Thursday, July 30, 2009


This week's blog post is written by Cynthia Prest, leader of the Madison, WI Share group. Cynthia has experienced six pregnancy losses and has one living son. She started a blog, My Yellow Brick Road has Potholes to chronicle her journey. Cynthia will be a regular contributor to Share Your Thoughts.

Anniversaries are best spent celebrating happy days – the day you met the love of your life, your wedding day, the day you graduated school, the day you began your sobriety. How do you mark the occasion of a baby who was never born?

Do you mark the day you found out the baby died? Do you consider the day on the calendar that the baby came out of you? What about the due date? Some of my babies miscarried naturally, while others were taken out the day I found out or several days later. Which date do I commemorate? I have struggled with this for six years. The only date that has ever felt significant to me was the date I found out the baby had died. So, here they are, documented in order and all together for the first time.

July 29
January 5
October 10
July 18
November 30
March 13

I don’t know what to do with these dates. The first anniversary of the death of my first child, I bought myself sunflowers. I thought that would be a nice tradition to start. I never did it again after that, and I’ve not done anything for the other dates either. Nothing ever felt right or like it would be enough. Then, there were so many that it became overwhelming. So, the dates pass with no fanfare, no cards, no flowers, no acknowledgment that my children ever existed. This brings me a tremendous amount of pain.

I decided after my son was born that since I was done having miscarriages I could have a piece of jewelry to mark their lives. I love to pick up a piece of jewelry whenever I travel somewhere, and all my jewelry (no matter how little the cost) has significant emotional value to me. So, jewelry it would be. I customized a necklace with the birthstones of the months of the three babies. I used the months I found out they died. Even though I had my son at that point, I was nervous to create this, wondering if it would cause me bad luck. What would I do if I had any more miscarriages? Of course, I did have three more miscarriages several years later. It’s hard for me now to wear that necklace. This necklace that I love so much sits in my jewelry box. I understand that it celebrates my first three children, but somehow it feels wrong that it’s not all of them. Unfortunately, since it’s custom made, the jewelry company can’t add stones to it now. I can only wear it on days that I’m strong enough to accept that wearing it doesn’t mean I’m not acknowledging my other children.

I finally decided some time ago (I think after the fourth baby died), that I needed to do something else to commemorate my children. I’ve heard a lot of ideas – planting a tree, putting a marker in Share’s Angel Garden, making a scrapbook. I decided to have large stones engraved with the dates and the gender (if I knew it) to place in my garden. I knew we’d be moving from our current house, so I wanted to wait until I knew the space they’d be going into at the new house before doing so. I thought having a memorial service with family and friends to lay the stones would be a nice way to celebrate their lives. We haven’t moved yet, so I’m still waiting. I think about these stones all the time – how big should the stones be, should I have a picture on them, the bench I should have placed next to them, what will they look like planted all together, whether they will bring me any peace. It gives me something to look forward to. It’s painful to not have a place where my babies are buried, to not have had a ceremony or an obituary marking their lives. It’s as if they never existed. They reside only in my heart, and that has to be enough.

Friday, July 17, 2009

Potholes of Grief by Rose Carlson

Earlier this week, I was reading the latest edition of the BPUSA (Bereaved Parents USA) newsletter that came to our office. For those of you who may not have heard of BPUSA, it is an organization that provides support to parents who have experienced the death of a child of any age. It is a national organization with chapters all over the country. I really enjoy reading this newsletter, even though the organization doesn’t specifically serve those who have had a baby who died as Share does. I always find that the stories, poems and quotes in it are universal to anyone who has lost a child, no matter what stage of pregnancy or life.

The other day, an article caught my eye because a box within it highlighted a quote from the article. It said “The best way I’ve found to deal with the potholes of grief is to just let them happen.”

Potholes of grief. That intrigued me, so I read the article. The author, Margaret Gerner, a social worker, talked about how out of the blue, random things such as songs on the radio take her right back to when her son died 26 years ago. She calls them potholes of grief because potholes are bumpy yet shallow places in a normally smooth road. She compares potholes to the grieving moments after the death of a child that come after you have “resolved” your grief, or think you have anyway. (Because, really, it’s a grief that is never completely resolved.)

I thought when I was reading it how the potholes you encounter while driving down the highway, blissfully unaware of the jolt your car is about to be subjected to, is a perfect analogy to the situations you often encounter after your baby has died, sometimes years later.

She didn’t write this, but I couldn’t help but think as I read it that just as potholes in the road come upon you suddenly and without warning, so do the potholes of grief. You finally get to the point where you are just happily tooling along the road of life, maybe thinking that you have dealt with all the really hard stuff, when all of the sudden you hit a hole. A hole you probably weren’t expecting, that jolted you out of your reverie of thinking you were fine, that you had dealt with your grief. That hole might be a song on the radio, a family event, or some other milestone. Whatever it is, it probably takes you by surprise at a time when you weren’t expecting it.

The next time you drive down that same street, the pothole may have been patched over and your car drives over it without so much as a bump. The same thing can happen with the potholes of grief. Depending on what is going on in your life at the time, the same situation may not have nearly the same impact.

I hit a pothole today.

It’s been many years since my losses. Sixteen since the last one. I’ve had three children since then. And hit many potholes along the way. I didn’t think of them as that at the time, but I like that description! I like how she describes them as shallow places in a normally smooth road. They are defiantly not like the deep pit you sometimes find yourself unable to crawl out of when your grief is so new, fresh and horribly painful. While potholes do hit you unaware, the pain is usually short-lived, and often, potholes of grief aren’t even painful…they are simply memories that take you by surprise with their intensity.

There have been many times, too numerous to recall, since I’ve worked at Share that I have encountered potholes in the form of situations that are so close to my own that I sometimes have a hard time talking to the mom on the phone; or reading a post on the message boards; or seeing a picture. There have been many times that a bereaved parent has called who is in a situation that is so similar to mine that takes me back, takes my breath away…today was one of those days.

There have been other times that even though the situation was similar to my own, I barely gave it a thought. I’ve learned to just go with the flow and if it is a situation that is upsetting to me for some reason, I have gotten to the point where I can realize that there is a reason why this particular person’s story had that affect on me at the time. I told Cathi about it one time after such a call, and she told me to look at as being my babies way of staying connected with me, that for whatever reason, I was supposed to be thinking of them that day, and that was their way of making sure I did. I like that thought.

So today, a mom called our office whose loss was so similar to one of my own, that I had a hard time knowing how to respond at first. Similar right down to the month she found out she was pregnant, the month she miscarried, and the month she was due. One of the reasons she was having such a difficult time is because she had just recently passed her baby’s due date.

I don’t usually share my own experiences with those I talk to on the phone at Share, but as we were talking, I realized that in a week, I will experience the due date of one of the babies I miscarried. While I’ve had four losses, this one, my third, often hits me the hardest because it was the only one I saw the baby on ultrasound. Also, this baby was due on my great grandmother’s birthday, July 25, and from the time I found out I was pregnant, I thought that was a good sign that everything was going to be okay. But it wasn’t, and I miscarried at 12 weeks. I had another miscarriage at 10 weeks four months later, and I always remember that time of my life as one of the hardest, most challenging times I’ve been through.

So back to my thoughts about potholes…like I said, it’s been many years since my losses….24 since the first, 16 since the last. Many years of small bumps in the road of life…many years of potholes, some bigger and more jarring than others, just as potholes on the highway are. I used to have a hard time dealing with them, wondering what was wrong with me. Since I’ve worked at Share, I’ve stopped wondering what is wrong with me and started accepting that sometimes, situations are going to come up that take me back to those hard days and weeks and months.

Today was a bit different. The baby that I miscarried who was due July 25 would be turning 16…a milestone that I know from the past kind of “got” to me. So while I was talking to this mom on the phone, I was thinking about that baby. And a funny feeling came over me…in the past, when I’ve been in similar situations, I have a difficult time knowing what to say. Today, though, I was on a roll! At first, I didn’t know what to say. Not only was I thinking of my own loss, I was thinking how ironic it was that I was the only person in the office at the time, how on a normal day, any one of four other people would been there, and I was thinking that for some reason, I was meant to talk to her.

After my initial feeling of not knowing what to say, something clicked, and by the time I hung up, she told me she was so glad she had called and said how much I had helped her. Many times, when I talk to a bereaved parent on the phone, I hang up thinking I really did or said nothing that was at all helpful. I’m not alone in thinking that as my co-workers at the Share office often say the same thing. I think it’s because we all want so badly to BE helpful that we worry and wonder if we really are.

But today…I hung up feeling really good, honestly, better than I have ever felt after I talked to a bereaved parent on the phone…like I really had accomplished something. I didn’t say anything that magically made her sadness and pain disappear. That is impossible to do.

Margaret Gerner wrote in her article, “They (potholes of grief) are a sign that your loved one is still in your heart and, no matter how much time passes, you will always miss him or her.” She also says, “Occasionally, there are pleasant memories that bring us a feeling of warmth.”

Today, I had a feeling of warmth. And while the memories of all those years ago is not pleasant at all, and no matter how many years go by, never will be, it was pleasant to feel the presence of a tiny little soul whose spirit was with me and helped make someone’s burden a little bit lighter.

Monday, July 13, 2009

Fear Is a Barnacle by Cara Tyrrell

Fear and Grief. They are a team. The worst kind - a tag team. They surrounded me when Emma died, consuming every part of my being. When one rested the other swept in, rejuvinated, more than able to keep me wading in a broken- unable to function - place.
My grief has morphed, evolved, shape-shifted. My life is filled with moments. Most of the time I can tell her story without crying. I can feel her presence without falling to the floor. I can love my angel baby without my heart repeatedly self-destructing. To support my growth, I take affirmative action to ensure the our daughter - our beautiful Emma Grace - is remembered always.
In a recent post I said I would, "go back", but the joke was on me. I didn't need to. My fears are still here, quiet - stealth like, but part of me forever. They took permanent residence within the marrow of my bones, waiting for their chance. They attacked on a Sunday morning.
The girls, all four of them, had gone to bed without any trouble - two in one room and two in another. Sure, I heard some talking. The youngest had to use the bathroom, get a quick drink of water, and "check" her sister's middle of the night flashlight to be sure it was working. But, all in all, a very smooth bedtime routine considering we had three additional kids in our house on a Saturday night.
The baby, after a very stimulating and napless afternoon, had passed out early. At 6:00 I snuggled him in, read a book, surrounded him with all his familiar bedtime paraphanlia and sang as I walked out my bedroom door. The monitor was on full blast. We never heard a peep. That boy was tired!
"Well" I said to my husband, who looked equally napless and wiped out after pulling four giggling girls on a sled around our rather large field multiple times, "He'll probably be up at the crack of dawn." We were quite mistaken.
At nine o'clock I tiptoed around the pack-n-play at the base of my bed. Snuggled down under the mountain of covers necessary in an old farm house in mid January, I listened. It felt so good to have a baby in our room again. He talks in his sleep, sometimes sings a little I think. For the first two hours, I was in and out of a light slumber. I tossed when he tossed. I turned when he turned. I lay still, listening to the rustle of flannel sheets moving against the mesh sides of the portable bed. And then, I slept - until 6am - (the formally referred to "crack of dawn"). Caroline's four-year-old elephant feet thumped down the stairs. Tip-toeing past the sleeping baby I stopped for just a moment to take in the sight. The peaceful slumber of a 1 year old is a sight to behold.
That's when my demons jumped out. You better check and see if he's breathing! I scoffed, Of course he's breathing. And yet, gripped by an irrational fear, I checked. The baby slept.

I peeled hard boiled eggs. The coffee maker buzzed.

The baby slept.

I made scrambled eggs. I drank my coffee.

The baby slept.

The girls pounded around on the hard wood floor, doing a morning rendition of our chicks moving in their tiny coop.

The baby slept.

I took out the "you can only play with these when the baby isn't here" toys for the girls.

And still, he slept.
Fear attacked again. I tried to fend off his advances, but he was too strong. He played dirty.
You better go check on him again. His head was tilted into his blanket, just a bit, wasn't it?
I'm sure he's fine. Had a long day. He's just tired!
You don't know that for sure, do you? I guess not.
What if you let him sleep and then it's too late? What if you get up there and he's still, beyond help. Oh Cara, It's bad enough that you let your baby die without taking action, but you may have killed someone else's. GO. GO CHECK NOW!
I ran up the stairs, panicked, a feeling of dread in the my chest that hadn't squeezed me for so long. I couldn't get there fast enough. I was now sure that there was something wrong - that I had missed my chance to save him. That our friends who are so particular with who they entrust to watch their children would feel the same fear and despair that I have for the rest of their lives. That they would never again be able to look at me with with any semblance of respect.
No longer caring about noise levels - I pushed the door open and, with fear looking over my right shoulder and grief on my left. I peered into the crib.He lay still - with eyes wide open. At the sight of me a huge grin grew on his perfect little face. "Aaaa" he said, not attempting to sit up, just smiling up at me. Brushing off my shoulders, I reached down to meet his upright arms.
He is fine. I am forever haunted.