Monthly Archives: July 2018

What not to say.

I found a wonderful site for loss moms, Stillmothers.com. It is full of blog posts for varying mothers all writing about their stillborn children. One mother, Sue Dagg, wrote this amazing piece on what not to say to a loss parent.

I know we all know what is obviously not to be said, but a lot of time people are trying to mean well and ending dealing out more hurt (I’ve been a recipient of this, see my post “the M word”). So please read this so you can help your friends, not unintentionally hurt them further.

By Sue Dagg

We need to talk. No, not you, new Loss Mother and Loss Fathers. You focus on whatever gets you through each moment. I need to talk to the people surrounding you as you navigate your shock and grief. I want to give some advice that could save Loss Parents additional sadness, upset and alienation. I’m going to be direct and I’m going to be a more than little bit abrupt- but since I know you have your heart in the right place then (if you listen), I’m going to be helpful.

No comfort ever comes from those who say “At least”.

Seriously. If you ever find your mouth opening to say these words, please just shut it again. While you’re thinking through what to say, just give a hug or take a deep breath or something. I’ve learned to mentally brace myself when I heard a sentence start this way.

“At least you found out you were able to get pregnant”

“At least you were able to meet your daughter and spend some time with her before she died”

“At least you’ll know and be monitored better next time”

I know you’re trying to comfort or cheer this person up, because they’ve experienced something so enormous and horrible. I know you mean well, and would like to think you’re doing good. You’re not. Nothing can ‘cheer up’ a person when their baby has just died and trying just makes a mockery of their experience. Resist the urge. At best, you’ll be ineffective; at worst, you’ll imply that their pain is unwarranted, thereby offending and upsetting the grieving parents.

I can tell you from this side of the fence that your ‘at least’ comments make me take a step back from you. It’s upsetting that you shut down my sadness when I try to share it with you. On my worst days, my thoughts turn nasty; “If you think that holding my baby in my arms a few times is a good exchange for her being dead, you clearly have no human emotions”. On my better days, I understand your motives, and try to help you to manage yourself better; “Wow, this person is really uncomfortable with strong emotions. Quick, pretend you’re fine so that they don’t feel so awful”. I assure you that any ‘better’ is just pretend and for your benefit alone.

Why is it so terrible? Well these ‘at least’ comments can be great points that sometimes bring me comfort when I’m ready to consider them myself. When you say them to me though, they tell me that you don’t recognise my need to grieve. That you think I should be able to lift my chin up, pull myself up by my bootstraps and get on with things because they’re not so bad after all. Your words tell me my feelings aren’t valid, that the event wasn’t so awful after all.

When someone shares their grief with you, they’re not ready to see a silver lining, they need to express themselves. Please don’t shut them down.

Whatever you do though, don’t turn to, “You’re so amazing to cope with all of this. I couldn’t do it”. Without meaning to, this phrase implies that either you love your children more than the grieving parent (because you couldn’t cope but theycould) or…what? If they didn’t cope, what would happen? Their heart would cease to beat? They’d try to end it all? Trust me when I say that the person thought their heart would stop beating, and probably wished it had. You’re not helping by suggesting that their life should have ended when their child’s did- and that’s what you’re inadvertently saying. Don’t go there. No praise is necessary for coping with an experience that was forced upon someone.

So now that we’ve established that you should never, ever, (ever!)  tell someone ‘at least’ regarding any type of grief or loss ever again, what should you say? Actually, it’s exactly the opposite from what you might expect. The best thing you can often do is to acknowledge the situation fully, and allow them to confirm that in their own words.

That’s just totally and utterly crap. I wish you didn’t have to go through that

What a terrible experience. How are you?

I can’t even grasp the magnitude of this. It must have been such a shock to you.

That’s so awful, I just don’t even know what to say

Just make sure you’re willing to hear the person’s answer if you ask how they are, and let their grief be expressed; don’t try cheer them up. Even better, ask about their child. Almost no one wants to forget their baby, and if they don’t want to talk about him/her, they’ll make it clear. Try asking about their name, their birth weight and length, whether they were able to spend any time with the baby. If you feel comfortable, you could ask if there are any pictures that they like to show; be aware that this might possible be a picture of a baby who has already died, but these parents are often as proud of their baby as any other parent and dying to show pictures of how their child had Mum’s nose or Dad’s forehead.

Put yourself in their shoes for a moment: though you desperately want to discuss and share your child with the world, no one has ever asked you about how your baby looked, refuses to look at photos and is offended if you try. This is heartbreaking, and my best memory of telling someone that Emily had died at a few weeks old is of a woman who said to me “oh, she sounded tiny! Do you have any photos?”. She made my day and for once I felt normal.

Finally, if you don’t feel comfortable with any of the above, or you’re not in the place for this type of conversation, just rely on the favourite of many: “I’m so sorry to hear that” and move on.

Cooper Project

After I lost my sweet Nyla Rose, One of the social workers at the hospital handing me a card with a little blue whale on it and the name “Cooper Project.”

It was a local mom who had experienced a similar type of loss, and turned her grief into an Etsy shop that carried necklaces for loss moms. She offers local loss moms a free one. I got one with Nyla’s name and birthday.

I wore that necklace all day every day until I had worn her name off of it. Not much provided any kind of relief or feeling of security after holding my sweet baby girl in my arms the last time. This necklace did. I felt like she was with me.

Please check out her shop even if you are not a loss mom, she has many other beautiful necklaces and all the money goes toward providing local loss moms with a free necklace.

https://www.etsy.com/shop/TheCooperProject

Also on Facebook and Instagram

Journal Entry 2

This journal entry was about 6 weeks after Nyla’s birth. I think it is one of the more powerful entries I wrote.

“I held my daughter’s things today. I don’t know what prompted me to, I was just sitting on the bed.
I walk by her stuff every time I pass in and out of the bedroom as they are in one of those plastic shelving units by the door. I don’t know how to feel about all of her things fitting into one single drawer. It’s strange to me that she even has “things” as she was here for such a short time.
I remember coming home from the hospital and shoving all of it into that drawer thinking “What am I supposed to do with this? How long am I supposed to keep it for?”
“Whatever the reason, there I was sitting on the bedroom floor holding all of it. Her tiny little cloth diaper made out of pink fabric with hearts. The hand knitted pink hat with a rose on it, the glitzy butterfly clip that was on my room number so that everyone who walked in knew Nyla had passed. There was a pink teddy bear that some charity supplied the hospital with. I sat there and held it, realizing that it was bigger than Nyla was. Hospital bands, footprint cards, blankets, discharge paper–I kept it all. I haven’t even washed the blanket they first wrapped her in after she was born. There is still dried blood on it–hers or mine I don’t know.”

“Its strange to not be pregnant. I should be about 27 weeks now. Instead I’m smelling her things hoping for a whiff of hospital to remember her by.”

Journal Entry 1

Shortly after I lost my baby girl Nyla, a longtime friend sent me a care package. It was filled with a loving note, little snacks, some funky socks and a journal. I took that journal and started writing. I haven’t written in it since this time last year, but I wanted to share two of the entries I wrote in the aftermath of my daughter dying. Below is #1.

Hemmingway said ” Write hard and clear about what hurts.” With that quote in mind I wrote this about Nyla 2 months after she passed.:

“What hurts? All the weird little shit no one thinks about.”

  • Seeing my flat stomach not bulging with my child.
  • My dog perking up when he sees kids…he will never see mine.
  • Eating sushi, lunchmeat, or drinking a beer-I shouldn’t be able to do that right now.
  • Wearing “that shirt” that I haven’t worn since I was pregnant.
  • Nick still sleeping with his hand on my stomach.
  • Putting a new birth control patch on every week.

Everyone warns you about that one song that comes on the radio, or always finding one more person that didn’t know what happened. Seeing other people announce pregnancies, or pictures of their smiling little children.

But every person that has lost a child knows that there are your own little things that get to you. They fade over time, but while they are fresh, they tear into your soul and make you relive the trauma all over again.

Read this.

I want to share this post that I found on another site because I believe it puts grief of child loss into perspective for people that have never experienced it–and I hope to God will never have to.

WHY WE WILL NEVER GET OVER IT

Unfortunately bereaved parents get judged often. By those who know us and by those who don’t.

We are often criticized and pathologized for grieving (for remembering our child.) People erroneously think we are stuck, depressed, and/or clinically-something, if we still cry, ache, and miss our child; if we still remember them; if we continue speaking their name and grieving for them– especially if the grieving has been going on “too long.” Too long could mean 3 months, 6 months, a year– a decade, or longer. It couldn’t possibly be healthy to grieve THAT long, right?

Wrong. We will grieve forever because we love forever. There is no end to our love for our child, therefore there is no end to our grief– not in our lifetime, anyway. We will grieve forever. We will never get over it.

The presumption is that since our child’s death happened years ago– a presumably finite event– how are we not over it by now? As if child loss is something you can get over– likening it to something far less horrific that can be conquered if you only try hard enough, think positively, or pull yourself up by the bootstraps. As if it’s a hurdle you can easily jump over, or a roadblock you can simply go around and then move on. As if sunshine, rainbows and unicorns will magically greet you once enough time has passed and you cross into “I’m-over-it” land. This may work for other things, but not child loss.

It’s time to bust a long-standing myth about child loss and grief. There is no getting over it. Child loss is not something you get over. Ever. You don’t get over watching the living, breathing piece of your heart and soul, your flesh and blood, your child– die. It’s simply not. possible. to get over the death of your child. You will grieve the death of your child until your last breath.

It is said that the decision to have a child is “to decide forever to have your heart go walking around outside your body.” When your child dies your heart is obliterated, broken beyond repair. When your child dies, a huge part of you dies, too. And there is no getting that part back again. Over time you can try to put the pieces of yourself back together again, but they don’t fit the same. There are huge pieces missing, no matter what you do. No matter how long it’s been.

The pain– visible or not– is with us every breath and every step we take, every second of every day. The scars never heal. We are not defined by child loss, but we are certainly marked by it. Forever.

Normal died the day our child did. There is no guidebook for how to survive, or how to grieve. No formula. No roadmap. No start here, end there. The truth is bereaved parents will grieve the loss of their child until their last breath. It may seem confusing why bereaved parents do the things we do; how we’ve chosen to survive and navigate life post-tragedy. From outside of grief, it likely won’t make sense to an onlooker. The good news is, if you don’t understand, breathe a deep sigh of relief and remember one thing: you’re so fortunate (#blessed/lucky/_______) you don’t.

Ultimately to understand means to be bereaved. Which we wouldn’t wish on our worst enemy. We hope no one else truly understands. Ever.

We would have given our life one million times over + infinity to save our child– but, unfortunately we weren’t given that choice. And so, for the rest of our lives, we have to learn how to live with the pain. A pain that is so excruciating, so much like torture, so unimaginable, there’s not even an apt word for it in the English language.

We trip over grief just when we thought we had it contained, figured out, put away, managed. We fall into grief potholes when we least expect it.

We become adept at carrying it, stuffing it, hiding it places. It leaks from our eyes when we least expect it. We sob in the shower, the car, on the bathroom floor. We dry our tears, put our masks back on, so we can move and be and live in the world, to the best of our ability.

Grief steals the person we used to be, and we grieve that, too. The person staring back at us in the mirror becomes almost unrecognizable. We wish we could be who we used to be, too.

We are broken, but there is no fix for our heartache.

We carry it with us, always. Grief exhausts us to the bone. There is no reprieve. No minute, hour, or day off from being a bereaved parent. Once a bereaved parent, always a bereaved parent. There is no going back.

Even during happy or joyful moments, the pain and sadness is always there. A permanent undercurrent, a pulse of pain.

We learn how to carry it all: the joy, the pain, the love, the sadness. Eventually we become an expert at carrying it all.

The moment our child died is now, yesterday, tomorrow, forever. It is the past, the present, and the future. It was not just one finite horrific moment in time that happened last whenever. It is not just the moment, the hour, the second, the millisecond our life became permanently divided into before and after.

You might say, “But she died last year!” Or 10 years ago, or five. No. No, she didn’t.

Our child dies all over again every morning we wake up.
And again every moment they are (yet again) missing.
And again every moment in between.
And again every breath we take.

Our child dies again every moment they are not here with us– for the rest of our lives.

The truth of this fact is almost impossible to express. How many deaths can one parent endure?

For the rest of our lives we will struggle to accept and understand this very fact: our child is dead. And in the incessant replay of our minds our child will keep dying all over again for the rest of our lives.

This is child loss. It is never over. It is always happening. Again and again and again.

We live and relive it. It is now, yesterday, tomorrow– forever.

Just like our love for our child is now, yesterday, tomorrow, forever. It spans both directions. There is no end.

Please remember this next time you hear someone tell a bereaved parent they are dwelling, stuck, depressed, not moving on; that they should just hurry up and get over it– or any other common judgment or misconception. Our pain, our love, and our child cannot be watered down to such phrases, such shallow summations. It does not even begin to capture or express the reality of our day-to-day lives, nor the eternal ache and love in our hearts.

To understand child loss, you have to think about every second, minute, hour, day, month and year a bereaved parent has to live without their precious child– a lifetime— not just the finite moment in time their child died. Every missed milestone, every heart beat, every breath without them, hurts. It hurts now, now and now. It will still be painful 10 and 20 years from now. It will remain an ever-present ache in our heart, soul, mind and body always– until our very last breath.

Child loss is never over. It is a loss that spans a bereaved parent’s entire life.

This is why we will never, ever, get over it. Because “it” is our precious, irreplaceable child. There is no getting over it. There is only love (and pain) to be bravely and courageously carried– for a lifetime.

Credit: https://www.facebook.com/grievingmother/?

In the beginning…

October of 2016 I miscarried my 5 week pregnancy.  I understand that many people don’t consider 5 weeks an actual human, but I do. I was devastated. I wanted that baby more than anything. I named him/her “Riley”.

I got pregnant again right away. By Thanksgiving I was pregnant and everything was going well. I was sick as a dog with morning sickness, but everyone told me that just meant I had a healthy baby. My bad luck had already passed miscarrying Riley, so everything was going to be fine. All the ultrasounds were great, she was a little jumping bean. I started showing really quick. Everyone told me she would be a big baby. I knew she was a girl. Somehow, I just knew. My stubborn husband kept holding out hope she was a boy.

About a week before the gender scan I kept having nightmares that my baby had a heart problem. I reassured myself that nothing was wrong, no heart conditions ran in either my husband’s or my family.

We discovered my beautiful daughter Nyla Rose had a serious heart condition at the 20 week anatomy/gender ultrasound. The condition was hyperplastic left heart syndrome. I’ll never get those words out of my head. In lay terms, she had half a heart–the other side did not develop. It’s actually not considered fatal. It would just involve countless hospitalizations, surgeries, and an eventual heart transplant..if she made it that far. They couldn’t even say with confidence to me that she would survive the rest of the pregnancy. Her aorta and flaps had complications on top of the syndrome.
They were telling me that she would be blue in the face for a year or so until her lungs caught up, she would have some sort of developmental or learning disability. Her immune system would be shot. She would spend her childhood in and out of the hospital with surgeries, therapy, and every time she got sniffles. If her condition deteriorated then there would be nothing to do even if she survived to full term. Surgery wouldn’t be an option. She would be put on comfort care when she was born (if she survived the actual birth itself). If she did survive, and her condition was stable, her first surgery would be a week after she was born. There was a 20 % chance she would survive that. Then more surgeries would follow in the next 5 years if she was still living. Her percentage of survival only went up 10% every time. This was all just buying time till she could withstand a heart transplant.

My husband and I made the hardest decision of our entire lives. We let her go. In medical terms, we had an abortion. That is such a cold, harsh word, and I refuse to use it. It makes it sound like I didn’t want her. That she was an inconvenience, or too much work. NO. We let our daughter go to heaven. I went into the hospital, was induced, went through labor, and gave birth to her. She was beautiful. Fully developed outwardly. She had big feet like me, and a big forehead like my husband. She had eyelashes and fingernails. We held her, bathed her, dressed her. His family came and saw her, took pictures with her. I held her little lifeless body all night, sobbing. In the morning, we had her cremated, and her ashes are in a necklace that I wear around my neck everyday. I spent the next week sobbing and wondering why I bothered to stay alive.

That was a year ago. I went to therapy, got back on my antidepressants, got a new job, moved, and went forward with my life. I drank myself under the table most of the summer. It was easier that way. I didn’t have to think about how I was supposed to be carrying around a little girl, breastfeeding, snuggling. I drank myself through her first Halloween, Thanksgiving, Christmas. It wasn’t easy. It took a lot of therapy and work to be able to live again.

My heart goes out to all the other lonely mamas out there ❤

The M word.

Miscarriage.

Any woman who is pregnant, trying to become pregnant, or has lost a child shudders hearing this word.

I believe that it is something that most women don’t think about until it happens to them–and none of us think it will happen to us. It’s just something that “poor other woman” experienced.

My mother suffered 2 miscarriages. Many women in my childhood church had as well. My next door neighbor. I was no stranger to the possibility of it, but never imagined it happening to ME. Even the OBGYN doctors don’t really talk about it–til it happens.

I don’t think it is not spoken about more freely because it is a taboo topic, but because no one wants to think about it happening. Let’s be honest, do you want to talk about a dead child?

Now here I sit on my couch. Its quiet.  No children making noise or distracting me from writing. As much as I enjoy these quiet moments, I would trade them in a heartbeat for the 2 kids I should have running around and being noisy.

Most of this blog is centered around Nyla Rose, not my first pregnancy with Riley J. I used to feel guilty that I didn’t think about Riley as much. I had to let that guilt go, Nyla was such an emotionally, physically and mentally traumatic event right on the heels of loosing Riley that I never really got a chance to grieve.

That doesn’t mean I love Riley any less, or that I wouldn’t trade my life to have him/her back.

I knew I was pregnant with Riley for 5 beautiful days. Nick and I had been trying and I got pregnant pretty quick, I had only stopped birth control 2 months previous. I was so excited. I called friends and Nick told the guys at work. I had the little tracking app on my phone telling me what part was developing every day. Riley was growing ears that day that I miscarried.

I remember getting up that Friday morning for work and heading to the bathroom. That’s when I saw the blood. Not a lot, but not just a little bit either. My stomach sank. My OBGYN reassured me it could be “implantation bleeding”, and I was going for bloodwork that day anyway to check my HcG levels. They would call me later.

All the girls at work assured me it would be fine, but I just had this heavy feeling in my stomach–I knew something was wrong. I put my hand on my belly and whispered “hold on little one. Just hold on.” I went home from work and took my dog for a walk. It was past 5pm with no call from the doctor. I called the on-call provider and explained nicely that I NEEDED the results of the bloodwork. I paced around my apartment till my phone rang. To be honest, I don’t even remember what was said, I just remember sinking to the floor, tears pouring out of my eyes. My hand was on my mouth so I stifled whatever sounds I was making since I was still on the phone. The one phrase I do remember is the doctor saying “If you hadn’t tested, you would never have known.” I guess she meant those words as comfort, but I still to this day think in my head “But I DID test. I DID know. So how the fuck is that supposed to help me?”

Unfortunately, miscarriages are common. I have two friends that have each experienced one within the past 2 months. But it fucks you up. Make no mistake on that part. You spend the rest of your days thinking “what if?” No matter at what stage you lose your child, you are faced with the gut-wrenching, seemingly endless torture of grief.

Just know that if you have ever experienced a miscarriage, it is not your fault. You loved and wanted that baby. Her or she will be a part of you forever, and you will always be a mother.