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Jun 28 17

Farewell to Dr. H

by Julie Keon

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

Jan 16 17

In Defense of the DOULA

by Julie Keon

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

Dec 8 16

All I Want for Christmas (or Hanukkah or Solstice or……)

by Julie Keon

Whether you celebrate Christmas, Hanukkah or the Winter Solstice (or another of the over 30 holidays celebrated between November and January), gift giving and receiving is a part of this time of year. If you know or love a parent/ caregiver of a child with special needs/ medical fragility, you may wonder what kind of gift they would most appreciate. I have come up with my own top ten list of gift ideas plus one bonus gift idea. This list can come in handy for Christmas, birthdays, Mother’s Day or any other holiday where gifts might be given or perhaps you can just give a gift for no reason at
1) SLEEP: How divine it would be if there were a pill to ingest that would provide the same benefits as 8 hours of sleep. The inventor of such a remedy would definitely be in the running for the Nobel Peace prize or even Sainthood. Yes, I know there are actual sleeping pills but the problem for many parents like me is not an inability to fall asleep. The problem is that we are not able to sleep due to round the clock care giving or lack of night nursing. Until this magic pill is invented, why not figure out a way to give your friend or loved one a few hours of sleep. Take some time to be trained in the care of the child and then offer her 2 or more hours of solid, uninterrupted sleep. There is nothing like a chunk of consistent zzzzzzzzzzzz’s to refresh and rejuvenate a tired parent.
2) MEALS: Believe it or not, bringing a ready-made dinner to a family who is dealing with above-normal drama and busy-ness of life, is more valuable than gold (or frankincense or myrrh). Imagine calling a parent of a child with special needs/ medical fragility and offering to bring over dinner. If you do wish to give this gift, be sure to find out any dietary preferences and food sensitivities so that everyone can enjoy. You could even give a coupon that entitles the recipient to one dinner per week for a month.
3) SELF-CARE: One thing parents like me must do is practice self-care so that we are better able to care for our child (ren). This is often tricky because free time is scarce as are the funds needed to splurge on oneself. Giving the gift of a massage, a pedicure, a facial or even paying for an appointment with a Naturopath, Homeopath or a Therapist, will be gratefully accepted. Arranging for childcare while she/ he is attending the appointment will give you bonus points.
4) MY BOOK: What I Would Tell You~ One Mother’s Adventure with Medical Fragility was written for anyone who gives care whether that be to a loved one or to clients. It is written from my perspective as a mother caring for a child with medical fragility but has touched all who have read it. It is jam packed with hard earned words of wisdom that can be applied to life in general. Readers have described this book in the following ways: Universal, Validating, Inspiring, Comforting, Healing, Essential, Authentic, Enlightening, Powerful. If YOU haven’t read my book, it is time. Throw this one on your list and consider giving it as a gift to friends, family and professional who work with families like ours.

5) BOOZE: People are often at a loss for what to give Meredith for her birthday or Christmas. I half-jokingly respond with, “When in doubt, a bottle of wine for the parents is always appreciated.” Seriously, though, sometimes having a glass of wine with a dear friend or your partner gives that much needed self-induced relaxation/mental break from your life. Disclaimer: I am not promoting the use of alcohol and/or drugs to numb or deny emotions. I am merely suggesting that sometimes a glass (or 2) of a full-bodied red or a crisp white can be a nice end to a rough day. Gift cards to shops where fine wines and other alcoholic beverages are sold would also be appreciated.

6) TRAVEL COMPANION: In our situation, we cannot travel anywhere alone with Meredith. There must always be another adult sitting beside her in the back while another adult drives. For some parents/ caregivers, this is not an issue but that does not mean doctor’s appointments and outings are easy. Offering to assist your friend or family member on trips to the hospital, clinics or other appointments will give them a sense of relief and will take some of the responsibility off of them. They will be able to grab a bite to eat, use the washroom and focus on information being shared at the appointment if they have an extra set of hands and eyes to help out.
7) TIME: As a friend or family member, you may feel helpless much of the time depending on the complexities of the child. It may be impossible for you to even begin to learn how to care for the child in a way that would allow the mother or father to leave the house or go and rest. If you are willing, your time can be a wonderful gift to a parent like me. Offer to hang out with the child for short periods so that the mother/ father can take an uninterrupted shower or bath for example or make a phone call to a friend or work on a personal project that brings her/ him joy. If it is the holidays and company is coming, giving the gift of your time to provide the parent with an extra set of hands for cleaning, preparing food or helping with the care of the children, can be invaluable to them.
8) GIFT CARDS: Retail therapy can be just that: therapeutic. It is challenging for some of us to get out and shop for ourselves and sometimes living in a rural area prevents one from getting to the city to shop. Giving gift cards for places like The Body Shop, Lush, Bath & Body Works, Chapters, Amazon or clothing stores will give the mother, for example, the option of shopping online as well as treating her to something for herself. There is nothing like a new pair of jeans, shoes or good quality under eye concealer to lift the spirit. Cold hard cash is good, too, but will often go to paying bills or groceries and so gift cards force the receiver to spend money on themselves. With that said, you may need to take things a step further and physically accompany the recipient to the store where the gift card will be spent or sit with them at their computer to witness them placing their order. Billions of dollars worth of long forgotten gift cards are tucked away in drawers all across North America. Make sure the recipient of this gift actually uses it within a reasonable amount of time.

9) RELAXATION: Although I am not one to talk, incorporating some types of relaxation into our lives can have huge benefits. Giving a gift of a beginner’s yoga DVD with a mat or a collection of guided visualizations for stress reduction or good quality essential oils can all be gentle reminders of how crucial it is to carve out even ten minutes per day for ourselves specifically for the purpose of finding some peace and quiet. We may not have the luxury of travelling to Bora Bora but we can close our eyes and drift off to our “Happy Place” via guided visualization/ meditation.

10) LAUGHTER: There is nothing like a good, side splitting fit of laughter to unleash a dose of oxytocin into the bloodstream and to relieve one of tension and stress. Maybe you are that one person that has a knack to crack up your caregiver friend/ family member. Your inexpensive yet invaluable gift, would be to steal him/her away for an hour or more to just be silly and laugh. This can include going to a movie that you know is bound to bring on the giggles or simply hanging out together and reminiscing about events in your life that make you smile. I have a few dear friends, two sisters and a brother who know how to make me break down into laughter. This might be one of the most priceless gifts you can give.

BONUS GIFT IDEA: Look into retreats and conferences that your loved one could benefit from and do the leg work and pay their way to attend one of these events. For families who have children affected with HIE, Hope for HIE is an organization whose mission statement is as follows: “To foster hope in families affected by Hypoxic Ischemic Encephalopathy (HIE) through awareness, education and support.” They also organize mother retreats across the U.S.A. each year. You can send that special mother in your life to one of four locations for an affordable getaway where she will be surrounded with love and care by mothers just like herself. Contact Hope for HIE to find out more.
These are just a few thoughts and ideas that come to mind as we anticipate the holidays. I would love to hear some gift ideas that you have loved and appreciated as a mother, father or caregiver of a child with special needs. Leave them in the comments below! And Happy Hanukkah, Joyful Solstice, Merry Christmas and Happy Holidays to all of you! May your days be merry and bright!
**This post was originally written and published December 2011. It’s a good one and so worth sharing again with appropriate updates!

Dec 5 16

Our Thoughts on Thirteen

by Julie Keon

As we celebrate Meredith’s birthday today, I include a guest post by my husband and Meredith’s dad, Tim. We both have our own thoughts to share about our girl turning 13.
Julie’s Thoughts:
It seems impossible that our Meredith is 13 years old today. I don’t recall ever imagining what this day would be like because I learned to just live in the moment when it came to imaginings about life and death. I have been reflecting on this last decade plus three years and I recall various stages and upheavals that went along with certain birthdays. In the beginning, we used to have gigantic birthday parties~ 40 guests, gourmet food, elaborate cakes, touching speeches. My chiropractor’s receptionist commented with a laugh that “you don’t have big bashes like that for children.” I saved her the horror of my thoughts and refrained from speaking them aloud:

“You do if your kid might not live to see their next birthday.”

When Meredith’s doctors had the ‘life expectancy talk’ with us around age 2 we continued to approach birthdays with great joy and celebration but we also recognized a new feeling; one of hesitation and dread as each passing year brought us closer to that age that she was not expected to surpass. But, age 8 came and went, and we were a little smug as we got ready for birthday #9. Life also stabilized for the first time by age 9 and we could settle into a little normalcy after almost a decade of intense care giving, constant stress, crushing sleep deprivation and unrelenting worry.
And then she was 10~ double digits was deserving of a big party. The last couple of birthdays have been celebrated with less fanfare but only because they felt like a regular celebration. This year, unexpectedly, has felt very heavy and dark. The days leading up to this birthday have been tough and grief has come knocking on the door more than once without any warning. This time last year, two children in our tribe died within a week of one another and this year, as we approached the anniversaries of these deaths, two more children in our tribe have died. And here we are, approaching adolescence and that feeling of “moving up in the line” is at the forefront of our thoughts.
I recall a contractor from a few years ago who came to install a soaker tub for Meredith. In a failed attempt to shed positivity on our situation, he informed me of how lucky we were as we’d never have to worry about teen pregnancy or drug addiction.  Yes, the bonuses of having a child with a severe brain injury. Lucky us.
And lately, when I would tell people Meredith was turning 13 in early December, they’d reply with, “Oh……a teenager in the house,” which was accompanied by an all-knowing look. One that says, “You’re in trouble now” as though our daughter will now be asking to go out on dates and will begin to show signs of rebellion. I find it hard to smile and say, “Yep, we’re in trouble now” when really what I want to say is, “Actually, things will remain pretty much the same except now Meredith is older and bigger.” But I don’t say that. I change the subject instead.
Turning 13 means we are waiting for the bigger signs of puberty to kick in and with that an anticipated host of other issues. We are moving into unchartered territory and it feels as though we are starting all over. These last four years have been a reprieve, a break from the intensity of the first decade but I think we both feel, deep in our bones, that things are about to change again.
And yet, as we celebrated this milestone birthday with Meredith’s grandparents and one aunt yesterday, there was tremendous joy and hope as we look ahead to her 14th year. We watched a compilation video of the first ten years and I was hit with the reality of all we have been through. And I am reminded of one of my favourite quotes by Ralph Waldo Emerson: “What lies behind us and what lies before us are tiny matters compared to what lies within us.”
Happy birthday, Meredith Ocea!

Photo by Tim Graham (

Photo by Tim Graham (

Tim’s Thoughts:

We have a teenager.

I am really not sure why this blows my mind. It is not like it has come out of the blue. It has been happening for, well, 13 years now. Still, I find myself utterly unprepared and kind of surprised that we are here. To be perfectly honest, I never thought we would make it. I have not always been as open about this sort of stuff as I maybe should have, but the time has come to be brutally honest with myself and everyone else. We were told that Meredith would likely only make it to the age of 7 or 8 and if we were lucky she may make it to a little past 10. She has proven to be an incredibly strong little girl and continues to be healthy and is showing no signs of slowing down.

That being said, we cannot fool ourselves into thinking that the end is not coming. Truth is, once puberty hits, things will likely start going pear shaped and the decline in her health will likely accelerate. You see, despite the level of care, love, prayers and well wishes, nothing changes the fact that she is going to have a short life. I am not okay with this. I will never be okay with this. It is impossible for me to explain how much I am not okay with this. I have witnessed first hand, far too often, the devastation that losing a child brings. Knowing that this awaits us, haunts me every single day.

So this birthday is bittersweet. I am proud that we have made it this far and I am also terrified to know that we are running out of time. Knowing that our time with Meredith is not guaranteed, we never take a single moment for granted. Our lives are full of challenges, that’s true, but it is also full of celebrations. Every smile, every laugh every time she tracks something with her eyes or sits in her chair without losing it, brings great joy to all of us. We have even celebrated bowel movements on more than one occasion. I know it sounds cheesy but being Meredith’s father has been an absolute privilege that I do not take for granted. I know that not everyone gets to experience parenthood and am very grateful that I do.

And so, I raise my glass, to you, Meredith, my sweet little bug. Thank you for fighting on this day 13 years ago and every day since.  You have forced me to become a better person. You have made me feel a level of pride, pain, happiness and love that is exponentially deeper than I had ever thought possible. You amaze me every single day with your strength, determination and capacity for love. The world is a better place because you are in it. It has been a wild ride so far and I am not ready for it to end.

May 8 16

Celebrating All Mothers

by Julie Keon

20160507_062513On Mother’s Day, most of us will think of our mothers and hopefully be able to share a special meal with them, give them a card or even flowers or a gift. We will shower them with praise for all that they have done for us throughout the past year and throughout our lives and if you are one of the lucky ones, you will be celebrated as well.
If you no longer have your mother with you or perhaps, you never knew your mother, this special day can be a challenging one to get through. Although I celebrate all mothers on this day, I wish to dedicate this post to the “other” mothers that may not fit into our traditional definition of a mother. And I dedicate this post to those mothers who often get forgotten in the Hallmark sentiments, You tube videos and the television commercials.
I celebrate:

  •  The mothers who, due to infertility or life circumstances, will never realize their dream of mothering but who have a heart worthy of this role.
  • The mothers who never had a chance to know their child because of miscarriage or of perinatal loss in the first hours and days of life.
  • The mothers who had their plans abruptly changed when they gave birth to a child with special needs and a mothering journey that was not at all what they had expected.
  • The mothers who had to make the difficult decision to place their child up for adoption due to the reality or their belief that they would not be fit to mother the child they gave birth to.
  • The mothers who adopted babies and children and gave them love and security when their biological parents could not.
  • The mothers who mother their grandchildren because the biological mothers are unable to do so.
  • The mothers who helped other women become mothers through surrogacy.
  • The mothers who unnaturally outlived their child and who celebrate their memory on this day.
  • The mothers who temporarily mothered the lost and forgotten children for a few days, months and even years through fostering.
  • The stepmothers who love and raise the children who are not of their body but whom they love just the same with all of the challenges and hardships of step parenting.

May all of you feel acknowledged and honoured on this day. To you, I raise my glass.
Original article published in the Whitewater Cobden Sun newspaper May 4th 2011 edition

May 5 16

I Left My Tears in Texas

by Julie Keon

This past weekend I had the privilege of travelling from Ottawa, Ontario to Fredericksburg, Texas to gather with just under 50 mothers of children affected by HIE (hypoxic ischemic encephalopathy). I was contacted in the fall, by Hope for HIE, the premier resource for families whose children have been diagnosed with HIE, to present at the annual Mega Mom Retreat. I had been eagerly anticipating this adventure for months. Many of the moms attending, had been following this blog for a few years and I felt like I knew them well. To meet them in person was very exciting to me.
The interesting thing about gathering with women who have walked a similar path is that there is an automatic connection and recognition. We “know” each other and speak openly and casually about seizures, feeding tubes, trachs and irritability. Depression and anxiety has visited most of us at some point on this journey and we share deeply and receive the words of our sisters with respect and without judgement. For me, as an older mom, compared to the majority of mothers in attendance, I see myself in their tired faces. They are me just a few short years ago. I wonder if they, too, look at my tired face and wonder what their future will hold.
I have had a couple of days to reflect on the 48 hours I spent in Texas and I still struggle with how to put into words, the incredible impact it had on me in a relatively short amount of time. After a journey that included many unexpected hiccups along the way, we (my two Canadian travel companions and our Houston, Texas driver and fellow mom) finally arrived at our destination late Friday night and we were greeted by the mothers who are leaders in the Hope for HIE community. I have a moment etched in my mind of seeing Betsy Pilon walking towards me; a woman I have known online for some time, and how we hugged and how I touched her face as though she might not be real. Turns out she was 🙂 And then Annie, Shawna and Becky came towards me and I felt this sense of completion. I “know” them from the many intimate exchanges on various Facebook pages but to see them standing there as familiar to me as friends back home in Ontario, was both natural and surreal.
I didn’t have any expectations of our time together. My main goal was to present well and have a positive impact in the session I had created especially for my HIE tribe. I decided to offer a session called “From Grief to Gratitude” and I chose to present it in a woman’s circle format. I had never lead a circle of this size and was so impressed at how it all unfolded. I knew I was taking a risk with both the topic and the format but I also knew, from many years of experience, that if the mothers trusted me to hold space for them, that this could be a positive, if not, transformative couple of hours together. Due to the nature of our circle, it would be disrespectful to disclose what occurred specifically. Suffice it to say that through ritual, we tapped into our grief and both spoke our grief and witnessed the grief of our sister-mothers. It was an honour to share this space with these brave women who are so much more than enough!
We collected our “proverbial” tears in a bowl and then Betsy, who was assigned as the caretaker of our tears, went outside and dumped the salty water into the Texan ground to be further processed.
As the facilitator of this circle and as a Celebrant, I naturally take a position of caretaker to all who participate and yet I also allowed my grief to dislodge from its hiding places and be expressed as I listened to the deep sorrows of mothers who oftentimes cope with far more than they can bear. Grief is interesting in that it often shows up unannounced and can be triggered by the most unexpected things. Just before my session started, I walked into the meeting room and heard the familiar tune of “Somewhere Over the Rainbow” by Israel Kamakawiwo’ole playing in the background. My eyes instantly filled with tears as just a week before I had led a funeral for a little boy who died from a undiagnosed neuro-muscular degenerative disease. This song was played during his Celebration of Life ceremony. I walked towards, Becky, who immediately saw my tears and gave me a hug. How ironic that as I prepared to talk about grief, it paid me a visit without warning.
Although, we left our grief-related tears in a flower bed in Texas, we also shed great big, juicy tears of joy. There was so much hilarity and silliness in this group that I venture to believe that the aftermath of so much laughter to the point of tears was equally if not more healing than our tears shed in grief. Having what seemed like unlimited, uninterrupted time, allowed us to bring down our survival mode by a few notches. We could exhale and engage in the moment not worrying about what tube feed needed to be started and what medication was due. We only had ourselves to look after and everywhere we turned there was a mother from our tribe ready to hug us and sit and chat for a while. What a beautiful gift we gave to one another by our presence at this retreat.
These closing words from my “Grief to Gratitude” session say it all:

Community. Somewhere, there are people to whom we can speak with passion without having the words catch in our throats. Somewhere a circle of hands will open to receive us, eyes will light up as we enter and voices will celebrate with us whenever we come into our own power. Community means strength that joins our strength to do the work that needs to be done. Arms to hold us when we falter. A circle of healing. A circle of friends. Some place where we can be free. Blessed Be. ~by Starhawk



Feb 29 16

My Life After the Death of My Son

by Julie Keon

I give this space to Mindy Pedersen McHardy, mother to Connor, who died on February 29th 2012. This is the first anniversary since his death and Mindy wanted to share some of her thoughts about what life has been like since. ~ Julie

Imagine over a 3 month period, nearly every second night, your child lets out a cry, struggles to find an adult who is rushing to meet him, while another is turning up the oxygen and reaching for the phone. You pick up your child who is coughing, is a shade of blue/grey and is in obvious respiratory distress. He then turns cold as ice and stops breathing. The entire time you say to him: “It’s going to be okay. Mommy is her. It will all be okay” when in reality, you have no idea what this is, why it is happening or if he will survive this time around.
Today marks the first anniversary of my son, Connor’s, death – he died 4 years ago on February 29, 2012 (the rarest day of the year). Described as Complex Cardiac, my son had differences in nearly every system of his body. He was autistic, developmentally delayed, non-verbal, and medically fragile and technologically dependent (nasogastric feeding tube, then gastrostomy tube, oxygen, and continuous positive airway pressure or otherwise known as CPAP). There was no unifying diagnosis or syndrome for Connor’s differences though it was strongly believed to be genetic. My son’s medical journey was a mystery and we relied heavily on the health professionals both in the hospital and in the community to ensure Connor lived his best life in spite of his differences for however long that would be.
What have things been like since my only son died? In short, after Connor died I longed for my busy life back~ a life where I was exhausted beyond belief but where every moment mattered and was filled to capacity with life and Connor. I wouldn’t say my purpose was gone when he died. Although I loved following Connor’s lead and being his mother, I didn’t do it out of obligation. I did notice after his death, the time I had on my hands and the control I could regain over my own life~ a control once snuffed out by the complexity of my son’s medical needs and the requirement to be more than a mom.
Still, the habits of nearly 8 years are hard to break and the silence in my house was truly deafening. The absence of the Leapad or the Backyardigans , the hum of “the bus depot”(our nickname for the obnoxiously loud oxygen concentrator) or being awakened by imagined alarms that, not too long ago, were a constant reality; all reminders of what was. Daily calls for meds or supplies, paperwork to submit, calls from doctors and nurses asking how Connor was and how our family was coping all stopped abruptly once Connor died. What surprised me was how deeply I felt that loss as well.
I did not return to work. My fibromyalgia reared its ugly head and I struggled to find a balance and manage things. All that doctors could tell me was that I was constantly in fight or flight mode and that my life was so stressful that I shouldn’t expect an instant return to health. Of course I was flared up, it had accumulated over 8 years and who knew how long it would take to regain a balance.
We welcomed a baby girl in the summer of 2014. She was born healthy without the entourage of support (nurses, feeding tubes etc.) I had become so accustomed to. From a care perspective, I was taken aback by what being a mother was all about this time around. In some ways, Addison reminds me of Connor. I see him in her eyes and in certain expressions but she has her own personality. I feel sad knowing that she won’t get to know her big brother the same way we did yet I am so happy we get to know her and she gets to show us what life will be all about with her.
My experience since Connor died was not the one described in the mega text on five stages. Misunderstanding these as neat packages of emotions you will go through is misleading and gives the impression of full recovery.

(Julie’s note: These stages were originally applied to DYING not GRIEVING which has led to tremendous unnecessary confusion for those who are grieving)

My personal believe is that grief is not linear. I didn’t move from one emotion to the next; healing with each passing moment. It is also incorrect to assume that the first year is the worst and after that you are back in the world operating at full capacity. In fact, it is more reasonable to consider grief as something you carry; something that never completely goes away.
What do we do after a significant loss? Whether we consciously do so or not, we redefine ourselves and our lives. It will never be the same and that’s OK. How things change is different for everybody and there is no right or wrong way to grieve or to live after the death of a loved one, but especially the death of your child. You can’t go around grief you can only go through it with those along beside you who care.


Here are some things I have learned since Connor died:
My husband and I grieved differently. Not only is that okay but it is normal. I am grateful we gave each other the space to work through our own processes while still being there for the other person in the ways we could (like going to the pub for dinner together). The realization that my method of dealing with things was not only ineffective for my husband but actually made things worse for him, helped me to understand when we were “on different pages”. Both of us in the same story, grieving and feeling an intense loss which for my husband had no words and at times was greater than my own.
Creating space for healing. I turned to yoga and meditation to help me process the past 8 years of intense caregiving and the death of our son. I believe that the body stores emotions and no better place than on a Kundalini yoga mat to explore these emotions and let them go. Yoga, breath work, meditation and mindfulness were all tools I collected along the way that have helped me be calm, take time for myself and heal. Reinventing who I am and rediscovering a life lived in the present moment with love, peace and joy. This is a life I never could have lived without meeting and knowing Connor.
There is no time limit on grief. Don’t allow anyone to put time restraints on your grieving. I will not go through this in the same way you did when your friend, spouse, parent or child died. All deaths are equally tragic with a different set of circumstances that will define your experience. All of them are a different ball of yarn to unravel and patch back together. The length of time this takes is irrelevant.
The things people say – are for them; to make THEM feel better about how YOU are doing. I understand that their intentions are good and maybe they just don’t know what to say and blunder. I have learned to shrug it off. Some of the things people have said (and believe me there have been some doozies) led others to advise me to drop them from my life. Instead I adjusted my expectations of them. Through forgiveness, I allowed myself to feel gratitude for “their way,” even if it wasn’t at all what I needed. One of the worst mistake people make is to assume they know what the grieving person needs and what they should or shouldn’t be doing. Remember there are no “shoulds.” As a supportive friend or family member, just act as you always have and reach out when you haven’t heard from them. Above all, ask them what they need. Be prepared that they may have no answer or say they need nothing but don’t apply that to everything – a coffee drop off, baked goods, food will be welcomed though it may never be explicitly asked for. Most importantly, don’t leave it to the grieving person to contact you when they feel up to it. I found it hard to ask for companionship. All it took was a few refusals for me to feel like I shouldn’t be asking for someone to sit around on the couch and keep me company.
Tears are good. Allow yourself time to sit with these tears and become comfortable with their presence. You alone will develop your ability and system of dealing with this when it happens. Those who understand – those who really get it -are out there but it is also within you to heal. So whether you choose a support group, personal yoga practice, skydiving or nothing at all, that is your choice and nothing there is no wrong way so long as it feels right for you. Give yourself permission to create your own process. Keep close those who get it and be okay with saying, “Not right now” to those who don’t; keeping gratitude in your heart and mind. Have gratitude for the day, the fact that a friend reached out, that you had a good sleep or in my case, gratitude that I had any time at all with my greatest teacher – my son.
Connor’s life helped me to heal my own insecurities. He taught me I am good enough just as I am, to not to be afraid to speak my truth and that it is okay to say “No.” It is in his honour that I share his story as a volunteer speaker, family adviser and child health advocate. That is what his life and death did for me: it gave me the space to reflect on my life thus far and make changes to live fully in the present moment.
This post is dedicated to my only son, Connor McHardy born on World Autism Awareness Day (April 2) and died on World Rare Disease Day (February 29)~ a little man whose statement couldn’t have been louder – Mommy is still listening Connor.
Click HERE to watch a video about Connor’s journey.

Jan 18 16

What I Would Tell You Flashback

by Julie Keon

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born on December 5, 2003. After an abrupt lack of oxygen at birth she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.
I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.
I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s b&w Meredith 088Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband. I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.
If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.
I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.
I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.
I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.
I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.
I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents.
Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.
I would tell you that you will know far too much about the human anatomy, neurology, gastroenterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell youMeredith 136 to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.
I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to share that your child has gained weight. because weight gain is a struggle with our children.
I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.
I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.
I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.
I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.
I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.
I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey. I would tell you that you will recognize her because she is you, from many years ago. You will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.
Meredith-B-105But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.
I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.
Written June 29 2011 by Julie Keon
copyright © 2016
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Nov 27 15

The Moments That Define Us

by Julie Keon

The last almost twelve years is a blur of inhalations and exhalations, of periods of memory loss and of tens of thousands of moments that flicker through my mind like one of those ViewMaster toys from my childhood. I can sit quietly and access moments as though flicking through a ViewMaster reel…tiny frames of moments that were lived yet seem so far away that I wonder if they really did happen afterall. If it weren’t for the thousands of photographs taken over the years, I suspect the majority of our lives parenting Meredith would be forever lost in the abyss of mind altering exhaustion and unrelenting stress.
Sometimes, my husband and I will remember something out of the blue and will share it with one another. It is as though we have uncovered a long buried treasure. These little episodes of memory recall surface without warning and we are always shocked at how the details spill out once the memory is triggered. We will both try to fill in the blanks and sometimes we nod in agreement and other times, we wonder how our perception of one particular experience can differ so vastly. Of all of the events that will remain unearthed and of all of the events that work their way to the surface like a piece of glass embedded in your heel, there are a handful that stand out and that illustrate the most defining moments of this parenting path. The night we met the Walker family is one of those moments.
In the fall of 2009, we were preparing to bring Meredith to the Children’s Hospital of Eastern Ontario (CHEO) for hip surgery as her doctor could see from x-rays that her hips would soon start to dislocate if we didn’t intervene. We knew that this would be a straightforward surgery but all surgery carries risks especially for our medically complex children. I was very stressed in those days and meticulously planned every detail. We would be living away from home for at least two weeks and after a brief stay at CHEO we would be moved to Rogers House (pediatric palliative care home) which would provide transitional care for our little family before bringing Meredith home. At that time, we were still holding Meredith fifteen hours a day and I couldn’t fathom how we would do this with most of her body casted with her legs splayed out resembling a frog.
IMG_3631The surgery went well and we moved into a room shared with another family. Meredith was loaded with medications to help with pain and to keep her calm as the last thing we wanted was for her to fight the fact that she was on her back in a full hip spika cast (both legs up to rib cage). IMG_3664We settled into our room and by evening Tim was heading out for the night to sleep while I did the first shift. The family next to us had a similar arrangement and the mother left around the same time. Not long after, the father of the child in the next bed popped his head around the curtain and said, “Sounds like you have a similar model to us.” You see, Meredith and their son were making their usual noises and I had suspected our roommate was a lot like Meredith. It turned out their son was in hospital to get a feeding tube; a surgery that Meredith had in 2004 at just six weeks of age. Their son, Griffin, had already been through this hip surgery two years prior and so we were able to exchange tips with one another about what to expect and what improvements we might see. It was clear that Griffin’s dad, Dan, had a healthy sense of dry humour and we connected very quickly.
The next morning, Griffin’s dad wheeled him over to Meredith’s bedside so they could see one another. Up until this point, Meredith had never met another child even remotely like her. They looked at each other as well as they were able to and in that moment things changed for us. This little boy and his family represented far more than a chance meeting of a similar family. These things would be revealed in time.
IMG_3655As it turned out, they were heading to Rogers House as well for transitional care. A few days after Meredith’s surgery, we celebrated her 6th birthday at Rogers House. When I talk about defining moments I will tell you that one of the most heart melting of these was when on her birthday, there was a knock on our door and in rolled Griffin (with the help of his mama, Jen) bringing birthday flowers to our girl.

As I reflect on this moment six years later almost to the day, I cannot put my finger on what exactly changed for us but I suspect it was very simple. We discovered that we were not alone in this parenting adventure. At this point, social media was not like it is today and we were very, very isolated in our experience.

Before long, we made plans to get together once our kids were healed up from their surgery. Dan and Jen (Griffin’s mama) also had a two and a half year old daughter. In march of 2010, they made the 100km journey from their home to ours for lunch and to celebrate Copy (2) of Copy of Griffin's Visit 002Griffin’s birthday. He was just three months younger than Meredith.  I have never felt more regular than I did that day walking to the park with our new friends and our kids. For once since Meredith’s birth, I felt like we belonged. We went to the park and hauled our kids out of their wheelchairs and down the slides and there was lots of laughter and a sense of normalcy which we hadn’t felt in a very long time.

During this visit, Dan and Jen attempted to recruit us into the parent support group that had started at Rogers House. This was a monthly meeting for parents of children with medical fragility/ life-limiting illnesses and they felt that I, especially, could benefit from this. In those days I was sleeping rarely and found myself on the brink of burnout on a very regular basis. Dan was the primary caregiver to Griffin while Jen worked outside of the home. Dan urged me to give it a try. I attended the following month and very quickly knew that I had found my tribe.

Over the years, we got together when we were able and Jen and Dan came to our home for Meredith’s birthday party each year. Eventually, our visits had become few and far between because neither Griffin nor Meredith travelled well. Dan and Jen also added another child to the mix and so things got more complicated as time went on. But over the years, seeing Meredith with her friend, Griffin, even briefly, brought more joy to our lives than pretty much anything has.

Dec 029

This past spring, Griffin’s parents were given a devastating prognosis due to complications of scoliosis and Griffin was given six months to live. About a month ago, things took a turn for the worse, and Jen and Dan pulled Griffin from school knowing that the end was near. On November 23rd at 5pm, Griffin died at home surrounded by his parents and grandmother. He was eleven years old.

Like Meredith, his traumatic birth outcome changed the course of the life his parents had dreamed for him. The eleven years that he lived proved to be challenging and certainly not without suffering at times. His parents loved him fully and were dedicated to giving him the best quality of life that could be provided. My heart broke in the days leading up to his death. It broke for his parents and all of the people who know and love them. It broke with the knowledge that one of the most influential people in our daughter’s life would no longer be a part of it. One could argue that their time together was brief but duration of time spent together does not reduce its meaning. On some level, I think they recognized themselves in each other.

Griffin gifted our family with connection and a sense of belonging. As a result of their meeting, we were brought into a tribe of parents that share a similar experience and this has broadened our support system and moved us out of isolation. Griffin was Meredith’s only friend who was “like” her and since she doesn’t attend school, he really was her only friend that she spent any time with. When we first met the Walkers, I never imagined that six years later, we would be preparing to gather tomorrow to celebrate Griffin’s life. I will be forever grateful that Dan popped his head around the curtain that night in November of 2009 and introduced us to a whole new world that we had yet to become a part of.
I will miss you, Griffin. Thank you for all that you brought to our family. You will never be forgotten.

Oct 9 15

Kitten Smitten

by Julie Keon

It all started a couple of months ago when a pathetic-looking, stray kitten was found under my van. He was in rough shape and in obvious need of nourishment, love and a good once over by a Veterinarian.
The unfortunate reality is we are not pet owners. In the nineteen years that my husband and I have been together, we have owned a total of two cats (a brother and sister) who came together and in the end, left together. They were good pets but not fond of our screaming, unpredictable new baby and so after leaving many clear signs that they were not happy with the new addition to our family, we had to let them go.
Over the years, many people enthusiastically told us how “wonderful” a pet would be for Meredith. They would say things like, “I’ve read that children with cerebral palsy do really well with dogs” or “Wouldn’t it be so nice for Meredith to have a cat?” Yes, I suppose it would be but for most of the last twelve years, the thought of putting any more energy into giving care to another living being or thing, overwhelmed me and we just didn’t entertain the idea for more than about three seconds. We didn’t even have a plant in the house. I was serious about my caregiving tank being pretty much maxed out.
But the last couple of years have been a little less draining and I have been able to work more out of the home. My husband has always secretly wanted a pet but knew that it was a sensitive topic to broach.
So, this little kitten shows up and we try to find the owners but he isn’t claimed. The weather was rainy and windy so we provided shelter, food and water for him and I did what any responsible potential pet owner would do; I made an appointment with the Vet. As cute as he was, he wasn’t coming into our house with those manky eyes and dripping nose. I was actually warming up to the idea, though, and was feeling excited about introducing a kitten to Meredith. An hour before the appointment, our little stray disappeared, never to be seen again. Surprisingly, I felt a little twinge in my heart when he didn’t return.
Fast forward to last week when our friends posted a photo of a little stray kitten that had found its way to their doorstep. They were having no luck in finding the owners but hadn’t decided whether or not they wished to add to their pet family. After checking in with them and confirming that he was extremely affectionate, I offered our home if he wasn’t claimed. Five days ago, we became the proud human parents to a five month old male kitten. This is Tate:
To say I have fallen head over heels in love with this furry, sweet animal, would be grossly understated. I love him because he has taken to Meredith as though he was specially trained as a therapy cat just for her and then hand delivered to us. I am so incredibly amazed at how intuitive and caring he is towards our girl and she is equally smitten with him. When I am holding Meredith in my arms, he lies beside us and then reaches his paw up and places it on her arm. I am not kidding. It is remarkable. Her naps are more settled this week since Tate lies across her legs and she can feel his warmth and beating heart against her. Oh, and that purring…….just makes her smile as soon as he starts. They are a beautiful match and I am grateful they, somehow, found their way to one another.
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Sadly, we learned after Tate arrived that one of Meredith’s caregivers is severely allergic to cats and so now that he has settled in so well, she has unfortunately had to give her notice. She is sad to have to let go of Meredith but feels the joy right along with us that Meredith gets to experience what every child dreams of experiencing and that is the love of her own pet.