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.
Over 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 firstname.lastname@example.org
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
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 all.
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!
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?
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.
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.
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!
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.
**This blog post was written for Hope for HIE and was originally published on their website on Oct. 6 2016**
I have been trotting on this path long enough to know that guilt will suck the life force out of you faster than anything. Keeping this in mind, I tend not to spend time in a pit of guilt when it comes to our beautifully complex daughter. However, every so often, there is one question that still finds its way to my conscious. It cements itself there until I go through the same logical conversation with myself as I have done for years to soothe the worry, regret, fear and yes, guilt that accompanies it. Out of nowhere, I am plagued with this:
DID WE DO ENOUGH FOR HER???
We are thirteen years into this and still, although very rarely now, I wonder, “Did we do enough for her?”
I am not talking about her medical or practical care. I am confident and secure in the care we have given her and know that without it, she wouldn’t be alive today. I am talking more about the things that I see online that people have tried and have had success with. I am talking about elaborate therapies that could have changed the course of her life. I read about the great lengths parents have gone to in order for their child to receive specialized therapies; travelling across the county or even across the world for intensive therapies away from their family and homes. New parents write about their child’s diagnosis as though they received a complimentary medical degree at the time that their child acquired their brain injury. The online world has made my shortcomings glaringly apparent as I read how parents share all of the details of their child’s diagnosis. There are levels of HIE? Ask me what our daughter’s level is and I couldn’t tell you. All that is etched in my mind are the words: “Hypoxic Ischemic Encephalopathy resulting in severe, life-limiting cerebral palsy.” The day Hypoxic Ischemic Encephalopathy rolled off my tongue was a big day for me!
In the beginning of our parenting experience, social media did not exist as it does now so I combed the library at the children’s hospital only to find outdated books about raising your child with cerebral palsy. The illustrations were of kids that looked happy enough tossing a football around from their wheelchair with their school pals. I thought to myself: “This isn’t so bad.”
Then I found a dusty book in a secondhand store called, “What To Do About Your Brain Injured Child” (1974 edition). I thought I had struck gold and was determined to do everything in my power for this story to have a happy ending. I imagined reading it cover to cover and then applying my new knowledge with Meredith. I imagined the neurologist’s face when one day she WALKED into his office (thanks to the therapies I had researched and applied). That fantasy was obliterated when reality slammed into it like a freight train. How was I going to read this book and get my honourary neurology degree when I had to stop and start feeds round the clock every 1.5 hours plus deal with pumping breastmilk every three hours? How was I to do the hours of therapy each day when we had to hold our new baby 15 hours/ day? Then there was the retching episodes, seizures, baths, dressing changes, medications, doctor’s appointments, severe lack of sleep and well, it became clear, very quickly, that I was not going to be reading that book anytime soon.
The great thing was there was no shortage of well meaning friends and family doing “research” for us and sending scientific papers on all kinds of things we could do to “fix” our daughter. As the ideas for therapies and even some magical cures rolled in, I felt my resilience weaken as I tried to comprehend how we could logistically and financially give her the best shot at improving her status. At one point, a kind Nurse Practitioner drove us to Ottawa (120km away) to check out a hyperbaric oxygen tank. Traveling any distance with Meredith was nothing short of a nightmare but we were willing to investigate anything that might help. This therapy would have involved lying in a claustrophobic tube with Meredith in my arms for an hour at a time. She choked and retched constantly and she needed to move the way her disorganized brain demanded her to. There was no way this therapy would be an option (not to mention the thousands of dollars we would need to come up with to pay for it).
Then it was onto Conductive Education where we were gently told that it probably wasn’t going to be do-able for our severely affected daughter. Throughout all of this we were giving therapies in our
home and receiving regular visits from an OT and a Physiotherapist as well as seating and communication experts. Through the years we tried conventional therapies along with many non-conventional modalities: chiropractic, massage therapy, craniosacral therapy, osteopathy, naturopathy, homeopathy, functional medicine, Snowdrop Therapy, essential oils and we even stretched ourselves out of our comfort zone by trying things like holy water from Mount St. Patrick, energy work, prayer circles from a distance and soul retrieval (not even kidding!).
It wasn’t until we decided to try out the Snowdrop Therapy out of the UK that the we had our reality handed back to us on a silver platter. The kind and knowledgeable neurologist who designed this therapy reviewed Meredith’s MRI and assessed the countless videos and questionnaires we prepared. He concluded that it was very unlikely these therapies would do a whole lot. He wasn’t dismal but more realistic yet he offered a bit of hope saying, “It never hurts to try.” And so we paid the hundreds of dollars and received the therapy program laid out for Meredith. We were diligent; performing the tasks every single day, 4x/ day for weeks which turned into months. There was a teeny tiny bit of progress and to us that made it all worth it. Eventually, we recognized that she had plateaued and the reality that our girl was likely going to stay comfortably at the 0-3 month level of development became blatantly obvious.
It is normal for new parents to scour the world for some magical therapy that will improve their child’s abilities and life. I think of it as one of many “developmental” stages on parenting a child with special needs/ medical fragility. We must be cautious that we do not forget about living and enjoying our child just the way they are in our quest to change the outcome. There will be things that might work and there may be many things that do not. Sometimes you will have energy and motivation to spend hours each day applying specialized therapies. Other times you will be too exhausted to have a shower and the therapies won’t be high on your list of priorities. Does this make you a bad, lazy parent? Not in my books, it doesn’t. But how can you not feel as though you are coming up short when everyone else seems to be handling this remarkably well and not only that, their kids have beaten the odds. Maybe if we did more, researched more, held them more, held them less, flew to Romania for two years for therapy, bought that goat and milked it to make our own formula, spent the hundreds of dollars on that essential oil then things would be different.
This is what I have realized…………we did the very best we could with what we had and what we were capable of doing at any given time. Someone else might have had great success in Romania, but we know this option was not feasible for us. We wish things would have been different; maybe if her brain was just a little less affected, we could have flown to another country to seek specialized therapies or I could have crammed my body and hers into a hyperbaric oxygen tank. But that wasn’t our reality (and still isn’t). To be honest, even if we could have afforded it and managed to get there, I am not sure we would have. At some point, we needed to face the reality that no matter what, our daughter would always be severely affected. Does that mean we gave up on her? Absolutely not. It just meant that we recognized our limitations and made a conscious decision to stop comparing our situation and experience to what everyone else was going through. We chose to be secure with our decisions and with the fact that we were doing everything possible to help her along to the degree that worked for her and for us. Honestly, there was a big part of us that wanted to simply spend every moment enjoying her knowing that our time with her was, like everything else, very limited. It didn’t make sense to put her through 40 hours/ week of intensive therapy only to have very little improvement. For some families, this brings tremendous results but for families like ours, not so much.
Eventually, you come to accept that no amount of prayer, magical chanting, love, determination and belief will change the outcome or beat the odds. It is an illusion that if we just love enough, believe enough, pray enough and do enough, that our child will achieve all of the things the doctors said they never would. If this were the case, I guarantee, our daughter would be training for the Olympics. Believing that our children’s outcome is a direct result of the level of love, care, therapy and magic we infused into their lives can leave us shattered and guilt ridden if the outcome is not how we had imagined it to be. On the flip side, if our child has soared above all expectations and we tell others that with enough love and determination, their child, too, can beat the odds, we (unintentionally) fertilize their feelings of guilt.
So how do you get from the place of feeling like you aren’t doing enough to a place of accepting that you are doing enough? It’s a process. It’s learning to build on your child’s strengths as opposed to trying to “fix” them or make them “normal.” It comes from making the shift from putting your focus on the negative (what your child can’t do) to the positive (what your child can do), examining your own feelings, challenging your beliefs, saying “NO” to guilt, trusting that you ARE doing the best you can with what you have in this moment. And that is enough. Your child is enough. You are enough. With all that we deal with……….enough is enough.
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.
On 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.
- 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