Unfriend me

Go ahead, unfriend me.

Don’t think I won’t notice. I’ve seen your posts too, the ones that give platitudes like, “Avoid negative people,” and, “Do not allow toxic people to turn you into one of them.” I know if I were to confront you, you’d say something about how you need to take time for yourself, about how dealing with me is exhausting and about how my grief is just too draining right now. I know you’ll say something about how it has already been six months, or a year, or whatever since my child died and about how you think I’m just not coming to terms with it. So do it. Unfriend me.

Grief lasts far longer than you anticipate. Some would argue it even lasts a lifetime. I know I’m not as happy as I used to be. I know I talk about my child a lot, and that it makes people really uncomfortable. I can see your reaction, how you look away, try to change the subject and avoid looking at me. But what I need you to understand is that this is NORMAL. Read that again: N-O-R-M-A-L. The space in my heart that my child takes is still empty and always will be. Having another baby won’t solve my problem. Whatever I find that heals me, and it is different for every person, I guarantee it won’t be on your timetable.

Do you really want to be a positive person? Do you really want to make a difference in this world for good? Then stop running from ‘negative people.’ Don’t respond with platitudes or cutesy sayings that fit in a meme. Instead, try giving more hugs. When I’m sad, hold me, pass me some tissues and be a shoulder to cry on. It isn’t your job to ‘fix’ me or to make me laugh again. The only thing you need to do is be with me in that moment and know that when I am ready to laugh again, I will.

If you can’t bring yourself to just be with me, then unfriend me. I don’t need negative people in my life either.

This post first appeared on Still Standing Magazine.

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The Headstone

Hello little child.

You don’t know me, but I’m here to visit you. Nearly 100 years ago, you came and left this earth in just a day. Your parents loved you. I know this from the headstone they have placed here, which must have cost a lot of money. I know your parents loved you because they are buried right beside you. I know your parents loved you in the way that every mother who has lost a child knows this.

Many generations have come and gone since you were here. There is likely no one alive today who knew you, or even knew of you. But as I walk through this cemetery, I stop and sit for a minute to say hello, because I think your mother would have liked that. She placed this headstone here so you would not be forgotten. Mothers who have lost a child are terrified that their child will be forgotten. I come by to ensure that you are not. Your name is not engraved on this stone. Maybe you were never given one. If you had a name, I would write it now so it could be immortalized to the internet. Your parents could not have even imagined the internet! But instead, I will give you the gift I have: the gift of time.

Little child, you were loved. You were missed. In your few minutes or hours, you played a role in humanity that deserves recognition. So when I come to the cemetery I will stop and pause at each child’s gravestone.

Just to say hello.

Headstone reads: "born and died June 23, 1917"

This post first appeared on Still Standing Magazine.

Every. Single. Day.

3287.

That’s the number of babies that are stillborn. Every. Single. Day.

2.6 million.

That’s the number of babies stillborn in 2015. Or at least, that’s the best estimate. You see, researchers don’t know exactly how many babies are stillborn each year, because not every stillbirth is recorded. In many countries, barriers to accessing healthcare and low value placed on women’s health means stillbirths are not even counted.

But we mothers know differently. Our babies matter. They need to count. Let’s change that.

  1. End the silence around stillbirth. Tell everyone you know that stillbirth isn’t something that happens to other people in other places, and it isn’t something you recover from in a week or a month. In countries like Canada, the United States and Australia stillbirth rates are uneven. You are twice as likely to have a stillborn baby if you are African American (US) or Aboriginal (Canada and Australia). Other women at higher risk include immigrants and women of lower socio-economic status.
  2. Globally, too many women lose their babies during labor, due to lack of access to trained birth professionals. Support initiatives to improve education for midwives in the developing world.
  3. Educate. Educate women about the risks. Educate women about the importance of health care in pregnancy and how to reduce stillbirth. In the United States, the biggest risks are smoking, obesity and maternal age (both older women and teenage moms have higher rates of pregnancy loss). We are far too afraid to say anything to women thinking about becoming pregnant, because they might be offended or scared. This taboo has to stop.

And one more thing. Join the campaign. #EndStillbirth

Last month the Lancet launched a special issue on stillbirth. The Lancet is one of the top medical journals in the world. It is read by health care professionals in every country, in every discipline. This matters. Over the next little while, I’ll be reading these articles in more detail, with a goal to making the research around stillbirth easier to understand for mothers like you and me. Together, we are a powerful group. Because today there are 2.6 million women who lost a baby in the last year, and our voices are strong.

This post first appeared on Still Standing Magazine.

Trusting Your Instincts

My son is a noisy breather. No big deal, right? But maybe he has enlarged adenoids, or maybe it is asthma, or maybe he stuck a little bead up his nose when I wasn’t looking. He’s three; they do that sort of thing.

Not the greatest picture, but here's me and my son, dressed as Captain America to get his flu shot. It was hard to hold him still and take the picture at the same time!
Not the greatest picture, but here’s me and my son, dressed as Captain America to get his flu shot. It was hard to hold him still and take the picture at the same time!

But you have no idea the amount of stress this is causing me.

For any other mother this is an easy decision. Trust your instinct! Take your kid to the doctor. Sure, it might be nothing, but at least you’ll know.

But I’m a mother who has lost a child, so this is not an easy decision. I don’t trust my instinct, because my instinct has failed me. Once I was in perfect tune with my children, so much that they were a part of me. With every breath I took in, with every heartbeat, my body provided them with nourishment. I could feel every hiccup. And I still didn’t know that inside me, they were dying. Not until it was too late.

So now when my children are sick, I don’t trust that I will know when it is serious enough to need medical attention. If I take them too often, will I be dismissed as the crazy woman who brings her kid in for every sniffle? Will my overprotective parenting scar my children for life because they were never allowed to just be kids? Or are they really sick, dangerously sick, and I just can’t see it?

My doctor reassures me. He reminds me that I am his patient too, so my mental health is important to him. He also tells me that often when a mother is talking about instinct, what she is really noticing is a change in her child’s behavior. This is what doctors focus on too. Is my son happy, playing normally, eating normally, getting into the usual mischief? Then he is either completely fine, or it isn’t something serious. Children who are very sick do not want to play, they do not want to eat anything (even cookies), they have trouble getting out of bed. My son doesn’t have any of these issues. He’s happy, he runs around like a crazy kid, he tries to jump off my furniture. I can relax.

Need a reputable source for health information? MedlinePlus is created by the National Library of Medicine and contains only health information and links that have been carefully selected by professionals. Another great source is KidsHealth.org, which is created by the Nemours Foundation and also contains great information written with parents in mind. Both these tools also have resources in both English and Spanish, and MedlinePlus has some information in other languages too. Both of these are better places to check instead of second guessing yourself with Dr. Google!

This post first appeared on Still Standing Magazine.

Working Together to Prevent Stillbirth

Earlier this month, I got the chance to attend the International Stillbirth Alliance conference in Vancouver, Canada. It was incredible! As someone who goes to scientific conferences occasionally for work, I cannot tell you often enough how incredible it was. First of all, it is very, very rare to have a scientific conference that is open to patients. Whether it is cardiology, or nursing or my own profession of information science, we talk a lot about the people we are serving, but rarely do we invite them in the room. This conference was different. About one third of the people there were bereaved parents. For one woman, her loss was over 30 years ago, but she wanted to be there to hear what research had changed in the time since her loss. For another couple, they lost their sweet baby just 7 weeks earlier, and it was obvious that the grief was still so raw and painful. I don’t think they stopped touching each other the whole time, because they knew that if they did, the other one would fall. But in truth, it was a bit of a lie when I tell you that one third of the attendees were bereaved parents, because it was actually higher. Almost every researcher began with “I’m Dr. X and I began researching stillbirth after my own child was stillborn.” The remaining third? Midwives, doctors, nurses, social workers. People who care for us every day, who need more insight into how to best care for parents of stillborn babies.

So what did I learn? Too much to tell you about in one posting, and I’ll be adding more as the research is published and I can delve into it further.

But one impression that stuck with me is the problem of blame.

As mothers, we often blame ourselves. Somehow we feel that the loss of our children is our fault. Doctors too often blame themselves, which is why you might feel they are avoiding you after your loss. They are! Even if there was absolutely nothing they could have done differently to change to outcome, they carry some guilt about the outcome. Sometimes of course, our defense mechanism is to blame one another. Doctors take the feeling of guilt away by looking at “maternal causes”, and we mothers take the feeling of guilt away by blaming our doctors for poor decision making. It came to a head in one poignant question for me, when a researcher was talking about how he found that obesity raised the risk of stillbirth. Even just being overweight raised the risk. He was wondering about how doctors could be better at having the conversation with women about their weight before they even become pregnant, and whether we should look at inducing women who have a BMI greater than 30 at 40 weeks, instead of waiting until 42 weeks. And one brave, powerful woman stood up, cleared her throat and told him exactly how hard it was to be an overweight woman who saw that this was a contributing factor to her son’s death on the autopsy report. Having patients in the room, working right alongside researchers, changes the way our stories are told, and changes the perspectives of the researchers.

It is so incredibly powerful.

Blame, both of ourselves and of others, is something we need to get past, if we hope to prevent future stillbirths. We need to embrace difficult conversations, so that every preventable death can be prevented. That can be hard, when the grief is raw, when the wounds are fresh. I’m so glad that ISA is committed to doing that, and to bringing us into the conversation.

Do you have ideas for how we can further the conversation, to work with researchers and doctors on preventing stillbirth? If your autopsy report listed “maternal factors” how does that make you feel? Should doctors be doing more to help women quit smoking, or lose weight, before they become pregnant? After they’re pregnant? Let us know your thoughts!

This post first appeared on Still Standing Magazine.

Unashamed

You’ve probably seen them by now. Artist and poet Rupi Kaur posted a photo series of herself and her sister in various poses, with their periods. In one, a girl is lying in bed with her back to the camera, with a small amount of blood leaking through her pants and onto the bed sheets. Instagram removed the photos because they violated their community guidelines and women responded with anger. “This is our life every month! This is our normal!” Instagram reversed their position and the photos were back.

 

When you are a woman struggling with infertility or recurrent miscarriage, your period is a powerful reminder of what you have lost. A period is more than an inconvenience each month, or a minor pain, or just something to be endured. Your period is a reminder that you have failed. This month, yet again, you are not pregnant. My period has come, this baby didn’t stick either. This month means waiting another month to see if you’ll have better luck. You start to bargain with yourself, with God, with your partner, with all the things you will do differently over the next four weeks. This time, I will try acupuncture, a different prenatal vitamin, more prayer, I’ll exercise less, I’ll exercise more…. This time, I will try sex in a new position, or twice a day instead of just once. This time, I don’t care if you have to work, the OPK says NOW NOW NOW. Each month, you are prepared to sacrifice more and more to the fertility gods to try and make it work. And your period coming at the end of that optimistic two week waiting period is just another bloody reminder of what a big fat failure you are (pun intended).

How can we learn not to hate ourselves, hate our bodies, hate our predicament as we try month after month? How can we get the courage to try again? Let’s start by sharing our stories. Let’s start by not being afraid of the stigma, and talking about our struggles, our bodies and the emotional impact this infertility journey has left on our souls. Like Rupi Kaur, let’s reclaim our periods and be unashamed.

This post first appeared on Still Standing Magazine.

Off With Her Head!

“Maybe you just can’t carry boys?” I was pregnant for the fourth time, this time with a daughter, and I think in saying this, she thought it would give me comfort. This time, my pregnancy was different. This time it was a girl. All I could think of was Anne Boleyn. She couldn’t have a boy either, and look what happened to her! Besides being plagued by multiple pregnancy losses (sources are not clear on whether she lost two or three babies), her failure to produce a male heir meant her husband arranged to have her executed. A high price to pay for being, in modern medical terms, a habitual aborter.

So is it true? Are there some women who just can’t carry boys? Maybe not, but recent research has confirmed there is a link between boy babies and stillbirth. Researchers at the University of Exeter looked at studies from around the world to see if there was a connection. They examined the numbers from 21 different studies conducted in 24 different countries, from Australia to Venezuela, the UK and US, as well as China and India. Overall there were over 30 million records.

And sure enough, the researchers found that boys are more likely to be stillborn than girls. This was true in every country studied, except for a couple where sex selection of fetuses is known to be an issue. The difference was about 10%, which means that male babies are 10% more likely to die before birth than female babies. Not a huge difference, but about the same as the risk caused by smoking. They don’t know why this might be the case, and the best they can come up with is speculation based on what happens in animals, where male babies are more susceptible to stress or the effects of a poor diet. Also, despite the huge study, there were some limitations to it. When searching for articles to include, they looked for articles that mentioned gender, so studies where the differences were unremarkable might have been missed. Also, they weren’t able to make a difference between stillbirths that happen before labor or during labor, which might have an impact.

So what does it mean for you? Maybe not much. If you lost a boy, it is cold comfort to know that his gender might have played a role. If you are pregnant with a rainbow boy now, the increased risk isn’t enough to worry about, and besides, you can’t make changes at this point anyway! And despite what happened to Anne Boleyn, there is no evidence that certain women can’t carry sons. Who knows what her next baby might have been, had Henry VIII not decided to have her head cut off? After all, once my daughter was born safely, I went on to have another pregnancy. A son. He’s 3 now and I think he turned out okay.

To read the study in full, it is free online. Find it at:

Mondal D, Galloway TS, Bailey TC, Mathews F. Elevated risk of stillbirth in males: systematic review and meta-analysis of more than 30 million births. BMC Med. 2014 Nov 27;12:220.

This post first appeared on Still Standing Magazine.

Mothers and Mothers-in-Law

I have written this post over and over again. I am struggling with what to say for Mother’s Day because this is not just about me being a mother, but also about my relationship with my own mother as well as with my mother-in-law. Losing Nate and Sam did not just turn me into a mother with no children, it forever changed how I relate as a daughter. And because of my loss, I can’t relate to my children’s grandmothers.

My mother-in-law has always wanted to be a grandmother. I think she even wanted to be a grandmother before she was a mother. She bought toys for my kids back when my husband was still in high school. Never mind that he didn’t meet me for another 20 years. Never mind whether or not we wanted kids or whether we could have them. She was ready for babies, dammit. And then Nate and Sam were born. And died. My mother-in-law was at the hospital with us, but she didn’t come in to see us, or see Nate and Sam. And I still can’t forgive her. When I am feeling charitable, I acknowledge that she may have been too devastated. That she was raised in a time when holding, cuddling and caring for stillborn babies was not done. That she might regret not having agreed to see them. When I am not feeling charitable, I am reminded that the nurses and social worker who encouraged me and supported my husband and I were there for her too. They would have been there, telling her how important it was for her to come in and say her goodbyes. But she still never saw them. And I am hurt and angry. To me, this was a rejection of my sons, and a rejection of our family. She was so eager and excited to greet them when they were alive, but couldn’t stomach looking at their perfect faces after they had died.

I am fortunate. Both my mother and my mother-in-law acknowledge my sons. Even though they have not experienced loss themselves, they know that I want Nate and Sam remembered. They know that they are forever part of my life and I am forever their mother. Not every mother is like that, and in research, other mothers have reported the pain of having their parents give little support. As one mother, when pregnant again after losing a baby, said:

“They’ve [the grandparents] all been very excited about this baby . . . but they don’t know how to react. They don’t know what’s going to upset me and they’re so afraid of upsetting me by bringing Derik up. But what’s upsetting is when he’s not acknowledged. They think it’s easier now, that we will push [away] the grief, our memories of Derik and just move on, which is obviously not the case. So that’s really difficult. His anniversary is coming up and last year we did a formal memorial. This year we haven’t planned anything and nobody’s inquired either.”

Another mother talks of how hard it has been with her father-in-law and his wife:

“My family [has] his picture up with all the grandchildren’s pictures. Steve’s mom’s house it’s the same way. But Steve’s dad and stepmom, when it was over it was over for them. They think it’s just awful that the girls even know about it. They don’t call on Davis’s birthday and even say hello. They’re just really strange. It can’t ever be talked about over there. Of course the girls do but they just ignore it. I think they mentioned to Steve once that we should take the pictures down and he said “No, its fine. It’s not that it didn’t happen.” They’ve never really said why they can’t deal with it. If I ever bring it up they just stiffen.”

How has your relationship changed with your mother or mother-in-law since losing your child? Will this change your Mother’s Day?

Quotes from other mothers were taken from: O’Leary J; Warland J; Parker L. Bereaved parents’ perception of the grandparents’ reactions to perinatal loss and the pregnancy that follows. Journal of Family Nursing. 17(3):330-56, 2011 Aug.

This post first appeared on Still Standing Magazine.

Your Mission, Should You Choose to Accept it

Still Standing is a wonderful resource, but sometimes you need to talk to someone in person. Reaching out online just isn’t enough. I recently had the chance to meet 60 wonderful women who are there for you when you need someone to talk to. The Pregnancy and Infant Loss Network is a volunteer organization here in Ontario that has in person support groups as well as one-on-one telephone support. They’ve been helping women for over 20 years and have grown from small beginnings to a large network of women (and a few men) across the province volunteering to help the newly bereaved.

These volunteers are some amazing people. Most have their own story of loss, and their own grief which they continue to cope with. Helping others through the process in turn helps them. By giving of themselves, they are able to share the pain, and this helps create meaning for their lives going forward without their babies.

In the early days after your baby has died, there is often such a huge physical ache in your heart, which talking to someone who has been there can help heal. Only another loss mother knows that ache, and is willing to sit with you while you endure those hard days. I am so grateful to those who once they are in a better place are prepared to help others in turn.

I’ve often thought this is our secret mission as baby loss moms. When Nate and Sam died, so many people, some of whom I’d never met before, came to welcome me into the sisterhood. Much of the reason I write for Still Standing is to let those who are new to the ‘club’ know that they are not alone and that there is life after loss. But in truth, I also do it to help myself. Writing gives me an outlet to talk about my sons and to continue to keep their memory alive.

If you are at the point where you’re ready to help another woman, reach out to someone else. You can do it formally, through volunteering with PAIL or another local area group. You can do it informally, through women you know who’ve had a loss or through women you’ve never met, through social media. And if you’re not there yet, still reach out to someone else. Call your local area bereavement support group or go to a meeting. Don’t just read this article, respond to it and let others know where you’re at in your grief.

This post first appeared on Still Standing Magazine.

Are There Cookies in There?

So how do you talk to kids about death? How do you do it in ways that are age appropriate?

Last Saturday, I heard Kimberly Thomson speak at the PAIL Network conference (more on that next month!). Kimberly is the National Director of Rainbows Canada. This organization is dedicated to helping children learn to cope with grief and other traumas. Her inspiring talk helped convince me that by talking to our children about their brothers, I am not harming them or traumatizing them. Being open and honest about death, the impact of death on our family and the place Nate and Sam hold in our hearts actually helps them learn to cope with all of life’s upheavals. Children who have faced a death in the family, and learned to cope with the loss effectively, often grow up to be more compassionate, caring and resilient adults. Whether you have living children or not, I encourage you to check out this great organization and their resources at rainbows.org. You can find Rainbows chapters in the US and Canada as well as Australia, the United Kingdom, Ireland, South Africa and Singapore.

First of all, you tell the truth. Kids are way smarter than we give them credit for.

Second, you answer their questions honestly. They won’t ask the questions unless they want to know the answers. If they are asking, it shows they have the capacity to understand. Remember, it is okay to show your own emotions. You can tell them you are sad. You can demonstrate you are sad by crying. All these behaviours are part of healthy grief. It is also okay to say “I don’t know.” “I don’t know why your brothers died. I don’t know what happens to us when we die, although my beliefs tell me it is something good, I can’t be more specific than that. It is also normal for them to be afraid of death. We all are, in some ways. We just try not to let that fear ruin everything else.”

My daughter is five. She knows about her brothers, talks about her brothers and understands the role they play in our family. She is a little confused about how they can be babies but still be ‘older’ than her, but then again, so am I. My rainbow son is only two. He pointed to his brothers’ urns and asked “Are there cookies in there?” I just said, “No,” and let him go back to playing.

When he asks me for more details, I’ll tell him all about his brothers.

This post first appeared on Still Standing Magazine.