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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 16 16


by Julie Keon

It all started with one mother’s plea for wisdom from her tribe as to how we manage to stay connected with our partners when our lives can be unimaginably stressful and sleep deprivation can wreak havoc on our moods and hormones. She wanted to know how we can avoid becoming a statistic.
Her questions were received with love and support and soon after, she posted a screen shot of a hotel reservation and announced she was on her way out for the night with her husband for “operation save this marriage and have sex for once.” I suggested we (her tribe) support her mission by having our own sexual romps with our significant others that night. Before I knew it, many were on board and #doitforkelly and #HFHSolidarity were born. **HFH is Hope for HIE     
I wrote about it HERE and how easy it is for all of us to slip into ruts and let such an important part of our relationships slide. I off-handedly mentioned that mind-blowing, satisfying sex can happen in a mere 8.5 minutes and so not having the time could not be used as an excuse. Within a day, one mom challenged the rest of us to #8.5minsaday for one week. Yes….you read that correctly. We all committed to having sex with our partners once a day for seven days. Whether you did it in 8.5 minutes or not was completely up to you.

For some mothers, this was not feasible due to sick kids, in-laws from out of town, partners away on business and frankly, some mothers were not up for the challenge recognizing that this wasn’t for them. This challenge would not be suitable for couples who had been in an extremely long dry spell or who had a lot of built up emotional anguish between them. Baby steps might be required in these instances to warm up to the idea of a week long daily sex fest. On the outside, it may have appeared to be a watered down, poor attempt at intimacy. You can’t just get naked and jump in the sack and expect miracles.
For those of us who have been walking this road for any length of time, it goes without saying, that intimacy is about connecting and that happens in all kinds of ways. Of course, sex is not the be-all-end-all of intimacy. If it were, most of us wouldn’t have made it through the first year intact. As a result of our situations, we have all had to get very creative and rely on a thousand other ways to be intimate with our partners when sex wasn’t an option. Although my husband and I have a healthy, vibrant sex life, the challenge just made us focus on one another even more. Like all other couples, it is very easy to put that part of your relationship on the backburner and let everything else take precedence including Netflix and texting friends.
For those of us who recognized this as a way to jazz things up in our day to day with our partners, the challenge ended up being so much more than daily sexual escapades. For most of us, it was a natural mood enhancer and many reported an increase in random acts of kindness. Amazing what a daily release of oxytocin and serotonin will do to your willingness to participate in your relationship even more than usual. Because it was a challenge, it was a sure thing and each morning, couples awoke knowing that they could look forward to more of the same thing that evening.
Here are some of the positives that came out of the challenge:

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

So, where do we go from here? Hopefully, participants do not slip back into their old, familiar patterns and habits. One mom said that she realizes that when she and her partner are grumpy with each other and sex has been sparce, that they can set aside ten minutes for a “quickie” just to reconnect until they are able to spend more quality time with one another. Another mom is planning to create a sex jar so that at the start of each month, she and her husband can choose a few “activities” and then make time for them within the month.
When I was a breastfeeding counsellor, there was a technique that we would sometimes use to treat stubborn breastfeeding problems. It was called the 24 hour cure and involved tucking the mama and babe into bed for 24 hours. They would wear as little clothing as possible and would spend that time snuggling skin-to-skin, resting and bonding. The mom would only get up to use the bathroom and visitors were not allowed unless they were bringing the mother food or drink or any items of comfort she required.
This little challenge reminded me of that. Sometimes, as a couple, we need to force ourselves away from the daily, ongoing distractions, peel away the layers (physical and emotional) and climb into a warm bed and rest skin-to-skin with our lover. Doing so for 24 hours would be impractical and impossible for any parent but perhaps a commitment to three days in a row of a little time together, might be the key to lasting intimacy. It would be a monthly guarantee that if nothing else, there would be three days in a row of sex and closeness. Of course, anything beyond that is great and recommended but if life seems overwhelming, having this one little commitment to look forward to could make a world of difference and lead to even more intimacy. And, for those who are not there yet, commit to setting aside three days in a row per month where you spend even 30 minutes of uninterrupted time with one another away from devices, other people and your kids. If all you can manage is to sit together and hold hands, that is better than not doing it at all.
We each have to determine what works for our relationship and our particular situations. If anything, this challenge shone light on a topic that is sometimes taboo in the special needs parenting world. Now let’s keep that light shining.
Are you in?

#diditforKelly #doitinsolidarity #8.5minsaday #HFHsolidarity #noexcuses


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 7 16

Taking One For The Team

by Julie Keon
A topic that doesn’t come up as often as it should in our special needs community is the logistics involved in sustaining some sort of intimate connection with our partners. One brave mama (I’ll call her Kelly**) recently reached out to her online tribe pleading with us to please share our wisdom on keeping our relationships from succumbing to the stress and overwhelm of parenting a child with special needs and medical fragility. Her child hadn’t slept properly in months and she and her husband were feeling the strain in their lives and in their bedroom. Our sex life is often the first thing to hit the road when sleep deprivation and unrelenting stress take up residence in our relationship.

The moms who are in a similar place shared messages of empathy. They got it and heard her loud and clear. They knew all too well how utterly impossible it was to not only have the time to connect with their partner but to actually have the energy to put forth if and when time was available. There is nothing more frustrating then finding some alone time only to discover your body won’t co-operate with your intended desire. They, too, wanted to know how one keeps the spark alive when it seems virtually impossible.
Those of us who are a little further down the path and who have already experienced this degree of strain, reached out and gave our straight shooting advice. We agreed that making time for one another is as important as the tremendous care given to our children. Carving out even one hour/ week can change the tides in a relationship that is suffering. Many of the skills we have honed as parents of children with special needs can be applied to our relationships. Things like efficiency and efficacy, for example. It turns out that you can have satisfying, mind-blowing sex in 8.5 minutes. Who doesn’t have 8.5 minutes to devote to their relationship even once per week?

Photo by Erin Egan

Photo by Erin Egan

But I deeply understood the profound exhaustion and the place of darkness this mother had found herself in and I hoped she could hear our words even though our suggestions seemed so out of reach. One thing for certain, if you don’t make time for your significant other now, you’ll have to make time for the divorce that is a definite possibility if too much times passes with disconnection. Creativity is key and mustering the courage to just do it no matter how much time has passed and how awkward you feel at first. Trust me: buried beneath those yoga pants and that t-shirt splattered with stomach content is a wild beast that desperately needs to be laid.

You can imagine my joy when, yesterday afternoon, Kelly posted a screen shot of a reservation for a hotel in her city and announced that “project save this marriage and have sex for once” was underway. Her announcement was received with virtual hoots and hollers and our mama tribe sent words of encouragement and tips to make sure she had an awesome evening with her husband. I shared the following:

Let’s all have sex tonight with our significant others in solidarity! I’ll be sending earth shattering orgasmic thoughts your way!                  Pro tip: Have sex before dinner so you can crash early.”

And with that, couples all over North America took to their bedrooms with a mission to support our sister. As things heated up these words were whispered throughout the land:“We’re doing this for Kelly.” My husband was more than happy to take one for the team with me. Amidst the online giggles, hashtags were created: #diditforkelly and #HFHsolidarity and “doinitforKelly” (I could imagine this mama quickly posting as things got underway). Another mom posted: “I’m in……I’ll #doitforkelly once I have a shower after my workout.”

This is the essence of support. One mother’s brave step to reconnect with her spouse leads to a sex fest across North America. How many of us awoke today smiling and revitalized? It doesn’t stop there, though. One poster shared that she and her partner are away from one another until the 16th. There will be a new hashtag on the 16th (#doitforClara) where we will gather in solidarity once again and support our sister in her quest to get things done.

My husband and I have figured things out along the way and make our marriage and our sex life a priority. I can reflect and remember how it was in those early days. Sometimes it is hard to find the time, energy and desire for our own needs but if we are doing “it” in solidarity, sisters get shit done. #noexcuses #HFHSolidarity #doitforkelly

“I say get it while you can, yeah. Honey, get it while you can. Ya, get it while you can. Don’t you turn your back on love, no, no, no.” ~Janis Joplin

**Names and identifying details have been changed to protect the privacy of individuals.

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 12 16

I Am You

by Julie Keon

We walk a similar path and although I am a few steps ahead or even a few steps behind, I am you and you are me. I write it all down as I am inspired to do so and I have even published a book and yet I am still “just a mom” like you.
You might read my words and assume I have it all together. These days, for the most part, I do have it together yet the first ten years are never far from my memory. I kinda sorta have it together but do not be fooled by a professional head shot on the back cover of my book.
You are me 12 years, 10 years, 7 years ago. There was a time when I didn’t sleep and our daughter was so unstable that I wasn’t sure if I could keep her alive with the specialized g-tube formula and all of the love in the world. There was that time that I tore into a doctor who had the audacity to question my authority on a child that perplexed everyone. And there was that other time that I would roll my eyes listening to other mothers complain about their neuro-typical child’s head cold and how exhausted they were from losing a night of sleep.
A year after releasing my book to the world, I pick it up occasionally and read my words as though they are being given to me as a gift from myself. Gaining unimaginable wisdom and writing a book does not a guru make. I falter along this path just as much as all of you. It is the reason why I vow to never refer to my readers as “Dear Ones” or some other condescending term that insinuates I am somehow above you.
Recently, at a retreat in Texas, a mom offered a session called “You Are Enough.” She shared that she felt uneasy about the fact that “Julie Keon” was going to be present and she immediately started to question whether or not she was “qualified” to give a session. It’s funny, because as she was presenting (and doing a fine job of it!), I was thinking to myself, “Oh man…….I should have planned my session differently. These mamas might think I am some sort of weirdo showing up with my rituals and unrealistic optimism about grieving.” It turns out that my session was well received and I had nothing to worry about. The point of this story, though, is that we all come to this path of parenting with our own histories, experiences, personalities, disappointments, failures and triumphs.
This morning, I was flipping through my book for some sections to share with a group of parents I am presenting to this evening. Ironically, my own words jumped out at me as a much needed reminder. I wrote the book and I still need to tap into my self-care and thrival skills as I walk along into the future of the blessed unknown.

“Other thrival skills include seeking out whoever can give you relief, guidance and support: a therapist, a body worker (chiropractor, massage therapist, etc.), a personal trainer, a spiritual guide. You will need to attune to your body if you want to stay well for your child.”

Not one of us is an expert on how to do this. The best we can hope for is to learn from our experience and share our tried and true tricks of the ‘trade’ with those who are just beginning or with those who are further along but have been isolated in some way. We must always assume that, no matter how “together” another parent appears, they do not walk this path unscathed. I am you and you are me.


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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