Sherokee Ilse lost 3 babies of her own through a miscarriage, a full-term stillborn son and an ectopic pregnancy. She has two living sons and she is one of the early pioneers in perinatal loss and bereavement. Not only is she the author of 18 books and booklets about loss and healing, including her first and most popular self-help book for parents and families titled Empty Arms: Coping with Miscarriage, Stillbirth, and Infant Death, Sherokee also speaks, trains and consults across the globe. Miscarriage, stillbirth, NICU (Neonatal Intensive Care Unit) losses and sudden infant death along with child loss and general bereavement have been Sherokee’s areas of expertise for the past 30+ years.
IN THIS EPISODE, YOU’LL HEAR ABOUT THINGS LIKE:
- “The Dark Ages” when it comes to prenatal loss and bereavement.
- What to say – and what not to say – to families who have lost a baby.
- The importance of helping couples communicate and support each other at the time of loss and over time.
- The difference between a grief counselor and a grief mentor.
SOME QUESTIONS IRENE ASKS SHEROKEE:
- Why is a little baby “a treasure” deserving to be loved, mourned and remembered?
- What is a loss doula?
- How do you support parents who are experiencing fragile pregnancies and abnormal diagnosis by offering palliative care and networking assistance?
Watch the episode here
Listen to the podcast here
Sherokee Ilse: Losing 3 Babies Of Her Own Prompted Her To Mentor Grieving Parents, Helping Them Move From Deep Anguish And Despair
I’m grateful to have this opportunity to interview a remarkable woman named Sherokee Ilse, who lost three babies of her own through a miscarriage, a full-term stillborn son, and an ectopic pregnancy. She has two living sons. She will be speaking to us from Sun City, Arizona. Sherokee is one of the early pioneers in perinatal loss and bereavement.
Not only is she the author of eighteen books and booklets about loss and healing, including her first and most popular self-help book for parents and families titled Empty Arms: Coping With Miscarriage, Stillbirth and Infant Death but Sherokee also speaks, trains, and consults across the globe. Her profile includes keynote conferences, facilitating workshops, and all-day seminars, speaking at support groups, mentoring, one-on-one support, and training peer counselors, religious leaders, funeral directors, and others on grief and loss.
Miscarriage, stillbirth, Neonatal Intensive Care Unit losses, and sudden infant death along with child loss and general bereavement have been Sherokee’s areas of expertise for many years. She also treats professionals and supports parents experiencing fragile pregnancies and abnormal diagnoses, offering palliative care and networking assistance.
There is so much to learn from Sherokee about this incredibly important topic of infant loss. I’m especially eager to interview her about how she works as a mentor to grieving families, helping them move from the breadth and depth of anguish and despair when one’s child dies or is never born to growth and healing. What a powerful and touching interview this is surely going to be.
Sherokee, a warm and heartfelt welcome to the show.
Thank you. I’m pleased to be here.
It’s so great to have you here. Please tell us about what you call the dark ages when it comes to perinatal loss and bereavement.
It happens that when my son was stillborn, I was on what I call the cusp of those dark ages. What used to happen in America, and some other countries for sure but not all countries, was that when a woman had a baby who died, that baby was whisked away. Mom often never saw that baby. It was as if that child never lived. They were not pregnant with them. Worse than that, the families and the fathers were encouraged to go home and take the room down.
Mother had a baby, was excited, might have been the first, might have been the tenth, who knows? The baby dies. They don’t see the baby. They don’t kiss them hello, let alone goodbye. They didn’t often go to the funerals. The funerals occurred without the mother. I’ve met some of these women. The ache in their heart and all the things that they missed can’t be undone. They’d then go home to an empty room as if they never were pregnant. I call those the dark ages.
Prior to the dark ages though and in a lot of countries, death is normal. It’s a normal part of life. When a baby died, they might sleep with their mother. They might show the baby to the children in the parlor or bedroom. My grandmother was six when her baby sister was stillborn. She said, “I don’t know. My mother probably slept with her. She was there for a few days. We interacted and held her. We eventually helped by digging the grave.” That’s pre-dark ages.
Along comes the good news and bad news about funeral homes and hospital births. When it went bad, it was a hands-off. It wasn’t normalized. It didn’t happen in the home. It’s what I shared with you about these women and families who didn’t get to be involved with their babies at all. I come along and people like me.
Luckily, when we were told that our baby had died and we were ready to give birth to him, someone in the hallway was a midwife from England. She must have told our nurse that we could see the baby and take pictures. We’re like, “Why would we do that? It was such an odd thing.” She planted a seed. At least when the midwife showed Brennan to us in full term, we saw him for five minutes. That was all that happened. We got no mementos.
Thankfully, at least she planted that seed. I didn’t go crazy when this midwife handed me the baby but we did it pretty much all wrong. The dark ages to me were too dark, painful, and hard. It was not normalized. That’s not what happens when a baby dies. A parent should meet them. How do you say goodbye to someone you’ve never met before? I committed my life to helping change that.
You were a former teacher, a school founder, and a communication consultant who felt the need to do something to help others after three of your babies died. Please tell us about your ten-year journey from starting a national organization to October being designated pregnancy and infant loss month in the United States, which is celebrated throughout the world. What an accomplishment, Sherokee.
It was a whole team that made that happen. I’d had a miscarriage previously, didn’t name that baby, and then Brennan died. Within the month, I was writing a booklet, which turned into the small book, Empty Arms. It’s probably over 400,000 copies around the world in English-speaking and Spanish-speaking. Someone from Ukraine emailed. They want to translate it and use it in Ukraine. I wrote Empty Arms and it was like my next baby.
Nine months later, we had an unveiling party and a celebration of this book, which then I realized was not enough for my goal with the book. I wrote it as a self-help guide so that parents who were in the situation could read at least the first section and make some intentional decisions so they didn’t have all the regrets that people like myself and a lot of others had and we could move them out of that dark ages so they could meet baby, welcome, and involve family before they’re rushed to say goodbye. I realized that having a book and wanting it in every hospital in the world wasn’t enough.
Thankfully, someone did a nice article in the paper and it went national. It was me, my husband, David, and the book. I said, “I had to offer something.” I am a problem solver. I don’t sit too long in my pain. I have to do, give, and create. That’s a part of who I am as a person. That’s my personality. I thought, “I should start an organization.” I sat into that reporter and at the bottom of the article, it said that I was going to start an organization. “If anyone wanted to join me, here’s how to contact me.” Seven people did. We started the National Pregnancy and Infant Loss Center.
Was it located in Arizona?
It was in Minneapolis. I’m from Minnesota at the time. I’ve moved to Arizona because I don’t like winter and I don’t have to have it here. My mother-in-law was here and it was great to spend time with her. In Minnesota, we started this organization. There was a beautiful organization called Share out of St. Louis, Sister Jane Marie Lamb. That was another organization at the time. I was able to be in touch with her. We tried to compliment what we were doing. It was wonderful. I was helping them and they were helping us.
We created books and booklets, many of which I wrote and others helped with. We would help people one-on-one. We tried to start a paradigm of meeting people one-on-one in the hospital to help them do it well so they don’t have regrets. If you don’t catch them early, then what we’re doing is putting out fires. We’re saying, “I’m sorry that you didn’t get to spend more time than five minutes with your baby. That could have been different.”
It has taken over 30 years to get that paradigm right. At the time, we couldn’t get into hospitals. I realized that hospitals are a bit too late for most situations. During that time, my team and I did a lot of things to open up doors and create awareness. Finally, it came to us that we needed a proclamation from the president. Reagan was the president at the time so we put out the word.
Keep in mind, and this will age me, that it was before the internet so how do you reach people? There was a group Unite out of Philadelphia and Amend. There were different groups all over the country, little pockets. We sent letters and made phone calls. I thought I was going to need surgery there for a while because I was on the phone all the time trying to get people to join our cause.
We had everybody write stories. Tell your story and what your organization is doing. Send it to your legislators. I believe it was in 1987 that we were able to catch their attention. They passed a bill or put pressure on the president. It was ‘87 when he created Pregnancy and Infant Loss Awareness Month in October. In ’89, we had a big event in Washington, DC.
We had 500 baby quilts with names, hearts, and all sorts of handwritten. We carried them down the National Mall, laid them on the steps of the capitol, and had a memorial service. We had a press conference but no press came. We gathered together and celebrated these babies. We met each other. We had the first walk to remember that was national.
It’s happening all over the world in the country. I chose October. I said, “I’m going to insert myself here.” I will normally be like, “Let’s let the team create an RTS.” All kinds of people and organizations joined in. They took big parts in this. I said, “It has to be October because October was also SIDS Awareness Month.” SIDS had a good start and had money behind it.
For those who don’t understand, it’s Sudden Infant Death Syndrome.
Thank you. I knew that we were so much more similar than we were different. I wanted us to work together. I thought, “If we have a competing month, then we will be competing.” I insisted it is October. Indeed, it’s true. We have worked with sudden infant death organizations and individuals over the years. That turned out to be a rather foresightful thing.
That’s a shame that no press showed up. Do they show up now?
Not much. They don’t want to hear about it. Babies shouldn’t die.
Tell our readers, why is a baby a treasure deserving to be loved, warmed, and remembered as opposed to what they did in the dark ages?
Arian has a beautiful poem that I have partly memorized but I don’t have in front of me. It talks about dreams, hopes, plans, and future. When a baby dies, it’s not just the death of that little body, whether it’s a tiny miscarried baby, a full-term baby, or a one-year-old baby who dies from SIDS or something unexpected but it’s the future. It’s the plans, hopes, and dreams that we have. People’s future is gone as well as their baby is gone.
The last line that he writes is something I quote all the time. “Life can be the same after a trinket has been lost but never after the loss of a treasure.” These babies are indeed not trinkets. It is not a medical event. This is of life that was planned and a future that was envisioned. All of that is gone. Another baby will never replace. We can hope to have and most of us do have lots of love and joy in our hearts when we have another baby but it’s a reminder of the babies who didn’t make it. They still have a place.
When Brennan was born, he wasn’t our firstborn. We’ve had a miscarriage and named that baby later Marama. When our son Kellan was born and he lived, he wasn’t our firstborn. He was our first live born. Those other two babies have a place in our family. They are not medical events. It’s not minor for most people. I will reserve the right if there are people who are reading or people that you know who say, “That miscarriage wasn’t a baby to me.” That’s their choice and right. I do not push that upon anyone.
Every day, I’m helping people it seems. I say, “Is this a love baby to you? If not, that’s okay but let me know so I know how to support you.” Invariably, 99% they’re like, “It’s a love baby, maybe not alive.” We must reserve a room in our hearts. We don’t want to push this upon someone who feels that they weren’t invested and bonded yet. To them, it was just a pregnancy loss. That’s all right.
It’s different strokes for different folks however you process that. Please coach us about what to say and what not to say to families who have lost a baby. That must be a minefield for people.
We could do a whole session on just that. I have a little booklet on it. We could write a large book on it. There’s a lot there. Let’s start from that point of what is a baby. If someone is unsure, let’s say it’s little, young, early, tiny, they hardly told people, and you’re not certain. If they’ve had a baby shower, they had an announcement, and they told you they’re expecting a baby, they’re not expecting a monkey or a fish. They’re not just pregnant. They’re expecting a baby. You can assume this is a love baby. If they’re little and you don’t know where they’re at, ask them. “Was this a baby to you? Are you still seeing it as a pregnancy? Help me to know how to help you.”
Once they say, “This is a love baby,” imagine if that child is 2, 10, or 20. If they died, would we never say their name or talk about shared experiences? Would we pretend that you’re not a parent? “Sorry that your twenty-year-old died but now you don’t have any children so you’re not a parent anymore.” Wrong. You’re a parent, whether your child is alive on this earth or is just in your spirit, heaven, or heart, however you define that. No matter the size or the length of the body, if this is a baby, then this is a child and there is a future that is planned.
What are some of the things to say? “I’m sad to hear about the loss of your baby. Would you like to tell me about what happened? Whether now or later, I want to hear.” Close your mouth, listen, and show you care. You don’t have to fill every silence with words. “Did you name the baby?” “Yes, I did.” “Would it be all right then if I call your baby by name?” From now on, call the baby by name. “We didn’t name the baby.” “Do you have some sort of a nickname? Strawberry, blueberry, sky, angel?” There are all sorts.
One Mama said, “No, I’m not going to name the baby. We’re going to call the baby, baby love.” I go, “There you go. We’ll call the baby, baby love. That’s a nickname.” Ask if you can speak about that baby. “Do you want to tell me about your dreams and hopes? What kind of memories do you have? Do you have any regrets that you feel like talking about? How will you tell people at work when you go back? It might be a good idea to write them a note and tell them what you’re thinking, what happened, what you want them to do or not do. You might want your baby’s picture on the desk. The due day is coming up and you might have to take time off. How hard is this for you?”
Here’s the big question I ask everyone, “Who in your family are mind readers? Who knows what you need, what you want, what will help, and what will hurt?” The only way to find out is to have a conversation. Assume that no one is a mind reader. Even though it’s hard to be the one to empower and teach, we have to. Only I know what I needed and only you, Irene, knew what you needed. Even if this mama or a couple don’t know what they need, they might know what they don’t need. “Tell us what you don’t need and what you need.”
That’s wonderful advice. That applies in other situations too.
It does. What not to say are things that demean. What I’ve been talking about are things that affirm, show love, and recognized this as an important person. The opposite would be, “You were only twelve weeks. Your baby didn’t take a breath so it’s not like you have all these memories that are going to haunt you.” Memories help you. Maybe not at the time. You don’t realize how much but later on, it is the memories that we will cling to and cherish over time.
Minimizing, avoiding, and saying nothing is not a good idea. Also, giving advice to get over it. We never get over it. None of us do. We get through it. The way that we get through it is to find some peace, calm, and hopefully, love and joy but having our love recognized is by facing it straight on most of us. Maybe not everybody but for most of us, that is helpful. Don’t say things like, “You have two others so this third one doesn’t matter. Why don’t you just have another?” That would be like saying to you, Irene, when your husband died, “I’m sorry that he died but you should start looking for a new husband.”
People said that to me.
It’s not helpful. That’s terrible.
Even, “I know a lot of people who remarry.” That doesn’t mean that that person that they loved who is no longer on the side of the veil is not in their heart and not part of them.
We each need to be ready to move to that place. A part of getting ready for most of us is to do good grief work, love them, and miss them. Let our feelings come out from our heads and hearts so that we can work towards, if that’s our next place, finding another love or having another child. To think that anyone can replace a partner, a baby, a ten-year-old, be it the other living children, or getting another boyfriend, to think that that’s going to immediately make it better is not good thinking. That’s not helpful. That’s harmful. Don’t demean. Don’t try to give advice to bring them to a place of joy and happiness. Let them be the ones to lead the path.
When my husband came home, he’d say, “Do you think we could go out tonight?” I’m like, “I’m not ready for that.” After six months, he says, “It’s getting hard hanging out at home all the time. I can’t be focusing on this all the time. Could we please?” That little prodding helped me to move but it had to be a shared experience.
I had to take a bit of a lead because I was a major griever, not that my husband wasn’t but I’m thinking about others in our family. They could not be the lead but they could offer options. “Are you feeling ready that we could have a gathering? Would you like to go out to dinner? We could find a quiet spot.” “Nope, I’m not ready yet. Yep, maybe that sounds like a good idea.” Do you hear how it’s not pushy? It’s inviting and encouraging.
We were talking about that paradigm. What is the best paradigm to help families reduce regrets and maximize memories, which then give comfort and reduce trauma over time?
I am living that paradigm finally after many years. It is amazing and the best. Do you know what the key is? The key is that we interact with someone soon after hearing the news, ideally, before they even birth that baby, be it a miscarriage, a stillbirth, or a fragile baby and they have to figure out if they’re going to continue or end that pregnancy.
What’s happening in Tucson is an amazing paradigm. I love for us to soon start growing it out to the rest of the world. I have a relationship with a doctor. We created something called The Embrace Circle. That’s not necessary but that is the umbrella that we’re using. There are six clinics. They’re Genesis clinics in Tucson. When they tell someone bad news, they invite them to be called by me or one of my team to be helped at the time and overtime.
For instance, I spoke with someone and it was her second miscarriage. It was within three hours of her getting the news. I could say that I’m sorry and I’m sad. Our goal here is to help you feel tenderly loved and cared for during this experience because we don’t need to add trauma and more pain on top of the pain and trauma you already have. I said, “I understand you’ve already had a miscarriage. This is your second. Maybe you can tell me how you did that one and what you’re thinking.” As we started talking, I’m telling her, “You could name this baby. Do you have names?” She said, “We do have names.” I said, “Cool.”
One of the positives about a name is that makes it less medical and more real as a baby to your family and friends. You don’t have to. I plant seeds. I do not tell you what to do. I don’t judge. My team and I are just here to offer ideas and tell you some of the medium and longer-term potential consequences. People are living in the short-term. “I want to get this over with, get this out, be done, and go back home tomorrow.”
There are a lot of regrets that can occur. I was able to help her think about creating a bracelet for the grandparents and her, and go with the baby if she decides to cremate the baby. After D&C, you can still take the remains and have that baby cremated or buried. We have a little sweet love sack. It’s made out of material that we can put the container in and she got one of those. I said, “Take that with you to the hospital if you’re going to do a D&C and have the baby put in there. You could cremate, bury, or whatever buys you time to think about it.”
“You could take river stones and have your family write messages to the baby. You could have a little ceremony after when you get home. Put those around your favorite cactus or a tree that you plant in memory of the baby. Also, if you bury the baby somewhere or you scatter the cremains.” She’s like, “These are great ideas. I hadn’t thought about that before. This is so very different than the first loss. I can already tell I’m feeling better.”
It gives people more control and awareness. They can make intentional decisions, understand the importance of creating memories and realize this is a birth. It’s not a medical event. Even if it’s a D&C, it’s still a birth like a cesarean is. They can have some breath of mind and heart about how to meet a baby well before you say goodbye and how to do it intentionally. I often will say, “When you have other children someday, they’re going to ask what happened. Do you want to be proud of what you did? Think about what you did and what you can do so that you and this child can have a story.”
This paradigm sets them on a path to take power and some control in an uncontrollable situation. Think with head and heart and hear other people’s stories. I always tell stories. Realize that they have options and choices that matter, not just for the now but for the later. We offer a family room where we have books and booklets. We give them gifts. We have a support group. We hook them up with each other. We help people from very early on. It’s the best time I’ve ever heard of.
That’s terrific. I hope you will spread that. When you do, come back on and tell everybody about it. Please tell us about the importance of helping couples communicate and support each other at the time of loss and over time. That must be quite a thing with the husbands and all that too.
My friend, Tim Nelson, and I are not partners. We’re good friends. We brought in our couple relationships and wrote this book called Couple Communication After a Baby Dies: Differing Perspectives. We won’t differ on everything. We often pick people who are not the same but who are opposites or who will balance us out. We talk a lot in there about the differences and how to communicate about it. Often, women speak 20,000 words a day and men speak 7,000 words a day. It can flip.
Why does it flip?
It’s a personality thing. I’m not sure that once it started, it flips. In a lot of women I’ve met, there are some that they’re the ones that don’t speak much and their partner speaks more. I’m not generalizing all and saying this is true for women or partners. In any case, if your partner doesn’t speak much and they come home at night, you ask them how they are, what they’re thinking, and what they want to do about the ceremony you’re going to plan and they don’t say much, it doesn’t mean they don’t love the baby, they’re not involved, or they don’t care. It’s their personality.
Know that there’s a difference in personality and style but the importance is that we talk with each other and we find ways to communicate. We respect that there are going to be some differences. We try to help each other get those differences met. We give fathers and partners words. Sometimes, we have same-sex partners here. When they go back to work, people say, “How’s Mama? How’s she doing?” It’s okay to say, “Physically, she’s doing better. Emotionally, we’re both a wreck.” It says, “We’re in this together. Don’t just be focusing on her.”
In the back of the book, we have some beautiful questions to prompt communication. It can be used in support groups but also a couple then could say, “What did you learn when you were a child about how to handle emotions, pain, and crises? Is it okay for boys to do this, to cry or not? Is it okay for girls to do this?” Where we come from, what our personality is, and what our parents have taught us influence the way we handle things, whether we do the opposite or we do it the same.
I have seen far too many couples split either temporarily or permanently. It wouldn’t have had to happen. I met someone once who helped with my yard, my flower bed. He said, “I know who you are.” I didn’t know him. “I read your book but I read it too late. My wife and I split up. I would say to her, ‘Let’s do this. Let’s move on. Let’s not dwell on it. Let’s not talk about it that much.’ When I read your book, I realized I did the opposite. If I would’ve said, ‘Honey, tell me about it,’ and not tried to fix it all the time, maybe we wouldn’t have split. ‘Keep up the good work.’” Let’s encourage people to talk, respect differences, and not expect the person to do it exactly your way.
That applies to a lot of situations for sure too. Sherokee, what is a loss doula? Please share how you train baby loss family advisors and loss doulas to give one-on-one care at the time of loss and overtime. Please also tell us about the baby loss doulas certification program. Maybe we have a few baby loss doulas in our audience.
Also, parents or grandparents who feel like they have some health in their life. They’ve lived through it and they want to help others. That’s a big group of our people too. When I mentioned to you the embrace circle, the people that I use to help one-on-one with these families at the time, and then often checking back and overtime, are baby loss advisors who are not doulas. They’re not doing doula work. Therefore, we’re not going to confuse them and others and call them loss doulas. These are people who are grandparents, parents, clergy, funeral directors, and therapists. They’re not doulas so they are advisors.
The same training though is for baby loss doulas. Those who are doulas can add this expertise or certification of how to do loss, which is an additional piece and it is different. For instance, a doula is taught not to be their spokesperson, not to tell the nurse what it is that mama wants, and to empower the mama to tell the nurse what she wants. However, when your baby died in labor and if you’re lucky enough to have somebody nearby who can come in and do this loss work or your doula can do this loss work, this is not the time when most people are able to speak their will or wishes. They’re in such shock and pain so there’s a difference.
In my three-day training, we teach how to empower the parents to be independent as much as possible but to recognize that you may need to be their spokesperson or advocate. You may need to take the nurse outside and say, “Here’s what’s going on. This and this happened. She’s in a basket case, a crying place. We had some conversations earlier and this is what she wants. Can you help us help her?” That’s a different role.
I have trained maybe 150 people so far in person, It’s two-day in-person. Day one is online usually. It’s our one-day training where they watch it, comment on it, sit with it, and bring it to the table when they come for the two-day in-person. It’s been hard with COVID. I’m still working on it in person because that’s where the conversation, body language, hugs, and tears are shared most transparently. I find we grow the best when we’re in the same room. I was in Pittsburgh and we had 22 people there. It was the most amazing training. My colleague and friend who are training to be a trainer for our baby loss advisors in loss doulas, Heather Bradley, brought in all these folks. She models such amazing, great work with these families and for these providers.
We have expectations of reading. They have to read my book, Empty Arms, which was the first book that I wrote after Brennan died. It helps people to make good decisions. They have to read Companioning at a Time of Perinatal Loss, which is a beautiful book about how to be a good companion, by Heustis and Jenkins. They have to watch some videos. We come together and have conversations. It’s all practical stuff. I don’t spend much time in theory. They can get that in other places.
RTS is great training and they do a lot of theory but we do most practical. We have real-life experiences. People in the audience and the students, many of them have had losses themselves. They are expected to read a little over 30 booklets and pamphlets about grief and death in general, mother care, and sibling grief. Some of them are only twelve pages. Also, planning a precious goodbye and father’s grief. It’s small. It’s maybe twenty pages.
That’s probably a popular book.
It is. They have to do some mentoring. It’s comprehensive training. We can never fit everything in but they have people, Heather, myself, and others. We can mentor through it. It’s exciting. It makes a difference. Here’s my philosophy. You can take some of this training online, read a couple of books and say, “I’m done and ready.” I’ve met a lot of those folks and they say, “I don’t feel ready.” It’s because you haven’t walked, talked, shared, and hugged through it. What we do is build confidence and competence. We support them through it.
I feel like these families don’t deserve mediocre care. They deserve the best care. They get no do-overs. If we don’t do it right in the beginning, we can’t undo it. If you forgot to invite your sister in to meet your baby and now the baby’s cremated and buried, it’s too late. There’s nothing you can do about that. If you didn’t sing happy birthday to them in the hospital room when they were born and have a movie taken, as Mitch and Susie did, and a birthday cake that we brought in, or cupcakes and a candle that couldn’t be lit because it’s a hospital but there was a candle, and the balloon behind that says, “Congratulations. It’s a boy,” if you don’t get to do those things, then you don’t ever get to do those things. We don’t do mediocre. We do as high of a level of training, teaching, and empowering as we can.
Speaking of all these books that you had them read and you’ve told us about a few of your books, are there other books you’d like to tell everyone else about? Is there anything else you want to bring to people’s attention?
When we list the website for them, they’ll see all kinds of things. The Empty Arms one I have in Spanish. Miscarriage: A Shattered Dream, I co-authored with Linda Hammer Burns. That’s a beautiful one for those early losses. One that I wish this mama would’ve had that I spoke with is called Precious Lives Painful Choices. When we talk about fragile pregnancies, this is to help make decisions and know that they’re between a rock and a rock. The one that follows the prenatal bombshell is an amazing 300-sum page book. They often get it from the library, how to live through the decision that they made. Right away, after they make the decision, that’s the next book to start. One that I was mentioning to you early is the one used in a lot of my training.
It’s wonderful. People should see this.
It’s called Remembering with Love: Messages of Hope for the First Year of Grieving and Beyond. My co-author and I found people to give us bits of advice at the top. We write a little bit about, “Learning to Accept Support: Nothing is Impossible to a Willing Heart.” Sometimes, people don’t want to accept support. They think they should have to do it on their own. I’m not going to call and ask. When they say, “What can I do,” you say, “I’m fine,” but maybe they need to read this and think about this.
At the bottom, it says, “I am willing to let others in my life. I will accept their understanding and support.” Each page has an affirmation on it, as well as someone’s little story in there. It’s any kind of death. It’s one of my favorite books not because I co-wrote it but because most people in the middle of their early grief can’t read a whole book. They could read 1 page or 2 pages. For that, I am grateful to Elizabeth Levang. It was her idea to do one like this. Chewable topics and pieces are better than a whole book for many if not all.
You also support parents who are experiencing fragile pregnancies and abnormal diagnoses by offering palliative care and networking assistance. What’s that like?
Let’s say that our clinic emails me and says, “We gave someone bad news that their baby has a life-altering or life-limiting trisomy. Can you call them?” I try to call them as soon as possible so that they understand that decision-making is important. It’s not our place to judge. It’s their place to make the best decision. There’s a lot of pressure in our society to get it over with or terminate the pregnancy.
What they don’t realize is that there are plenty of people who have continued pregnancies, let nature God take its course, who got to meet their baby, hold their baby, and say hello before they had to go say goodbye. Both of those situations are a rock and a rock. There are downsides and upsides to both. To be sent down a path by a parent, a grandparent, a friend, a clergy, a doctor, or a midwife shouldn’t be that way. It should be their decision where they measure out.
Neither of these is going to be easy or the panacea. Let’s talk through the pros and cons. Meeting your baby versus, let’s say, having a D&C. I’m going to say something that’s a bit rough here and I say it out of love but where they get pieces of a baby, they don’t get a whole baby. I’m not going to sugarcoat it. I don’t protect people. I empower them. I say it lovingly but does one of those feel different to you? Does one of those feel less hurtful at a minimum or less difficult to deal with? They both have their toughness about them.
If they say, “I’m going to end the pregnancy but I don’t want to D&C,” they need to talk to somebody about having a procedure and giving medication so that they can birth their baby and say hello and goodbye to their baby rather than a D&C. We talk through it all. You can cremate and bury or create memories of both. These are love babies. They’re not trash or something that we’re trying to get rid of. People love these babies so let’s treat them like love babies. Let’s not pretend that it’s an easy thing to do.
I have been on the phone with a mama and her team, her doctor, the clergy, and someone from labor and delivery. I forget who else was on there. As a part of palliative care, I was her advocate to help her get what she needed to do. They wanted during the end of COVID to see the baby. End is maybe not the right word but as it was lessening. “Is there a place in the hospital where they could go?” “Not really.” “The only thing that we can do is have this baby go home with them.” This mama wanted her baby to come home.
They’re like, “No, that can’t happen.” I said, “May I respectfully say that the law in most states, all states except for nine in this country, allow a loved one who’s died to go home.” The nine require a funeral director to be involved. They still can bring them home if they can find a funeral director who will help but a person could do it even with or without a funeral director in all these states. They’re like, “Really?” I said, “Yes, it’s this law.” I gave it to them. They went and said, “I’d be happy to work with you. This is important to her. Her children need to meet their brother.” “Let’s work together to make that happen.” That’s what you call palliative care.
Tell me the difference between a grief counselor and a grief mentor. As a grief mentor, how do you help families move from the breadth and depth of despair and anguish when one child dies or is never born to growth and healing? That’s a monolithic task.
I have a Sociology-Psychology degree. I am not a certified counselor. I’m very clear about that to people. I often have people say, “Can I get one-on-one counseling from you? I can’t find a counselor who understands.” We have more counselors out there who might understand but let me say to each of you who are thinking of getting some support, interview them ahead of time.
If you’ve already suffered pain and loss, and you feel like you’ve been let down maybe by a medical provider or a family member because you didn’t know what to do and you believed you could’ve saved your baby’s life, whatever your situation is, we don’t need more of that trauma on top. Interview counselors and ask them what they know, what their experience is, what their philosophy is about the value of a baby, and how to help people. Maybe tell 1 story or 2 about how they’ve helped people. Get a feeling, “Does it feel right for me?”
Many people who contact me say that they couldn’t find that person. I finally decided that I would do some one-on-one with people because I have tons of experience. I’ve spoken with thousands of things. I’m in support groups all the time. We run a support group. It’s not like I know everything but I know a lot so why not share it?
I said to them, “I’m calling myself a grief mentor. I can help you with your grief. I don’t promise to be a counselor. I don’t get reimbursed as a counselor. If you wish to make a donation to me, this is the range of donations people give to me but it’s up to you.” What I do on those calls is to listen. I usually try to get their partner on by the second call, if not the first. Often, it’s what’s going on between them that is or isn’t working.
One dad was in the firefighter-police realm of things. He’s a leader. He is a strong one. He’s not an emotional one. I was able to say to him, “If you don’t share your heart with her and your sadness sometimes, then she thinks you don’t care. Truly, you have it. You’ve already told me you do. You have it within you. It’s okay to let it out. If you don’t let it out, it’s going to pile up. You are not the leader of the police department anymore, the fire department,” or wherever it was that he worked.
“You are a partner here. You’re a parent whose child has died. For you to share with her so she can help you once in a while, her to share with you so you can be of help, that give and take is what’s going to help your relationship grow.” One time, another couple was in a support group. Similar things happened. She said, “It was so amazing. Instead of trying to fix me all the time, which is what was happening before, he said to me, ‘I can’t fix this for you but I can love you through it.’” Did that change their relationship? No, but it shifted things. We do it step by step. It’s all about love. It’s about recognizing their love and sharing love.
You have half and an all-day training across the world about baby loss and grief. When do you sleep, Sherokee? You’re a busy girl.
COVID did allow a lot more sleep time. I was traveling to Australia, the UK, and Canada. I had to cancel a lot of those things. I am a driven woman. One of the pieces with my work is as much as this is hard, it’s beautiful and amazing. I love doing these trainings. I do get joy and love back when I can empower and teach staff, hospital staff, and clinic staff.
The clinic is the place, not the hospital, which is the only place. The clinic staffs are the key here because they’re the news givers so we can get people ready for that hospital. When I teach people like that and I tell people about the stories that I’ve been telling during our conversation, I help them to understand that this is about love. This is a love story. It’s not a death story. This is a story that has death in it but it’s a love story.
As a care provider, I don’t like half a day as much as I like a whole day. I’d rather be there and do a whole day or two days because we can dig in and talk about their concerns, issues, and needs and where they’re coming from, as well as how to help create memories, minimize regrets, and the kind of stories about couples and families.
Do people reach out to you for these or are they scheduled in advance?
I’m not a very good marketer, Irene. I wait for people to come to me.
How about giving us a couple of your inspiring stories, one about helping a family process baby loss? I know you’ve got a story about an intervention with a woman named Heather.
I’ll start with Heather. Heather found me online and asked if I would be her loss doula. That was before we had created loss doulas. I’m like, “That’s an interesting idea.” She had a doula coming but she said, “This is my fourth miscarriage.” She had five living children. She said, “I’ve not done them very well. I want a few things.” I said, “Tell me what you want, Heather.” She said, “I want my husband to be in the room when I have the D&C.” She had issues with what had happened before. “I want to walk out the door with my baby. I do not want to test.”
It happened. We live in the same community. I said, “I’ll help you. Let’s write a birth plan.” That’s one of the things our baby loss advisors do and I didn’t mention that. When we have time, even if it’s just two hours before they’re going to be induced, we write a birth plan. “What is it that you hope and dream about? What were you going to do if the baby had lived?” I wrote those into her birth plan.
I type it in. We talk it through. I tell stories. I send it to them. They look it over. They tweak it and fix it. They hand it to their staff. I said, “Heather, you need to call your doctor and make sure that it’s okay, these things that you want.” If she couldn’t have been able to, then I would’ve said, “Is there someone in your family if you can’t?” Our job is not to take it over for them. Our job is to be their advocate and help them do it. If, however, she couldn’t do it and her family and friends couldn’t do it, then I would’ve been the backup plan. Her doctor was fine with it.
Long story, the pathologist was not going to let her. She called me in on the carpet when I walked in that day and she said, “No, we cannot do that. She cannot walk out the door.” Within three hours of negotiating, she would not allow it to happen. Finally, in the end, Heather’s doctor is like, “We missed the window.” I said, “Heather, you’ll be better off at a different hospital.” She left.
I called my people. We got a different hospital. She had no trouble. My colleague who was the bereavement loss person in the hospital sat in with her and protected her. During the time of her D&C, I came and the doula was there. We created this opportunity for her to hold her baby in a little cradle. We took a ton of pictures. We had sweet mementos. She said, “This was the best miscarriage I ever had. I have no regrets except.” That first one was bad but luckily, we got to end it with a good one.
A funeral director came and had to hand her back the baby in the D&C. Her kids were there when they buried this baby. She named him Journey Peace. It was a lovely experience and she said the best one she ever had. She did a blog about it. I send people there to look at that blog all the time because it’s beautiful.
When you go on Sherokee’s website, take a look at that blog with Heather.
Let me tell another quick story. This one is faster. It’s one of our clients in Tucson who I didn’t find out about until she was already in the hospital and had already birthed her baby. I call her and say how sad I am and that I represent the clinic and the embrace circle. I’ve had my losses. You don’t have to have that but it does help open a door. I said, “Tell me what happened. Have you held your baby enough? Where is your baby now?” I’ll give her the name of Francine.
Francine said, “The baby’s out with the nurses. I don’t know if I’ve held my baby enough but I’m going to be leaving in a few hours.” I said, “Let me tell you about the kinds of things that people do when they have their baby with them. They watch a movie, take a nap, or make something for them. They make those little stones,” like what I was telling you about. “They cuddle in, take a lot of pictures, get some movies, and bring their family in. Might you have missed some of those ideas? Might you leave that hospital and say, ‘I didn’t hold her enough?’ Might you wish that you had done things differently?”
“I plant seeds and it may feel like a bit of gentle pressure but people tell me they’re glad that I gently am persuasive. I won’t judge you if you don’t ever see your baby again. Let me say that a lot of people walk out with regrets. Our goal is to help you have none or very few. You have the right to hold your baby again and spend some more time. This is all the time you get with them on Earth. Are you sure that you’re done?” She said, “Thank you for all of that. I’m going to ask to have the baby back.”
We don’t usually hear from these families for months unless they’ve got this kind of help but she called about three days later and I kept the message. She said, “Sherokee, you made such a huge difference in my life.” That’s what our baby loss advisors do. It’s not just about me, our baby loss doulas. She said, “I never would have held my baby again. I realized that I had missed a lot. I want to thank you from the bottom of my heart for teaching me that I should spend more time with my baby.”
You need to tell us what is the I-am-a-bereaved-parent card.
Friend makes these cards to give to the clinic when they walk in the door. It says, “Bereaved parent, I’m here for my follow-up appointment.” There might be other I-am-bereaved-parent out there but I love this one. Let me read to you the back. “Please take me to an exam room right away. It’s hard to sit in a clinic with other mothers with their living babies. I don’t want to complete a postpartum depression scale because it can feel like when you grieve, you’re sick, ill, and depressed. Grief is normal.”
Sometimes, these postpartum depression scales can cause docs to say, “You need to be on medication,” when they’re just grieving appropriately. “Ask me about my baby and call him or her by name. Speak to me honestly, openly, and kindly. I need your support. Listen to my concerns and ask how you might help. I am and forever will be a parent of this baby.” This, except for the first two, could be for anyone that you could hand to them. It’s saying, “Treat me like a mother or a father. I’m a parent. I happen to have had a child die and they were little but I’m changed. I’ll always be their parent.”
It’s the ultimate sensitivity training in a way. How about telling us about the Find an Advisor page on your website? How does that help both grieving families and those who are ready to give back?
If they go to www.BabyLossFamilyAdvisors.org, there are a couple of pages that people might like. One is it says Locate Advisor. It lists the different countries. It starts with states and goes down to countries where our team is available to maybe even be in person if you’re lucky but many of us will do it anywhere, anytime.
You have a huge team spread out throughout the world. What an accomplishment, Sherokee.
We’re always trying to expand that. Some of us say, “It doesn’t matter where you are, who you are, or when it is, call or email us.” That would then help them to connect with someone. Those who are reading, if you know somebody who got bad news especially, get them in touch with us. Here’s the thing. If you say to them, “Go to this page, find this name, and call this person,” most people won’t do it. In the many years that I’ve been doing this work, I can count on probably two hands total of the people who reached out to me. We have to reach out to them.
The best way is to say, “There are people who can help you to minimize regrets and memory and help you make the best decisions so you don’t regret it later. They need to be in touch with you immediately. Trust me when I say they’re kind, gentle, and compassionate. They will help you. I would like your permission. May I call them so that they can contact you?” That’s the way it works. It’s the best.
On that page is a Memory-Making page. For those who’ve had a baby die and they’re looking for ideas for memory-making or families, you might want to help your loved ones whose baby has died, go to that page and you’ll get a bunch of ideas. It might spur some new ideas. If you get a new idea, email me because I’ll add it to the page,
What is your message about the importance of healing to share with our audience?
There are so many, aren’t there? One of them that I have is to trust your instincts. Know that when you love and grieve deeply and if you do it well, that’s the best way. It makes perfect sense if it comes from you so trust your instincts. Isn’t the size of the body or the length you’ve known someone that determines your need for support and to grieve? It’s how much you love them. If you love them, then you love them. That’s not measured. It’s real.
I believe, as I think you do too, that people have choices. We don’t have a choice when our baby or our loved one died. We can’t control and fix that. A little bit of mojo back, once we get off the floor, I call it the Grand Canyon in the middle of a horrible storm, and we’re able to even be on our knees again, we have choices. Our choice to stay a victim is real.
To stay at the bottom of that Grand Canyon or in the puddle of our pain is a choice. I didn’t choose that because I didn’t find that helpful. I didn’t find that I could breathe hardly. I didn’t know if I would live. I wanted to die. I wanted to go to sleep for a year and wake up but it didn’t. I get nothing fixed. It didn’t get any better until I started to do something to help others.
What I’ve realized is we have a choice to do, to be, to work it, to grow, to grieve, to mourn well, to seek support, and to give to others when we’re ready. We have a choice. No one can do that for you. You have to be at that place where you’re willing to make that choice but before you make the choice, you have to understand that you have a choice.
A lot of people don’t say, “I have a choice,” about myriad things. It’s true. Everyone reading this wants to connect with you. How do they do that? Give them your website or however you would like them to contact you.
Let me give you my email address. It’s my whole name. SherokeeIsle@Yahoo.com. I’ll write you back an email and you’ll see all three of my websites, like SherokeeIlse.com and BabiesRemembered.org. I put my phone number on my emails. I am contactable because I’m in it with you. I will do whatever I can to help connect you, support you, or help you find people, resources, and literature.
Sherokee, what is your tip for finding joy in life?
Besides doing this work, which I love and touches my heart so deeply, first of all, I want to say that we must find joy in our life. I love to make things for people. I like to make hearts with babies’ names. I sell and send it to people sometimes. I like to sew things for my grandkids. I love to read to escape. I love being in Arizona where I can be in the sun, go for walks, and sit and swim. Finding joy is something I try to do every single day. I even used to make little jars and I’d put beads on them that said, “Joy.” I would send, share, and sell them. I put little notes in there of blessings and gratitude so that when I’m feeling down, I can pull out some of those things that bring joy and blessing. Seek blessings and joy please, everybody.
Sherokee, your many years working closely with tens of thousands of families in roles such as peer support, parent advocate, compassionate navigator-advisor, social media friends, and mentor have helped you to be an active voice for parents and family’s needs, desires, and wishes. As a bereaved parent yourself, you speak in the first person about what families feel, how to speak to them, and specifically, how to be helpful. What a tremendous blessing you are.
Thank you from my heart for this eye-opening, powerful, and surely, very touching interview. Here’s a reminder, everyone. Make sure to follow us and like us on social at @IreneSWeinberg on Instagram, Facebook, Twitter and YouTube. As I like to say, to be continued. Many blessings. Bye for now.
- Sherokee Ilse’s Website
- Sherokee Ilse’s books: Empty Arms: Coping With Miscarriage, Stillbirth and Infant Death, Couple Communication After a Baby Dies: Differing Perspectives, Miscarriage: A Shattered Dream, Precious Lives Painful Choices, Remembering with Love: Messages of Hope for the First Year of Grieving and Beyond
- Jane Heustis’ Companioning at a Time of Perinatal Loss referenced in this episode
- Baby Loss Family Advisors
- Babies Remembered
- Connect with Sherokee Isle by Email