, and I don’t back away from talking about it openly and being in its presence.

When Meredith was born, I felt Death lurking nearby and I knew that my time with her would be limited. Before we understood the depth of her brain injury and before her neurologist broke the news about life expectancy, we were aware that this beautiful child’s life would likely not outlast our own. For the first few years this knowledge sat front and centre in our minds. If we ever allowed ourselves a moment to exhale and pretend our lives were as normal as everyone else’s, reality would punch us in the gut with close calls and frantic rides to the hospital in the back of an ambulance.

In the days that followed each of these close calls, we would wander around in shock and horror at how quickly and abruptly things could change. I remember being hyper-aware of her smell and every sound she made. I would take countless photos of her, grateful for the opportunity to capture her through the lens of a camera. Should another close call occur without warning, at least I would have up-to-date pictures to remember her by.

I would have conversations with her and tell her that although I could not bear the thought of my arms without her in them, I understood if she needed to go. I always assured her that Tim and I loved her so much that if dying was something that had to happen, we would let her go. I don’t know how much she understood, but these heartfelt conversations happened again and again each time I felt Death come near.

After we were referred to Roger Neilson House and Meredith was deemed palliative, I began to imagine scenarios of her death. What would it be like? How would it happen? Would it be sudden or lengthy? Would we be in the hospital or at Roger Neilson House?

I also contemplated how I would be afterward. I reasoned that since we have always known that we would likely outlive her, somehow I would be able to “handle” it okay. I remember speaking to my counselor about it shortly after we learned of Meredith’s short life expectancy, how I matter-of-factly told her that I was more worried about Tim than I was about myself. I would be fine, I said. She looked at me and nodded, knowing that my denial of the enormity of what was to come was protecting me for now.

In the early days when things were excruciating for Meredith, I believed that death would come as a relief. Since there was no relief to be found, it was only natural that my weary mind would go to such lengths to imagine her having comfort and peace. I didn’t want her to die, I just wanted her to have a break, and dying seemed to be the only way she would achieve that. Those days were like hell on earth, as I tried to navigate a road that had so many washouts, detours and sinkholes. I just didn’t know how she (and we) could cope with it all day in and day out indefinitely.

Shortly after Meredith’s tenth birthday, things changed drastically when one medication miraculously controlled the nocturnal seizures she had been dealing with for several years. For the first time in a decade, we were getting uninterrupted sleep. I remember keeping track as though they were gold stars on my chart of life. Look at us … 93 nights of sleep in a row! Meredith’s health stabilized and life got a little easier. Death seemed to retreat into the shadows, and we basked in this time knowing that it could reappear without warning.”

©Julie Keon 2017

Sep 11 17

What Is Worth Keeping

by julie

It sits in her office beckoning for attention. This clear plastic container, bursting with everything that connects her to the deepest pain and greatest joy of her life. She sees it each time she enters the room. It is the last box standing after a purge of her collectibles gathered over a lifetime. It no longer made sense to keep a lifetime neatly packed away in the darkness of bins, bags and trunks.

The previous year, she embarked on a psychological and physical pilgrimage that challenged her to come face to face with the past and cleanse her life of mementos that were best given to charity. Childhood memories were encapsulated in miniature Monchichi statues and in a retro Girl Guide uniform with badges proudly stitched on by the hands of a child. She discovered tiny boxes holding pewter peace signs and rock n’ roll badges that she once proudly pinned to her 1940’s army jacket. There were the leopard-print ankle boots purchased at a hip store in Ottawa when her dad, desperately trying to connect with his sullen, rebellious, teenage daughter, drove her to the city so she could buy items that expressed her uniqueness.

An entire box of journals written throughout her adolescence and early adulthood revealed the truth behind the pain she carried at that time. Onto the pages of these hard covered books, she poured all of her anger and sadness; turmoil that was impossible to temper through visits with a social worker and the school guidance counsellor. She wept as she opened journals, reading random pages filled with rage about such things as the separation of her parents and the high school teacher who got away with preying on and assaulting young girls. There was the older brother of a friend who agreed to walk her safely home and then left his teeth marks in her arm and bruising on her breast. There was enough heartbreak causing her to question if she would ever be happy and there were the fleeting thoughts that perhaps the only way out of the pain was to end it all.

Then there were the letters, thousands of them, written in a time before texting, emails and Facebook messaging. These she shredded including countless love letters from various suitors. She had contemplated keeping them as proof that she was well-loved in her life in case the day came that her memory betrayed her. She reasoned that the only one who mattered now, in fact ever mattered, was the man she had loved for the last twenty years and who loved her back in the way she needed to be loved.

For months, her home office space was a battleground between the past and the present. One by one, dusty lids were pulled off of bins crammed with everything that told the story of her life. At forty-five, she was optimistic that this was mid-life and that she still had a good fifty years of living left. However, she was reminded on a weekly basis through her work of writing and leading meaningful funeral ceremonies that there are no guarantees as to when our time is up. The calls came regularly from families needing her services to honour a loved one’s life that came to an untimely end, often tragically, through accidents, illness, and suicide. She thought about death a lot, a side effect of her job, and she knew that if there was ever a time to get things sorted and purged, the best time was always now.

Dying without warning, is always a possibility and leaving her husband to navigate a lifetime of her hoard was enough to motivate the purge.

Months passed and the countless bins pulled from the space, affectionately referred to as the “hoarder room,” were condensed to one small trunk of photos, letters written by her parents and her husband and the many journals because to destroy them would be sacrilege.  The “hoarder room” became a walk in closet and any last minute decisions as to what to throw away and what to keep were quickly made due to the reality that there was no longer space to house them.

Yet one bin remained untouched, its contents partially revealed by the items pressed up against the clear plastic as though desperately trying to make an escape. From where she sits at her desk, a reindeer face, its’ antlers made with the handprints of a child, stares back at her with its googly eyes. Tucked in behind it are pink baby sleepers and a baby blanket that her mother crocheted for her while on an Alaskan cruise dipping it into the ocean as a baptism of sorts before gifting it to her.

Photo ­­albums peek out from the bottom. There is a baby book containing hair clippings, and space to write important information like baby’s first haircut, first food, first step and first day of school. She remembers receiving it as a shower gift as she eagerly awaited the birth of their first born. Now it sits in the bottom of a bin, blank in so many spots because her baby’s firsts never came to pass.

It has been months since the great purge of 2016 came to a close but this one box remains shoved up against the wall in her office. It has taken on a sacredness that she fears could potentially be destroyed by the simple act of lifting the lid. She has even considered placing a cloth over it and using it as a table instead of facing this last remaining collection that, like everything else, must be sorted and confronted head-on.

She is well aware that this box is a physical manifestation of the emotional container she has carefully constructed; a place to put the raw emotions connected to the past thirteen years since her daughter’s birth on a cold, December night. Removing the lid of the plastic container could essentially blow the top off of the emotional burden she has carried as a mother to a child who lives each day with a massive brain injury due to a lack of oxygen at birth.

Time and experience have taught her that one must plow through that fear no matter how convinced one is of the impossibility of doing so. Shrinking from life’s biggest obstacles robs one of valuable teachings and living life with depth. Keeping this in mind, she musters the strength, as she has done so many times before, and pulls the heavy box to the centre of the room. She gingerly removes the lid.

On the top, she discovers countless progress reports from the many therapists who paraded through their home in the early years. She remembers reading the reports searching for a glimmer of hope. They were rare but always cause for celebration. That was when she and her husband still believed they would all wake from what felt like a nightmare. The therapists come less frequently now as the reality of the long-term effects of the brain injury became glaringly obvious and hope was nowhere to be found.

There was the letter from the neurologist which was kept in the glove compartment of their van for the first few years. It reads “This child cannot sit in a car seat due to her medical condition.” It was to be used if the police pulled them over and questioned why their child was sitting unrestrained in the arms of the mother in the backseat. She is swept back to the days of holding her screaming child in her arms as her husband drove the 120km to the children’s hospital. This flash of memory elicits the trauma, buried deep within, sustained on these road trips. 

As she lifts each item from the box, she unwittingly journeys further back in time until reaching the bottom layer. There is the original hospital card from the baby bassinet in the Neonatal Intensive Care Unit announcing the name and weight of their newborn. Cute illustrations of teddy bears and birds dance around the information oblivious to the tragic outcome of the birth.

Countless photographs were thrown into the bin haphazardly over the years, moments captured in time. She recalls the forced smiles and the application of expensive under eye concealer to hide the ever present dark circles; a result of years of broken sleep and unrelenting stress. A smile crosses her face when she catches the metallic sheen of a deflated mylar balloon. That balloon, purchased during one of the many stays at the children’s hospital when her baby was just 8 months old, was the catalyst for their baby’s first gummy smile.

A letter written by her father just three weeks after the birth is carefully crafted so his words do not reveal the fear and sorrow he carries for his daughter, son-in-law and new grandbaby.  Reading this handwritten note triggers long-buried grief. One by one her tears plop onto the yellowed, loose leaf paper on which the letter was written. She is tempted to stifle them but instead lets them fall away like the dreams she once had for her baby.

Long forgotten gifts, like a now-tarnished silver baby bracelet, angel charms and prayer cards for the sick, are set aside to make their way to the thrift store. Everything else is returned to the bin. One by one, she folds each tiny sleeper. She returns the baby book to its place in the bin covering it all with the crocheted baby blanket for safe-keeping. She is not ready to let go of them just yet. There will come a time when the predictions of her daughter’s life expectancy will come to fruition and all she will have left is this bin of souvenirs.

The heartbreak of an empty baby book have faded with time. Day after day, my daughter teaches me that grit and resilience do not come from wearing an army jacket and leopard print boots, as I once believed. My child, in spite of her injured brain, teaches the greatest lessons in living fully even though death is always lurking nearby. I know now that it is just stuff and the real keepsakes of this part of my life, the hard-earned wisdom and complicated joys, cannot be stored in a plastic bin.

Copyright © 2017  Julie Keon

**This piece was written February 27th 2017 when, on a whim,  I decided to enter the CBC Nonfiction Literary Contest. I did not win the contest (not even close) but I am grateful that by entering it, I produced this piece of writing. To me, it is one of the most poignant pieces I have ever written revealing highlights (and low lights) of my life in a mere 1713 words.  This piece will also be the prologue of my third book.**

 

Aug 29 17

First Day of School~ Just Another Day

by julie

It’s that time of year when my newsfeed is flooded with smiling, polished children all ready for their first day of school. They proudly pose for photos holding up signs or fingers showing the grade they are about to embark on and beaming with pride as they head out the door with their brand spanking new outfits and back packs.

This time of year was once a huge trigger for me. I use to close the curtains to avoid witnessing the steady flow of children and parents walking by our house on the way to school. Our yard backs onto the school property so I continued to be tortured throughout the day with the sound of the recess bell and children laughing and shouting as they played. But like most triggers, it eventually loosened its grip on me. I can now scroll through my newsfeed and genuinely enjoy seeing photos of my friend’s kids starting another year with hope and anticipation of making this year the best so far.

There was a brief time when we thought there was a slim chance of Meredith attending school. To pacify our eager therapists who really wanted to see Meredith in school, we spent some time in the Kindergarten classroom just to see what it was like. Meredith was not tolerating her wheelchair back then and so I held her on my knee while frantically protecting her from the many hands that wanted to touch her face as though she were a baby doll.

Most of the kids stood a distance away and watched Meredith with curiosity. One little girl walked over, introduced herself and handed Meredith a doll to play with. I recall thinking how incredible that was. I imagined that little girl was destined to change the world in big ways. It was stressful but manageable and we took some pics knowing that this would likely be the last time Meredith was in a classroom.

At that time, she was so fragile that just putting a spoon in the sink or closing the microwave door could set her off. Any sudden noise was a trigger for extreme irritability that could last for an hour or more. Being in a typical classroom and school environment would be far more difficult than what it was worth.

Each year, care coordinators would ask if we thought we might enroll Meredith in school. Each year, we disappointed them with our answer. We understood Meredith’s needs better than anyone and knew that school life would be a disaster for her and so we chose to keep her home. Finally, we respectfully asked that it not be brought up again. We assured them that should some miracle occur, we would be the first in line to enroll her.

And so, for those of you about to send your children to school for the first time, I hope it will be a smooth transition not only for your child but for you, too. It is a test in surrender to trust that others will care for your child as you do. For those of you who cannot send your child to school and feel that pang of sadness as you scroll through your newsfeed, as I once did, know that you are not alone and that your sadness is real and valid. Plan something special for your child today and take care of your heart. This day will pass.

Aug 21 17

Grief Found in the Most Unlikely Places

by julie

We talk a lot about grief in the special needs community. It is common thread that weaves its way through all of us. Sometimes it is intense like in those early days when the life you imagined for your baby is unlikely to come to pass. Loss is all around you and it really feels as though you will never again have a day without sadness. It surfaces in the weeks before birthdays and as we witness others celebrating holidays that we know our little ones will never fully enjoy or in some cases, never comprehend. Seemingly benign moments in a day can be interrupted by the flooding of emotions connected to our grief that is never far from the surface. You see a child who is the same age as your own, and you weep with the realization that your child will never twirl around in a tutu or run like the wind chasing after a fly ball. In the beginning, just seeing a pregnant woman or hearing the birth announcements of friends and family can send a parent like me reeling into the abyss of grief.

The magical thing about grief is it can be transformed. It must be expressed and we must do so without judgement. Grief is very personal and what may trigger one person may have no effect on another. How we grieve is also very personal. Some people have moments of guttural wailing and this releases the built up pressure just enough to face another day. Others may not cry at all and yet still experience deep grief. There are as many theories about grief as there are losses to grieve. Many theories are inaccurate but have managed to stick around in our collective unconscious like a piece of gum on the bottom of your shoe on a hot day. The five stages of ‘grieving’ comes to mind. Don’t even get me started on that one.

It is best to really listen to your self and to honour your grief anytime you sense it percolating. Sometimes you will be able to anticipate it like when your child’s birthday is approaching while other times, it will take you off guard. Telling yourself that you shouldn’t be feeling the way you do does nothing to alleviate your suffering. You may manage to push it down into the dark, cavernous places of your psyche but it will only remain there before given the opportunity to be expressed.  Our bodies and our minds can be very creative in expressing emotion no matter how determined we are to keep things buried. Approaching grief with a sense of curiosity and self-love can go a long way in its transformation. It is tedious and exhausting yet necessary if you wish to eventually feel more joy and less sadness in your life. Each time you acknowledge and express your grief, you move closer to once again feeling profoundly happy.

Although I am fourteen years into this parenting experience, I am still intrigued by the things that will cause a stir and leave me flooded with sadness of what could have been. I remember when Meredith was nine years old, I ran into a woman I knew from elementary school while shopping. She noticed the box of Pampers in my cart and asked me about my “baby.” Five years later, I still have a moment of melancholy when I buy a box of Pampers for my almost 14 year old. I attended a baby shower recently and although I have attended many over the years, I was surprised when the unwrapping of one gift in particular, brought a wee tear to my eye. The mama-to-be tore away the wrapping paper to reveal a Graco high chair, a newer model to the one I received for my own baby shower. I remember looking forward to using this generous gift with our new baby but after the reality set in that our girl would be exclusively g-tube fed, the high chair made its way to our basement. It remained there for years, never unpacked or used. Seven years after my birth, I met a couple in the prenatal classes as I was teaching. They were struggling financially and we decided to give them our high chair. It was a bittersweet day when we hauled it out of the basement and handed it over. With so much time between then and now, I was taken by surprise when this gift was opened.

I have learned that our intellect can be very convincing when it comes to coping with loss. It is moments like the one I experienced at the shower when my heart silences my intellect long enough to allow the light to shine on my emotions. At this point in my life, these moments of unexpected grief are few and far between and when they do happen, it is swift. It lasted as long as it took for everyone in the room to “oooohhh” and “aaaahhh” as the honouree finished unwrapping her gift. It was gone as quickly as it had arrived.

We delay the natural evolution of our grief when we stifle it, shame it, intellectualize it and judge it. Accepting that grief is a lifelong companion in this experience of parenting allows you to wrap your arms around it when it pops by for a visit, trusting that it is the very nature of grief to be fluid. It cannot stay stuck indefinitely. Give it the attention it requires and the space it needs to evolve and transform and you will be gifted with its wisdom.

 

Jun 28 17

Farewell to Dr. H

by julie

December 10th 2003

We have encountered countless clinicians and professionals over the past 13 1/2 years. It’s part of the deal when your child is medically fragile. You cannot do this on your own and so, whether you like it or not, there is a whole crowd that follows you around for the rest of your child’s life. Some have been with us briefly while others have been with us right from the start. Meredith’s neurologist, Dr. H., is one of those people. Those first few days after she was born are a blur but I remember the morning of December 10th 2003 as though it happened this morning. We knew Meredith was having an MRI early that morning and when we arrived at the NICU she was there in her bassinet having just returned from the imaging department. Tim snapped this pic of us and I have spent a lot of time studying this photo as it is the last picture taken of me before receiving the hardest news of our lives. I have always been fascinated by how a few words shared by our neurologist in just a moments time, changed our outlook on life, parenting and how we thought everything was going to be. Just like that, his words, so carefully crafted, fell out of his mouth and tumbled onto the NICU floor: “As suspected, your daughter suffered a hypoxic event at birth. On one end of the spectrum she will be a clumsy child and on the other end of the spectrum she will have cerebral palsy. We’re leaning towards that end.” And just like that, life as we knew it dissipated and we found ourselves flailing in the abyss that follows bad news, tragedy and sudden, unexpected outcomes.

I have imagined so many times, what that must have been like for him. How he awoke that morning, went to work as he did every day knowing he would have to break this devastating news to us. We weren’t the first. He was a seasoned neurologist but I suspect this is something that never, ever got easier for him. I recall feeling sad for him. I could see how he had learned over time how to deliver this type of news balancing stoicism with empathy. We saw him again 24 hours later and there he went into more detail about Meredith’s prognosis. When you are receiving news of this magnitude, you tend to hear them as though you have cotton in your ears. You hear them but they are hard to digest. I remember very clearly how he reassured us that no matter how significant the brain damage was, Meredith would love us and would express that in her own way.

After that visit, a pattern developed where I would urgently need to go to the library or the cafeteria whenever Dr. H was coming by to check in on Meredith. Each time, he would politely offer to wait for “mom” but Tim would reply that I would not be present for the visit. I would return when the coast was clear and Tim would update me. Ten weeks after Meredith’s birth, we were discharged from the hospital. It still amazes me how we brought this medically fragile baby home and managed to care for her. If there was ever a time I felt as primal as a wild animal it was then.  

November 2008

I relied on instinct and a fierce sense of love and protection for Meredith. It wasn’t long before we had to have our first visit with  Dr. H. I spent the whole day before packing and preparing for this appointment. It was a big deal to just survive the day; an even bigger deal to leave our home and venture out into the world with her. I had tremendous anxiety and barely made it through the appointment. And the anxiety continued throughout that first year. It lessened as time went on but it wasn’t until we neared her first birthday and met with Dr. H again that I realized that the root of my anxiety was because I connected him with a very difficult moment in time. Recognizing that and sharing it with him, helped me immensely. He said that it was a normal reaction as he was the messenger of such heartbreaking news.

The years passed and he helped us through so many difficult times. The first ten years were shocking at best but he stands out as a constant beacon of light. It’s his words that have stayed with me throughout it all. There was a time we were admitted and Meredith was presenting with puzzling symptoms. A young, whipper-snapper of a doctor wanted to increase one of her medications to control the severe arching pattern she had developed. He assumed it was simply related to the cerebral palsy. I insisted that the arching was due to pain and asked him to consult with Dr. H as I wasn’t trusting of anyone else. He came back and said that Dr. H told him to trust the mother: “She knows this child best of all.” They promptly did some tests and it turned out, Meredith had a severe urinary tract infection.

When Meredith’s brain was misfiring and causing her to go into sudden periods of respiratory distress resulting in frantic 911 calls, Dr. H was the one who sat down with us to have a frank discussion on life expectancy and then referred us to the children’s palliative care home. He knew since her birth that this was likely the outcome but he was wise enough to know that parents can only digest so much heartbreak at one time. Eventually our appointments were an annual occurrence because Meredith was stable and we were no longer as mystified (or terrified) by her behaviours. I remember bringing her in to see him, an appointment that I ironically looked forward to each year, and before leaving the room he said, “You have done a great job, mom (and dad).” Those words had such a positive impact on me.

Last week we showed up for our annual appointment but after hearing rumblings of his upcoming retirement, I knew that this would probably be our last appointment with Dr. H. It was a bittersweet day and yet I was surprised by the depth of emotion that was being stirred as I sat in the waiting room. He came out to get us as usual and we walked together to the examining room. Meredith was sitting in her wheelchair and was tolerating it for a moment. I told him that this was his retirement gift. He knew how we struggled for years with Meredith’s seating and how we held her for 15 hours/ day for 81/2 years. There was a nurse practitioner present at this appointment and Dr. H and I reflected on the past few years and I shared with her how I dreaded seeing him in those first few months. I did everything I could to hold back my tears. I realized that he has been a constant since the beginning of this journey and I have trusted him most of all out of all of the clinicians we have had contact with.

This is just another part of this experience that I wasn’t aware of until now. Our grief takes on many forms. Having to say good-bye to the ones that have walked alongside us in our darkest times, is one loss I hadn’t anticipated or prepared for. Dr. H isn’t the warm and fuzzy type although over the years, I have caught glimpses of his dry sense of humour and we have shared many laughs in the midst of the seriousness of our reality. Having the opportunity to thank him for his service and to hug him was just what this mama needed. I requested a photo of him with Meredith and he bravely asked to hold her. The photo below says it all. We have had quite the journey and I know we are one of many his patients who will miss him deeply. I will be forever grateful that he was on-call on a cold December night 13 1/2 years ago when Meredith decided to be born and stick around.

Dr. H and Meredith
June 2017

May 14 17

Isolation

by julie

Thirteen years ago, I spent my first Mother’s Day cooped up in a room with Meredith and Tim in isolation at our children’s hospital. Just 6 months earlier I was nearing the end of my pregnancy and looking forward to this next stage in our relationship when we would graduate as parents. I was excited to experience all of the firsts that would follow our baby’s birth which was due to unfold in early December. I imagined my first Mother’s Day gathering with my own mother and celebrating that I was now part of this revered clan.

Meredith was struggling right from the moment she entered the world and by the spring we had spent a total of 15 weeks in the hospital. It seemed that we would just get home and settled in when another crisis would arise and back we would go to where we were inevitably admitted for lengthy visits.

So when Meredith was continuously waking throughout the night and violently retching 20 times per day, we knew we needed to get some answers. We were placed in isolation and I recall feeling like a caged animal. We lived on submarine sandwiches and chocolate and made the best of our time. This was not how I envisioned my first Mother’s Day.

I remember being connected to a mother in Vancouver who had a 14 year old daughter diagnosed with cerebral palsy at the age of 2 after a choking incident at her daycare.  When I reached out to her I was a brand new mother and I was terrified. We had been at the children’s hospital since the night of Meredith’s birth and the days quickly turned into weeks. I wondered what life would be like on the outside of the walls of the hospital. How would we survive this? Was it possible to ever be happy again? Would life ever feel normal and easy? Would our marriage survive? These were the questions that swirled around our minds as we got up each day and gave everything we had to ensure Meredith’s survival and happiness. I will never forget Cindy, the Vancouver mom, who emailed me and assured me that we would be able to have some sort of normal life again. In one email, she described how she and her husband were preparing to go away for the weekend and I remember thinking that maybe we, too, could do that one day. I knew it wouldn’t just happen but that we had to make our relationship a priority. It was critical that we not lose sight of that. 

It started with a lunch date when Meredith was just three months old and we had finally been discharged from the children’s hospital. We left Meredith with my parents to walk to a nearby café. It was far from romantic and our conversation was strained under the weight of our sleep deprivation and new reality. Still, we forced ourselves to face each other head-on in a feeble attempt to catch a glimpse of the love that we knew was there.

During one period of crisis where Meredith screamed for hours on end and we were not buying into the “kids-like-her-are-irritable” explanation, we ran away for one night and left her in the capable hands of my sister and mom. I knew that, as seasoned mothers, they could tag team for 24 hours so Tim and I could have a chance to catch our breath. We needed to regroup as we knew our next steps would likely lead to another lengthy stay at the children’s hospital.

Over the years, we slipped away for a night every few months, camping out in motels that lacked in both visual appeal and cleanliness. Regardless, we made the most of those nights. Closing the door behind us, we approached these getaways with the sole purpose of reconnecting and remembering that our relationship was worthy of the same care and attention we gave to Meredith. This carried us along for many years. It wasn’t much, maybe only 4 nights away in a year, but it was enough to sustain us.

Thirteen years have gone by since that first Mother’s Day. We are in isolation again but this time it comes in the form of a cabin reserved for couples who need time away from their usual day to day lives. Tim and I left Friday at noon and drove almost two hours to Le Canotier, a rustic cabin by a river where a couple can be self-sufficient for a weekend or a week and simply bask in each other’s company and in the beauty of nature that surrounds them. For 48 hours we have been disconnected from people, technology and responsibility. We have sat by a river in the hot sun, drinking wine and listening to the birds. We have fallen asleep in complete darkness listening to the chorus of peepers outside our window. The cabin is equipped with a record player and over one hundred excellent albums for all music tastes plus board games and puzzles. We have lived on cheese and crackers, pate, gourmet sausages, potato salad, coffee, wine and Baileys. As each hour has passed, we have felt the distinct sensation of stress and worry loosening their grip and being carried away with the river.

Tim captured me napping to remind me of the importance of self care.

We learned many years ago that guilt has no place at these retreats and this time away together is not only a wise investment in our marriage but it is a necessity in being the best parents we can be to Meredith. It not only nourishes our relationship but it is nurtures us as individuals. Tim sneaks away to walk in the woods and takes photos. I stay at the cabin to curl up with a book and then nap without any concern for the time.

We rarely have privacy in our home. Having caregivers/ nurses to assist us is a fact of our lives and one that we are grateful for yet we have never completely gotten used to having our home so open to so many people. Getting away provides us with privacy, perspective, uninterrupted conversation, time to linger in bed and to really see each other again and remember who we are beneath the daily grind. There is magic in that and it is something we will continue to do and to guard with as much determination and dedication as we put into caring for Meredith.

Tim and I at the end of our weekend. Blissful and ready to head home and see our girl.

I am grateful that thirteen years ago a wise mother, unknowingly, gave me the best advice I could receive when she shared her plans for the weekend. It has been a gradual process and it took us twelve years to get away for two nights in a row. Deliberate, intentional plans to spend quality time with your love is a starting point. It is my wish, on this Mother’s Day that you will take this advice, as I did so many years ago, and will not underestimate the wonders a cheap motel and a bottle of wine can do for your relationship. If you think cannot do it, you are starting too big. Start small. Do what you can manage and build on that. Look for the helpers. They are waiting in the wings for your cue to allow them to take over for a little while so you can nurture yourself and your relationship. You deserve it. Your relationship deserves. Your family deserves it. Happy Mother’s Day!

 

 

Jan 16 17

In Defense of the DOULA

by julie

There are moments that change the course of your life and that happen most often unexpectedly and always with a feeling of divine intervention.  One of these moments happened to me in the spring of 1998 when I attended a women’s health fair in Victoria, BC, where I was living at the time. I was a new resident to this west coast city and working in an art gallery in the tourist district.  I had graduated with a college diploma in social service work but aside from volunteering with Victoria’s street community, I really hadn’t found a job within the parameters of the work I hoped to do.  And then I happened upon a booth at this women’s health show, promoting the work of doulas and specifically the BC Doula Association. I was intrigued and felt an all-knowing-buzz that THIS is what I was meant to be doing. This serendipitous encounter, led to the  scraping together of my limited funds and enrolling in a birth doula training course that was scheduled in Victoria in the coming month.

The weekend was nothing short of incredible, moving, life changing and life affirming. For me, doula work was a privilege and getting paid to be with a woman and her family as she birthed a baby was a bonus. I had found a career that was beyond fulfilling and that I could make a small living doing. I continued to work at the art gallery until my clientele base reached a point where I had to leap off the cliff with both feet to do the work that I was very passionate about. Sometimes I would be gone for 30+ hours and my husband was always impressed at how happy I was when I returned home exhausted, weary and exhilarated. What a blessing it was to help women in this capacity! It took time for me to gain the experience that I felt qualified me to charge a fee for my services. My very first birth was for my sister and I gained a tremendous amount of experience in her 50 hour labour. My second birth was done in exchange for a year worth of haircuts as the mother I supported was a hair stylist. I helped several mother’s living below the poverty line who paid me what they could which was usually covering my costs for parking, snacks, etc.

Doula work is demanding and anyone who goes into this work must first and foremost do so because of a desire to help others through one of life’s most challenging experiences. One must be creative in generating other modes of income as there is a limit to the number of births one can do per month. I supplemented my income as a belly cast artist,  prenatal educator, and as a certified breastfeeding counsellor.

As I established myself as one of the more experienced doulas in the community, I noticed this question popping up more and more: “So you do a weekend training and then can start charging $600/ birth?” My answer was always the same: “Don’t go into this work to make money. If that is your guiding principal, you will burn out fast .” With that said, I felt that doulas should be fairly compensated for their care but the truth is, you can never be fully compensated for this work. There has to be a deep desire to help people. It bothered me that some women looked at this as a quick way to make money: take a weekend course and wake up Monday morning charging $600 for doula services.

305783_10151600128794905_1708696498_nOver the years I mentored many new doulas and was always happy to give of my time, experience and knowledge in helping them to set up their own practices. I brought a birth doula training (DONA International) to my own community as, although I was no longer practicing, I saw a need for doulas in this rural area. I recall a conversation over breakfast with two newer doulas who I had been mentoring and who were eager to get their practice established. They told me of a workshop they were signing up for with a (newer) organization called ProDoula that was going to  teach them how to make money as a doula and help them with their business model. My initial reaction was this: “What a racket! The only person making money is the person behind the concept of teaching doulas how to make money.” But what a brilliant scam…………make money off of the starving doulas you claim to want to help by convincing them that you have the secrets to making money.

I had been mentoring doulas on more important topics like professionalism, kindness, respect for fellow doulas (and other professionals), ethics and standards of practice but I also understood the business side of things and freely shared my advice on branding, websites, marketing/ promotion, media relations, etc.  In a few short months, the two doulas, under the spell of ProDoula, made decisions that severed our relationship and I predicted their demise in a few short years because this type of behaviour never, ever leads to success in the end.

Reading THIS ARTICLE posted on BuzzFeed last week about the ProDoula empire didn’t surprise me but what it did do is affirm my initial thoughts about this “cultish crew of snakeoil salespeople.” I thought it’s tagline: “ProDoula wants to revolutionize the touchy-feely doula profession — and make millions of dollars along the way. Who really benefits from the for-profit company’s goal to rebrand doula work from a fundamental right to a luxury service?” said it all until I read the whole article and well, the catchy headline just touched the surface. If you haven’t read the article, I would recommend it for the sheer entertainment of how cult-like, multi-level marketing schemes have even taken over the birthing world.

I decided to share some of the “highlights” of this article and provide my own input.

  • “….contentious tactics ProDoula is known for, such as the “12-hour contract” which means when a client goes beyond 12 hours, the doula gets paid extra for every additional hour.”  Really? Are you kidding me? It was a bonus when I would leave for a birth and see a newborn within 12 hours. This. Rarely. Happened. Especially for first time moms. Can you imagine the pressure of labouring and knowing your slow progressing labour may force you to take out a second mortgage or at the very least be costing you hundreds of dollars? Is this yet another ploy for ProDoula to make money? How about stress the heck out of a labouring woman causing her oxytocin levels to take a nose dive resulting in a stalled labour. Cha-ching! How many women would just opt for a cesarean because they couldn’t afford the doula fees any longer? This alone would have me running the other way as fast as possible if I was an expectant woman about to sign a contract with a doula. My advice to expectant women researching doula care: DO NOT SIGN ANYTHING with this stipulation. This completely defeats the whole purpose of doula care. 
  • “From the start, ProDoula targeted pragmatic doulas ill-disposed to what one woman called “all that woo, drum circle, doula heart stuff. “Right…because all that woo, drum circle, doula heart stuff is a bad thing? You know the slogan of DONA International “a doula for every woman?” This slogan wasn’t just about each woman having a doula, it is also about the fact that all types of women seek doula care and so we need all types of doulas. Imagine if ProDoula catered to ALL doulas. Never mind, that wouldn’t work.  The woo, drum circle, hippie types are likely too evolved to buy into ProDoula’s BS.
  • “In the words of one ProDoula: “client got an epidural, circumcised, formula fed, sleep trained? So what!!” I don’t know? So what? Oh, wait….sorry, another broad brush stroke that ALL doulas are anti-medical intervention and promote natural birth and parenting practices. Actually, my training focussed on keeping my own opinion out of the equation and supporting couples in having a positive birth and postpartum period however THEY defined it. 
  • “Members are banned if they don’t follow a long list of rules, such as if they write “Kumbaya, sister-hood, doula spirit posts” or talk “negatively about us as a group, or as individuals, in another forum.” Banned? Wow. That’s how you keep your power…silence your followers. A  common tactic in running a cult.
  • “Although ProDoula doesn’t advocate lying, newcomers are told by other group members that they can charge as much as doulas with decades of experience, even if that means faking it until they make it. (“I used to tell people that our most popular service was overnights before I’d ever sold a single overnight shift,” one woman advised.) Doulas discuss their “target markets” (think upper-middle-class professionals instead of teen mothers) and how to attract them with expensively designed, search engine–optimized websites. There are even threads about brushing off new doulas seeking mentorship: “My future competition isn’t going to pick my brain for details on practical and business advice, have access to my clients, and have me pave the way for free,” one doula wrote.” A business model based on deceit plus working with women as vulnerable as labouring and birthing women and new mothers? There’s a recipe for disaster not to mention potential birth trauma. Can you imagine interviewing a doula to be by your side during your labour and birth and they are blatantly lying to you? Oh, sorry, not lying per se, but being completely dishonest!
  • “ProDoulas are advised to “warm chat” prospective clients, a tried-and-true Mary Kay tactic for talking to strangers. New doulas are encouraged to invest in the services ProDoula sells, along with website design (through Patterson’s husband’s company) and social media consulting (through Patterson’s daughter).” Long before I got to this point in the article, it reeked of a multi-level marketing company. Seriously…..come on, doulas….you really buy into this? You do not see the scam here?
  • Virginia doula Liz Pelletier said she was “very hard-core ProDoula” in the beginning. Patterson’s motivational messaging drew her in. “I really felt like she just absolutely loved doulas and wanted what was best for us, each and every one of us,” Pelletier said. “It was like being brainwashed.” On Facebook, ProDoulas swap tips with each other on how to afford the company’s services, suggesting others take out loans, charge credit cards, and even sell plasma. Pelletier said she spent her $2,000 tax return on what she now calls “worthless crap”…… I was one of the first doulas in Canada to have a professional website, logo, etc. I learned right from the beginning that if you wanted to be taken seriously and treated like a professional, you needed to present yourself as such. And as anyone who is self-employed knows, you have to work your butt off. I offered this advice among so many other things for FREE……….18 years ago. Encouraging doulas to be professional, dress accordingly, take this work seriously and create a career out of it is not new. I was happy to share my experience and tips with new doulas venturing out because I wanted them to succeed and I wanted them to represent this service in a professional manner. By doing so, it benefits all of us. Many of us have been mentoring doulas for years, we just didn’t slap on a fancy name and screw our fellow doulas out of thousands of dollars.
  • “Another doula, on the West Coast, estimated that she spent more than $20,000 building her agency based on ProDoula’s advice. She said at least $12,000 went straight to ProDoula and Patterson’s husband’s web design company. ‘Every penny was a waste,’ said the doula, who didn’t want to be named because she’s still trying to regrow her business. ‘I feel like I wasted two years of my life.’ Shameful. That is all.
  • ‘A lot of these women have felt very marginalized in the past, so when they hear someone saying what they want to hear, they go a little crazy,’ said Devon Clement, a former ProDoula trainer. ‘I’ve seen so many women whose lives were positively changed by ProDoula that I can’t speak negatively of it as an organization. But Randy wants it to be everyone’s religion.’ Kansas doula Sunny Schaffer described ProDoula as ‘literally like a church.’ When she recently broke ties with the organization, it was like leaving an abusive relationship, she said.  ‘You have to be all in, or they get rid of you because they don’t want any dissent,’ Schaffer said.  Wow. That’s powerful stuff. And scary, too.
  • Patterson said critics like Schaffer chose to leave ProDoula and that she doesn’t see herself as occupying a position of power. But she doesn’t seem to mind playing the messiah. During one recorded business consult with a doula, she admitted she didn’t think all of her clients paid $250 an hour just for business advice. “They want to fucking be inspired,” she said on the recording, obtained by BuzzFeed News. “They’re depressed. They’re dark. They’re quiet in their lives and they want someone to breathe life into them. And I come and do that.” Must be very difficult navigating the world with such a gargantuan ego. But, I have to say, ProDoula did reap over a million dollars last year preying on naive, “depressed” doulas. How pathetic and despicable.

Perhaps, though, amidst the consistent f-bombs Ms. Patterson dropped throughout the interview and the portrayal of an edgy, messiah of sorts, it was this comment that flew out of her mouth that really sealed my impression of her:

“The message previously was: Work yourself out of a job,” Patterson said. “My message is: “Well, that’s fucking retarded.”

I wonder if Ms. Patterson felt powerful saying that statement. Was the use of this vile word an act of rebellion? I mean, everybody knows that this word only demonstrates one’s ignorance, lack of empathy and class. You see Ms. Patterson’s use of this word and her need to drop an f-bomb here and there to illustrate the persona she has created is a blatant reflection of her character and who she really is at her core. She represents everything that disgusts me and I am grateful that I left the doula world long before it was tarnished by ProDoula tactics.

Cut throat business practices cannot exist harmoniously with doula work. This article saddens me because of the loss of what the doula profession used to be and what it stood for. However, I will not give ProDoula that much credit. I know that DONA International and other organizations will continue to strive towards upholding the original focus of doula care. I trust that the integrity of doula care will prevail long after the ProDoula empire collapses under the weight of their collective egos and narcissism.

Author’s Note: For any brand new doula reading this who would like some free advice on how to get her business started without going into debt doing so, feel free to send me an email to julie@juliekeon.com

Dec 16 16

Afterglow

by julie

It all started with one mother’s plea for wisdom from her tribe as to how we manage to stay connected with our partners when our lives can be unimaginably stressful and sleep deprivation can wreak havoc on our moods and hormones. She wanted to know how we can avoid becoming a statistic.

Her questions were received with love and support and soon after, she posted a screen shot of a hotel reservation and announced she was on her way out for the night with her husband for “operation save this marriage and have sex for once.” I suggested we (her tribe) support her mission by having our own sexual romps with our significant others that night. Before I knew it, many were on board and #doitforkelly and #HFHSolidarity were born. **HFH is Hope for HIE     

I wrote about it HERE and how easy it is for all of us to slip into ruts and let such an important part of our relationships slide. I off-handedly mentioned that mind-blowing, satisfying sex can happen in a mere 8.5 minutes and so not having the time could not be used as an excuse. Within a day, one mom challenged the rest of us to #8.5minsaday for one week. Yes….you read that correctly. We all committed to having sex with our partners once a day for seven days. Whether you did it in 8.5 minutes or not was completely up to you.

For some mothers, this was not feasible due to sick kids, in-laws from out of town, partners away on business and frankly, some mothers were not up for the challenge recognizing that this wasn’t for them. This challenge would not be suitable for couples who had been in an extremely long dry spell or who had a lot of built up emotional anguish between them. Baby steps might be required in these instances to warm up to the idea of a week long daily sex fest. On the outside, it may have appeared to be a watered down, poor attempt at intimacy. You can’t just get naked and jump in the sack and expect miracles.

intimacy_desire_hands

For those of us who have been walking this road for any length of time, it goes without saying, that intimacy is about connecting and that happens in all kinds of ways. Of course, sex is not the be-all-end-all of intimacy. If it were, most of us wouldn’t have made it through the first year intact. As a result of our situations, we have all had to get very creative and rely on a thousand other ways to be intimate with our partners when sex wasn’t an option. Although my husband and I have a healthy, vibrant sex life, the challenge just made us focus on one another even more. Like all other couples, it is very easy to put that part of your relationship on the backburner and let everything else take precedence including Netflix and texting friends.

For those of us who recognized this as a way to jazz things up in our day to day with our partners, the challenge ended up being so much more than daily sexual escapades. For most of us, it was a natural mood enhancer and many reported an increase in random acts of kindness. Amazing what a daily release of oxytocin and serotonin will do to your willingness to participate in your relationship even more than usual. Because it was a challenge, it was a sure thing and each morning, couples awoke knowing that they could look forward to more of the same thing that evening.

Here are some of the positives that came out of the challenge:

  • an increase in racy texts
  • a buzz of excitement interrupted the daily grind
  • led to deeper, more meaningful conversation about things other than ‘to do’ lists and complaints
  • renewed a sense of passion
  • ignited memories of “the good old days” when couples first met
  • led to other intimate moments of time set aside to just be together talking
  • the realization that carving out time for one another is a necessity….even if it is only ten minutes alone in the pantry 🙂
  • for some…….this commitment to daily intimacy resulted in a whole new level of healing and awareness.
  • most agreed that this challenge ended up being much more than just great sex
  • One of the biggest positives to come out of the challenge was the realization that there really are #noexcuses.

So, where do we go from here? Hopefully, participants do not slip back into their old, familiar patterns and habits. One mom said that she realizes that when she and her partner are grumpy with each other and sex has been sparce, that they can set aside ten minutes for a “quickie” just to reconnect until they are able to spend more quality time with one another. Another mom is planning to create a sex jar so that at the start of each month, she and her husband can choose a few “activities” and then make time for them within the month.

When I was a breastfeeding counsellor, there was a technique that we would sometimes use to treat stubborn breastfeeding problems. It was called the 24 hour cure and involved tucking the mama and babe into bed for 24 hours. They would wear as little clothing as possible and would spend that time snuggling skin-to-skin, resting and bonding. The mom would only get up to use the bathroom and visitors were not allowed unless they were bringing the mother food or drink or any items of comfort she required.

This little challenge reminded me of that. Sometimes, as a couple, we need to force ourselves away from the daily, ongoing distractions, peel away the layers (physical and emotional) and climb into a warm bed and rest skin-to-skin with our lover. Doing so for 24 hours would be impractical and impossible for any parent but perhaps a commitment to three days in a row of a little time together, might be the key to lasting intimacy. It would be a monthly guarantee that if nothing else, there would be three days in a row of sex and closeness. Of course, anything beyond that is great and recommended but if life seems overwhelming, having this one little commitment to look forward to could make a world of difference and lead to even more intimacy. And, for those who are not there yet, commit to setting aside three days in a row per month where you spend even 30 minutes of uninterrupted time with one another away from devices, other people and your kids. If all you can manage is to sit together and hold hands, that is better than not doing it at all.

We each have to determine what works for our relationship and our particular situations. If anything, this challenge shone light on a topic that is sometimes taboo in the special needs parenting world. Now let’s keep that light shining.

Are you in?

#diditforKelly #doitinsolidarity #8.5minsaday #HFHsolidarity #noexcuses