00:00:00.000Hi, all. Joe here, and you are listening to Under the Influence.
00:00:11.240Today's episode is a difficult one, and we're going to talk about the loss of a child.
00:00:18.000I think it's an important and powerful episode, but I also want you to protect yourselves.
00:00:23.160Our guest is Susie Shaw. She's a mom who faced the unimaginable loss of her child, William,
00:00:28.480and has emerged with immense strength and resilience. Susie's world turned upside down
00:00:35.060on February 19, 2019, when William went missing during a family ski vacation in Big Sky, Montana.
00:00:43.960Was eventually found dead, and the tragic incident marked the beginning
00:00:48.240of a life forever changed for Susie and her entire family.
00:00:52.360today we're talking about the challenges of grieving we're digging into the need for better
00:00:59.720bereavement support in our society and we're talking about the world of grief influencers
00:01:05.060online who can both help and harm those going through one of the worst moments of their lives
00:01:12.020but first we're going to start with suzy's story i had my first son in 2009 his name was william
00:01:21.420and then we welcomed our second son Kai in 2012 and it felt like we were living the dream. My
00:01:31.380husband was doing great at his job. We had just recently bought a beautiful home in Carlisle,
00:01:37.840Massachusetts. I was a stay-at-home mom, really happy in that role and it felt like, again,
00:01:46.080We were just on top of the world. My husband is a big, avid skier, grew up skiing and wanted to
00:01:53.500share that with his children. I also was a skier, but a fair weather skier. But I went along with
00:01:59.660the family and enjoyed our ski vacations. So in 2019, we set out for Big Sky, Montana
00:02:07.980for a family ski vacation. William was nine at the time. My son, Kai, was six.
00:02:15.400And we had a couple of great days out in Big Sky. But on Tuesday, February 19th, 2019,
00:02:27.340my son, William, my oldest, he was following along behind my husband on a very easy trail
00:02:34.300after conquering Lone Peak which is the hardest part of Big Sky. So they were just traveling back
00:02:41.780along the mountain to meet me and my younger son who weren't able to do the really hard Lone Peak
00:02:47.400and in an instant everything went from we were having a beautiful family day on the mountain to
00:02:53.240absolute chaos and tragedy. William went missing for about two and a half hours. It started to snow.
00:03:00.820It started to get dark on the mountain. We couldn't find him. And eventually, probably around 4 p.m., he was found. He had suffered a blunt force trauma to the head and chest after having gone off the trail and he hit a tree.
00:03:15.340and they found him at the bottom of a tree and our whole life completely changed after that moment
00:03:21.440we didn't really have any support out in big sky at the moment that he died we were shocked in
00:03:29.460deep shock we immediately felt the need to escape big sky montana so the next morning after having
00:03:37.620not slept at all we boarded a plane back home to corlisle mass with just our six-year-old in tow
00:03:44.360We had gone out as a family of four. We returned as a family of three and started the long and still enduring process of trying to figure out how to move forward after child loss.
00:12:42.660And so I've started trying to include other people in my letters so that I can start connecting in that way.
00:12:51.940And I wrote to Nick to tell him how unbelievably happy I was that he was finally able to get back to skiing with his boys, which had been a dream of his.
00:13:04.180And I just felt like I really wanted him to know how much I saw him and how much I realized that was an important part of our grieving process for him.
00:13:15.140So now I can, I feel like I can write these letters and share and be vulnerable in lots of different aspects of my life instead of just with William.
00:13:26.220And how has your marriage changed through all of this?
00:13:30.020Again, it's unimaginable and it has to change both of you.
00:13:35.960And I don't know if both partners necessarily change in the same ways.
00:14:49.240I mentioned that we go to a family support group. My husband doesn't go anymore. He went for the
00:14:55.260first year and that was enough for him. He's not a group guy. And I understood that he wanted to
00:15:00.080stay home and I continued to go with Kai and now I bring my new son Bodhi with me. But it was a real
00:15:06.380challenge that first year especially. Everything about our marriage at that point reminded me of
00:15:11.900William. Even having sex with Nick was really hard because I felt like William was right in between
00:15:17.880us. And there was just so much pain and so much sadness that I didn't feel comfortable connecting0.63
00:15:23.340on an intimate level. We just had to do a lot of work going back to the luxury of grieving well.
00:15:30.740We were just able to spend the time together to work on our marriage, to work on our family.
00:15:36.560There was a lot of bumps. There still are. We butted heads a lot once our third child came
00:15:43.260into our life. It wasn't planned in our original family. We were very happy having two children,
00:15:50.040William and Kai. But when William died, we just felt like our family was so incomplete. And we
00:15:56.960did decide together that we were going to have another child. And we thought we understood the
00:16:02.380implications of that. But once Bodhi arrived, things got really hard for quite a few years.
00:16:10.140and Nick especially really struggled with having another infant in the house and a toddler in the
00:16:16.300house. He was also born during COVID. And so we didn't have a lot of help to support us in having
00:16:23.360an infant and a toddler in the house. So that put a real strain on our marriage as well. Luckily,
00:16:28.360things have turned around. Bodhi's now four and a half and he's a dreamboat. But adding him to
00:16:35.340our family was a real challenge. But again, we just, we work on our marriage. We work on
00:16:40.640a relationship on a regular basis. Yeah. I mean, because even when you don't go through something
00:16:46.640like this, all marriages are work. It's a constant process. Every day. Actually, every single day.
00:16:56.980Yeah. It's true. It's true. How do you guys keep William alive within the family and especially
00:17:05.180for Bodhi who has never met him that's right so Bodhi was born after William died and we I didn't
00:17:14.140really know I had never had this model before like how do you teach your child about their brother
00:17:19.940who is no longer here and yet somehow we have Joe because Bodhi comes home from preschool on a
00:17:27.060regular basis with pictures that he's drawn for William with books that he wants to share with
00:17:33.600William like he he's part of our everyday existence and Bodhi has completely picked up on that
00:17:40.140it started with just having a picture of William in Bodhi's room when he was born
00:17:44.720and we have just continued to talk about William and we continue to tell stories about William at
00:17:52.320our kitchen table at bedtime we're just always bringing William into the picture our son Kai
00:18:00.600who's now 12 and a half he's continually talking about William as well both with us and to Bodhi
00:18:08.440like I said Bodhi now comes to our grief support group and so that's another opportunity for Bodhi
00:18:13.680to understand that there are other kids like him who are siblings and so Bodhi talks about him
00:18:21.600there another thing that we did fairly early on in our community we started a non-profit it's
00:18:27.500called William's Be Yourself Challenge. And it was started in response to a lot of William's
00:18:33.960friends. As they were growing up, they didn't feel like they had any support for their grief
00:18:41.360because friends of kids who die don't have support groups. There are support groups for moms and
00:18:47.640siblings and that sort of thing. But William's friends were at a loss as to how to move forward
00:18:53.520When they were in fourth grade and sixth grade and sixth grade, these kids are just so confused and they're missing their friend.
00:18:59.700So we started an organization where we provide opportunities to support these kids.
00:19:06.840And Kai is a participant in all of the things that we do.
00:19:10.660And now Bodhi is a part of all of the things that we do.
00:19:13.260So our community is very involved in remembering William too.
00:19:17.160And so I think that really helps to normalize talking about our dead people.
00:19:21.800When we bring it into the community and we show the community that we're willing to talk about it, then more people start to engage with us.
00:19:29.920Everybody in Bodhi's preschool class knows that he has a dead brother.
00:19:47.680And I don't know why we're shielding them.
00:19:50.040And it's only been in the past, I would say, maybe even less than 100 years because kids used to see siblings die on a much more regular basis.
00:20:01.840Kids used to die all the time. That's why people had so many of them.
00:20:30.000Every 19th, William died on February 19th.
00:20:33.220Every month on the 19th, we have a taco dinner in his honor, and we light a candle.
00:20:38.000I want William to be a huge part of our existence.
00:20:41.900Just my other two living children are a huge part of our existence.
00:20:45.340And I think only then, when we start to bring these people who are important to us into our lives, can we start to normalize it outside of our own families. We celebrate Day of the Dead, because I think it's such a beautiful holiday. It's an opportunity for all of us to say our dead people's names. And so many of them feel comfortable saying our dead people's names. And you watch the movie Coco.
00:21:11.000And if I love that movie, such a good movie. And it just expresses to you, if you don't say your people's names, then they will truly die.
00:21:20.940I had this wonderful woman in my community. She teaches religious education at the Unitarian Church that I go to.
00:21:27.880and she told me we all we die three times once when we take our last breath once when we're
00:21:35.460put into the ground and once the final time when somebody says our name for the last time
00:21:41.660and and i will never stop saying william's name and i don't think my children will either because
00:21:48.020we don't want him to truly die he's gone from our lives physically but like i'll never stop saying
00:21:53.420his name. And his name is a regular presence in your house, right? Oh, for sure. His name is
00:22:01.800probably said in our house at least 15 times a day, just like a normal day, because we hang out
00:22:08.060in William's room. There's all sorts of Legos in his room that we all go and play with. Is his room
00:22:13.320the same as it was then? No, no. And that's always like an interesting dilemma for families who have
00:22:22.000lost children. Some people keep it the same. Some people keep it that shrine-like place.
00:22:28.260I was very adamant very early on that I didn't want it to be his childhood bedroom with the
00:22:35.160bunk beds. I just didn't feel like I could be in there like that. And so we changed it into a
00:22:42.780meditation den. It has a nice daybed and a little altar to him. But the shelves in there are still
00:22:51.360filled with all of his favorite things so it's this unique mix of being a room where we can hang
00:22:58.980out and rest but also very evocative of him and all of his favorite things and that really works
00:23:05.160for our family i want us to take one more quick break and when we get back we're going to talk
00:23:11.600about something that you and i have messaged a lot on the instagram about which is grief influencers
00:23:45.720And I want to talk a little bit about grief influencing and how it's evolved, what it is.
00:23:55.100I think it's changed since William passed.
00:23:58.340What has your experience been with grief influencing?
00:24:01.800And how do you want to show up for people online as someone who has been through this kind of grief?
00:24:09.600Yeah, I think you talk a lot about how there's if there's a subject matter, there's an influencer for it. And I think that's just as true with grief. I recently mentioned to the woman who runs our grief support group, I'm like, can you believe how amazing the whole grief influencer space is getting? There's just so much support and so much information out there.
00:24:31.820And she's, oh, Susie, yes, and I think you've curated your feed to be specific for grief
00:24:43.080I follow a lot of grief-inspired accounts or grief influencers.
00:24:49.260So I do feel like it's everywhere for me.
00:24:52.180But I don't know if your average Instagram user is going to see it as much as I do.
00:24:57.100But after William died, I was looking for people in the same situation. I was looking specifically for moms whose boys had died skiing. And there's not a lot of that specific type on Instagram.
00:25:14.920But as I started to go through and look for different people out there, I did find that connection and that community that I was looking for. And then I started to share my experiences as well. I went from being, I think my original Instagram name was Susan Shaw, which is my name.
00:25:35.120And I now go by bereavement mom, because I feel like that's a huge part of my personality and my character now. I am a mother, but I am a bereaved mother. And that's a really important aspect of who I am today.
00:25:52.760And so I became bereavement mom on Instagram to connect with these grief influencers, but also to share my story and my thoughts about bereavement and being a bereaved mom.
00:26:05.260And I think it's so helpful. It's so helpful to have any type of community, whatever it is you're going through.
00:26:11.860And the bereavement community I've found is unbelievably supportive. We, in general, as a culture, talk a lot about how horrible and bullying Instagram can be. And you see so many negative comments out there. And I don't yet feel that in the bereavement community, which is really nice.
00:26:32.480I don't know if it has to do with the fact that like how can you be mean to a bereaved mom that's
00:26:38.440just so cruel but it just seems like such a supportive community and we're all striving
00:26:45.040towards the same thing education trying to figure out the best way to walk through grief everybody's
00:26:53.400grief experience is different but I think we're all just out there trying to normalize the grief
00:27:01.260experience and educate people. And it's just important to grieve, right? And that it's okay
00:27:07.320to grieve and to share and have those enormous emotions because it's an enormous life-altering
00:27:13.640event when you especially lose a child, but just lose any important person in your life.
00:27:20.080I've been really impressed with the grief community online, and I've met some fantastic
00:27:24.680people. I've met some of them in real life. I chat with some of them just through Instagram,
00:27:29.900But yeah, I recently went to a conference out in L.A. called End, and it's a conference dedicated to the art of ending your life well and grieving well.
00:27:45.880I actually have a friend whose parent has decided to end their life.
00:27:52.000They're faced with a terrible, chronic, deadly disease, and they have made this decision.
00:27:57.880And and us having the conversation about the process and about them, we cried, but we also laughed very hard.
00:28:04.740OK, because you talking about death can be all of the things is what I'm starting to realize.
00:28:13.300Yeah, it can be all of the thing. It is so sad and it is so tender and it can be uplifting and beautiful and insightful because it has to be because it's so heavy that you also have to add.
00:28:27.880laughter and light to the whole experience or like you're just you're not going to make it
00:28:33.800if you're not able to find some sort of lightness eventually i'm not talking these early days weeks
00:28:41.200and months of grief those are dark and they almost need to be dark but eventually it's such a positive
00:28:49.300thing to turn towards that light that's where you find the hope that's where you find the will to
00:28:56.020keep going we needed to keep going because we had a six-year-old Kai who was depending on us right
00:29:02.120we couldn't stop as much as we wanted to to stop parenting being alive in those early days and
00:29:11.060weeks we couldn't because there was this tiny little guy looking up at us with his huge eyes
00:29:16.220needing us to support him and so we were able to find that light mostly through him to be honest
00:29:23.040but yeah just finding that community online has been really beneficial to me and I've started
00:29:29.980I'm I have no degrees in grief or psychology or anything like that but I do feel like I'm a grief
00:29:35.900expert because of the path that I've walked and the self-education that I've given myself
00:29:41.860and the things that I'm trying to do now to give back to the grieving community like I said before
00:29:48.420we started this non-profit and for the past few years it's been very community-based but this
00:29:55.660past December we just launched an incredible initiative that I'm so proud of and I'm so
00:30:01.160excited about and it's called The Greenhouse. The Greenhouse is our answer or our support
00:30:08.360for grieving families. Like I said before grieving well is a luxury and so many families aren't able
00:30:16.900to afford the luxuries of getting away, taking time to reset. And so our aim with The Greenhouse
00:30:26.760is to purchase a vacation home in Falmouth, Massachusetts, where I'm from, which is on Cape
00:30:32.380Cod. And we want to offer free week-long vacations to grieving families so that, like our family
00:30:40.920got to experience. These families will be able to come to this house by the ocean and just spend a
00:30:49.160week connecting with each other, starting the long journey of healing in a space that is nurturing
00:30:56.080and specifically curated for their grief from somebody who gets it. So we're in the midst of
00:31:02.740raising money for that initiative. And I couldn't be more excited to be able to provide these
00:31:08.960families with something that's so important in the grief journey that just isn't available to
00:31:14.880so many people that's so beautiful i love that is there anything else like that no there is not
00:31:21.960which which is both exciting for me to start something like this and that's one of the
00:31:28.880roadblocks is because there's nothing like this people don't quite know what we're getting into
00:31:32.700But there are similar programs. There is a few houses that sort of support families who are going through cancer treatments, right? If you're a young family and your child is in cancer treatments, you can take a free vacation.
00:31:46.940There's a lot of things for veterans and their families to have these little escapes.
00:31:52.600But as all the research that I've done shows, there's nothing for families who are in grief.
00:31:58.020And it's so important for these families to preserve what they have left.
00:32:03.260We went from a family of four to a family of three, as I mentioned.
00:32:09.180And we had to figure out how to proceed, how to preserve that family we have left.
00:32:14.520And so we want to be able to give grieving families the opportunity to do that, to just take some quiet time away from all the chaos and just reset and start their healing journey.
00:32:26.600And we want to offer that to families who have both lost children like us and families who have lost spouses or parents.
00:32:33.780Because talk about a financial hit, like if, let's say you're a family who has two working parents and you lose one of them, that's unbelievably traumatizing, not for just the family unit, but your finances as well. So our mission is to be able to serve all of these families.
00:32:51.320How can people find out more about that and also find you?
00:32:54.580Yes. So we have all sorts of information about our nonprofit, Williams Be Yourself Challenge and The Greenhouse at www.wbycgiving.org. I'm also on Substack as Suzy Shaw, and I am on Instagram at bereavementmob.
00:33:20.540Thank you so much for being here, Suzy.
00:33:22.680Thank you so much, Joe. I really appreciate the opportunity to speak with you about this.