Become a Creator today!Start creating today - Share your story with the world!
Start for free
00:00:00
00:00:01
74. Hope Is Stronger Than Fear-With Christine Soutter Suau
74 Plays4 years ago
Christine Soutter Suau, is the founder and President of the WhyNotDevin Foundation to Ende DIPG, a non profit that raises money to provide financial and emotional support for families of children with Diffuse Intrinsic Pontine Glioma (DIPG) brain tumors. Chirstine is also the founder of Meant to Bee ME, a motivational speaker, blogger and podgaster -SHE-nanigans with Christine & Jenn. She is a single mom to four boys. Devin, her youngest son, passed away in 2017 to DIPG, at the age of 6. He fought a courageous battle and made a huge impact on DIPG awareness. Christine faced her son’s challenges head on and created and instituted The WhyNotDevin Foundation in honor of Devin, and is a tireless steward of the cause for helping families manage the many costs-financial and otherwise-associated with DIPG brain tumor and treatments. She also advocates for DIPG awareness and worked with Govenors and Congress to have May 17 proclaimed as DIPG Awareness Day. Christine has also had the City of Boston and Framingham proclaim October 20 (the day Devin passed away). A day of kindness and friendship, in honor of Devin’s memory.
Christine's journey can be followed on her website www.meanttobeeme.com. Through motivational speaking events she spreads a message of hope, perseverance, and to inspire others to know that they can overcome the darkest time in their life and find happiness again. She speaks about Devin to keep his spirit alive, about her three sons Colin, Owen, and Brenden to highlight the truest meaning of resiliency, and about a mother's love. Christine's speaking engagements have included The National Brain Tumor Society Gala, The National Brain Tumor Society Walk, Northeastern Relay for Life, Syros Biotech, Metrowest Conference for Women, and Peloton Homecoming, to name a few. She has also been featured in Strong Magazine, interviewed by CNN, People magazine, and Candy O'Terry "The Story Behind Her Success" podcast. Christine has been the recipient of She's Local Goddess Year Award, Peloton's Comeback Story, and Beauty Revived 2018 Most Beautiful Moms.
Ways to Contact Christine Souter Suau:
Websites-
http://www.Meanttobeeme.com
http://www.Thewhynotdevinfoundation.org
http://www.She-nanigans.com
IG-
http://www.instagram.com/meanttobeeme
http://www.instagram.com/why_not_devin
http://www.instagram.com/Shenaniganspodcast
Facebook-
Christine Soutter Suau
#whynotdevin
Contact Kendra Rinaldi to be a guest or for coaching:
http://www.griefgratitudeandthegrayinbetween.com
Recommended
Transcript
Introduction to the Podcast
00:00:01
Speaker
people just helped us create incredible memories. So within that short timeframe of Devin's fight, we created more memories than most people do in a lifetime together. And from taking a limo to the Celtics game, to our Make a Wish trip, to fundraisers that we got to see so many people that we loved together and just had fun while people were
00:00:30
Speaker
raising money for our family to help fight this. Hello and welcome to Grief, Gratitude, and the Gray in Between podcast. This podcast is about exploring the grief that occurs at different times in our lives in which we have had major changes and transitions that literally shake us to the core and make us experience grief.
Christine's Story Begins
00:01:00
Speaker
I created this podcast for people to feel a little less hopeless and alone in their own grief process as they hear the stories of others who have had similar journeys. I'm Kendra Rinaldi, your host. Now, let's dive right in to today's episode.
00:01:23
Speaker
Today, I'll be chatting with Christine Suders-Swell. She's a mom of four boys, her youngest being Devon, who is the topic of our conversation today. Devon was diagnosed with a rare brain cancer, which I won't even attempt to pronounce. I'll have Christine share that story.
00:01:46
Speaker
And also we'll be talking about his short life after that diagnosis as well, but everything else that's come from that. And I'm just so honored that our common friend Lisa connected us, Christine, so that we'd be able to chat here today. So welcome. Thank you. I'm so honored and grateful to be able to chat with you and be able to share Devon's story.
00:02:14
Speaker
You know, what intrigues me the most is even just that when I started seeing posts on Facebook and stuff when Devin was sick first and then afterwards during his passing, because again, I have a lot of friends that live near where you live, and I used to live in your town in Framingham, Massachusetts. Is that where you live to? That's where you live right now still? I do.
00:02:39
Speaker
So, it was just the way that, first off, the name of the foundation. Why not Devon? Just that in itself spoke like
00:02:54
Speaker
so much
The 'Why Not Devon' Movement
00:02:55
Speaker
about just who you are and who your family is because most people say the why me why you know and so just that so Just yeah, I'm just excited to have this conversation and even just dive into getting to know you and getting to know Devin more as well in this conversation
00:03:14
Speaker
Thank you. Yeah. Why not Devin? I don't know if you want me to kind of start from when he was diagnosed. It'll kind of feed into that pretty quickly. But yeah, I had four boys in five and a half years and life was crazy and fun and they were super active and we did everything together.
00:03:34
Speaker
And so one Friday night, we were skiing and snowboarding, and Devin was a snowboarder. And we thought he fell, and his instructor brought him in, and we thought he got a concussion. And a few days later, we saw our pediatrician. She thought he had a mild concussion, said he could go back to school, and then he began throwing up. So by that Tuesday night, we found ourselves in an ambulance to Children's Hospital.
00:04:01
Speaker
and were told that Devon had what's called diffuse intrinsic pontine glioma, often referred to as DIPG, which is a rare, uncurable, not survivable cancer in the brain stem. And the only form of treatment is radiation. Everything else is really a trial and up to the parents to kind of figure out. So when you go from having this seemingly, you know,
00:04:31
Speaker
perfect's not really a word, but yeah, like this just fun, you know, active life with these four boys who are so full of life and love and laughter. And, and then you're told your child has eight months to two years to live. You're like, no, that's not going to happen. And so, um, I,
00:04:53
Speaker
met this the radiologist came in it was like just we were living in this like dark 24 hours and this rate had a radiology at Brigham women's hospital where ironically i had all of my children came in um to see us and she was this little tiny brilliant radiologist and i remember she's kind of going over with us what was about you know to happen with radiation and and i just looked at her and i said is there any speck of hope that you can give me because all of these
00:05:22
Speaker
neurosurgeons, neuro-oncologists had just completely crushed us. And she looked at me square in the eyes and just said, yes. And it was literally all I needed. And so I was like, from that moment on, I was like, this kid's got this. And so I've always been a believer in everything happens for a reason. But when we were kind of in the initial stages of this, I thought, OK, everything
00:05:50
Speaker
wasn't curable until it was. And so why can't Devon be the first to be DIPG? And so that's how why not Devon was born.
00:06:02
Speaker
We started
Community Support and Make-A-Wish Experience
00:06:03
Speaker
a Facebook group just to let our family and friends know, and that's where Why Not Devon on Facebook came from, because everything was so fast and furious and we're very, our family's very unfortunate to have so many friends and my ex-husband and I both come from pretty large families. So it was a way to let everyone know what was going on and what was happening. And it quickly grew to like 25,000 people within days.
00:06:31
Speaker
It was pretty intense and like complete flip of life. And so then you know right away you have all the support because you create this hashtag and that was a Facebook group, yes, that you created the one that was so you feel you see the support from friends and then you had a lot of support just from community organizations also as well, correct? Like there were different
00:06:57
Speaker
So share a little bit about all the different things that the community did to support you during that time. So it was incredible. When you have kids, they get involved in different sports. And so you get to know people in those different circles. And then the school that they're in, at that point, I had
00:07:23
Speaker
Oh, and Brendan and Devin were in the same elementary school and Colin had just gone to a middle school, but they all played lacrosse and soccer. But immediately it was all of these different groups really embraced our family. And they, there was a whole campaign online with the hashtag, why not Devin?
00:07:39
Speaker
People and sports groups and all sorts of dynamics were just posting online their group with the hashtag why not Devin police officers kids you know hospitals sports.
00:07:55
Speaker
And then Kim Kardashian tweeted a picture of Devin and I and just said, pray for this family. And this little boy has a rare uncurable disease called DIPG. And then that spread like wildfire. It was incredible. And I can't describe the amount of love and support. Someone created a meal train. And we have several allergies in our family. And people were cooking.
00:08:24
Speaker
the most amazing, it wasn't like your normal lasagna casserole being dropped out. It was incredible and treats for my kids. And then people also, and I don't know whether they had the intent to do this or, again, everything happens for a reason, but people just helped us create incredible memories.
00:08:47
Speaker
Within that short timeframe of Devon's fight, we created more memories than most people do in a lifetime together. And from taking a limo to the Celtics game, to our Make a Wish trip, to fundraisers that we got to see so many people that we loved together and just had fun while people were raising money for our family to help fight this.
00:09:13
Speaker
That's so amazing. Now, I'm curious, what was the Make-A-Wish? What wish did Devon ask for when you went to the Make-A-Wish? So, we all kind of talked about our entire family and, you know,
00:09:31
Speaker
Disney was definitely one that was thrown around, but we also wanted to make sure Devon was going to be able to enjoy whatever it was we were doing. So we went right after he finished radiation, which they call the honeymoon period, honeymoon phase or whatever, we went to Turks and Caicos.
00:09:49
Speaker
So we went to the beaches there and my kids it was it was um Devin was feeling great so we got to do a lot of different things there but we kind of wanted it to be you know I mean it was his make a wish but at the same time his three brothers were going through this horrific nightmare and so it was kind of all of their make a wish um
00:10:10
Speaker
And so Turks and Kika was perfect because if Devin wasn't feeling well, he and I could hang back while the others went and did something. But he
Coping with Hope and Beliefs
00:10:19
Speaker
was incredible there and it was unbelievable. That's so amazing. And what you said was so important to know that it's not just the person that's being diagnosed that's going through this. It's the whole family and in this case with your
00:10:36
Speaker
three other boys. The fact that you guys were also able to honor that and you know also give them what they needed in this process that's super important too. Yeah I think that was super important to me from the beginning because I've
00:10:53
Speaker
I haven't known a lot of people who have had a child with pediatric cancer, but I think your initial and immediate reaction is you have to take care of the child that's sick. And the others are okay, so they don't need, you know, and I don't know if my feeling was different because we were faced with a terminal. But even prior to that, my kids, like, I took all four of them to the grocery store. I took all four of them to different practices. Like, they were all together anyway, so it was kind of a normal thing for me.
00:11:23
Speaker
I've seen happen a few times is, you know, unfortunately with this terminal diagnosis, the child passes away and then the other siblings are left and they're, you know, it's kind of a really weird space for them. And so for me, it was just really important to have us all together all the time.
00:11:44
Speaker
What you're mentioning happens in those situations and then it can also happen even afterwards too in other situations that are not illness related to when so much of the grief of the parents is, you know, consumed and the grief of the child that's died create a little bit of
00:12:06
Speaker
I don't know I don't want to say the word resentment but it can in some cases because you're kind of like but I'm still here you know you know but I'm also still here you know. I listen to a podcast that was so impactful for me probably.
00:12:24
Speaker
maybe two or three months after Devin died. And it was on Oprah, which is one of my favorite podcasts. Me too. Yeah, she was meeting. Super cool, got her face. Yes, it's the best thing ever. So she had someone on there who was meeting with the family, and the family had a three-year-old and then twin boys. And one of the twin boys had died, and this mom could not recover.
00:12:50
Speaker
And what this gentleman said, and I cannot remember who it was, said to her, if you always are comparing every milestone that the surviving brother or other sibling has, they will never feel good enough. They will never feel like they compare. And they can't. There's no way to compete with someone who has passed away. And so that hit me hard and stuck with me.
00:13:19
Speaker
I've always been a very hopeful person and grateful for what I have, but I think in that moment it was exactly when I needed to hear it because it was just fresh in the grief process before, you know, and so that's really stuck with me. So every milestone my child has, even if there is
00:13:37
Speaker
there's always going to be a little bit of bitter sweetness in my heart, but we fully celebrate each thing. I fully celebrate that each child's going through and on their own journey.
00:13:52
Speaker
Yes, thank you for acknowledging that. You know, there's something you said right at the beginning that I wanted to ask you about, and it was when that doctor looked at you in the eye and said, yes, that there was that hope, and you held on to that. How was it for you holding on to that glimpse of hope that you had? How did that shift everything that you did, holding on to hope?
00:14:20
Speaker
Yeah, that was honestly one of my favorite sayings is hope is the only thing stronger than fear. It's true. I mean, if you try to live every single, you know, day with that or every situation, that one little glimmer of hope was literally all I needed when those doctors said those horrible words to us. I don't actually remember my
Reflections on Grief and Joy
00:14:44
Speaker
memory in my memory. I feel like I was on the ground.
00:14:47
Speaker
I don't think I actually was, but in my head, that's what I remember. And then when this, this little brilliant shimmer walked in and gave me that, it was literally all I needed. I was like, okay, if you can give me the littlest speck of hope, we have something here. And it gave me
00:15:04
Speaker
I really think that was such a pivotal moment for me that it gave me that glimmer of hope to really fight and not, and to do everything in our power and to go to the ends of the earth to try to save my child. And I think that that's a lot of why personally I'm okay. I'm good now because I know that I did everything in my power, you know, and
00:15:31
Speaker
to save him and also to live every day that we had to the absolute fullest. And how many days then was that? How many days after the diagnosis? So I don't believe in coincidence at all. Devin was sick from day of diagnosis till the day he passed away eight months and three weeks, which was the exact time that I carried him.
00:15:59
Speaker
So that was so ironic. You gave birth to him less than nine months. Exactly. Like literally to the day. And Devin was born on my mom's five-year anniversary. So my mom passed away when I was 30. She was just 56. She was diagnosed with breast cancer when she was 42. And so she really showed me
00:16:25
Speaker
the impact and the possibility of positive thinking and being, because she refused to let that diagnose define her. And she fought till the very end. And then Devon was born on her five-year angel-versary, and ironically or not ironically, passed away one week before that. So his birthday was October 27, and he passed away October 20.
00:16:54
Speaker
So, and I, again, I'm a huge believer in everything happens for a reason and everything is meant to be.
00:17:04
Speaker
I really, I've believed that my whole life. And when my mom passed away, I struggled with it and I couldn't, I couldn't find the reason. And first of all, now I know that you don't always see the reason, you don't always understand it, but there is a reason. But the day that Devin died, it put everything into perspective because I thought, okay, the only comfort I can take right now is knowing that my mom, the most nurturing, loving, kind, embracing woman on the planet,
00:17:34
Speaker
was there to meet my child.
00:17:54
Speaker
accident, snowboarding, you know, if not, you guys would have probably not known why he was, you know, from there on, if he had started to get sick after the ski trip, you guys would have not even known where to even start, you know, a search. You probably would have not known. It would have even caught you even more by surprise. He had not exhibited any symptoms at all before that, at least that you were aware of. Yeah, no, not at all. I mean, he was
00:18:24
Speaker
the youngest of four. So he was the most outgoing, goofy, athletic. I mean, he was, my kids are all athletic. He was by far the most athletic and he was six years old. I mean, he had been playing lacrosse and soccer since he could walk with his older brothers. And so in hindsight now, when I look back, you know, you have those live pictures a couple of weeks before, maybe like, if I look at a lot, he like stumbled in a picture a little bit, but
00:18:51
Speaker
nothing that I would have thought, huh, something looks off like, because he just was like, always moving and goofy. And, and so there was not not a thing at all. And, you know, I'm actually hugely grateful to because grateful that that happened, because you're exactly right. It gave us time that he was not extremely sick, that we could do things and make memories and
00:19:20
Speaker
Whereas if it had taken a lot longer, we would have had a shorter window.
00:19:26
Speaker
and probably wouldn't have found out until he was more sick and maybe wouldn't have been able to do radiation or, you know, but we also found out on a Friday night and I didn't take him to the doctors on Monday. And we just went with the assumption that he had a concussion. So we went to like one other child's game, but otherwise like we just kind of laid low and had the weekend just to kind of snuggle and watch movies and kind of all be together before that diagnosis on that Tuesday night.
00:19:56
Speaker
Wow. Yeah, no, that is just so much that can change in just the blink of an eye, right? It just gives you a different perspective of even just how you live your life. And so how has that shifted who Christine is now, how you live your life now? And also,
Family’s Grief Journey and Community Support
00:20:13
Speaker
you had, of course, had gone through the loss of your mom.
00:20:18
Speaker
You had experienced grief in one way, then five years later, that's when Devon was born. So 11 years after your mom's passing is when Devon passed. How do you think that having experienced grief of your mom also prepared you in some way to then now one of the hardest experiences?
00:20:45
Speaker
it's crazy because you go through kind of a cycle I think of like when I lost my mom she was my person I talked to her every day I was devastated and and then when I lost my child he would he I always sent was sent from my mom he would he was attached to me he was
00:21:04
Speaker
He was also the baby, so he and I had a very different bond, and he was always asleep in my arms because we were always on the go, so napping was in my arms. But losing your child is unexplainable. As a mom, especially, too, I think you give birth to this little person,
00:21:33
Speaker
the intent is to watch them grow and watch them sort of, you know, live and thrive and grow up. And, um, and then you kind of go through, so then you're, you're kind of, I think in a place where you're like, there's nothing, there's nothing that can compare to losing a child. But then, you know, everyone's loss is different and everyone goes through different things. So, you know, I hope that most people on this planet don't have to lose a child. So,
00:22:00
Speaker
whatever their loss is, is the hardest for them. For me, it was my child, but for someone else, maybe they're fortunate enough that their dog is their biggest loss, but to them,
00:22:12
Speaker
That is, that's a huge loss. So, you know, people will come up to me and say, you know, I feel like I can't, I can't say anything to you cause you lost your child. I'm like, no, no, it's all relative. So it's still pain. It's still pain. Yeah. And it's the closest thing to you, you know? Um, so yeah, I mean, I don't think you can ever really prepare. I just think things are put into perspective and, and I think you, you realize that, you know,
00:22:45
Speaker
find the silver linings or you know there's there's always beauty in the brokenness and so even though that was you know when I remember a New Year's Eve when it was turning 2018 and having the feeling that okay I should be relieved that this year is ending because it was the worst year ever and then I step back and I was like you know I had the worst heartbreak in 2017
00:23:04
Speaker
One of the other things I try to say is...
00:23:11
Speaker
But it was filled with so much love, so many memories, so much support, so much, so many good things. So it kind of superseded the the horribleness that happened then. And so I think, you know, at the end of every day, there is so much to be grateful for, even if it's those little tiny specks of hope.
00:23:35
Speaker
Yes, yes, and the little moments of joy that you can feel amidst the pain. Now, what kind of things did you do as a family to support the other children's process of grief as well as yours? What have you been doing in that process for grieving?
00:23:54
Speaker
So it's such a tough question. Because while Devon was sick, it was such a fast and furious disease. And the main focus was keeping everyone together. So and we had to travel to London for treatments. We were, you know, all over the place. So
00:24:13
Speaker
Devin went into the hospital in September and passed away in October. During that time, we had had a family life coach come and meet with us a couple of times. And then I had a therapist that, an external therapist, actually go into the boys' school to make sure they had someone to talk to. And their schools were actually really great about having their guidance counselor have lunch with them and meet with them. And they could bring a friend.
00:24:43
Speaker
Devon passed away and we've had, there has been a couple of people they have talked to, but our fight was so public and my kids talked all the time about it that I think when it came time to have to sit down one on one and continue to talk about it, they just were like, we don't want to. And two months after Devon passed away, I was separated. So then my kids went through the divorce of their parents too.
00:25:13
Speaker
And, you know, that's for a lot of other reasons. But so they actually didn't have the conventional therapy. And I talked to their pediatricians and everything else and they were like, you know what, therapy can come in the form of
00:25:30
Speaker
playing soccer with their teammates or you know and we talk about Devin still every day he's part of he's part of our every day still so his spirits very much alive and you know through why not Devin and
00:25:45
Speaker
So many people in our community and even throughout the country, we drive places and we see green light bulbs and we're reminded of Devon. And so I think, you know, could they benefit from, you know, traditional therapy? Sure, probably. But it wasn't, it hasn't been something that I've pushed with them because they've been really headstrong about it. They do go to, they do go to this amazing camp every summer through,
00:26:15
Speaker
Jeff's Place, and it's a camp for boys in Maine. It's everything Maine camp should be with 150 boys who have had immediate loss. So there is some counseling there, but it's mostly them feeling normal, doing normal things in a setting with other kids who get it. And the bonds that you see with these kids is, it's pretty incredible.
00:26:43
Speaker
So that's for my kids. For me, I have, you know, why not Devin? And to be able to help other families through that process is such a huge healing part of me. And then I also, you know, I blog and I speak and I think that that's, I have the mindset always, if I can help one person know that they can overcome by sharing my own story, that's everything.
00:27:13
Speaker
Everything you shared is so important because, like you said, it doesn't have to be one way in terms of what grief tool somebody uses. In your family's story, you had already been grieving since the diagnosis, but you also had all this incredible support and so forth around you. And like you
Foundation's Mission and Challenges
00:27:37
Speaker
said, the children had a space in which they could talk about their brother openly and those feelings.
00:27:43
Speaker
That's wonderful. And I love this Jeff's Place camp because it's like the fact of being already around other people that have had a loss, that if by chance you're not feeling too great, it's like you don't feel like this odd man. People understand around you that
00:28:02
Speaker
Yeah, maybe you're just not having a good, you know, that moment, you know, and you don't have to go into details of explaining. And even if you did explain, they don't look at you like the weird person which might happen at school when other kids around you don't understand what you're going through because they haven't been through it themselves. So that's wonderful that they have that.
00:28:24
Speaker
they have this um like bonfire a couple nights a week they're not they it's their bond they're not supposed to like talk about it but i do know that it gives them an opportunity to share their story and to be emotional if they if that's what happens and they're embraced by all these other boys who get it 100 and not just them feeling
00:28:47
Speaker
which people are feeling bad for them. It's a place where they share this. And so it's so impactful. And for them, that's been the greatest resource, I think.
00:28:57
Speaker
That's wonderful. Now tell us more about Why Not Devon? And the kind of ripple effect that it's had and all the different, yeah, things that it's been able to do, the foundation, the, yeah, tell us, tell us more. So while Devon's fight was going on, as we talked about before, hashtag Why Not Devon started, and it just became like this,
00:29:24
Speaker
and I feel funny saying the word movement, but it really was this. And, you know, DIPG had such little awareness. Actually, when Devin passed away, his whole neuro team said that we had helped advance awareness for DIPG 10 years because of the amount of awareness that it created. And there were, you know, so many people that were part of it that,
00:29:54
Speaker
either when Devin was fighting or immediately following, I had people reach out to me who knew of someone or they themselves who had followed the story had a child diagnosed with DIPG. And I had one woman who I knew from a friend who was in this part of this group, she had followed Devin's whole journey, which, you know, was
00:30:16
Speaker
all emotions enrolled into one, right? And her daughter was diagnosed just like a few weeks after Devon had passed away. And she reached out to me with this heartfelt, you know, she was obviously blown away that her child, she had watched this journey of this disease she had never heard of, and then her child had it, but she thanked me for sharing it because she wasn't so blindsided when her child was diagnosed. And, um,
00:30:44
Speaker
So now we were, like I've mentioned, so fortunate to have so much support, so much kindness, so much everything when Devon was fighting. I wanted to do something in his honor and to continue his memory and
00:30:59
Speaker
be able to make an impact and continue his fight. And there was a couple of organizations that fund research only. There's no funding for DIPG. All research and trials are mostly personally funded and either through families or these organizations that are run and founded by people who had a child who had DIPG. And I had met them through our journey. And the one thing that was missing was the support for families.
00:31:30
Speaker
And most people don't live in such an incredible community that just completely embraces them and does all these things.
00:31:43
Speaker
Insurance covers radiation only, not your trials or travel or anything else. And, you know, we spent hundreds of thousands of dollars trying to save Devon's life in eight months and three weeks. So in September, we got our 501c3 status, which had been a two year process of
00:32:02
Speaker
a lot of sweat and tears. And so now we give a $10,000 grant to a family a quarter with a child with DIPG. And the hope is that they will use it for travel, treatment, logistics, anything they need to keep their family together and for the child with DIPG. But at the end of the day, if the family needs to use it to put food on their table and lights in their home, they can use it at their disposal.
00:32:33
Speaker
So that is so, so, you know, I'm so surprised that there's not more out there to, to help that you guys are one of the really first, you know, aside from some private other, you know, private organizations that I'm very surprised. Yeah. It's, um, it's horrible. You know, uh, Neil Armstrong's daughter died two years from DIPG before he walked down the moon and still now in 2021.
00:33:03
Speaker
there are still no survivors. So, you know, it's a very, if you, unfortunately, you know, were to look, there's statistics and graphs and whatever, it's literally the worst pediatric cancer there is. And so you would think, and it's rare, but there's three to 400 kids a year that are diagnosed with this disease. And so,
00:33:28
Speaker
You know, it's a really, and so I host, and I kind of got this idea from the boys' camp, but I was like, how can I make an impact on moms who have lost a child to DIPG? So this year, obviously with COVID, it had to be postponed, but the two years prior, I hosted a DIPG mom retreat here at my home. And last year there was 15 moms, the year before there was 10.
00:33:58
Speaker
had only known or met two or three of them. They've come from all over the country. Last year I had a woman from Ireland who basically feels like she's on an island there in the DIPG world because she doesn't know anybody else who had it. And so they come here and it's a weekend of healing. And so this past year, actually we were lucky enough, I hosted Mitch Albom who wrote a book called Finding Chica.
00:34:26
Speaker
about a little girl he adopted from his orphanage in Haiti who had DIPG. And it's his story. And so he, I hosted him in Boston for this wonderful night and I got to have all these moms come. And then Saturday, I've been lucky enough to meet and all these amazing healers, Reiki and cards and masseuses and masseuses.
00:34:50
Speaker
I'm not sure how you say that, but massage therapists or whatever. And so they come to my house and they set up in all the rooms in my house and they give these women some positive energy and some healing. And then we have dinner and wine and art therapy.
00:35:12
Speaker
Then last year we all watched Bad Moms in our pajamas and had some wine and laughed hysterically. And it's a way for us to be together. And we may come from all different places on the earth, but we've all had a child with the same journey. And so to be together is really impactful. And within that, I saw different people who didn't have the means
00:35:41
Speaker
to fight for their child and just kind of said, okay, this is the course this is supposed to take and let that happen. And if
New Ventures and Positive Inspiration
00:35:51
Speaker
that's your choice and that's your belief based on your faith or your religion or whatever, then that is your choice and that is okay. But every parent should have the opportunity to fight if they want to for their child.
00:36:06
Speaker
So that's really that is so powerful because you know what that gives to is that parent that feeling after everything, you know, even if it's a terminal illness, the the fact that they did everything that they could. Yeah.
00:36:23
Speaker
Right? So even if you know that it's terminal, doing everything in your power to fight for your child gives you that feeling afterwards that you did everything you could. At least that was your story. That was your case, right? You felt at ease afterwards in your process of grief because you had done everything in your power. Yeah, everything. So I had no regrets because there was, I mean, that doesn't mean that you don't have that
00:36:51
Speaker
mom guilt because you have that when your kid scrapes their knee, right? We have it even when we're pregnant. Yeah. Or even when we're pregnant. Oh, I drank coffee by chance. I remember my first pregnancy, I didn't even drink coffee. That kind of stuff. Oh, I drank coffee. Maybe that created my child to be very energetic then or whatever. Right. The same. I feel like I have no regrets.
00:37:21
Speaker
and wishing that I did something different or something else. So, yeah. That's just beautiful. Now, do you want to talk a little bit about all the other different projects that are in the works? And I think by the time we released this episode, some of the things would have already come, be birthed. Yeah, I'm so excited.
00:37:49
Speaker
I've mentioned a few times, like I believe everything happens for a reason and everything is meant to be, and I have a company called Meant to Be Me. And I mentioned before too, I blog on there and I just kind of, I'm a very raw, unpolished writer, but I write exactly how I feel. And so I just try to, you know, write different, about different topics that, you know, you,
00:38:17
Speaker
may think about or you, and it's just my perspective. And then I speak and I speak a lot about hope and I speak about gratitude. And so, um, and then I have inspiration, inspirational merchandise on there. Um, so I have t-shirts, um, that you and I have talked about a little bit cause you do a similar thing. Um, kind of with sayings that really impact me, like trust your journey, you know, humankind, just things like that, that are.
00:38:44
Speaker
have been important to me and mean something and maybe someone will wear them and feel the same way. I am super excited to launch my, I have two new projects coming up. One is a journal club. So when my mom was here and I was in my 20s, I love New York City, she lived in Maine, and we would write, we would send a journal, handwritten journal back and forth to each other. I talked to her every day, but we talked about
00:39:11
Speaker
the big things that happened during your day. So our journal was for all the little silly things and we'd put stickers and we'd, and today it's the, one of my most treasured gifts from her. And I actually got a tattoo with her handwriting from that book. And, um, she had a journal in there on 10 27, which was the day she died, you know, years before and the day Devin was born. Um, so,
00:39:40
Speaker
We did that and then throughout, so I've journaled, you know, kind of always, but very different journaling. So when she died, then I kept a journal and wrote to her. And then when Devin was sick, I kept a journal of our process. And then after that, I kept a journal for signs different. I'm a huge believer in signs. So signs from Devin and my mom. And, um, and now probably the last,
00:40:06
Speaker
18 months, two years. I have a journal next to my bed and I, it's my gratitude journal. And at the end of the day, and it's not every day, but it's definitely a few days a week. I should be better and do it more, but I write down something small that I'm grateful for. All those small things are so much more attainable and impactful than the one huge thing that happened. Those are important too. And those are amazing, but they're fewer and further between, right? So I've been able to talk with.
00:40:35
Speaker
you know, people who are going through something, some small things, some people are going through huge things and have just said, this is what I do. And this has been, you know, impactful for me. And they've done the same thing and have come back and told me how much it's meant to them. So, um, so I'm starting that. And then, um, with that, you can order these intention boxes. So you can use your own journal, you can use your own, you know, whatever.
00:41:01
Speaker
And if you wanted to, you could purchase this intention box that has this beautiful journal and these intention candles that I just designed and a couple of other really cool things. So a way that you can either purchase a gift yourself or to your best friend or your mom or your daughter who's away at college or whatever you would like.
00:41:25
Speaker
So that's one thing I'm really excited about. And the other thing that I'm super excited about my very best friend since the seventh grade and I are soul sisters were 12 days apart. She's the blonde version of me. And I know your listeners can't see me, but I am. I'm a brunette. And we've both been through.
00:41:44
Speaker
more than you could possibly imagine most people would go through in several lifetimes but she and I always find the laughter and the humor and the gratitude and the you know the positive and we always say our glass is half full of lemons so it's you know you it's what you make of it and so um
00:42:07
Speaker
We get together often for lunch and we just, we talk nonstop. You would think we would have things to run out of talking about. Talking's in seventh grade, but that's not the case. That actually makes it even easier. Yeah, and so our podcast is basically us at lunch and we have our favorite cocktail and nothing's off the table. We talk about
00:42:33
Speaker
absolutely everything. It's called She Nanigans with Jen and Christine. And eventually we'll have some guests on there that kind of roll the same way we do, have been through some pretty horrific things, but at the end of the day, like can laugh and are okay and, you know, might be self deprecating. And so I'm just so excited to do this project with her. She's, she's my, my person always. And we're both just to share
00:43:03
Speaker
with people that, you know, you can get through everything and you can find the laughter.
00:43:10
Speaker
So my cheeks
Symbolism of Bees and Personal Growth
00:43:11
Speaker
are hurting from smiling. When I chatted with you over the phone when we were kind of deciding when we were going to meet and stuff, I could just feel this energy, this amazing energy. They really are hurting right now from smiling. There's just this joy that I just feel from your energy that I don't know how else to explain other than the fact that my cheeks are hurting.
00:43:40
Speaker
You know, it is not like I'm like laugh and just like smiling, but they're hurting. It's like a muscle that I'm using all those like 40 something minutes and it's because it is that it's like you do see and feel that joy even amidst every hardship that you've been through and I'm so
00:43:59
Speaker
Excited for people to be able to then get to hear then they can read you on your blog and all these To find out more about the podcast whenever you ladies release it Will it be on the meant to be by the way be as BEE? Yes, and and then can you share the reason of the BEE? Yes so
00:44:20
Speaker
Again, I don't believe in coincidence. Everything kind of rolls into each other, right? And so I've always said everything's meant to be and happens for a reason. And Devin was my only child to ever get stung by a bee. And he was stung a lot in his mouth, stung by one bee several times, which isn't supposed to be able to happen. Like just many times. My other three never stung once. And so when Devin passed away, his funeral was at the end of October.
00:44:49
Speaker
And in Massachusetts at the end of October, bees aren't really around. Bees were everywhere, everywhere. And on the way to the funeral, several of his friends and our family got stung by bees.
00:45:05
Speaker
And then at the party afterwards, and when I say party, it doesn't sound... It's a celebration. But it really was such a celebration. There were so many kids, there was music, and everyone just... It was his party, and it was incredible. But for the two weeks after his funeral, everyone that was close to him and us was stung by bees.
00:45:31
Speaker
It was insane. And so a few weeks later, I had one of the women who does Reiki for me. She's a very good friend. She's been a huge part of my healing process. And two of my other good friends over. And we were drinking wine. And she was doing Reiki on my feet. And she said, I brought over some of these cards in a box. They're healing cards. She's like, I haven't used them since I used them with you and Devon in August. They've been put away. She has several decks, whatever. And they were in a box.
00:45:59
Speaker
And so I had been talking about like, God, everyone has had these signs from bees and everyone's been stung or seen a bee in a certain special place and I haven't. And so she opens this box and she goes to flip the deck into my hand. And when she did that, a piece of fuzz fell onto my pants. And so I looked down, I went to brush it away and she went to brush it away. And all of a sudden we both stopped and looked and she picked it up and it was this perfect dead bee.
00:46:30
Speaker
wings expanded, fluffy, beautiful. The four of us were speechless. We couldn't say a word. I was so glad they were there to witness it to my friends. It was, she hadn't opened this box. And so I was like, okay. And honestly bees have showed up in the most monumental milestone, amazing moments. And I truly believe that it is Devin. And so
00:46:57
Speaker
They kind of just was an organic, natural thing, this meant to be. And I have a bee, my first tattoo, I got this cute little bee on my arm, and under it is the 1027 that my mom wrote. And so he's just always around, and it's just a great reminder. My kids love it, and I think a lot of people who know his story and him are reminded of him with the bee often.
00:47:27
Speaker
And it's meant to be me, right? Yeah. Website or meant to be me. And then why not Devin.org? So that actually is launching next week. I am so not tech savvy at all. And I've been building this website that has been daunting.
00:47:45
Speaker
But by the time this episode is launched, the website will be up. And you can go to whynotdevan.org and you can check out the merchandise, the journal club, as well as the intention boxes and your blog.
Conclusion and Gratitude
00:48:07
Speaker
And also, if you want Christine to speak at any of your events, you're also a speaker.
00:48:15
Speaker
all that information you can find and how to get a hold of you. And I'm just so, so grateful for you to have come on and taken the time to come and share your story, Devon's story, and your family's story here with us. And I am absolutely sure that you're inspiring so many of the listeners, just like you have inspired so many people in the last few years with your journey. So thank you.
00:48:39
Speaker
Thank you so much. I'm so grateful. I love being able to talk about Devin and share his story. And, you know, I think that he continues to make such an impact on so many people of all ages. And for me, it's, you know, just the most soul fulfilling thing. And I think, you know, for my other boys as well.
00:49:05
Speaker
Thank you for letting me talk about all four of them and for sharing some of the exciting things that I'm doing. And I'm excited. Thank you. Thank you. Thank you.
00:49:21
Speaker
Thank you again so much for choosing to listen today. I hope that you can take away a few nuggets from today's episode that can bring you comfort in your times of grief. If so, it would mean so much to me if you would rate and comment on this episode. And if you feel inspired in some way to share it with someone who may need to hear this, please do so.
00:49:50
Speaker
Also, if you or someone you know has a story of grief and gratitude that should be shared so that others can be inspired as well, please reach out to me. And thanks once again for tuning into Grief Gratitude and the Gray in Between podcast. Have a beautiful day.