#BellLetsTalk : My struggle with PTSD

Three years ago, #BellLetsTalk day fell on February 12th. I spent the day making posts to social media and sending my friends text messages one word at a time in order to help raise money for mental health programs.

Little did I know that at 5pm that day my life, as I knew it, would cease to exist. My baby died. My body killed her. And my life fell apart. That day I lost my baby and I lost myself. I started the day wanting to help people with mental illness, and by the end of that day I was in the throes of despair, unsure if I would ever find my way out the darkness again.

I often reference my struggles with mental illness, but I rarely divulge exactly what that means. I say that I cope, but I rarely say how. So on this #BellLetsTalk day, let’s work together and end the stigma. Let me tell you about what mental illness means to me.

People usually talk about Post Traumatic Stress Disorder (PTSD) as it relates to service people – those who have fought the front lines and seen and experiences some of the most traumatic events the world has offered. It’s rarely talked about in ‘everyday people’.  But as I lay in that hospital bed that night, knowing that the vessel that was meant to keep my daughter alive was the very thing that killed her, as I lay there waiting for my body to push out death when it should have been bearing life, I became a PTSD statistic. I gave birth to death. I may never have seen war, but since that day there is a war that rages in my mind every day.

The flashbacks are real, the sudden onset panic and paranoia lurk around every corner. I never know when it will lurch at me and swallow me whole. I don’t know what will set it off, or when. Sometimes it’s a smell, or finding a random object that reminds me of her. I don’t have many solid memories of that night waiting for her to be born – but every now and then something will jog a memory and I find myself in the midst of a realistic flashback that I just can’t control and can’t escape. I have to try to find reality again, quickly, before I lose complete control. In general, flashbacks last a few seconds or minutes and vary in their intensity and frequency. These can be so realistic that it feels as though I’m living through the experience all over again.  I see it in my mind, but also feel the emotions and physical sensations of what happened – fear, sweating, smells, sounds, pain.

I don’t remember what it’s like to have a full nights sleep (regardless of the 1 and a half year old that often steals some from me as well). When I do sleep, I am haunted by nightmares that remind me of what I have lost and what I have endured. Just being in the same room with someone that is pregnant makes my chest feel tight and makes me sweat and stammer. The reminders give me intense physical reactions – my heart races, I can’t breath and it feels like my chest is being crushed in a vice. It can come out of no where. Without warning a good day can become a very bad one. Knowing this, I’m always in a state of hyper vigilance – constantly looking out for triggers. It leads to avoidance, social anxiety, and can leave me feeling emotionally numb and physically exhausted. Sometimes I deal with the pain by trying to feel nothing at all. I communicate less with other people who then find it hard to live and work with me. For me, especially I have found since returning to work that I am much more withdrawn with my co-workers. I spend a lot of time doing my work with my head down and socializing very little around the office. I still fear that I am looked at as the girl with the dead baby – as outlandish as they may be.  My employer has been nothing short of amazing and supportive.

But of course, because people expect you to “get better” and “move on”, the stigma leads me to work very hard to remain calm on the surface and struggle below just to keep my head above water.

Support from other people is vital to recovery from PTSD. Social interaction with someone who cares about you is the most effective way to calm your nervous system, so it’s been so important to me to find someone I can connect with —someone I can talk to for an uninterrupted period of time, someone who will listen to me without judging. I have a select few people who I call on from time to time hen I need to grasp reality again, whether on on the verge of, or in the middle of a flashback or panic attack. I know that I can reach out to these people and they will pull me through it. They have been my saving grace.

I’be been through years of therapy, I’ve been on meds and still every single day for me is a constant effort to manage my own mental health. And yes, from time to time I am ashamed, and I do feel the weight of the stigma. But thanks to good friends, love, support and campaigns like #BellLetsTalk, I know that my health isn’t something to be ashamed of, and it’s important to talk about it and be open and honest about how I feel so that others know it’s ok to reach out and get help just like I have.

So Let’s talk.

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February.

For most, when January rings in the New Year their hearts and heads are filled with the hope of new beginnings and renewed perspective. And although part of me feels that way too, I can’t help but feel that with the crest of a new year, I am staring down the barrel of a loaded gun.

February. The dead of winter. It’s cold. It’s dark. And it’s the month she died. The weather was bitterly cold and I took a grim satisfaction in how the bleakness mirrored my mood. It seemed only reasonable that the trees should be bare, the streets part-frozen and the skies a dull grey. It was like the world was grieving with me for that short period of time. It’s the last month she lived. It’s the month where life as I knew it ceased to exist.

I thought grief was linear. It’s not. I thought that the days she died and was born would be the worst days of my life. I thought it couldn’t get worse. But as the days and the weeks and the months crept by I started mourning and grieving in a way that I hadn’t fully done until that time. I wasn’t sleeping, I was staying up all night crying, reading articles about stillbirth so I didn’t feel so alone. I was seeking refuge in talking to strangers (become friends) online who understood where I was.  I didn’t want to leave the house. When I did leave the house I felt so incredibly guilty. The rest of the world has this unspoken expectation that you should get better and move on; I felt like I was nowhere near that. It was still so recent—I kept thinking, Now I would have had a three-month-old, a four-month-old, a five-month-old…I was still scratching the surface understanding what this loss meant for me as a mother. Three years later, I still am. Now I would have a three year old.

Staring down the barrel of February I am filled with a mix of emotions where the loss still feels so recent, yet she feels so far. Sleep has been evading me again. The nightmares have returned with a vengeance and the flashbacks are becoming more frequent. My chest feels tight, my limbs feel heavy and I can’t remember how she smelled anymore and that breaks my heart. It’s times like these that I miss my Psychologist the most.

Yes, I’ve found love and happiness in my life again, but it has never stopped the insurmountable pain. There isn’t a second that goes by that I don’t feel the ache of her loss. The New Year brings new hope, but it also brings painful memories. I haven’t been sleeping. I’ve been hiding my tears from people. I’ve been spending sleepless nights seeking refuge in the internet’s deepest darkest corners where moms like me exist to support one another and I hug my living child a little tighter in the dim light of the quiet mornings. I’m finding it hard to find the words to express my thoughts and feelings in regards to learning to live without her. It’s something I neither expected nor wanted to learn. But there is unmatchable beauty in just being her mother forever. Today and always I will celebrate the beauty in that.  It’s unbearable, but you bear it. And, you get to the point where even though it’s still a burden you bear, the weight doesn’t change, but it redistributes itself. Molds itself around this new person you’ve become and this new normal you live.

October 15th

Three years ago, I had no idea that October 15th had any significance. But now that I am 1 of the 1 in 4 who has suffered the loss of a child, I am more than acutely aware what this day represents to people like me all across the world. October 15th is Pregnancy and Infant Loss awareness day.  1in 4 pregnancies in Canada will end in a loss. 1 in 200 of those pregnancies will end, like mine, in a stillbirth. 1 in 200 women will enter a hospital swelling with life and will leave with empty arms and empty hearts.

Days like today are important to families like mine for many reasons, but to a lot of people recognizing October 15th allows us to validate that our babies were here, and that they matter, and most importantly in a world where baby loss is still so taboo, that we are not alone.  I didn’t know that those frightening statistics existed until I was a part of them. And now that I am, they define my life. They define the mother I have become. They impact every decision I make. I know how fragile life is, and I know that tomorrow isn’t promised to anyone. When you hear the words “There is no heart beat” the trap door opens and you fall through to an abyss you never really find your way out of.

A common theme I have heard from parents like myself is that we want to talk about our children. It absolutely hurts to hear my daughter’s name, but it hurts a hell of a lot more not to hear it. She is a part of my life, just as much as my son is. She is my child. I want to speak about her. I want to remember her. And I know many others feel the same. If you’re wondering the best way to support someone you know who may be 1 in 4, ask them. Ask how they are. Ask how they really are. And, to offer support, care enough to listen to their answer. All we really want to know is that you care. Don’t worry about clichés, don’t try to comfort us with tales of how they’re in a better place, or how we can always have more children. You cannot replace one child with another. Just listen. Let us remember. Let us recognize the value of their little lives, no matter how brief.

It has been said, if I lost my parents I would be an orphan. If I lost my husband, I would be a widow. But I lost my child, and there are no words. No words. You don’t just lose a baby. You lose first birthdays. First steps, First days of school, Christmas mornings, loose teeth, sweet 16s, wedding days… you lose a whole life. You just lose it all. It’s ok to not be ok. It doesn’t matter how long it has been, there will always be times when the grief will make it hard to breathe. But we’re here for each other. You’re not alone. Life will go on. And sometimes, that’s the saddest part.

Parents, be kind to yourself today and every day. You and your babies matter. Speak up. Break the silence.

You can hear my full interview with VOCM’s Paddy Daly here:

Crash

I’d been anticipating it. I knew it was coming. But sometimes bracing yourself for the impact of the crash does more harm than good in the long run. Body stiff. Clenched. Waiting.

Damn you Facebook.

On this date three years ago I announced to the world that after long last, I was pregnant. 12 weeks along and expecting my first child. It was just after labour day when I posted the picture of her little gummie bear self, standing on her head. She was still safe inside of me.  She was so silly, my little girl. It would be one of the few pictures I ever got to share of her.

Seeing it this morning on my Facebook flash back was like getting a glimpse of the old me. The one who was still blissfully unaware of what an awful place the world can be. Before I knew what pain was. Before I understood heart break.

I miss that girl.

Three years out and I now exist somewhere between my grief and my life as a mother to two and a parent to one. A working mom who is missing a piece of her heart. Trying every day to make her children proud. And living every day with the reminders that life will never be the same again.

Brace for impact. Crash.

Balance.

Looking at a blank screen intimidates me slightly these days. Trying to find a balance between overwhelming joy and overwhelming grief is, to say the least, difficult.

Mother’s Day. The epitome of that feeling.

Spending this past mother’s day with my rainbow was more amazing than I could have ever imagined. Spending time with that boy, every minute of every day, makes my heart want to explode. When he looks as me with his mischievous little grin and says “ momomomomomom”, I am his. Anything he desires, anything he could wish for he could have. And the best part? All he wants is my love and attention. These days are passing in the blink of an eye. I will cherish every moment that I am his entire world.

But it was never lost on me, not for a second, that the wee girl who made me a mother didn’t get to share in that day. As always, the innocent remarks of strangers cut like a knife. Ive made peace with the fact that this will always be my reality. That’s ok. Sometimes that sting is strangely comforting.

I never thought that I would say this, but sometimes I miss the overwhelming, all consuming, heart wrenching grief. As odd as it may seem, feeling that way meant she was closer. She seems so far from me now. Several lifetimes. I’ve learned to live with the constant dull ache of her absence, it’s always nibbling at the back neck, never out of my periphery. Settling into my grief and knowing that it will always play a role in who I am and what I do has made me feel further from her. Not from her memory, from her. Each day that passes is a day farther from the last time I saw her face, kissed her cheek and felt the weight of her body in my arms.

And then there are the moments like this one. Where I type things like that and in an instant the flashbacks happen. I am sitting in that bed, in that blue gown. IV’s hooked to my arms, unable to feel my legs, drunk from the morphine and ativan cocktail. And holding my beautiful little girl for the very first and very last time. And in those moments it’s happening all over again. The anxiety makes my chest tight. It’s hard to breathe. I can’t see straight. But she isn’t so far away anymore. And although it hurts, and it kills a little piece of me, I hold on to that horrible feeling for just a second more.

It’s about finding that balance.

805

805 days and sometimes it still seems like yesterday.

For the most part I cope so well. People don’t see the hurt in my eyes like they used to, people don’t look at me and see a dead baby anymore. They see Finnegan’s mom. I love that. But the part that hurts the most is that they rarely see Everlee’s mom anymore. And if they do, they don’t mention it.

I was browsing through Facebook last night as I lay on the couch after Finnegan had gone to bed. It was the mundane stuff I had come to expect. Political post. Someone selling something. Share this in 30 seconds or your eyeballs will fall out. And then, like a swift kick in the kidneys a mother/daughter makeover contest for mother’s day. And I bawled. Not cried. Bawled. Full out ugly cry.  I’ll never get those mother/daughter moments. And I miss her. I really effing miss her.

Take a deep breath Rhonda, and you’ll make it through 806.

Two.

The terrible twos. My heart is heavy. I didn’t post an entry on Everlee’s birthday. I wrote, of course. I always write. But I didn’t post anything. I thought about putting words down all day for the blog, but I had nothing. My words were taken from me again and I fell silent, and for that I hope she can forgive me. I lost my voice with grief, again. I had flashbacks. I don’t know if those will ever stop. I’m told it’s a normal part of PTSD. My new normal.

The doctors thin cold hand on my leg

“It means your baby died”

And that’s when the world ceased to exist as I know it, and the roller coaster hasn’t slowed since.

This year I celebrated my little girl’s second birthday from the beautiful state of Florida with her little brother and her grandparents. The very place I went to escape reality when we lost her. We ate cake. We released balloons. I smiled. I did not cry in front of anyone (I cried a river in the shower). I held it together for the whole day. I don’t ever want Finnegan to think that his big sister makes his mommy sad. I want him to know that although my heart breaks that she is not here, she is, and always will be, one of the loves of my life. I want him to know her. She is the beautiful girl that gave me the honour and the privilege to be a mother. I will always be Everlee’s mom.

People don’t talk about her as often as they once did. I love talking about her. I love hearing her name. I love to be acknowledged as a mother of two. It always takes people back a little when I have to remind them that Finnegan is not my first child, he is my second (and I will always correct people on that). I don’t think anyone has forgotten Everlee, I would never let that happen. But it’s no longer in the forefront of people’s minds when they see me.

I’m not the girl with the dead baby, anymore. People don’t see death when they see me anymore. They see a normal mom. Something I longed for in those dark months after Everlee died, and now something that hangs on me like an ill fitting suit. I’m not a normal mom. I never will be. I know the sting of losing a child. With her went so much of me that I don’t think I’ll ever get back. But with Finnegan, I’ve gained so much that I never knew I could have. It’s a constant struggle to find balance. I am allowed to be sad, and to grieve, but I am also allowed to be happy, and feel joy and celebrate life.

That’s the duality of the situation I guess. That’s the beauty and the sorrow of two.

Video of Everlee’s balloon release 

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Baby Oliver

11copyAnd just like that another year has come and gone.

Last New Year’s Eve I remember thanking the universe that 2013 had finally come to an end. What I can only hope will be the worst year of my life was behind me and I was looking forward to 2014 with all of the hope and anticipation of finally bringing home a live baby. 2014 didn’t come without its struggles. The first half of the year was filled with anxiety, constant fear, and doctor’s appointments. I celebrated Everlee’s first birthday without her, and I was constantly holding my breath waiting for my happiness to be ripped from my chest once again. But then Finnegan arrived. And he was safe, and healthy and happy and I finally could breathe again.

2013 was the year I died and buried myself in grief, but 2014 was the year I remembered how to live.

I have so much hope for 2015. I’ll be celebrating Everlee’s birthday this year in Florida, where I went to find some warmth in the coldest months of my life. But this time I’ll be bringing my own sunshine with me. I can’t wait to go on all kinds of adventures with Finnegan in 2015 and watch as he explores the world for the first time. Every day is a new beginning for me with him. He is my heart and my happiness.

It was an amazing Christmas season with family and friends from near and far helping me make it the most special first christmas for my little rainbow. Every step of the way I tried to make sure his big ister was included. I want to make sure her memory is always part of our traditions. From hanging her special ornament on the tree, to purchasing a gift for a needy child that would have been something I know she would have loved to have. Christmas isn’t Christmas without family, and she will always be a part of our holiday traditions.

Over the holidays I also had the pleasure of meeting Oliver’s mom. I wish I knew her name. I only know she is Oliver’s mom. I was at a christmas lunch and she was working at the venue. She recognized me, and she recognized Finnegan from reading this blog. She told me about her son Oliver who was born still in May. She said that I was an inspiration to her, and that she has read what I have written here and it helped her. I have received in the hundreds of emails, but that was the first time that someone has come to me from no where after reading this blog and said they were walking this same lonely path. Oliver’s mom, I want you to know that when I woke up on Christmas morning I was thinking of you. I know how painful the first christmas is. I was thinking of baby Oliver. I also thought about you on New Year’s Eve and wondered if you were also thanking the universe that the worst year of your life was over, too. I want you to know something. The grief doesn’t go away. But you do learn to live with it. It doesn’t get easier, per say, but it does get more bearable. I remember being in your shoes and wondering if I would ever make it to where I am now. You will. I want you to know you touched my heart that day. You were brave to tell me about Oliver. And I am so happy you did. I hope you found some comfort in Christmas. And I hope 2015 is for you what 2014 was for me.

Happy New Year readers. Here’s hoping that each new year is only better than the last.

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Love, Loss and Motherhood

This week a two part special feature on CBC Radio aired about my journey as Everlee’s mom, and to becoming Finnegan’s mom. I chose to keep this quiet because I wasn’t sure how it was going to play out, and I wasn’t sure when it was going to air. But it did air this week and I couldn’t be happier with the outcome.

Ariana Kelland, an amazing journalist with the local CBC, contacted me back in the winter about doing a story about Everlee, infertility and my journey to becoming a mother again. I was a little hesitant about the idea in the back of my mind, but decided to go with it. It’s important to me to always break the silence about stillbirth and baby loss when I am presented with the opportunity to do so.

Ariana followed my pregnancy and visited me often during my 19 weeks of bed rest and again a few times after Finn was born and sculpted this beautiful piece for radio and the web. I can’t thank Ariana and the CBC enough for being interested in my story and helping to shed some light on a very sad situation that a lot of people feel they have to keep hidden in the shadows. My email inbox has been flooded all day with a lot of messages of support, and a lot of people who wanted to reach out and say they too have walked in my shoes, many before me and many after me.

Early on in this blog I wrote that I wanted Everlee’s life to be more than her death, and I really feel through all of the conversations and connections I have made that her little legacy has been to bring people together and start serious conversations for people who needed to have them.

So here’s the article, you can find the 10 minute audio clip embedded within the piece.

My blog has now had over 111,000 visitors. I want to thank each and every one of you that has helped me tell mine and Everlee’s story. It’s far from over, but knowing that you have been with me through the darkest of days and have helped me bring others light makes my heart and soul smile.

A Little Nuts

The flashbacks happen less frequently now then they used to. My new mom brain must block out that part of me for most of the day as I try my damnedest to be the best mother I can be to Finnegan. But in the nighttime, when the house is quiet and my little rainbow is tucked snuggly into his bed sometimes those monsters come creeping back.

Tonight, just now, I was stood at the sink washing bottles from the day when one hit. The scent of flowers.

When Everlee died we received so many beautiful arrangements. Though we only waked our little girl for one afternoon the room was filled with dozens of beautiful (mostly baby pink) bouquets. After the funeral was over the manager of the funeral home asked us what we would like done with them. Apparently most families are kind enough to donate the flowers to seniors homes in the area, or to sick patients at the hospital.

Not me.

I made my family load each and every last arrangement into their cars to bring them home to my house. They were Everlee’s flowers and I would be damned if I was going to give them all away.

For what seemed like an eternity every flat surface in my house, on both levels in every room there was a flower arrangement sitting in a lovely glass vase. At first they were comforting. A bit of colour in my sombre grey world. But slowly, as the days passed they started to wilt, and fade and die. It was morbid, and it was gross and it was depressing. But I held on to each and every one of them. It felt like I was watching what was happening to my heart and soul play out in the withering petals.

One by one I had to watch them go. Every day I was saying goodbye to another arrangement and watching them get thrown in the trash and in the end I was left with just an empty glass vase, delicate but with little purpose. Empty. Exactly how I felt.

But I held on to them because they were hers. And they are one of the few tangible memories I have to hold on to. Each and every vase now sits displayed on the top of my kitchen cabinets. No one has ever asked about them, but that’s what they are. Memories that I can hold in my hands.

It’s thoughts like these that have lead me to be somewhat of a packrat when it comes to Finnegan’s things. He has outgrown some clothes and toys now. Things I could probably pass on to others who would enjoy them like he did. But I can’t. It seems silly after all of the anxiety of a high risk pregnancy has passed, I still find myself cautious that no tomorrow is promised to me as his mother. I want to hang on to each and every thing that he has worn and touched in case it may one day be the only memories I have of him. I have a beautiful, healthy, happy little boy, and my biggest fear in the world is that some day he’ll die too like his sister. It’s depressing to think about in context, but in reality it makes me enjoy each and every moment that I am in. Being his mother has been my greatest joy, even if I am a little nuts.

Photo by Sweetland Photography