What I Would Tell You

For many years, after surpassing several life expectancy predictions, we coasted as there was an unfamiliar sense of predictability, stability and consistency to our days and nights. We had tremendous supports and a pot of funding that allowed us to staff daytime and nighttime care so we could both work and sleep and carve out some semblance of a normal life after over a decade of chaos.

These were the sweet years. We felt that we had made it. There was a rhythm to our days and we could cautiously put down the battle gear, exhale and feel the sunshine on our faces. We had emerged from the dark, dense forest of the first decade+ and into a clearing. Still, I knew this was temporary and that these “sweet years” would inevitably come to an end.

It was beyond our wildest imaginings (and parents like us have extraordinary imaginations!) that Meredith would reach the age of adulthood and so we never gave it much thought. Since she was 2 years old, seasoned physicians warned us that we shouldn’t expect to have her for a long time. These life expectancies, although shattering, also wrapped us in a cocoon of denial that we would ever be faced with a future that terrified us. And so we existed in this “in-between” space of holding our breath each time there was a detour, no matter how brief, from these predictable days and wondering if this was it AND feeling an unsettling sense of relief that we would not likely be faced with impossible decisions that come with adulthood.

When Meredith was 8 years old, a well-meaning doctor urged us to think about having another child so as to “fill the void” when Meredith was gone. By that time, we had already come to the difficult and permanent decision to not have anymore children. His urging and lack of sensitivity in the profound loss of having this decision made for us was akin to pulling the scab off of a wound that would never heal. This deep knowing that we would most likely outlive our only child left us bereft in grief that remains, to this day, tucked away however easily accessible whenever we are reminded of this profound loss.

As Meredith’s 18^th birthday loomed on the horizon, I was cognizant that this pocket of stability was drawing to a close and we were entering a new landscape. Eight months before her 18^th birthday, I celebrated my 50^th birthday. My daughter and I were each marking milestones that came with a lot of weight. Aging is a privilege that many do not get to experience. I have created funeral ceremonies for far too many infants, children and young adults whose deaths were often tragic and seemingly untimely (in the sense that we all presume we will live to old age). There is gratitude and reverence that comes with celebrating each of Meredith’s birthdays knowing that we are on borrowed time. And yet, as we age, we become acutely aware of the increase of risk of illness and disability. There are ramifications to our aging.

It has become more difficult to secure caregivers who are willing to learn the detailed and intricate care that Meredith requires. Once weeks of training are complete, there are no guarantees that they will be around for long term. This pandemic taught us rather cruelly and abruptly that it takes just one moving part to falter and we are in crisis within days.

We have been blessed with incredible, consistent and committed coordinators, therapists and healthcare team. They reassured us over and over that the transition would be gradual and smooth and we would not be deserted and lost in this new landscape. With all of the planning and steps, the year between her 18^th and 19^th birthdays was tough to put it mildly. The countless changes and the discontinuation of services and supports that were governed by the people who knew Meredith best, left us feeling like fledgling parents except that we weren’t and instead there was a sense of abandonment. You see, this system was not set up for people like Meredith. Even the adult services coordinator sheepishly admitted that the forms we needed to complete were not suitable for our situation. There wasn’t a category that we fit into and the multiple choices offered for each question fell short. “None of the Above” would have been my answer if it was an option. The pediatric coordinator, who was handing over our file, warned her that they better start planning ahead as there were two other complex children coming up the line.

We were jammed in an ever-widening gap of a system that was not set up for adults like Meredith. Slipping through the cracks would have been easier however that was not the case. The gap was massive and I envisioned us scrambling to hang on to the edge so as not to fall into the abyss of a system that was not prepared for the complexities of a person who was never expected to live this long. And so, we started over…..new therapists, new doctors, new everything and frankly it was terrifying and I questioned our ability to navigate it all. Nothing had really changed for Meredith except the date. Once the calendar read December 5^th 2020, everything changed.

Looking back, I realize that I hunkered down in the comforting yet unhelpful space of denial as we enjoyed those sweet years. We felt that after all we had endured in the first 12 years, we deserved to have some reprieve from having to worry about a future that hadn’t unfolded. I mean, that is how I got this far without being consumed by anxiety. I chose to plan ahead to some degree however I refused to have fearful thoughts take root.

I naively reasoned that we would manage however it unfolded. There wasn’t much point expending limited energy into a future that did not exist and furthermore, I was in denial that adulthood was even going to be a reality. With all of the health issues cropping up with Meredith, I felt that we were in a race against time and that her time would be up before we ever reached this milestone. I remained with my feet firmly planted in the present and when thoughts of a future that I dreaded surfaced, I would shoo them away. Still, they were in the background, sitting poised like vultures in a tree, waiting for time to pass.

I have pondered the term “life expectancy” for about fourteen years since we learned, after a sudden close call, that Meredith’s life would be significantly decreased due to her medical fragility. It was something the doctors had known since her birth two years earlier but did not express to us.

They recognized that there was only so much new parents should have to come to terms with initially. It was just five days into our adventure of parenting that we learned Meredith had experienced a hypoxic event that caused a severe brain injury. Her official diagnosis, after an MRI, was HIE (hypoxic ischemic encephalopathy); most likely leading to life-limiting cerebral palsy. I had a sense, right from birth, that I wasn’t going to have a long time with this child.

In those early days, this awareness interfered with my ability to bond with her. It was a primal response to protect my heart from shattering should I get close to her only to ultimately lose her. This shifted at some point when I decided to jump in with both feet and love her fully and fiercely regardless of the final outcome.

We stumbled our way through those first two years shocked, bleary-eye, profoundly sleep deprived and emotionally wrecked. It was a test of resilience, strength and mostly, survival.  There was no manual, no crystal ball, no parenting classes…….just sheer determination and forcibly placing one weary foot in front of the other.

My memory fails me when I attempt to recall the intensity, complete madness and struggle of those first months that somehow turned into years. Details have had their edges softened by the gift of time and I am no longer haunted by the countless traumatic events that made up our beginning as parents.

And then, one August afternoon, when Meredith was almost two years old, she essentially stopped breathing. She gasped only five breaths per minute into her tiny lungs. This came on abruptly and unexpectedly. We called 911 and after being rushed to the closest ER, we were on our way to the Children’s Hospital of Eastern Ontario. It was then that we were told Meredith’s injured brain was impacting her respiratory system and these sudden events would continue. At some point, she may not regain her ability to breathe. It was after several of these events that a life expectancy of age 7 or 8 was predicted and we were referred to a new pediatric hospice in Ottawa called Roger Neilson House 

The knowledge that your child will only live within an approximate time frame is both a blessing and a curse. We were acutely aware that she could die at any moment and we watched her as though she were teetering on a narrow ridge between life and death. After one of the many close calls that occurred over the years, I would be hypersensitive to every movement, sound and behaviour she had but not in anticipation of another close call. It had more to do with a deep awareness that permeated my entire existence that life with her was going to be unpredictable. Death would be the inevitable outcome and since I didn’t know when it was coming, a close call would be a not-so-gentle reminder that her days were numbered. I remember studying her and taking mental snapshots of every detail of her physical body. There are copious amounts of photos and video clips in the days that followed a close call. It was a useless attempt at outsmarting death. If death were to come when we least expected it, at least we would have a surplus of up-to-date visual records of her.

The challenge of life expectancy is that you find yourself living in each moment with tremendous gratitude while being overwhelmed with guilt in the moments you feel like you just can’t go on. Each birthday is celebrated with a sense of accomplishment and a big “F-You” to death. There is joy in knowing you have made it another year which is quickly followed by the realization that you are one step closer to this beautiful life coming to a close.

Then a miraculous thing happened…….Meredith turned 7 and then 8 and we landed in what we lovingly refer to as the ‘bonus years’. This is a time when your brain must make sense of this new reality of when the race continues after the expected finish line. It was in this new territory, when she was around the age of 10, that doctors told us that she would live to be 15 although not likely past the age of 12. And so, we found ourselves shifting gears again and accepting this new fate placed upon our daughter.

And now, her next birthday is upon us. It is a major milestone as she celebrates her Sweet 16 on December 5th. It wasn’t in our wildest imaginings that Meredith would not only double her initial life expectancy but would surpass the second life expectancy placed upon her. We find ourselves in the land of ‘bonus years’ once again. Although we took these life expectancy predictions with a grain of salt, they still nestled into our psyches and cast a shadow over our lives. We got on with living for the most part, but the knowledge that we would outlive her played like a silent film reel in the background. It was always there but if we turned our back to it, it lost some of its power.

This time, we are facing a future that we never anticipated. Adulthood looms before us and although many would celebrate this, we feel some anticipatory anxiety in Meredith’s unexpected aging. As she grows older, so do we and with that comes a higher risk of facing our own heath challenges. Even though this was something we have always been aware of, the reality that Meredith could very well outlive us, has pushed its way to the front of the line where our fears reside. On October 19th, I was involved in a car accident that could have just as easily ended my life but didn’t. The perspective gained from that experience was both terrifying and invaluable.

People contemplate how one surpasses their life expectancy and Meredith’s longer-than-expected-life has often been credited to the exceptional care she has received and by the love we have given her. This may play some role in it however, I have seen too many children, who were loved and cared for beyond measure, die suddenly in their sleep or after contracting a simple cold virus complicating the health challenges they were already coping with. There are children who are taken off of life support who then surprise everyone by living for many more years. And there are the children who appear to be shutting down, death close at hand who months later, have stabilized; their parents forced to switch gears again to focus on living.

To be brutally honest and blunt: this whole notion of a life expectancy is a bit of a mind f*&k.

We have learned in subtle and sometimes harsh ways that none of us really know when our time is up. Of course there are signs that our end is near but by then, we have one foot across the threshold into the land of the dead and there is no turning back.

In the meantime, there is just one thing we can do; only one thing we have control over and that is to LIVE. Until that last breath leaves your lungs, you are alive. You may be actively dying however in the meantime you are still living. And that is how we will continue to move forward: celebrating LIFE with an awareness that death is always nearby. This is not morbid or dramatic, it is the reality for every living thing.

So, Happy 16th Birthday, Meredith! We have come a long way, baby, and my wish is that we continue to travel this path together with love, determination and hope for however long we have.

******Excerpted from Julie’s next book out this summer 2022*****

Who knew diapering could be such a nightmare? Parents of kids with extra needs, that’s who. Hell hath no fury, than a parent trying to find appropriate incontinence products for their growing child.

For many children with disabilities, incontinence is a lifelong issue. This is the case for our daughter and since her growth has been very slow and steady, we have been able to use regular diapers, like Pampers, for the last fifteen years. However, there comes a time when picking up diapers at a box store becomes a thing of the past. When our daughter outgrew the largest size of diapers available over the counter, we discovered that Pampers makes a size 7 which Amazon ships to us each month. But all good things must come to an end and Pampers does not make a size 8 diaper. A recent growth spurt forced us to begin exploring the next options. I was under the impression that this would be a straightforward process. It was not.

The adult incontinence product market is overwhelming, confusing and frankly, not designed for this in-between-stage. To begin my research, I called a local medical supply company and requested a couple of samples. All I needed to do was give them my daughter’s hip measurement. Easy peasy. A package was received within a couple of days and I knew immediately, that this was not going to be as simple as I had anticipated. I had a brief (pun intended) moment of panic when I compared my daughter’s present diaper to the small adult one.

It was not going to even come close to fitting. To ensure I was not making assumptions, I strapped that beast onto her which looked more like a diaper/ girdle/ bra contraption than a discreet undergarment. I knew that I was going to need more assistance.

I ditched my plan of figuring this out on my own and went straight to the experts……other parents who have had to find suitable products for their kids. The number of comments and the speed in which they were posted indicated that an easy solution was not to be had. It was clear that some products worked better for boys than girls and there were products that some parents raved about while others posted warnings. I read every single comment, asked questions and made a list of what I thought would be a good starting point.

It was clear that a trial run with potential products was in order. To do so, I was going to need samples. Since there was one product, in particular, that I thought could be THE ONE, I called the company that had sent me a couple of samples earlier but it wasn’t a product they carried. To save myself a wild goose chase, I called the makers of this product and after dialing the Canadian toll free number, I spoke with a nice woman in Washington. She was happy to help: “Yes, we do have a trial pack of products that we will happily ship for free but no, that particular item is not part of it. And no, we do not ship it as an individual sample.” Back to square one.

I went over my scribbled notes and narrowed it down to three products that came in x-small or small youth sizes. There were so many aspects to the products that needed consideration: the size, the fit (bulky or discreet) and tabs versus pulls ups. So many things to consider and at this stage of parenting, I am easily overwhelmed. These are the days I wish a real live Diaper Genie would appear to do all of the legwork and research and just point me in the right direction.

I am happy to report that there is a Diaper Genie by the name of Kelly. A couple of parents had recommended a Canadian company out of Ottawa,ON that would be able to assist me in navigating the world of incontinence products. I went to the website to find a phone number and discovered an ENTIRE section for kids with special needs and youth including an incredibly handy Parents’ Guide to Diapers and Underwear for Special Needs Children and Teens.I promptly printed off the chart and then called My Liberty.Life

Kelly answered the phone and listened to my rant about the incredibly frustrating task of finding proper incontinence products for this in-between-stage. She listened like a seasoned therapist, validating my irritation with the current incontinence market. She also, more importantly, assured me that we would find the best product for our daughter. After taking down a couple of measurements, Kelly wanted to know what we had been using, what we liked about our current product, whether or not we wanted tabs and more details about our daughter’s body type. This company not only provides hundreds of incontinence products for children/ youth and adults but they have mastered the diapering dilemma for parents like me. For anyone in Canada with incontinence issues, this company is your best starting point and probably your last. They have so much solid information on their website and really understand the challenges that go along with incontinence. Their service is GOLD STANDARD, personable and genuine. Unfortunately, at this time, they only ship within Canada but families in the USA and beyond can certainly benefit from the information they provide on their website.

There is a gap between the largest size of children’s diapers and the smallest size of adult incontinence products. Thankfully, some companies have recognized this and are starting to create youth sizes. Since Pampers/ Huggies, etc. have mastered the fit and absorbency of a child’s diaper, it would make far more sense for them to get on board and start making a couple of larger sizes to get kids like mine from this stage to the adult stage. The companies that design and manufacture adult incontinence products are taking on this task however a melding of the two would be ideal.

Until then, I am anxiously awaiting a shipment of samples from MyLiberty.Life. Stay tuned for Part 2 of the Diapering Dilemma as we test drive these samples and see which one comes out on top.

 

Excerpt from my pregnancy journal:
Sunday, October 19^th 2003 (34 weeks)
Good morning, baby of ours. We have spent the weekend focussed on you! On Friday I went to Ottawa and bought all of the supplies needed to paint and decorate the room, which will be yours when you eventually move from our bed to your own. When your dad came home Friday night we got busy taping the edges and then he painted the first coat. I wasn’t allowed to help out, as the fumes from the paint would not be good for you. I picked a pale green colour and will hang a white gauze curtain in the window. We are very excited to prepare the room for you. Yesterday, we went to a La Leche League garage sale and found a red, velvet sleeper with a Christmas tree on the front. Your dad thinks it is a little corny but I think you’ll be cute wearing it for your first Christmas. I also plan to get a little Santa hat to match. Forgive me!!!  I sent an email to your Aunt Lana last night describing yesterday’s events and so I have copied and pasted it below to save me writing it all out again:
“The LLL Garage Sale was a bit of a flop. Great if you already have kids. We did buy a red velvet sleeper with a Xmas tree on the front and also a white velvet sleeper for our winter baby as well as a couple of white terry sleepers. They were a buck each although we splurged on the red one ($4). Worked the bake sale and bought $10 worth of squares and homemade granola bars. Left there for Kiddie Town around 10am and thought it would be an easy task to go in, buy the stroller we wanted and head home. NOT!
They didn’t carry the stroller we wanted so we went to Sears. Ended up changing our minds there and bought a Graco jogger stroller (travel system). We strutted out of there like two pigs in shit. Look at us. We have a brand new stroller. We’re having a BABY! Tim was so proud…almost killed a couple of people but he looked very sweet pushing that thing. People moved out of his way and he thought that was neat not realizing that they likely knew he was an amateur and didn’t want to get hit. We get to the car and someone is waiting for our parking spot so we’re struggling trying to get it apart and then finally Tim has it all folded up and…………………………………………………………………
Bang! It won’t fit into my gd, Pontiac Sunfire-piece-of-shit-trunk!!! It is a big trunk but the opening to get things into it is small. So, we open it all back up and head back to Sears to exchange it…meanwhile it is hailing. Get there and decide on the original stroller we had our minds on and they’re out of stock. As we’re trying to decide, this guy comes along with a baby in the same car seat as the one we’re thinking of buying and he says, “It’s the best!” Apparently, he did research when they were buying their stroller/car seat and they settled on this one. He was an angel in disguise, I swear! We were sold but had to get a rain check. After the sales lady left, he says,” Go to Walmart. They’re cheaper there.” Remember now, Tim hasn’t slept yet and I have been awake since 3am. I also realize that I have eaten anything substantial except for a muffin at 8am and some squares and we’re hitting 1:30pm now. We decide to stop in at Britt’s in Bell’s Corners on our way to Walmart and get 10 of our cloth diapers as well as a nursing bra for me. Bought the leopard print one to match my Bravado underwear. Tim said he hadn’t seen leopard print since his days in Portage! I thought I looked pretty sexy! Then we went to Walmart and got the stroller. Had to leave the box there, as it wouldn’t fit in the GD trunk. We went to Eastside Marios for a late lunch and got home at 4:30pm……exhausted. I swear it is easier buying a car then a stroller. And, like with everything, everyone has an opinion. I had a hot bath and went to bed at 6pm and got up at 8pm to eat. Tim was asleep on the couch so I sent him to bed and I am heading there shortly. It is now 8:40pm. What a day!!!!! Tim will see if this stroller fits into the trunk tomorrow. If not, we’re basically screwed and will have to buy a different car. He got it all assembled when we got home and strutted around the living room with it like a Price Is Right model. When I came downstairs an hour ago, I walked into the livingroom and there it was. It made everything a little more real. We now own a stroller and car seat. Very weird.  Almost more ‘adult’ then owning a house. Tim says he feels very strange knowing that there will be a car seat base in his car from now on.  Anyway, that was our day in a nutshell! Must head to bed as Jen ________ could start labour anytime. Last night I got kicked in the right rib so hard that I gasped and I have felt bruised there ever since. Must have Tim’s big, strapping thighs…little bugger. ”
This morning, I awoke early and lay on the couch until 9am. I am fighting a bit of a cold and so plan to spend most of today lying on the couch. Your dad and I are heading out soon to get some white paint for your room, check out handrails for our treacherous staircase as well as buy a toolbox and garbage can. Your dad is really nesting these days. I am filling the freezer and he is getting the other things done like staining the kitchen table, cleaning up the shed, assembling your stroller, getting your room ready, etc. He is a wonderful man. If you are a boy, I hope that we raise you in a way that reflects the qualities of your dad. If you’re a girl, I hope that one day you find a partner who adores you and loves you like I feel your dad loves me.
We bought you your cloth diapers yesterday and I can’t wait to put them on you. You’ll look like a little lamb as they look like they’re made of wool. They’re soft and fleecy. We chose cloth diapers for many reasons. We wanted you to be most comfortable and to not put the chemicals that are in disposables against your beautiful, new skin. We wanted to try to reduce the risk of diaper rash. We are also very concerned about the environment and it seemed rather silly to contribute to the destruction of the earth when you will be left behind, after we are gone, to clean it up. You’re lucky to be born first as you get all of the new things. Your brother or sister will have to deal with used cloth diapers, a used stroller and car seat, etc. I don’t think he or she will notice the difference anyway!
At this moment, your dad is out “puttering” in the shed. Packing up the lawn furniture, cleaning out the back room and eventually staining the kitchen table. He took the stroller out to my car and it just fits in that trunk!! Bloody good thing, too. I am about to lie on the couch and rest as I am feeling rather rundown with this cold. I know that after today, I should start to get over it. Hope all is well in there! Love your mommy xoxox
Monday, October 22 2018 (Meredith is just weeks away from her 15th birthday)
If I could go back in time I would tell my pregnant self the following:
~ Those cloth diapers are so sweet but you’ll never get a chance to use them as the hospital NICU insists on disposables so they can monitor output. One day you will pass them along to another pregnant mom (your sister?) and your heart will break a little when you do. Your daughter will be diapered for the rest of her life and at this point you can estimate that you have contributed about 38, 325 diapers (and counting) to the landfill.
~ If you thought buying a stroller was tricky, wait until you have to buy that first wheelchair. You’ll have to ditch that sporty car for a van and will need two people to lift it into the back. You’ll carry that baby in your arms for over 8 years until she (yes, you have a girl!) gets too big and the wheelchair is a necessity. You will never use the car seat or stroller for another child as this baby you are carrying will be your only one. Your heart will break some more when you pass it on to your sister and see their baby using it the way you had imagined your baby would use it.
~ Your client, Jen, did go into labour and that was the last birth you attended as a doula before your own baby was born. You will see that baby (a girl) grow right before your eyes as due to unforeseen circumstances you will all end up living in the same small town. Each time you see her, you will be shocked at how much she differs from your own baby girl. Born just six weeks apart but travelling such different paths.
~ That rib that your baby kicked from the inside will heal but as the years pass, another rib will go out on a regular basis from the strain of holding and carrying a child with severe cerebral palsy. You will stay remarkably healthy considering the tremendous strain your body and mind are under for many years. It is one of the things you will be most proud of in the years to come.
~ Although you feel so loved by Tim, there will be times that your marriage goes through some rocky moments and you will wonder if you will lose that, too, among the many losses that will happen. Great news: you two will stick it out and discover that your love is so much more than you ever imagined. That will be one of many gifts that comes out of parenting this child. You will be celebrating 20 years of marriage in less than a year and that is worthy of a party, for sure!
~ Fifteen years from the time you wrote that journal entry in 2003, your future self will wish she had a chance to go back in time and tell you (her pregnant self) what she can expect. She will realize that warning her pregnant self of how sideways her mothering experience will be will only induce unnecessary anxiety. Why wreck such a happy time in your life when you anticipated the birth of a healthy baby? I don’t want to take that from you and besides, I already know how this will pan out.
~ If I could travel back in time and share one thing to the pregnant me, I would tell her to not be afraid and to look forward to the brilliant years ahead. They won’t be anything like you imagined. They will be so much more.
 

This is a story about love, grief and a cat.
We were like many couples who, in preparation of the possibility of parenthood, did a practise run by getting a pet together. Theoretically, if you can keep the animal alive and raise it well, you’re probably good to go when it comes to parenting. It’s like a trial period before you make the irreversible decision to have a baby together.
My husband, Tim, and I were still newlyweds when a career opportunity led us to the Ottawa area from Victoria. It was the winter of 2000 and we stayed with my sister and her husband for a few months until we moved into a damp, basement apartment out in the country in the late winter of 2001.

My sister’s cat gave birth to a litter of kittens in the weeks before our big move and we took the plunge and claimed two of them for ourselves. Tim chose a ginger kitten and named him Bill (as in Bill the Cat) and I chose a Maine Coon-type of kitten and named her Snaggle Puss after my neighbour’s cat in Victoria. They were the sweetest sibling pair and we loved them immensely.
Fast forward a few months and our little kittens grew into young cats. Tim taught Snaggle Puss how to fetch and Bill would spend all of his time lounging near us or on us. In March of 2003, we bought our first home and five weeks later, we discovered that by December we would be parents of a human. As my belly grew, our “fur babies” took interest and Bill spent a lot of time lounging across my belly feeling the movements of our baby.
Then Meredith was born and well, things didn’t go as planned. We were gone most of the time for the first three months as Meredith recovered at the children’s hospital. By the time we brought her home, in February of 2004, we were surviving moment by moment.

It was all we could handle because thinking any further ahead was too terrifying. Bill and Snaggle Puss observed the chaos and promptly made it clear that this screaming baby had to go. They couldn’t help but be stressed. It was an extremely stressful time. Our baby was medically fragile and severely irritable and no one was getting sleep. There was a lot of crying happening from all sides.
Bill expressed his disdain and anxiety at this new living situation by barfing. All. Of. The. Time. I would climb the stairs to fall into bed for a 3 hour chunk of sleep only to discover cat vomit on the bed with a perturbed looking feline standing beside it. His message was loud and clear and we were completely incapable of dealing with his demands. Our decision to let them go came swiftly out of sheer desperation. My Aunt Odel (also known as the Cat Whisperer) agreed to take them in and we felt happy knowing they were going to a good home.  Within the year, Snaggle Puss died from feline AIDS and Bill went to live with my cousin.
We got on with our new life.
A few months after letting our cats go, we moved again to be closer to our families. There was loss after loss in those early months. Our new baby required a tremendous amount of care and in order to make it all work, we let go over and over again~ our cats, our home, our expectations, our privacy, our dreams, our trust, our sense of order and calm, our control and we even came close to letting go of our marriage. That is one thing we held onto as though our lives depended on it.  When you are letting go of so much while in the middle of an emotional hurricane, there isn’t time or space to process all that is unfolding. You cope by being in a constant state of survival.
A new beginning in our new home in a new town was a turning point for us and eventually we created a new normal.

It wasn’t until two years ago that we decided it was time to have another pet. Tate the cat joined our family as a little stray kitten and we remarked how much he looked like our Snaggle Puss. We had toyed with the idea of getting a companion cat for him but never followed through.
Fast forward to two days ago.
I got a call from my Aunt Odel and she shared that my cousin and his wife were needing to find a home for Bill. My cousin’s wife was severely allergic to him which only worsened with a recent pregnancy and now a new baby was in the home. I said “Yes!!” we would take him.
Yesterday, she arrived with Bill in her arms and in the moment it took for her to walk through the door, fifteen years fell away as I laid eyes on him for the first time since those early postpartum months. Bill is now the ripe old age of 17 ½ years. The moment I saw him, I broke into tears. We looked at one another and there seemed to be recognition. He is older and weathered but then, so are we. It hasn’t been an easy fifteen years for us and I know that Bill was well loved and cared for in the home of my cousin. I am grateful that he remained in his care and that when it was time for my cousin to let him go, he decided to send him “home” to us. That has been the only comfort for him knowing that Bill is going back to where he started.

Bill is elderly and doesn’t have a lot of years left in him. He comes back to us at a time that we know that Meredith’s years are no longer in abundance. Her health will start to decline in the coming years due to complications of rapidly progressing scoliosis. These two, that shared space as babies, are now sharing space as they each travel the last years of their lives. If there was ever a story of life coming full circle, this is it.
It is the most unexpected occurrences that will gently nudge long buried emotions into the light. This cat’s presence has stirred old grief in me. I weep every time I look into his eyes. The last 24 hours have been highly emotional and he has been a patient, loving, wise feline to my emotions. I feel as though a time traveler plucked this living, breathing creature from our past and transported him to our present. It is an unexpected gift to have the opportunity to tend to old feelings around a time that was too painful to process.
Life can be incredibly serendipitous and the result can be magical. Bill is the epitome of a healing CATalyst.
Welcome home, Bill. We have missed you. The circle is complete.
 

One day, this life we live will cease to exist and the future we dread will come to pass.

One day, my arms will be empty. Arms that held you from birth until death. Every cell, every muscle, every tendon will recall the weight of you in my arms.

One day, I will no longer hear the sound of your wheelchair on the creaky hardwood floors nor the beeping of the feeding pump. The silence will be deafening.

One day, there will be no need for night nurses and caregivers and I will wait for the sound of the door to open but it never will.

One day, I will stubbornly have one foot in the land of the living and one foot in the land of the dead. I will refuse to let you go completely, because to do so might be the end of me.

One day, I will sit in an empty house listening to the sound of my breath and I will marvel that my body carries on even though I am dead inside.

One day, my beating heart will be the only indication that I am still alive.

One day, I will have to relearn how to be in a world that I left behind so long ago. I will return to it kicking and screaming as the world I have known for so long begins to fade into the past.

One day, I will be forced to relinquish my identity as your mother. I will always be your mother but not in this time and place. One day I will awkwardly answer the question, “Do you have kids?” by stumbling over my words before blurting out, “Yes, I once had a daughter.”

One day, hopefully many, many, many days from now, I will say a final goodbye to you, my darling Meredith.

One day, I will have no choice but to learn to live again.

 

~ Chapter 42 from “What I Would Tell You~ One Mother’s Adventure with Medical Fragility“

© 2017 Julie Keon

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

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.**

 

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.

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.