miscarriage

The Birth of a Big Idea: The FFFS

When I wrote a blog post about a past miscarriage in the early days of my blogging career, I had no idea the response I would receive. CBC radio asked me to come on air and discuss my fertility and miscarriage and even added an article for their online content. CBC National picked up that online article and from there the views on my blog soared, the messages poured in and beautiful experiences presented themselves to me.

Out of my grief and experiences came a better gift: a purpose to help others. 

Out of my grief and experiences came a better gift: a purpose to help others. 

 

I was overwhelmed to say the least. To add even more excitement and awe to this incredible start to blogging, an old co-worker, Dani Friesen, reached out to me for a coffee meeting to discuss an idea she had. She was heartbroken to see many of her friends suffering with infertility and even more, she was appalled at the cost and financial devastation some couples were taking to try to conceive. She wanted to start a charity that raised funds for families to help pay for their fertility treatments. And she wanted my help.

I was honoured and confused; what did I know about charity work or fundraising? But Dani was confident I was a good fit and we began researching and planning immediately. I contacted Dr. Adrian Gamelin, the co-owner of Aurora IVF in Saskatoon to ask for her assistance. Her exact words: “we’ve been waiting for someone to do this.” She was on board to act as our medical consultant and help us decipher medical information. From there, Gamelin suggested we meet with Wendy Winiewski, a Global news anchor and mother who had her daughter via IVF. The three of us met, saw how well our personalities, skills and stories complimented each other and Family Fertility Fund was underway! Since then we’ve added one more valuable board member, Kristie Anne MacDonald who we know will be an immense help to FFFS and to all those who apply, reach out and/or work with.

Dani, myself, Wendy. Not pictured: Kristie Anne but you'll all see her soon enough!

Dani, myself, Wendy. Not pictured: Kristie Anne but you'll all see her soon enough!

 

It’s been hard. We obviously knew it would be challenging but hard work of getting a business off the ground aside, reading the applications from our applicants was heart wrenching and emotionally draining. We’ve done one round of funding where we gave $5,000 to one couple in December. Our criterion and selection method are based upon a grading process combined with an extensive application that reviews medical history, prognosis and financial statements. We ask for a fertility history as well as personal statements from both people on the application. We short list three couples who then receive a second medical evaluation form that is more thorough and in depth. That form is filled out by their physician and then sent to Gamelin who helps us decipher their diagnosis and prognosis. Her input is valuable but ultimately, the decision comes down to finances. What have they previously spent on treatment? What are their assets? Do they have any savings? Are they going to Mexico twice a year knowing their infertility diagnosis and quoted treatment costs? Have they made financial sacrifices? What’s their income to debt ratio? What percentage is their car payment out of their monthly income? Do they have student debt? Do they have a maxed line of credit from previous treatments? Do they spend frivolously?

As you can probably imagine, there is a lot that goes into the decision and it weighs heavily on us. On top of sifting through bank statements, budgets and medical jargon, we also catch a personal glimpse of who they are and how they’ve been impacted by their struggle from the story they share. Some even included pictures. When tasked with the fate of someone’s fertility, you can’t turn into a robot and let numbers and cents dictate your decision. There must be an element of humanity and compassion in the process.

The couple we chose for our fall funding met our expectations and medical and financial criterion. Without divulging their names, diagnosis or financial status, we wanted to share with you, many of you who have contributed donations and money to our organization already, an excerpt from their personal statement to show you how deserving and incredible these two people are:

From the wife, her first words were: “I am blessed. I really, truly am blessed with what and who I have in my life.” Despite her many fertility challenges and losses, she still has gratitude and finds the silver lining in a very dark cloud. She acknowledged her struggles and yet focuses on moving forward. She continued, “I still have hard days but I feel as though time really helps to heal. This year has been packed full of some of the most difficult moments I have ever faced. I truly feel that this year has tested my resiliency. I have learned that some things don’t always turn out the way you planned it or the way you think they should. I have also learned that things are bound to go wrong and can’t always be put back together the way they once were. But the biggest thing I have learned is that you can still come out on top if you are surrounded by the people who love you.”

Tough times are the biggest teachers for most people. They teach you strength or resiliency and sometimes, who to walk away from and who to embrace. They can also make you resentful and bitter. Hard times are just that, hard and infertility is such a hard beast; it’s a huge hovering menace that infiltrates every thought, move and decision. It takes over the lives of those it infects. To find a couple who could still embrace the good, acknowledge the bad and find strength to move forward was hard hitting for our selection committee.

Her husband’s story affected us even more. Upon finding out their first IVF cycle failed, he said, “ I was brought back down to reality when [wife] called me at work the next day to tell me that we did not have any embryos to be frozen. After hanging up with her, I had to leave the shop and have a moment to myself. I kept this a secret from [wife] knowing that she was at home having her own moment. I was more worried about how she felt. If there is one thing that came out of this horrible situation is that it brought me closer to my wife.”

Their story combined with their past struggles, life circumstances, financial status and medical history led us to choose them. It was a night to remember when the FFFS directors got together December 21 to deliver the best Christmas gift we could ever imagine giving: funding for their last chance to have a baby.

Delivering the $5,000 we raised from two online auctions and two events to Aurora IVF on behalf of our recipients

Delivering the $5,000 we raised from two online auctions and two events to Aurora IVF on behalf of our recipients

It was incredibly difficult to give bad news to eight other deserving couples. It broke our hearts to tell them they hadn’t been selected even though they all deserved a chance. Here we were, a group of women trying to help, and yet, breaking hearts along the way. It stung. But the joy, disbelief and tears we heard over our speaker phone conversation was enough to know that we were doing something good for our community and that we needed to continue. My husband Clayton, a farm boy with a tough exterior, filmed the conversation and even he had tears in his eyes witnessing such a magical moment. We all cried that night; tears of joy and happiness and tears for the others who were now back at square one with their treatment options.  I’m actually tearing up remembering it now. With more funding, we could help more people than one recipient each round. With more money, we hope to one day fund all the applicants who apply. With more money, we can help more babies join us earthside. This is why fundraising and charity is so important for us: We give a family hope. We give a family a chance. And hopefully, we will give a family their baby.

It's Okay to Be Okay...or not.

The other day a new friend, a fellow Phoenix mama, expressed sympathy for my four recurrent miscarriages. She apologized for the losses and said, “oh, your poor heart.” While I certainly appreciated the love and her sweet, kind heart, I didn't feel the sting of pain. In fact, I felt nothing.  There was no sadness or anger or angst like there had been for years before. Instead, there was just gratitude for her acknowledging my journey and my angel babies. But I spent the next 24 hours examining myself. Was my depression creeping back in? Had I lost all capacity to feel somewhere between the second and third loss? Was I numb? Truth be told, I panicked a bit.

A few days later, I asked another friend for some blog ideas and she suggested this exact topic. She too was a Phoenix mama: she lost her son at 23 weeks. We discussed at length these feelings, or lack thereof, and that it wa scaring me. She reassured me with her own similar feelings and how, with time and grieving and support, we heal and that's okay. But yet, we still feel guilty for it.

It’s as though we think that if we move on and find happiness after the loss (and this can be any loss-not just infant or pregnancy) we are betraying them. We think we aren’t allowed to experience joy again when our world had previously crumbled. We think our happiness isn’t deserved and somehow, the loss needs to stay with us in some negative, cloud-hanging-above-us way that prevents us from forgetting what happened. Because, of course, if we’re happy and moved on, we think we will forget them.

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Similarly, when we find this strength and resiliency after a loss, we feel guilty for that too. I know I especially do. When I miscarried the third time, I had quite a bit of time alone to cry most of my tears and grieve. Plus I had a few tools under my belt for bereavement so I was able to process more quickly that time. A few days later, I had two friends bring meals for us (at separate times) and they both cried while standing in my living room while I awkwardly consoled them. I understood their pain in knowing their friend was going through a terrible loss but it was weird to be okay when it was happening to me and they weren’t okay. I felt like I was supposed to be hysterical and upset to show others how awful the loss was to us. I felt that if I wasn’t crying and grieving outwardly, the loss didn’t matter to me. I also felt like my strength portrayed me as unfeeling and bitchy. It can be strange to see someone be fine so soon after a loss but we all grieve in different ways and at different stages. It's never linear and it's never the same with each loss. When my friend’s dad died, she was more relieved he wasn’t suffering anymore and her grief didn’t show itself as hysterical tears when she told me his death story. Grief isn’t a one size fits all. And that’s okay.

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I’ve since learned that it’s okay to be okay. I can’t imagine any lost loved ones are looking upon us and wishing us ill will for moving on and finding happiness again. I’d like to believe my angel babies want me to be happy after suffering so many times before. Once in awhile, in a seemingly random and unexpected moment, I'm hit with that wave of sadness again but then I think about where I am in that exact moment and am thankful for the hardships because I am the best version of myself for that time because of what's happened. Moving on doesn’t mean we will forget them, not if we don’t allow it. That’s why many people want their loved ones recognized. When we say their names or send kind messages on anniversaries, we keep their memory alive. When we hang pictures and tell stories and shoot a shot in their honour, we keep them alive in our hearts.

And in our hearts is where it matters most.

I’ve also learned that it’s okay to not be okay. Sometimes grief is so heavy it smothers us. We feel like we can’t breathe and getting through the day seems damn near impossible. I rarely have these days myself now but I know many people that do. Your job as the okay person is to love them through it. Check in daily whether through email or text or a phone call. Bring a meal or a book or a bubble bath kit even if they say they don’t need anything. We always need something in times of grieving but can rarely decipher what it is so opt to saying, “It’s okay, I don’t need anything.” Grieving people don’t want to feel like a burden on others so more often than not, they don’t reach out. Thankfully there are so many online and in-person support groups now that grieving can be felt in a safe, healthy space with people who are also grieving. Many people are not okay, and that’s okay. There is always someone to listen, to cry with, to hug you, to bring you anything. We grieve to process and then heal. We only hope we come out of the other side of it strong and healthy, ready to move on with love and acceptance.

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To be okay is okay. To not be okay is also okay. We are all perfect souls in imperfect bodies trying our best to make the most out of this life. Whether you have healed and are okay or haven’t healed yet, there are many people in your corner rooting for you, including the ones you’ve lost. They’re in your heart, you memories, your energy awaiting your triumphant rise a new kind of happiness once again.

 

 

Angel Babies and Silver Linings

I never wanted to have kids. Ever. I was eight the first time I remember saying I didn’t want to ever be a mom. I had big goals and motherhood wasn’t one of them. Then I entered a relationship in my early 20’s that had me living in a new world immersed in love, affection, deep conversations, mutual support and more.  I finally understood why people want to have children. We want to create an expression of the intimacy we share with someone; a joining of two to blend our love and lives forever. The idea of becoming a mother to his child took root. It felt right and wanted. We knew we would be together forever. We stopped using contraceptives and banked on our affection bearing a new love between us, of us.

My handsome hubby, Clayton and I 

My handsome hubby, Clayton and I 

 

But years of endometriosis, surgeries, debilitating periods, tears and frustration led us to believe that maybe we were destined to be the cool Aunt and Uncle, not the cool Mom and Dad. We made peace with my infertility. We envisioned travelling the world, sending exotic gifts to our nieces and nephews. We began to focus more heavily on a future that involved successful careers, long hours and hard work.

Fast forward to age 28. I’m in the middle of my degree and working full time. I’m standing outside Subway on Cumberland Avenue in the frigid winter sunshine, tears spilling out of my face as I call my fiancé (and now husband) to tell him I am pregnant. To say we were shocked is an understatement. We had JUST accepted our childless future six weeks prior and we had finally found peace. A baby no longer fit into our plans. But what’s that saying? Tell God your plans and you’ll hear Him laugh? So here we were, January 2013 expecting a child, unprepared for our future as parents and scared to death.

After having an easy pregnancy, we met our healthy baby girl and the future we had envisioned no longer held the appeal it once did. I didn’t know how empty my life was until she entered it. She was an exceptionally happy baby who slept through the night by 13 weeks and who showed me what unconditional love looked like. She was ecstatic to see us every day. She woke up every morning with a smile and a look of “I’m alive? I get to do this again today? Wow!” She was and still is, amazing.

As we got to know her, we wanted more kids. We wanted to grow our family and continue reveling in this newfound joy and different way of being present in the world, as individuals and as parents.

At the time of writing, the Universe seems to have made different plans for us. Or rather, an undoing of plans.

It's been four years since welcoming our daughter and I have had as many miscarriages. The first was during our daughter’s first birthday party, when I started miscarrying at 10 weeks. The second took place the day before a trip to Banff, when I was seven weeks pregnant. For the third, I made it one week more before my miscarriage started at eight weeks. My most recent was the shortest pregnancy, at five weeks it came to an end while we were camping this summer.

Sometimes I wish I had the infertility card back, not the recurrent miscarriage card. With my infertility I never learned what this kind of hope felt like. My hopes as an infertile woman were full of longing and prayers and anticipation that this treatment would work.  Pregnancy after miscarriages brings a flicker of hope that never fully catches ablaze. My days of pregnancy excitement are behind me. Now, a positive test means despair, anxiety, fear and horrible thoughts. All while desperately trying to convince my body and heart that THIS pregnancy will be the one that sticks.

One of the many positive tests I've gotten that left me with negative feelings

One of the many positive tests I've gotten that left me with negative feelings

 

I spend those early days moving slowly so as not to induce bleeding. I take progesterone and vitamins and homeopathic remedies. I talk to the Universe/Spirit/God/ [insert whatever you connect with here]. I pray fervently and meditate daily. I go for acupuncture and practice yoga. I repeat mantras and affirmations incessantly. And still, I miscarry. Those spiritual exercises cause me to doubt the entire Universe. I doubt my intuition. I question every food I ate, every move I made, everything I could’ve or should’ve done but didn’t.

I don’t share this to make you feel sorry for me but to illustrate how tragic this journey has been. Not only for me either, but my husband and daughter, our family and friends. Watching someone you love suffer renders most people helpless. There’s not much anyone can do except hold space and witness as we’re grieving a loss.

I do share this because I have found so many silver linings in my dark clouded days. I started my blog, What We Don’t Do, when I was pregnant with my third angel baby. Having an outlet to share my grief and anger allowed me to release it as opposed to bottling it up and letting it fester. Blogging saved me. I used stream of consciousness while I wrote so I inevitably released a lot of thoughts, feelings and emotions I hadn’t recognized before. It was cathartic, liberating and more importantly, healing.

Another silver lining was, while I couldn’t necessarily always help myself, I was able to reach and help hundreds of women in similar circumstances. The messages and emails I’ve received since starting WWDD has made every tear shed worth it. My words have helped others cope and there’s no better feeling than knowing you are helping someone, somewhere. I am serving a community of largely voiceless women by becoming an obnoxiously loud voice for our fertility community!

Also, I had the bewildering experience to be invited on to CBC Saskatoon’s morning radio show to discuss my miscarriages and the response the miscarriage blog post received. That post was read in over 25 countries and over 7,000 times. Writing those numbers still brings tears of gratitude and awe! Through that interview, I reconnected with an old co-worker who approached me with an idea she had: she wanted to start a non-profit organization that raised money for families to help pay for fertility treatments. She asked for my help in making it a reality. From there, Dr. Adrian Gamelin, the Director of the Aurora Fertility Clinic in Saskatoon, who was co-interviewed with me on CBC, introduced us to Wendy Winiewski, a Global news anchor and fellow infertility Phoenix mama (a woman who has heroically risen from the ashes of infertility/pregnancy loss/perinatal loss). Her daughter Aeralyn was conceived through IVF and Wendy has shared her journey and reached hundreds of women through her Instagram account a.voice.of.infertility. The three of us are an unlikely combo but yet, we shine together. We’ve raised almost $10,000 in three months and will continue to raise more as we increase awareness surrounding infertility and fight for affordable treatments.

Dani, the brains; me, the soul; Wendy, the heart behind the Family Fertility Fund of Sask

Dani, the brains; me, the soul; Wendy, the heart behind the Family Fertility Fund of Sask

 

The final and most significant silver lining is how much I’ve changed. Prior to my struggle, I never knew heartbreaking loss before. I had never lost someone close to me. I had never faced death or severe illness nor knew anyone in my inner circle of friends and family who did either. I always had a roof over my head, food in my tummy, clothes on my back. I never had to struggle for basic survival like millions of people do on this planet. I didn’t know tragedy or true despair. Until four years ago, I had it pretty good. I still have it pretty good but my pieces have crumbled to nothing only to be put back together again, albeit differently. I believe that through pain comes incredible new beginnings. Sometimes we can’t appreciate the good without knowing, really knowing, the bad.

a captured laugh at our FFFS photo shoot

a captured laugh at our FFFS photo shoot

I am stronger now. I have a resiliency and emotional intelligence that was never there before. I am wiser yet softer, more forgiving and understanding. I appreciate the mundane in each day and take time to stop and take in moments more often. I find the joy in a summer thunderstorm and feel the comfort of a campfire like a warm blanket. I love harder and hug longer. I listen better and hold unwavering faith. I am not ready to back down yet. I still want another baby and I will try to have another baby. I have fight left in me.

But regardless of how my story ends, I know it has been exactly how it’s meant to go.  If I never give my daughter a sibling all of these struggles were to teach me a bigger lesson than having a baby can bring.  Life is unfolding and undoing exactly as it should. I’ve made peace with my recurrent miscarriages. I have four guardian angels watching out for me now and guiding me towards the Light. That’s a silver lining that can’t be denied. We need more women who are strong, resilient and rising again to become the change the world needs. I’m happily stepping forward as a Phoenix Mama and can only pray my growth doesn’t end here. The lessons are in the journey, both in the good and the bad. But whatever may come, I will rise again.

 

What do you mean I can't have a baby?

It just doesn't seem fair does it? You spend a portion of your life learning the importance of properly protecting yourself from unplanned pregnancies, use all the contraceptives, or perhaps you even abstain. Like how many times have you had a pregnancy scare and felt like your world might come crumbling to a halt!?! Fast forward a few years, perhaps even a decade and you literally couldn't get pregnant if you tried....like really tried. Everyday tried. Millions of doctors appointments, getting poked by needles, scheduled intercourse, more appointments, monitoring everything, waiting, disappointment, and more waiting. If you could only make money off all the times you were told, "Don't worry it will happen when it's supposed to". F*^$& that noise. 

Que sadness, despair, resentment, and self-pity. 

Infertility is a real thing. It's a really sad thing and I know way too many people in my life that have experienced it. No one tells you that your dreams of being a mother might not come true. What do you mean my ovaries are blocked and I have never been able to conceive? That would have been great to know 10 years ago! Could have saved lots of worry and some bucks. Yes, adoption is an option but it's not the idea you had in your head. And to start it all off you will wait months before the doctors will even look at you, then spend zillions of hours with specialists, now testing, waiting, hormones- great!, and more waiting. How far will you go to get that family you envisioned? Is IVF in your cards? And more importantly, how much can you endure to get there?

In 1984, the estimated percentage of couples with fertility problems was 5.4% [MediResource Inc. ]. In 1992, this number increased to 8.5%. And today, the estimated prevalence (total number of couples with infertility) is up to 15.7%. So whats up with that? Sources say that multiple factors could play a role into why we have literally tripled our numbers within my lifetime. Most noted would be the fact that women are simply waiting to have kids and as we age we become less fertile. Obesity, chronic diseases, and sexually transmitted diseases are on the increase which can also play a vital role in these growing statistics. 

Now, I personally don't know what infertility feels like - i'm speaking on behalf of the many women in my life that have recently gone through it. I do know what miscarriage looks like. It's equally as ugly. It is heart-breaking and in my opinion brings up a lot of the same feelings that goes along with it's nasty neighbor - infertility. My reproductive reality happens to be recurrent miscarriages. unexplained. I could simply get sneezed on and I will be pregnant. Keeping it just isn't in the cards. It has been one year to almost the day since the last one. I found myself in the same situation as the rest - trying to hold back the flood of emotion, keeping it together as essentially few people even knew I was pregnant, and just told myself to move one foot in front of the next. It's okay...you are a seasoned vet by now. It's gotta get easier, right?

Now the doctors will tell you that it is SOOO COMMON. Among women who know they are pregnant, 1 in 6 pregnancies (some studies say even 1 in 4) ends in miscarriage [NHS Choices. Miscarriage. Available at: http://www.nhs.uk/conditions/miscarriage/Pages/Introduction.aspx]. Really? What is just no one talking about it then? After my first miscarriage I spent hours researching this bizarre phenomenon - but how does a fetus's heart just stop? I became obsessed....I had to know everything I could because I certainly didn't want to go through that again and I think I had to reassure myself that it was not something that I did. 

Here is what I know about miscarriage and/or infertility, like the #truthbombs:

1) If you have experienced either, you literally will resent people that announce they are having a baby. It's okay! If 1 in 6 of us are going through this just imagine all the fake smiles and forced (but also well intended) congratulations that are happening. You are not alone. Grin and bare it girl!

2) Having scheduled sex is hard on your relationship. And so is peeing on a stick every month to only see one line. Also those sticks are over priced and there isn't one that is better than the rest. Ohhh digital...must be more advanced...sure charge double. If it gives me two lines then sure! Let me try it.

3) You become slightly crazy after a miscarriage and/or fertility drugs. I'm not sure if its the combination of grief/anger and the hormone changes but like bat shit crazy nuts. It goes away, you will eventually feel normal again. Soon you won't cry at a drop of a hat or lose your mind because the laundry didn't get folded. 

4) It's 100% not easy and you are not alone (see stats above). There are forums, chat rooms, and support groups. It feels better to know that someone is feeling the same way as you. It takes a little bit of that pain away. Source one out or talk to someone that understands.

5) For those of you that haven't experienced infertility or miscarriages - thank your lucky stars and be mindful of others. It seems common to ask, "Why don't you have kids?" Just don't ever ask that. Like ever! To answer your question, they either don't want kids or are trying.

6) Life is precious. The experience makes you realize how bizarre this whole livin thing really is! Our bodies are so complicated and it really is a miracle to be able to conceive and give birth to a healthy human. Slow your roll and enjoy life. We get wrapped up in our own ideologies and "our plans" that we forget that today is as important as tomorrow. So live it. 

There is a unique pain that comes from preparing a place in your heart for a child that never comes - David Platt

Supporting those you know that have suffered a miscarriage or battling with infertility can be difficult but it's important for the healing process. Even if you don't know what to say making yourself present goes a long way. To all those that are fighting the fight - stay strong - we are standing with you. 

Chan XOXO