A Weekend of Grieving, Healing and Finding Hope

By Cynthia Prest

What am I doing here? This is hard. I don’t want to be here. I should leave. I could walk out, get in my car, and drive back home.

I was thinking this a half hour into the Share Group Leader Certification Workshop. I had planned this weekend for months, paid the fee and travel costs out of my pocket to attend it, and driven alone for six hours from my home in Wisconsin to St. Charles, a lovely city on the outskirts of St. Louis.

The retreat is a biannual training the National Share Office provides to aid those who work with bereaved parents. It’s an invitation for support group leaders, hospital chaplains, social workers, counselors, nurses, and bereaved parents to gain tools and resources to effectively work with families and hospital staff.

There were 25 of us there, and the majority of us had personal experience with perinatal loss. The workshop began with introductions, sharing our reasons for being there, personal stories, and names of the children we had lost. As we went around the table, I began reliving the losses of my children. I didn’t know how I was going to survive the next three days. I willed my body to sprout tentacles that would wrap around my chair to keep me in place.

The remainder of Friday was spent learning about the grief process, the special needs of children dealing with grief, navigating difficult decisions parents are faced with when a pregnancy isn’t going well, and understanding how cultural differences impact grieving. The presenters were gracious, understanding, compassionate, and knowledgeable. We were introduced to the Glen Davidson model of grief: shock, searching, depression, reorganization, and shadow grief. We learned that all of the difficult emotions associated with each of these phases is completely normal – devastation, questioning, guilt, jealousy, anger, helplessness, confusion, longing, and hope. You may think you’re the only one who feels these things, but you’re not. Through my journey of grief, I’d come to understand this, and it was validating to hear it from experts.

The first day was full of getting to know one another, learning new concepts, and reinforcing known ones. There were tears as we heard one tragic story after another of babies dying before their time. Our grief was raw, and it was shared. Knowing everyone in that room was holding me safely in the palm of their hand was the only thing that kept me there that first day. I had come down with a cold and was happy to retreat to my hotel room in the historic district to relax, knit, and surf for escapism television shows. I was grateful I survived the first day.

Saturday morning began with a presentation on complicated grief. I had never heard this term before and felt the need to comment, “Isn’t all grief complicated?” What I learned is that early pregnancy loss and stillbirth grief is complicated for a variety of factors: no one knows the baby’s existence except through the parents, the parents had hopes and dreams known only to themselves, those experiencing this kind of loss are unprepared for the emotional pain, it may be one’s first experience of personal loss, and there’s a social stigma associated with it.

We learned there is a distinction between grieving and mourning. There are three events associated with grief. Bereavement is the event of the loss, the death of the baby. Grieving is the internal expression of the bereavement event. Mourning is the external expression of the bereavement event. If you don’t recognize the bereavement event, engage in grieving, and then move into mourning, you get complications of grief, which can include depression, anxiety, and an impairment in daily living.

As I listened to the presenters talking about their own losses, the other participants share their experiences of losing their children, and saw how they had memorialized their babies, I felt cheated. My babies didn’t have names that I could write in remembrance on my name card. I didn’t have footprints of my children I could have engraved on a charm. I didn’t have pictures of my babies of when they were born. I felt a sadness that choked me from the inside out as I realized I had not mourned my children. My husband and I chose to not name our babies because it didn’t feel right at the time. I had not wanted to plant trees in their memory because we might move one day or the tree might die, and that would be like the loss happening all over again. I had never felt right about any of the ideas I heard other parents did to remember their babies. Throughout the course of the afternoon, it occurred to me why I was stuck in my grief. My babies didn’t have names. The fundamental right a parent has when they have a child is to name him. All people have names – it’s part of what makes us who we are. I realized I needed a way to refer to my children, to myself and to the world, in a way that is unique to each of them, other than “the first baby,” “the second baby.” I did something that afternoon that I still find extraordinary, and as if something or someone had awoken inside me and was using my hand as her instrument. I pulled out my journal and I thought about those children. I thought about the dreams I had for them, the lives I planned to provide for them, the birthdays I wanted to celebrate with them. I wrote names for our children. I thought about the day I lost each of them, and I wrote the first name that came to me.

I held this secret within me for the rest of the day. I waited patiently for the right time to share this transforming moment. After the workshop ended for the day, a group of us visited Share’s Angel of Hope, a beautiful statue where parents can lay bricks inscribed with their baby’s name, birth date, or a message. We then visited a cemetery where the owner has dedicated an area for babies who were miscarried to be buried. I was touched by his generosity and saddened for those he can’t reach. If only this was available to all parents in every city around the globe. We walked among gravestones for children who had died later in pregnancy or during early infancy. I was touched to see how their parents decorated each of their gravestones to reflect their uniqueness. After an exhausting, emotionally draining day, we went out to dinner and got to know each other even better. I was humbled to be surrounded by such strong, intelligent, gracious people.

Sunday was the day I had been waiting for, the topics focused on how to organize and run a support group effectively. I have been involved with Share for five years, but felt I needed more tools on how to organize and facilitate a group before embarking on the responsibility. I got many ideas for topics, advertising, activities, and taking care of myself so as to not become overwhelmed with it all. It invigorated me, and I couldn’t wait to get home so I could put all the ideas in place.

Before we left, the women of the National Share Office invited us to take part in a ceremony. We were asked to leave the room so they could set up. We chatted in the lobby of the conference center for several minutes, remarking on what we had gained and what was next for us. When we returned, the conference room table had been transformed with a candle, booklet, and certificate at each of our places. They led us through the reading of a beautiful poem and thanked us for taking part in the retreat. To close, we were invited to light our candle and say the name of the child or children we wanted to remember. The moment I had been waiting for was here, and I began to get nervous. Would I get through this? What would my husband think of me sharing these names before I told him about it? It felt right to debut my secret with this group, so when it came to my turn, I took a deep breath. I looked down at the table, because I knew I wouldn’t get through it looking anyone in the eye. I told the group that I had made a big decision, that I had finally decided that I no longer needed anyone’s blessing or permission to do this, and that I named my children. I heard intakes of breath and tears falling, and I picked up my candle. With a shaking hand, I placed the candle back on the table and asked my new friend seated next to me to light the candle for me. As she lit my candle, I shakily said that I light this candle for Alex, Amelia, David, Elizabeth, Gabe, and Madeline. The group continued, and we ended our retreat with hugs and promises to stay in touch.

It was an intense, emotionally draining, and very healing three days. The amazing people I met, relationships I developed, and information I learned were so very valuable. I continue to be in touch with several women I met there. As I get my community’s support group going, I’m sure I’ll be in touch with a lot more of them.

Thank you to everyone with the National Share Office for providing this retreat, for the presenters for dedicating their time to providing support, and to the participants for having the strength and courage to be there. I think of you often.

I’m happy to say that I will lead my first Share of Madison support group session in January, almost six years after learning about Share. The retreat was what I needed to feel I can do it successfully, and to have resources to rely on if I get stuck or need encouragement.

My biggest blessing from that weekend is the necklace I now wear every day that bears the names of my children. They are with me always, and that brings me peace.

Grieving vs. Mourning

By Rose Carlson

A few weeks ago, several of us from Share attended a workshop given by Dr. Alan Wolfelt, who is an internationally known speaker and author on grief issues. Dr. Wolfelt has written many different books for those who are grieving, from children to widows and widowers, to families of suicide victims to bereaved parents. He has also written books for those who care for people who are grieving, and he owns and operates a beautiful retreat center in Colorado.
Each year, one of our local funeral homes brings Dr. Wolfelt to our city. On the first day, he presents a workshop for people who are grieving the death of a loved one, and the next day, he presents a workshop for those who care for and work with those who are grieving. This is the workshop that I attended last week with my co workers. It was titled “Exploring the Spiritual Aspects of Death, Grief and Mourning.” While it was a very inspiring workshop, that is not what this blog post is about. I may be compelled to write on this topic sometime soon as I did have many thoughts about this topic swirling around in my head at the end of the day. Actually, I could probably write several different posts on this topic. But, what I’m going to write about now is something that has been on my mind since I attended the workshop last week. Dr. Wolfelt only touched on this briefly a few times as it wasn’t the focus of his presentation.

Grieving vs. mourning.

Honestly, this is not something I have given any thought to before. They would seem to be the same thing, yet according to Dr. Wolfelt, they aren’t, even though most people use the terms interchangeably. He says that grief is made up of the internal thoughts and feelings we all experience when someone we love dies. On the other hand, mourning is taking the internal experience of grief and expressing it…that real healing occurs not just by grieving, but through mourning. He says that most people in North American culture grieve, but they don’t necessarily mourn. He talked about how many years ago, those who were grieving wore black for a certain period of time so that everyone they encountered knew they were mourning the death of someone important in their life, and that this was a crucial part of their healing because even complete strangers knew they were grieving and would ask about their loved one. We don’t do that now. In fact, most people don’t even like to talk about grief and mourning, and quickly try to change the subject when it is mentioned. As most all of us have discovered, most of our society is uncomfortable with outward expressions of grief, quickly change the subject when the grieving person brings it up, and often will go so far as to tell the griever to “get over it and get on with life.”

This is apparent for pretty much all grieving people, but I couldn’t help but think as I listened to him talk that this is probably most apparent among parents who have experienced the death of a baby, even though he didn’t specifically mention that. Dr. Wolfelt believes that people don’t mourn because of the many conditions that are placed on them by society and the things grieving people are told. In the case of parents grieving the death of a baby, this would be things such as “be thankful, there was probably something wrong with the baby.” Or, “You’re young, you can have more children.” Or, “At least you lost the baby early before you got to know it.” Or, “It wasn’t meant to be.” These types of statements can make grieving parents feel as if they must keep their feelings to themselves, and so they don’t mourn the way they need and want to. The way they should be able to, surrounded by loving family and friends who give them the care and support they so desperately need as they try to navigate their way through a life they hadn’t planned.

Not only are bereaved parents who have had a baby die strongly encouraged to “move on,” have another baby and forget about the one who died, but those who outwardly express their grief in healthy ways of mourning are often looked at as unstable or crazy, and I find that very sad. Parents who outwardly express their grief are often told to “get over it,” “why do you keep bringing it up?” or “be thankful for what you have!” I believe that the people who say these things aren’t trying to purposely be mean or insensitive, yet they often come across that way. And comments such as these leads to parents suffering in silence and not mourning the way they need to.

As we all know, you don’t ever “get over” the death of a baby, no matter when the death occurred. In fact, I don’t think you ever “get over” the death of anyone you love and who is important to you. However, through real mourning, according to Dr. Wolfelt, you do eventually integrate your loss into the fabric of your life. In fact, according to him, mourning properly is essential to integrating your loss. He says that when a mourner is unable to express his or her feelings, they may become “stuck,” that the feelings of intense grief and pain may last longer.

In all of my years at Share, I never thought of it quite that way, but really, that is the heart of our mission…helping parents integrate their tragic loss into the fabric of their lives so they can move forward from those intense, raw early days and eventually be able to once again lead joyful, productive lives. We let them know that expressing their grief is not only healthy, but it is necessary. We help them understand that grief is not something with a time limit on it, but a lifelong process. And just as importantly, we help their family and friends understand that doing things that are meaningful to them, and that being able to talk about their baby as much as they need to is indeed healthy, and in fact, necessary.

All of us at Share hear time and again from parents that they don’t know what they would have done, don’t know where they would be, if not for Share helping them validate their baby’s life. Yes, we do validate their baby’s lives, and that is so important. But after listening to Dr. Wolfelt, I think what makes all the difference is that we help families mourn. And we help them see that mourning their baby IS a lifelong process. We encourage them to share their grief publicly…to wear a special pin or piece of jewelry, to share their baby’s photographs, to talk about their baby. These are the things that will eventually lead to some healing and peace.

Does what Dr. Wolfelt says make sense to you, that grieving is different from mourning?
Do you see any situations in your own life where you feel your healing is hindered because you aren’t allowed to mourn?
What things have you done to mourn so that others know about the grief you were/are experiencing?

Sunny Skies after the Fog

By Rose Carlson

A few Saturdays ago, I left my house really early…much too early for a Saturday; it was barely light, and it was unnaturally cold for early October, but I was going to speak at the Share walk in Fairview Heights, IL and needed to be there by 8 am. It is normally about a 45 minute drive, but it took me nearly an hour and a half because there was heavy fog that morning. I didn’t think much about it when I left home as fog is not uncommon around here. But, as I got on the interstate, the fog was so thick I could barely see where I was going, especially when I got near the Missouri River, which separates St. Charles (where I live) from St. Louis.

Where is this going you may be wondering? What does driving in fog early on a fall Saturday morning have to do with anything that would be posted on the Share blog?

Well, I do have a point. I promise, I do, but sometimes, (most of the time, really!) it takes me a bit of writing to get to my point, so bear with me please.

I crossed the Missouri River driving only about 30 miles an hour because I could not see much more than a few feet in front of my car. I was thinking it was the thickest fog I had seen in a long time, and I was really unsure of myself driving in it. Once I was over the river, the fog wasn’t quite as thick, and while it was still hard to see the highway in front of me, I relaxed a bit. I had planned on spending my drive going over in my mind the speech I had prepared, but I was so nervous driving, that all I could think about was navigating safely through the fog.

Maybe it’s because I was on my way to a Share event that my mind took the turn it did that morning. After all, I have driven in fog many times before. While I don’t like it, I have never before looked at fog and compared it to grief, but as I drove on that morning, that is exactly what was on my mind…thinking of being in the thick, swirling fog as the same way we all feel or have felt when we were grieving…unable to see very far ahead, only thinking of getting through the next few feet. Or the next few moments…putting whatever plans we may have had on hold as we go into survival “get through this” mode…that is what I thought about when I was going through the thick fog…it was very scary not being able to see what was ahead of me. Just as when you are grieving, it is scary to think about the days and months ahead. You can’t see where you are going, and that is not a good feeling. It’s not uncommon to feel as if a dark cloud is hovering over you, and you can’t imagine ever breaking out of it. I have driven this same stretch of highway many times…yet it was much different and felt unfamiliar driving it through the heavy cloak of fog. When you are grieving, your life may seem much the same way…you may be doing the same things, going the same places, and they may all be very familiar, yet at the same time, not familiar at all.

Once I drove over the bridge that crosses the river, the fog wasn’t as thick. In fact, the sun was kind of shining through the fog, and I wasn’t quite sure what to think about that. It was still foggy, but the sun was shining through, and it was still hard to see. The sun at that point almost made it harder to see.

And again I thought of the grief journey…how sometimes, you are in your darkest moments, unable to think of more than a few moments ahead. Then, sometimes, the sun shines, or rather you feel a tiny bit of relief from the dark, scary times you have been through. The sun shining through into your life for a moment may disorient you, as it did me on this foggy morning. It may take you a bit to adjust to the new brightness in your life, and you may feel afraid to believe that it will last. Just as I knew as I drove that I wasn’t completely out of the fog yet.

Sure enough, a few minutes later, I found myself once again enveloped in a fog so thick I could barely see, and I thought about pulling off the highway and calling Kaci, the person in charge of the walk I was going to so I could tell her I couldn’t make it. I still had a long way to go, and I felt like giving up and going back the way I had come, back to the safety of my home. But then I realized that I couldn’t do that. I was halfway there, and it seemed silly to turn back. Even if I did, I wouldn’t be avoiding the fog--I’d drive through it the whole way home. And besides, I knew that Kaci was counting on me to be there. So I kept going, even though I really didn’t want to.

As I drove on, I thought of how when you are grieving, you may often feel like just giving up, going back in time, then you think of those who are counting on you, and you know that you can’t give up. And as much as you wish you could, you can’t go back in time either.

Finally, just past the St. Louis airport, I broke through the fog, and the sky was beautifully blue and sunny. I was so relieved that I had made it through that scary drive. I still had a good ways to go to get to my destination, but I relaxed, turned on the radio, turned off the defroster and even cracked the window to let in some fresh, although cold air. I was finally able to drive the speed limit.

I gave up on my original plan of rehearsing my speech in my mind. I had gotten too sidetracked, and I decided to just drive and enjoy the beautiful morning. My plans had definitely changed, but I was okay with it by that point. Once again, I thought of grief, and how often you realize that the plans you may have had before really weren’t all that important, that what is important is to just enjoy the moment you are in.

I had about 10 minutes of enjoying the moment I was in. I thought I had gone through the “bad” stuff, that the rest of my trip to Illinois would be smooth sailing.

Then, I neared the Mississippi River which separates St. Louis from Illinois. All of the sudden, the fog was back. Thin at first, but as I drove on, it became thicker, and I felt like I was back where I had started from when I first left home. I hate driving over the bridge that crosses the Mississippi in the best of weather conditions. There are too many lanes and several interstates all meeting to cross that one bridge, and if you aren’t paying close attention, it is way too easy to end up in the wrong lane, going the wrong direction. So thinking of navigating that bridge in heavy fog was not appealing to me at all.

I was kind of angry by that point, too… I had been driving along, enjoying the sunshine and the beautiful fall morning, singing along to the radio, and BAM! I was back in the fog, the fog that I hated driving in and thought I had left behind. Once again, I was unable to see where I was going, once again, I was nervous…if I hadn’t been so close to my destination, I might have been tempted once again to give up. But, this time, I knew I would eventually come out of the fog.

I turned off the radio, gripped the steering wheel a bit tighter, and tried once again to see my way safely through the fog. And just as I had thought, within a few minutes, I was once again out of the fog, and the day was beautiful and sunny.

I arrived at the walk later than I had planned on because of the unexpected fog, but I arrived. And I was happy to be there. It was truly a beautiful morning; the trees were starting to change to their fall colors, and they were stunning against the perfectly clear blue sky. It was hard to believe that only a few minutes before I had been unable to see that blue sky because of the heavy fog. And it was cold. But I had such an appreciation for the beauty of the day, maybe more so because of the conditions I had to go through to get there. Maybe if I hadn’t driven there in such horrific weather conditions, I would have arrived thinking only of the cold and not the beauty of the day, not the thankfulness I had for having arrived there safely.

On my way home from the walk, I didn’t encounter any fog. It was truly a beautiful fall day in St. Louis. As I drove back to St. Charles, I thought once again about the journey of grief…how it is so challenging to navigate through life when you feel as if your life is covered in a heavy oppressive fog. But inevitably, the fog does lift…in the beginning, the fog may only lift for brief moments, giving you a mere glimpse of the sunshine that lies ahead before it envelops you once again. But, as you continue on, the skies do eventually clear.

At this point in time, you may still be in that fog. And you may feel as if you will never come out of it. It’s hard to believe, but you will. Your skies will one day be clear and sunny again And hopefully, once the skies in your life are again sunny, you will have an appreciation for them that you might not have had if not for the dark, frightening fog you have navigated your way through.

In the Present

By Cynthia Prest

I should be preparing for the birth of my baby, who would have been due right about now. I should be helping my son get ready for his duties as a big brother. I should be planning my maternity leave from work. I should be agonizing over names. I should be picking out an outfit to dress the baby in when it’s time to leave the hospital.

I can’t do any of these things, because my baby died seven months ago.

Having six miscarriages has changed me, in so many ways. Since experiencing my first loss in 2003, I no longer live in the future or in the past. I used to be an expert at living three months into the future. I planned for EVERYTHING. I cringe to think of what I missed in the present because I was either looking forward or backwards. Something in me shifted after my first baby died, and that shift has gotten stronger over the years. I went from believing that whatever I planned would become reality to realizing that I have no control over what happens. Losing that baby, after all the planning I had done, shook me to the core. Nothing felt right to me anymore. The way I had experienced the world for three decades was no longer accurate. I had always believed that if I planned well enough and tried hard enough, gave it my best, that things would work out the way I wanted. What do you mean my baby died? I didn’t plan for that. I don’t know how to handle that. Where’s the manual for this experience?

I don’t like to live with “should.” Lots of things should of happened, but didn’t. Living with “should” keeps me stuck. I don’t want to be stuck. I want to be present. I no longer want to live in the future or the past. I want to be present as my son learns how to write his name and experiences joy in the simple things, like his new winter boots that he refuses to take off, even in the house. I want to be present for my husband as he explores his newfound love of triathlons. I want to be present for my friendships, both old and new, as these people I care about tremendously navigate their new paths.

I’m supposed to get on a plane in less than 24 hours, and I’m not packed. My former self doesn’t recognize this new woman. This woman who used to be prepared for trips two weeks in advance. This woman knows that I will get packed, and I will get on the plane, and I will have everything I need. Whatever happens, no matter what I have planned or not, will be fine. I will embrace whatever comes my way, and I will be stronger for it.

Trying Again--Against All Odds

By Cynthia Prest

With my first three miscarriages, I knew I was going to try again for a child. There was no question in my mind. When I had my unfathomable fourth miscarriage, after my son was born, I wondered if trying again was the right thing to do. I went through a short period of time where I thought we should give up. I changed my mind, and I went on to have two more pregnancies and miscarriages. In the exam room after learning our most recent child had died, I asked my husband, “How do you feel about Tyler being an only child?” I was reacting out of shock and unimaginable grief. He laughed in a “I can’t believe you’re asking me that” kind of way. Of course, he was fine with that. I just couldn’t imagine going through this experience again.

For reasons I have yet to discover, it was only after this most recent miscarriage that it occurred to me that my husband and I weren’t the only ones who should be involved in the decision. We had friends, family, and a child who were experiencing this right along with us. For that reason, I started to seriously consider whether it was fair to all of us to keep going through this.

When I met with a new doctor a few months ago, I asked her if I was crazy to keep trying to have a child after having six miscarriages. She looked me in the eyes and said very seriously, “This is your path. Don’t ever let anyone tell you that you shouldn’t be on this path.” Her compassion and reassurance were tremendously healing. I knew I had to keep going.

My track record of having successful pregnancies isn’t great. I’ve had one live birth out of seven. What logical reason exists for me to keep trying?

I was reading through my journal recently and came across a quote I captured while reading The Story of Edgar Sawtelle, shortly after my fourth miscarriage. The couple at the center of the story had lost several children during pregnancy. The husband is trying to convince his wife to try again. He said, “One more time. Not because it won’t be terrible if it happens again, but because it’ll be wonderful if it doesn’t.” I held on to those words for many months, and it kept me going through the next two losses. Yes, it may happen again. But, what if it doesn’t?

I had a conversation with someone a couple of years ago about my then two year-old’s emerging stubbornness. I admitted proudly that trait came from me. He said it’s unusual for someone to admit to being stubborn (it’s not one of the classically positive character traits). I said my stubbornness had served me well. He grinned in a “good for you” kind of way. I try to maintain that attitude when Tyler is being exceptionally persistent.

Is it stubbornness that propels me forward? Is it faith? Is it believing this is the path that I was destined to be on? I don’t believe I need to have two children or was destined to be the mother of two kids. I just have always wanted two – that’s the picture I created of my life. I suppose part of my determination comes from resisting something preventing me from reaching my goal. I have drive. I get stuff done. And this is something I can’t get done. And that infuriates me. So, maybe that’s it – it’s the rage that propels me forward and keeps me trying against all the odds.

Perhaps there’s a resilience that grows out of repeatedly being denied something I want so badly…a strength that comes from trying to prove things wrong. It’s like telling a four year-old he can’t have something; he just wants it more. “I’ll show you,” he says. Maybe that’s not just young children; perhaps that mentality exists in all of us. I’ve talked to so many (too many) people who have experienced the death of a child, and with every story I hear, I wonder, “How do they keep going?” Perhaps our persistence is healthy – it keeps us moving forward, which is the best way to go.

What Do You Say?

By Rose Carlson

One of the things I hear most often that is upsetting to bereaved parents is the many insensitive and sometimes downright mean remarks that nearly everyone hears at one time or another. Their disbelief at the things people actually have the nerve to say is generally followed by feelings of wishing they could come up with the perfect reply or the perfect way to handle these thoughtless comments and the people who make them.

Because of this, friendships and other close relationships are often never the same. I always find it very sad that on top of losing a baby, anyone has to lose a friend, too, especially when it’s due to someone saying the wrong thing, or even worse, saying nothing at all. Many times, the people who are closest to you, who you expect to understand your grief and pain the most, are the ones who end up being the most hurtful.

After each of my miscarriages, I was truly shocked and amazed by the words that came from my friend’s and loved one’s mouths…things like: “You’re young, you’ll have more babies!” “At least it happened early.” “There was probably something wrong with ‘it,’ you should think of it as a blessing.” (Oh, really? A miscarriage is a blessing? How exactly, I wanted to ask.). My favorite, “It’s been a MONTH already! You need to get over this!”

I always assumed that the reason people said such things to me and others who have early losses was precisely because they happened early, before anyone except the mother feels much of a connection to the baby. However, after starting my job at Share, I quickly discovered that pretty much anyone who has had a baby die at any time during pregnancy or shortly after birth is likely to hear the same things, and many times, even worse things.

I am routinely stunned and horrified by what parents who have had later losses tell me…like the mom who was told after her daughter was born still at 20 weeks, “At least you hadn’t done a nursery yet.” Or the mom who shared with me that her grandmother told her after the full term stillbirth of her third child, “Oh well…you didn’t need another baby anyway.” Or the many parents who are told “Count your blessings! You have other children!” as if that makes the death of one okay. Or, “It wasn’t meant to be.” The “ors” could go on and on.

Even though it’s been many years since my own losses and I no longer harbor any ill will to those who said such insensitive things to me, I frequently find myself shaking my head in disbelief and outright anger at the things people say. I like to think that we as a society have come a long way over the years in the way we respond to parent’s grief, but sadly, that is not always the case, even though the medical community has become more aware of the needs of the bereaved parents they care for.

However, the support of the medical community ends when the parents leave the hospital without their baby and are plunged back into real life. Family and friends are typically supportive in the early days and weeks, but then many times, something happens. It’s as if their patience wears thin. That is when the “you need to move on” types of comments begin. I hear and read it again and again.

Once the questions about when you are going to get over this start, something else often happens. While the grieving parent’s world has come to a screeching halt, everyone else’s life eventually moves forward. It can be difficult if it seems as if those who were so supportive at the beginning no longer want to hear about your sadness, so you may stop talking about it, which can make everyone around you think you are moving on, when nothing is further from the truth. It’s a vicious circle…one which many times leads to misunderstandings, hurt feelings and sometimes permanent damage to once-close relationships. At this point, it is easy to become angry with your friends and family members who don’t respond or support you the way you wish they would or the way you need them to.

So what is a grieving parent to do? When you are in the depths of grief and feeling vulnerable, it can be difficult to come up with the right thing to say in response to someone who has just said something upsetting to you. I always thought of the most perfect comeback response later.

With many years behind me since my miscarriages, and seven years spent at Share talking to bereaved parents, I’ve heard many ideas on ways of handling those who just don’t get it. I have also discovered that most people want to get it, they want to understand, they want to help, but they simply don’t know what to say or do. And what NOT to say or do. And sadly, most feel as if they are being helpful when they say the things they say.

The best way to deal with people in that situation is to be honest. Tell them that what they just said was hurtful and why. Tell those who seem to ignore you in your time of need what you need from them. I think you will find that for the most part, people are genuinely concerned and sorry when they realize they have been hurtful to you. Of course, there will always be those who no matter what you say still think you are not grieving the “right” way, and there is nothing you will be able to say or do to change their minds. In that case, give yourself permission to limit the time you spend with them as much as possible, at least until you are feeling stronger.

Something that others have found helpful is to write an open letter to family members and friends. When I first started volunteering at Share, I was reading a newsletter one day, and there was a letter in it that a bereaved dad had written. I don’t remember the entire letter, but he basically wrote what he and his wife were going through, and exactly what they needed (and didn’t need) from each of their loved ones. He did so in a loving way without accusing anyone of doing anything wrong. He closed the letter by saying that he hoped they understood. He also told them to keep in mind that whoever was receiving his letter was deeply cared about by him and his wife…that he was sending the letter because they didn’t want to lose any one of their loved ones from their lives due to any misunderstandings that might arise during this very tragic time. I remember reading that letter and thinking how I wished I had thought of something like that, and I often suggest the idea to parents and grandparents.

Try to keep in mind that most of the time, friends and family say the things they do because they want you to be “back to normal” when it is unlikely that you will be. Unless they have been through what you have, they have no way of knowing that. Even though it may be impossible to believe in the early days, you will feel better, you will laugh and be happy and smile again, but you are living a new normal now, and that can be hard, if not impossible, for others who are close to you to accept.

While it seems unfair that in the midst of your grief you have to worry about ‘teaching’ others the best ways to be supportive of you, that is often the way it works out if you want to keep those people in your life. When you are grieving and not feeling as if you are receiving the care and support you need, it’s easy to be angry at your friends and family members who seem to have moved on and don’t respond the way you wish they would.

But at the same time, unless they have been through a similar situation, they will not necessarily know the right way to be helpful to you, and you can guide them…let them know what you need. Just as this is a new and scary journey for you trying to navigate through the confusing maze of grief with it’s many twists and turns and uncertainties, so it can be just as confusing for your loved ones in learning how to be supportive to you as you walk this journey. By being honest with them, it can lead to an even deeper relationship than you had before.

Finally, while it is not easy to do, try to remember that most people who love and care about you want more than anything to be helpful, to ease your pain. But, it’s impossible to do because really, there is nothing that can ease your pain. I work at Share, and even I sometimes have a difficult time coming up with the right thing to say. A couple of years ago, my sister had a little boy who was born still, and I was utterly terrified of saying or doing the wrong thing. Since then, I always think that if someone like me, who spends every day working with and supporting grieving families, questions whether or not I am saying the right things…imagine how challenging it must be for those who haven’t walked this path.

I’m not saying that if someone has said something hurtful that you should just say, “oh well…she meant well.” Not at all. What I am saying is that giving someone the benefit of the doubt, opening the lines of communication, and telling those who have been hurtful or insensitive that they have been can be an important step in ensuring that the death of your baby doesn’t mean the end of a friendship or other relationship that is important to you.

What are some ways you have handled insensitive and hurtful things that others have done or said in the time since your baby died? How did the person respond to you? Did the things you said change anything?

Grief Season Opens Early by Cara Tyrell

“They stocked the stream yesterday” I hear annually. Within hours the fishing poles, tackle and canoe have been unearthed, readied for the next days use.

“Got your license yet?” is the popular question months later as clever deer take cover and less intuitive ones end up in our freezer.

Vermont is known for its seasons and not just the classic four: Summer, Fall, Winter and Spring. No, here we trudge through Mud Season. We sweat through Hay Season. We swat through Black Fly Season. And, this year, the Rainy Season seems to have come to stay.

What is less attended to is Grief Season. This season is a sneaky one. It does not arrive preceded by rain, or mud or sun. There are no marking flowers or distinct temperatures associated with it. No, that isn’t entirely true. If I stop and focus; if I look, listen, and feel the signs are everywhere: a slight chill in the air, the promise of Fall within weeks, leaves starting to look more crisp than the week before, and a slightly red tint on the leaves of Emma’s burning bush.

This is my grief season. Much like J.K. Rowling’s love potion, the signs are different for each of us. Ordinary parts of perfectly good seasons become omens of rough days to come. She was due on the 6th. . I realized she was gone, then labored through a deluded haze on the 7th. She was born on the 8th.

Annually, I have come to recognize these signals, taking emotional cover. Every August, the roughest segment of road appears marked by a bright yellow road sign: CAUTION - SEPTEMBER APPROACHING – 14 DAYS – SHARP TURNS AHEAD.

And yet, is seems my grief season has begun early. Even if the signs are different, I fear it has arrived early. Without warning my body hurts, aches, head to toe. I am plagued by constant fatigue. My migraines have returned with vengeance. Armed with prescription meds I can keep them at bay, but they are always there ready to attack with the slightest provocation. My mood, so recently light and flexible to match our summer schedule, has become darker, more subdued with the regrettable side effect that I find myself barking at people more and more. Wait! It isn’t time yet. I’m not ready yet. Oh, just breath – I’ll test this theory.

I smell the air. It’s still hot and sticky. I search the trees. Their leaves still look supple and lively. I inspect her burning bush. It is pregnant with growth this year, just as green as its neighbor – not a hint of red.

Don’t ask…no, don’t. But I can’t help myself.

Why? Why the shift in schedule? Does this mean it will pass and dissipate earlier than usual too? Doubtful. So, why the assigned extension?

I could attempt to answer this rhetorical query.

Because I am going back to work.
Because this magical year of writing is coming to a tapered end.
Because babies are still dying.
Because my commitments will cause me to be ‘less Emma’s mother’ again
Because I’m sharing pregnancy after loss anxiety with the members of our support group who are trying again.
Because on September 8th she turns nine years old.

Because…Because…Because

They are only guesses. Some might me more accurate than others, but it comes to the same end. I passed the road sign. My Grief Season has come early this year.

What are your grief season signals? How do you meet it head on?

Anniversaries

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.

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.

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?

Well...no. 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.

Rainbows

While living children are mentioned in this post, it addresses a topic that many bereaved parents think, wonder and worry about…having subsequent children after their loss.

This past weekend, my sister came to visit. We haven’t spent an entire weekend together in a long time, and it was really nice. Her youngest child is only 15 months old, and he is simply a ray of sunshine. And he is my sister’s rainbow baby. For those who aren’t familiar with that term, a rainbow baby is a baby who was born after a loss…a promise of hope after a terrible storm.

Two and a half years ago, my sister gave birth to a very tiny little boy who was born still. This precious little boy was conceived just before the baby who died was due, so it’s impossible to spend time with him without thinking how if not for the baby who didn’t make it, he wouldn’t be here.

Unfortunately, I’m no stranger to dealing with those feelings. My second son who will soon be 15 would not be here either if not for the last two miscarriages I had. While I was going through a very difficult pregnancy with him, the thought never crossed my mind that he wouldn’t be here if not for what I had been through. During that time, I was so focused on getting him here safe and sound that I thought of little else. But minutes after he was born, while I was holding him and gazing into his beautiful face for the very first time….it hit me. I would not have him if not for our losses because it wouldn’t have physically been possible. The last baby I had miscarried was due on Halloween, and he had been conceived nearly a month before that.

As I held him that first time, so much in love, I felt guilty. I wondered if the spirits of the babies I had miscarried thought that I no longer cared about them now that I had a new baby. I felt guilty that I had ever been so distraught over the babies I had miscarried, knowing that if not for them, THIS baby who I had come to love so fiercely wouldn’t be here. It was a vicious circle, one I traveled around and around many times in the coming months and years.

And now I travel that circle again…and so does my sister. I know she does because she has told me before that she was so sad about her baby boy who died, yet she can’t imagine not having this delightful little boy either.

I thought of something else this weekend, too. He is such a happy baby, always with a smile on his face. Happy…smiley…a true joy. He always has been. It’s almost like he knew from the beginning his mommy’s heart needed healing, and he is doing that. I look back on my own son’s babyhood, and I remember thinking the very same thing. My son who was born after my miscarriages was always happy with a huge grin on his face. I didn’t know about Share back then and had never heard of the term rainbow baby, yet I did often marvel at the ray of sunshine and hope that I was blessed with after all of the heartache and tears.

My son often asks me about the “babies that died” and if I would have had him if those babies wouldn’t have died. I used to be uncomfortable answering his questions because I never wanted him to think he wasn’t wanted or planned. I have always been open with my kids about my miscarriages, and even when he was pretty little, he asked questions. I started telling him that for some reason we don’t yet know, HE was the one who we were meant to have with us here on Earth. So far, that answer has satisfied him. I don’t know what my sister will tell her son, but she and her kids also talk openly about their baby who died, so I’m sure that someday, she will also be faced with having to explain that which is so hard to explain.

Whatever she tells him, he will know without a doubt that he is so loved. And he will know the joy and healing he brought to our whole family.

I often read on Share that so many others have these same feelings of worrying about how you can love and welcome a new baby into your heart and family when that baby would not be here if not for the death of another. And so many moms feel guilty over the feelings they have. These are not easy emotions to deal with and accept, but they are “normal.” As we all know, one baby can never replace another. But, it IS possible to love a new child without diminishing the love you have for your baby who died.

Step By Step

by Cara Tyrell

Day by day… Minute by minute… Second by second.

These are the forced mantras fed to us after loss. Just take it day by day, minute by minute, second by excruciating second.

I do not miss the truth behind these words, for no other option allows us to remain, even mildly functional as the world we once knew by rote, shatters - then redefines itself. And yet, I distinctly recall the stale feeling they left behind as I attempted to formulate a semi-appropriate reply. No words fit. Each syllabic formulation died on my tongue, just short of its mark.

That was eight years ago.

Now, I hear myself say these words to devastated parents, hoping against hope that some truly comforting meaning has been embedded in them throughout the years. You are not alone. We will get through this, together – day by day, minute by minute, second by second. And we do: in the hospital, over the phone, through emails, at monthly meetings…and still, I wished for something more; an overtly affirming over-the-top action that speaks louder than short-phrased, albeit well meaning, platitudes.

That something exists. It existed all along. I had no idea.

Share Southern Vermont hosted its first annual Walk for Hope and Remembrance in early May. It was a first on so many levels, each of them more affirming than the next.

It was our first big event, our ‘grand opening’, if you will - broadcasting to communities in need: We are here! If you need us, call. If you are hurting, email. If you can help us, call. If you wish to support us – emaill. And they did.

“Thank you!” they said, “I lost my baby 10, 20, 30, 40 years ago... I wasn’t even there for myself... I came to support my granddaughter... I feel like I can finally grieve for him/her...For the first time, I called myself, ‘his mother’. Thank you for that.”

It was the first time I had ever attended any kind of organized memorial for lost babies. I see now how truly astounding that is, for I have been doing my work. I have never apologized for Emma’s memory. I have never been silent about the three kids in our family. I have been to the therapist, kept a journal, scrapbooked, put ornaments on the tree, and celebrate my daughter’s short life in countless ways throughout the years. But never once had it crossed my mind that I could share my grieving road with others, gather with them monthly to share stories and tears, or listen to my baby’s name read with one-hundred others, and then – walk, together, towards the next phase of our grief.

I am filled with gratitude that our generation is not told to hit an eternal pause button until we ‘meet again’, to just ‘let it go’ and ‘never speak of it’. We are allowed to grieve. We know our steps don’t always have to be forward, sometimes going back is the only way to progress, but we have each other and that means everything.

Eighty four sets of feet took some big steps last month. The collective energy was nearly tangible as individuals felt their own personal shift. We grieve together: day by day, minute by minute, second by second, and now – step by step.

Did you participate in a walk this spring? What is the most recent ‘step’ you have taken?

Eden's Angels: Trust

This weeks blog post was written by Jeanna O'Leary, Share Group Coordinator at the National Share Office. Jeanna is mom to twins David and Allison, who were born to early to survive. She also experienced an early pregnancy loss. Jeanna also has three living sons, 7 year old twins and an 18 month old.

Last weekend my 1 ½ year-old son and I boarded a plane with my Mom and headed to Henderson, Nevada for a special weekend with our family to celebrate the first communion of my cousin’s daughter, Lauren. We had a wonderful visit filled with lots of laughter and special memories. However, the week leading up to our visit was not without some sadness. I could not help but think about how my twin son and daughter, David and Allison, would have been celebrating their first communion this spring as well. I began to envision my little David looking so handsome in his shirt and tie and my little Allison twirling around in her pretty white dress and veil. This and so many other dreams were tucked away in my heart the day I said good-bye to our son and daughter. Many bereaved parents know all too well that bittersweet feeling deep in our hearts of watching other families live out the very hopes and dreams we may have had for our own babies.

We were sitting around the table at my cousin’s house before it was time to leave for the church when my aunt and cousin presented me with a special gift. It was a lovely glass vase containing two gorgeous white roses. Attached to the vase was the most beautiful statue I have ever seen. It was an angel in pastel colors surrounded by a little boy and girl holding hands around the bottom of her gown. This kind gesture was my family’s way of telling me that they, too, were remembering David and Allison. My cousin then told me she was given permission by their priest to place the vase of flowers and statue in the front of the altar during the mass. This way I could watch Lauren receive her first communion while seeing this beautiful gift representing my babies. I was overcome with emotion knowing that I was not the only one thinking of David and Allison or feeling their presence during the ceremony.

As I unpacked my suitcase after returning home, I examined the box containing the angel statue. Eden’s Angels is the name of the series and the statue is titled, Trust. It reads on the back of the box, “With Eden’s Angels we bring you and your loved ones the goodness and beauty that can be found within the world around us. We encourage you to share the gift of grace with all those you hold close to your heart.” I have reflected many times on these words since last weekend. Perhaps in celebrating the milestones and dreams of others and sharing with them in their happiness, I am giving gifts of grace to David and Allison. My hopes and dreams did not have to end 8 years ago after their deaths. They will continue as I celebrate with those who are loved by the same heart that carries my babies.

Our Miracle by Jill Lear

This weeks blog post was written by Jill Lear. Jill's daughter Hattie Ann was born 13 weeks to soon and lived for 39 days, from May 4, 2002-June 11, 2002. Jill is also mom to two miscarrried babies and 3 living children.

Our Miracle

For the longest time, I had a hard time praying not understanding why God didn't give us our miracle. I still have a hard time, but I have come to realize God did give us our miracle, we just didn't see it at the time. Here is what I came up with.

I spotted for the first 14 weeks of her pregnancy, she could have been a miscarriage.

We were told during labor that she only had a 50% chance of surviving the delivery. She made it through with no problem.

Two days after she was born, she was doing so well they decided to take her breathing tube out. She immediately started hemorrhaging from her lungs. It took them 2 hours to get the breathing tube back in. We were told she probably wouldn't make it through the day. She did.

That same day my dad had called Father Brad to let him know that Hattie had been born. Out of the blue, he showed up and baptized her. We started to feel like there was hope immediately.

The following day, they did a brain ultrasound. It showed a Grade 4 brain bleed. The doctor said that it was the worst he had seen in 10 years. He said her chances of surviving until the end of the week were slim. She made it.

Hattie started to improve and on day 16 we held our daughter for the first time. Her vitals improved every time she was placed on my chest. What a feeling. It had been my fear all along that she would die without me getting to hold her.

On day 38 with her kidneys already shut down for 4 days, the doctor told us we were going to have to decide on whether to continue her care or let her go. What parent could ever make that decision? Afterward a nurse who was not Hattie's nurse came up to me and started encouraging me to fight for her life not to give up until Hattie told us to. She told me stories of babies who's skin literally fell off after kidney failure and yet made it back. She said that when Hattie's heart gave out that meant she was just too tired to continue the fight. It made our decision. We would not give up.

On day 38 I spent the night at the hospital for the first time. I was able to say good night to her and kiss her good morning just like a real mom.

Day 39, her vitals started to go down. They decided to try putting in a bigger breathing tube (she had outgrown her original one) . Once again, they were unable to intubate her. We watched as her heart rate continued to drop until it was in the 10's. We told them to let her go. My husband and I were both there to say good-bye.

What amazes me is that fact that they had such major problems intubating her (getting her breathing tube in) twice, yet in that first minute of life, it went in with no problem. God was definitely there giving us a gift.

Although the experience was a total rollercoaster, I would not have traded it for anything. We watched as her skin grow thick like a newborn. We watched as she developed cartilage in her ears. I got to be her mom. I got to change her diapers, give her my milk, hold her and sing to her. I was able to share all my hopes and dreams with her. I was given the time to show her how much I loved her. That is just so important. I know that she died knowing how much her mommy and daddy loved her.

Hattie Ann did some amazing things in her short 39 days. I know she touched so many lives from ours, our friends and families, to her doctors and nurses. We may not know what her purpose in life was, but it was great and we should feel blessed that we were the ones chosen to be her parents.

Looking back at her days, God was with us every step of the way giving us the chance to be her parents. Her life might have been short but we definitely got our little miracle.

When we decided to create this Share blog, I knew that I did not want to be the only one writing posts on it. While I do love to write, it's not my blog...I want it to share the perspectives and thoughts of guest bloggers, others out in the blogging world who already have blogs dealing with pregnancy and infant loss issues. There are so many out there, and so many really wonderful writers. I have found several blogs over the past few months that I enjoy reading, and we have them linked here. If you know of any others, please email me a link to them so I can check them out.

One of the blogs I discovered recently is Cara Tyrell's...Building Heavenly Bridges. Cara is the founder of Share Southern Vermont, and I had the pleasure of meeting her in March when she came to our Sharing and Caring training workshop for Share group leaders. Cara's first child, Emma Grace Tyrell, was born still at full term eight years ago. Since then, Cara has been blessed with two living children, and she has kept her love and memories of Emma close at heart and started Share Southern Vermont as well as her blog in Emma's memory. She not only writes her blog...she is a columnist for Exhale, an online magazine for those grieving the death of a baby (http://www.exhalezine.com/.) She is also is in the final days of planning her first remembrance walk, being held this coming Saturday in Springfield, Vermont. Cara will be writing for Share your Thoughts the first week of each month, and I hope you enjoy her touching, thought-provoking posts as much as I do.

In these days leading to Mother's Day, know that you will be in the hearts and thoughts of all of us at Share.
Warmly,
Rose

I Am

I am so many things; so very many that listing them for you would be an extensive project, sure to bore both of us. So, I tell you only three things about me, as a start.

1) I am Emma’s mother. She is not part of this world, but she is my daughter –my first born, and I – her mother, always.
2) I am a trained Share group leader working with families as they walk their grief roads.
3) I will be posting here the first Monday of every month.

Truly, that’s all we need to know – for now. The rest will come in time, through words and back-story, emotion and conversation. It matters little what I do with my days, because my sole purpose both as a Share blog contributor and a group leader, is to be a source of hope, comfort and inspiration. In other words: Emma’s mother.

There are very few parts of my real life where I am afforded this title. I have to fight for it, remind others that she existed, still exists – because I love her, because we talk about her and keep her alive within our home.

It is for this reason that I crave our monthly support meetings as much as the parents in active grief do. I walk into the library, slowly pushing open the heavy door, taking in every inch of our space. Breathing deeply, I reach into my bags to set up: the lending library, the new parent folders, our snack, our chairs, our tissues. I can feel the shift. Emma’s time is at hand.

“I’ll begin”, I say, a broad smile spreading across my face as the familiar words slip off my tongue. “I am Cara, mother to Emma Grace, with us for forty weeks and one day, born still on September 8th, 2000.”

These words were not always so easy to say. There was a time when they felt like a lie, when the mere idea of speaking them caused me to become mute. There was a time when I choked them out, syllable by rebellious syllable, aware that I had to accept the truth, only to end with a cascade of tears, near hyperventilation. There was a time when they became weapons, my tools laced with righteous indignation to prove to the world that I had a daughter. There was a time they became a tired refrain to, “Is this your first?”, the constant inquiry with lilted inflection that followed a glance at my bulging belly. Only now, eight years later, do these words fill me with a sense of bittersweet peace and purpose.

Thank you, for allowing me this space to share Emma with you. I look forward to reading each of your stories.

Whose parent are you?

What Really Matters

What matters is not what life does to you, but rather what you do with what life does to you. ~Edgar Jackson

I have been a “quote collector” for as long as I can remember, even many years ago when I was in high school. I’m always on the look out for them…I write on slips of paper when I’m in my car and see interesting things on signs. I watch for them in magazines. Sometimes, I flip through books that are sent to me at the Share office before I even read the entire book just to read the quotes that are often at the beginning of each chapter. I have them tacked to the walls in my office and on papers folded in my wallet. Sometimes, when I find one that really inspires me, I have to write about it.

I found one such quote yesterday when I came across the one above in a book called “The Heart of Grief” by Thomas Attig. This book isn’t specifically about grieving the death of a baby; the main objective of the author is to show how the journey of grief can bring us to lasting love that honors those who have died while at the same time enriching our lives. Attig shares this in the preface: “We have no choice about whether we will grieve. The world changes irretrievably when those we love die. Respond we must. We only have a choice about what paths we walk in response. We will suffer no matter which paths we choose. When we walk paths toward lasting love and find it, its many rewards make the journey worthwhile.”

I haven’t read the entire book. Actually, I haven’t read much of it at all. It’s been sitting on a shelf in my office for quite a while, and I pick it up when I have a few minutes of free time because it’s not a book that is written in chronological order…you can skip around and read stories as you please.

When I read this quote, it really had an impact on me. I know at times it is easy to get bogged down in thinking about things that have happened that are out of your control that you can do nothing about. Nothing. No matter how hard you try, no matter how much you want more than anything to do something about it. Life “does” a lot of things to all of us. A child dying is probably the ultimate horrible thing that life can do to anyone. We can’t do anything about that, no matter how much we get mad and yell and want to stomp our feet.

We can’t do anything except hopefully get to the point in our lives where we can say, “Okay, what can I do to not let this destroy me?” or “What good can eventually come from this terrible, tragic thing that life did to me without my consent?” And that is exactly what this quote reminds me of…making things better, making sweet lemonade out of the bitterest of lemons. Perhaps you are only recently embarking on this journey of grieving the death of your precious baby and the very LAST thing you want anyone to tell you is that there will ever be any thing that is good or positive about the death of your baby. And I’m not telling you that, I promise. I’m not telling you that one day you will think it’s good that your baby died, because there is absolutely without a doubt nothing good about a baby dying. NOTHING.

What I am trying to tell you is that hopefully, someday, you will be able to look back and know that you did something good with what life did to you, that you did something with the love you have for your baby.

If you are so inclined, I’d love to read what you have done or someday dream of doing with what life did to you.

Wishing you peace and healing,
Rose

My Brick

I originally had the idea to write something similar to this for an upcoming newsletter, but once we had the idea to start a Share blog, and it was decided by my coworkers that I would do some writing for it, this was a topic I knew I wanted to write about. Memory making, and preserving mementos, is a subject that is near and dear to my heart as someone who has had several early losses many years ago and has nothing other than the memories in my mind and heart to remember those babies by. Not even an ultrasound photo. After I came to Share as a volunteer seven years ago, I was inspired to start doing a few simple things, such as collecting angel Christmas ornaments, and I have a tiny angel pin and an angel Christmas ornament that a dear friend gave me. I also save programs from the walk and other Share events as well as anything I write for the Share newsletter, but other than that, I really have nothing. So over the years, I have sort of made it my personal mission to help the bereaved parents I talk to in my work at Share come up with ways to memorialize their tiny little ones when they may have little or nothing tangible. While I have done a few simple things over the years to remember my babies, by far the most meaningful thing I have done in memory of and in honor of them is to have an engraved brick at the Angel of Hope in St. Charles, MO.

Part of my job at Share has always been “Angel Keeper.” Honestly, out of all my tasks at the National Share Office, it’s always been one of the things I most enjoy doing. Over the years, there have been times when I’ve been asked to give it over to someone else to “lighten my load” a bit, and I never want to. I actually DID give it to someone else at one point, and I hated it! I have only missed one dedication ceremony in nearly 6 years…and that was because I was in Atlanta at a conference. Anyway, I send out confirmation letters when we receive the orders, plan the dedication ceremonies, send out invitations, oversee the engraving of the bricks to make sure there are no mistakes, and make sure the area stays cleaned up. I have even been out on a typical St. Louis cold/rainy/windy “spring” day scrubbing off bird poop with a brush and bucket of warm water the day of an event. Her head is above MY head, so cleaning her involves reaching above my head… the wind was coming from just the right direction to blow a lovely cocktail of bird poop, warm water and cold rain right into my face. Oh, yes, I am a loyal Share employee!

Like I said, I really enjoy this part of my job. Other than scrubbing off bird poop in the cold and rain; I’d be lying if I said I love that. Thankfully, that was a one-time thing. But, I always love the dedication ceremonies as it is so touching to see all of the families come and lovingly place their brick. They bring their living children, siblings, parents, cousins…they place tiny little urns and flowers next to their brick and take photographs. They gather their family around the Angel and take even more photographs. Adult children often purchase bricks for their parents who experienced the death of a baby many years ago when “these things” were not talked about. There are always many tears, but there are many smiles and hugs, too. Families have shared pictures, scrapbooks and other mementos at the ceremony. Bereaved dads help the families lay their bricks. A bereaved mom sings a beautiful song. And I always feel so honored to be a part of it all. Some of my favorite memories are when parents whose baby died many years ago have told us at the ceremony how they feel as if they finally have a special place to go to reflect on and remember their baby. It’s truly awe inspiring.

Unfortunately, the weather isn’t always the best. Sometimes, it’s hot and steamy in November; sometimes, it’s 50 and rainy in May. Sometimes, the weather is absolutely, stunningly perfect. Sometimes, the fall foliage is breathtaking; sometimes, the trees are barren and forlorn. That’s St. Louis for you. As Forest Gump would say, “You never know what you’re gonna get.” But no matter what the weather is like, it’s a beautiful day in the Ben Rau Gardens at Blanchette Park in St. Charles, MO. It’s a beautiful day because families come to honor and remember their children who died way too soon.

Several times over my years at Share, Cathi, my beloved boss, asked me why I didn’t have a brick. In the most loving Cathi-way possible of course! I never had a good answer for her and would quickly try to change the subject. (I’m good at that!) I never wanted to tell her that I felt rather silly after so many years, when my losses were so early, doing something like that. So I continued going to the dedication ceremonies, keeping the thoughts of my babies and those of the special parents and friends I’ve met through Share in my mind and heart throughout.

Then, my dearest friend, who I met through Share five years ago, decided that she wanted to purchase a brick in memory of her daughter, even though she lives 1000 miles away from here. And she asked me why I didn’t have one. I didn’t know what to tell her either, because I really had no good reason. Again, I masterfully changed the subject. But eventually, I started thinking that maybe I needed a brick after all. Then, I started thinking of what I wanted inscribed on it. Actually, obsessing about it is probably a more accurate word than “thinking” about it. How in the world do you fit all of the feelings and emotions you have about tiny babies who didn’t make it…tiny babies who most people would think meant nothing…tiny babies who literally changed the course of my life in ways I could never have imagined at the time…how do you fit all of that into 3 lines of 15 characters each? Finally, after days and days of thinking, obsessing, writing things down, scratching them out, finally, I chose the perfect inscription. I filled out the form, RAN downstairs from my office with my check and told Megan, who at that time handled the money that came into Share, “Deposit this before I change my mind!” The inscription I chose was this:

BLESSED BY TINY
SOULS THANKS 4
YOUR MANY GIFTS

I don’t know why it was such a big deal for me to do this. I always tell parents to do what they think they need or want to do and not worry about what anyone else thinks. But most people who know me know that I’m horrible (REALLY horrible) at practicing what I preach.

But…I now am the proud owner of a brick at the Angel of Hope in St. Charles, MO. My friend and I laid our bricks privately on a beautiful Sunday last fall when she was in town for the weekend. It was a bittersweet moment, one of many, as we both know that if not for the heartache we have both experienced, we would never have met. It is also bittersweet to know that all we have of these babies who touched both of our lives and brought us together are engraved bricks around an angel statue in a beautiful park. No, that’s not all we have. We have our memories. And we have a remarkable friendship that neither of us can imagine not having.

And now, I love going out to the Angel even more than I did before. Our bricks are placed right at the entrance so I see them as soon as I walk up. Every time I see them, I have so many feelings wrapped up all together in one neat little package…feelings of deep gratitude for all I have been given because of five little souls (my four, and my friend’s daughter)…feelings of sorrow when I think of the many tears that have been shed over the years by all of the parents who have had to say goodbye to a precious child…and a feeling that I have joined the ranks of those who can say after many years, I finally have a place to go reflect on and remember the babies who are not here with me, but that I was so blessed to have grace my life. For a long time, all I could see was the heartache, but now, I really do think only of the many gifts they brought to my life.

It is never too late to do something to honor and commemorate your baby. Doing so may give you a peace in your heart that you didn’t know was possible.

-Rose Carlson, National Share Office Program Director

Share joins the blogosphere!

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