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In the Room: Processing Anticipatory Grief and Reframing Hopes and Expectations

Jun 07, 2021
Okay, it's already a minute past the hour, so since we have some, we have a very important topic to discuss and so that there are wonderful, articulate people to talk to about it, I want to leave as much time as possible for the conversation, so let's get started right now welcome my name is blythe lord i am the founder and ceo of brave parenting network cpn it is truly an amazing team of staff who go way beyond me some of whom are on this zoom with us tonight and it is the power of the network, which is the parents and especially the pediatric providers who care for these families of seriously ill children.
in the room processing anticipatory grief and reframing hopes and expectations
When I think about how far cpn has come in recent years, I am impressed and it is entirely because of the people who are online who tell us what they want to hear what matters to them what they have learned what matters to them what they are looking for for you whether you are a parent or grandparent or an aunt uncle or a doctor or a nurse or a social worker or a chaplain or a child life specialist or just a support you are what makes us who we are so thank you for Come and welcome to our live event on Group Grief Anticipatory Processing and Reframing Hopes and Expectations Anticipatory Grief has been from the beginning of the Courageous Parents Network one of the most important and resonant topics we have addressed.
in the room processing anticipatory grief and reframing hopes and expectations

More Interesting Facts About,

in the room processing anticipatory grief and reframing hopes and expectations...

Parents have actually told us over and over again what an aha moment they've had when they've been given a name for what they're feeling and experiencing, and if you've been to the Courageous Parents Network you'll see that we have a whole topic area on

grief

. anticipated, but we added a

reframing

because this is a topic that I will listen to tonight. This is a notion that actually applies. It is what can happen after or along with

grief

and it is recognition. It is the constructive and hopeful piece that can accompany grief so that we are not simply sitting in the space of grief.
in the room processing anticipatory grief and reframing hopes and expectations
They will join me tonight. There are four amazing people who I'll introduce you to in a second. I just want to let you know that we are recording this session. If you don't want your face represented, simply turn off the camera. We hope you show your face. um, but we understand that if you'd rather not mute yourself so that you don't hear any background noise and you don't feel inhibited by the dogs or the kids making noise. um, please we will put any questions or comments in the chat that we will receive. to the chat either after the conversation or as we go well, the moderators and jennifer and I will call it as we see it and leave time for the chats, that is, for questions and answers, um, so don't worry about that, um it's going to be tough though because these guys have a lot to say so we're gonna come together tonight.
in the room processing anticipatory grief and reframing hopes and expectations
We have Rachel Roush, who is a clinical social worker and on the pediatric palliative care team at Children's Hospital Los Angeles. Rachel has many other important and impressive things. that goes along with her degree and her professional experience, but you can go read that on the website um it's also laura will mom laura will laura is hadley's mom um three years old and alden a year and a half alden has polly micro gyria um laura She is a prominent family in cpn and also a poet and she. I encourage you to read her poetry at a dragon a dragon dragonmom'swords.com, is it dot com? laura, okay, beautiful poetry, some of which we featured on cpm, so bo, who's first? and most importantly, tess's father tess is now 11 years old. um beau and his wife started the foundation um he called the sources no tess has howling fountain syndrome and they started the usp7 foundation in an effort to find research and treatments and beau has a very good backstory um in terms of finding his daughter's diagnosis tessa beau is also the co-founder of the rare disease film festival the disorder the rare disease film festival, which is something extraordinary and if you have um roku you can also go to the rare disease festival the festival channel cinema and watch amazing videos really amazing stuff so welcome beau and finally michelle who is a mother of two her youngest son is gavin gavin he is now 18 years old and has dravet syndrome.
Michelle also has a background in oncology and palliative care nursing, so we have different ages represented in our three parents, ages 11 and a half and 18. These three parents have been at this for different periods of time, but they are all wise in the way parents are um and it's just them it's a blessing that I've chosen to be here with us tonight so thank you and without further ado one more thing I want to point out that as with everything cpn does we recognize that every family is different and every family has its own unique ecosystem in an ecosystem of the community where they live and the culture and racial background to which they belong.
We always look for diversity. I recognize that if you just looked at this panel, we wouldn't look very diverse, but there are many ways to represent. diversity and I think you'll see that here tonight um but you should know that this is something we're always concerned about so without further ado I'll pass the baton to Rachel thank you Rachel she'll frame it for us tonight thank you. So much Blake, it was such a beautiful introduction, um, uh, and I almost have so little to ask for, it was so beautiful and perfect, and thank you for the opportunity to get us all together today, um, I have to say I love that this is called So. the

room

, even in this digital format, speaking with beau, laura and michelle a couple of weeks ago in a similar format was to really feel like you were in the

room

with them and to feel like I was really benefiting from their wisdom. and your generosity and your love, so I appreciate the space in which we are gathered today.
We're just going to put up two quick slides and Jennifer is going to help us just connect and what. We're talking about being together today, if you came a little early, you saw those beautiful slides, um, that were coming out of an introductory deck, but these will help us concise ourselves a little more, thank you Jennifer for uploading them. So what do we mean when we talk about

anticipatory

grief? These three themes came out of a conversation with Laura, Bo and Michelle together a couple of weeks ago and we really felt like we synthesized the experience they were sharing, so we can really think about

anticipatory

grief. grief as the experience of grief in the present of the occurrence of an event or outcome that may or may not happen in the future and I think may or may not be something really compelling for us to keep in our minds and in our hearts as we talk together today and it is a grief experience along a continuum, so from diagnosis throughout the life of a person and their family, anticipatory grief can come and go in very different ways, and I think it was Michelle who said something about the morning of future events in the present moment um those events could be dreamed or expected experiences that may or may not happen in a different way or events that one might worry or have concern may or may not happen in the future as well and experience those future events in the present moment are what we think about when we think about anticipatory grief next slide please jennifer thank you very much uh we hope to spend most of our time talking about this concept of

reframing

and what we do It's necessary when we talk about again Well, these are topics that arose from talking together.
We can think of reframing as changing or reconsidering an experience from a new or different perspective so as not to deny an anticipated grief experience, not to not allow it to happen. being present with us, but how to engage with it in a new or different way that can then lead to the second point of a process of coping or moving through that experience of time, as Blyson beautifully said, can look different for each individual. There is a shared experience between these three panelists that I think will be exquisite to share and each has their own individual experiences as well, so again I am very grateful that we have these three extraordinary fathers join us today.
Um, and I think that's really good for our slides. We can close it now because I'm very eager for us to benefit from the wisdom and generosity of our panelists today. Um, to frame our topic, we'll talk a little. about anticipatory grief and we'll talk about reframing and we'll even talk about when reframing is helpful, less helpful and sort of how it interacts with our panelists' lives today, so Laura, we'll start with you when we think about anticipatory grief. Some questions I think about and would love to hear your thoughts on are things like how anticipatory grief came into your life at the time of Alden's diagnosis.
What was your initial understanding? Did you know that term was a term you knew? So since I know that you have an extraordinary background or it was something that has come to your consciousness over time, um and how it is, how it has evolved as you've moved forward, uh, this time, without whatever it is that inspires you, I would . Love, we'd love to hear from you first. Thank you very much, Rachel. The anticipated pain really came into my life like a tsunami. Probably from the moment of diagnosis. I didn't know what it was when it first happened.
It was racing thoughts and sort of endless, deepening worries about insomnia and, um, in my body it was nausea and, in fact, Pat O'malley from the palliative care team at MGH first mentioned it to me. when I met with her and said, "You know, I think you're talking about anticipatory grief." and it's nice to have a label, although I didn't really know what to do with it yet. So Alden was four months old when we received this diagnosis about a year ago. And over the last year, what anticipated pain or how it presents itself in our life has changed quite a bit initially, it was every minute, every hour of every day, now it's much more contained, um and it kind of rears its ugly head at times, expected moments, sometimes unexpected, the most recent at a wedding, a close friend, I saw the groom dance. with the boyfriend's mother and I had this incredible wave of sadness and I had to walk away from the room and have a good cry and you know, I think it's a good representation of what anticipatory grief can do.
Mourning the loss of that moment with my son I won't see him get married I won't dance with him at his wedding um and so he stole that present moment from me at that wedding with my friends um but you know what I? I have learned that it is less frequent in my life now and when it is there I need to simply respect it and get over it and when it goes away return to the present with strength and greater appreciation. I really appreciate you sharing all of that and um uh I actually read a piece of your poetry about this concept of waves of pain that was recently posted on the Creative Spirits Network Instagram um and I bring it to mine as well and I appreciate how you're holding the quality. unexpected of anticipatory grief the kind of present moment interrupted um and and your your language around I was robbed of that present moment um in addition to the other experience that you're going through I also think it's really um I just don't have words, I really appreciate it, um, and I think when we move on to the reframing piece, we're really interested in hearing what it sounds like, like you've been being aware of what it's about you and how to overcome that, um, so.
I think with that, if it's okay with you, we'll switch to Beau as well and listen to Beau for you, both from what Laura says and from our introduction of anticipatory grief, how does this experience for you interact with your life with Tess um both in the present moment as in the last few years together yes, thank you Rachel, I am very grateful to be involved in this discussion because until now I didn't have a name for this thing that was It's taking up a lot of space in my life and I just didn't know it.
I didn't know what it was until almost this invitation, so I'm very happy to talk about it and understand more about it. I have a lot to do. learn about it, I just didn't know what it was, I feel since the diagnosis which was in 2015 and I feel like I used to be a really carefree person and I feel like there is a real gravity to everything in our lives. There are days when I feel like everything is very serious and I've talked to Jennifer about this before you know people ask you how you are and you get the answer from the supermarket, which is the quick answer, like, yeah, everyone's fine, like, Yeah, school is really busy, you know? you do that, but then to the people who are really in your tribe, like the friends and family closest to you, you give the real answer and it's not for everyone, but you know it's only for those people who are close and me.
I guess I feel like I need help with this, sure, there are times when I feel broken in a way that can't really be undone and I just struggle with it a lot and I'm still trying to like it. the mindfulness part that Laura talked about. I'm really just starting that part, so I definitely need help. I appreciate that you're curious about the invitation to this um panel and our discussion on anticipatory grief, um, and there comes the language that sounds like becoming aware in a different way, have you found yourself thinking about that in the last few weeks? or how it has been a kind of new introduction to this concept, how it is beingmoving in your mind?
Now yeah, I think it's all about, you know what we were saying, that in the present moment you know that you want to be there and you want to be present, but you're already thinking about it in a totally different way than literally everyone else in the world. the room, you guys say this is something different for me and I couldn't even explain why to the rest of you, but this is where I am and yes, since I spoke a few weeks ago I've been thinking about this all the time, all the time Yes, I know I'm not alone.
I feel very grateful that you are with us today as well. With that Michelle, we will convert. For you, what has this concept of anticipatory grief been like in your life? With Kevin and your family, so Gavin is actually 20 years old and my youngest son, who has autism, just turned 19 and we didn't get a proper diagnosis. It started to feel good. I started ordering tests when he was pretty new and had so many problems with his heart that he had pulmonary hypertension. It was an emergency c-section and I realized that I separated from him at that moment, even before he was born and had It was very difficult to separate him from a diagnosis and it sounds very bad, but I really did.
He was the nurse, right? and he was almost my patient. And I had a very bad time. He had difficulties with breastfeeding. time with everything and no one had answers and they kept saying oh he's fine this is normal baby stuff and I knew this wasn't or I thought I knew I questioned everything I knew about medicine um and I trusted the doctors at the time um we actually, um, he had his first seizure that they recognized when he was nine months old and that seizure lasted an hour and a half, so at least we knew that he had seizures and, um, after a short time of testing and trying. to realize that they just called it idiopathic which as a nurse and controlling type a person doesn't get along very well with me because I'm fine that's just a symptom not a real diagnosis so we ended up traveling all over the United States trying to get an accurate diagnosis and he was actually eight years old when we got the correct diagnosis and at that time he had been exposed to the medications that were indicated and he had many setbacks and all this time I am joining him, but I am also his nurse and, um, so because of my experience as an oncology nurse, the anticipatory grief was really just them, he, he's going to die, how can I get him there or does he have a limited lifespan? length of life, how can we make that quality of life good?
And as he got older and I got a little closer to him, he changed from anticipatory grief to more serial grief, every little milestone, every little comparison, every seizure, every hospitalization, just brought it all together in an overwhelming way and for me I was very frustrated because I am an oncology nurse, I teach classes on grief and I think I have this unlocked but I didn't, this was my son and a defining moment in which everything I will never forget that Gavin was eight and we were in our first preliminary conference and I had the opportunity to present my son's case and we did not have a definitive diagnosis, but finally we had the mutation and the suspicions and I was actually able to present Gavin's case to dr. drebe and then she asked and I was introducing him as if he was on the tumor board, this person, he has aged like this and this is what his and dr's seizures look like.
Jave looked at me and said something about his son and it stopped me because I could barely continue with the presentation because that barrier was broken and I started a completely different form of grieving. She confirmed that this was not a diagnosis she wanted to receive. She was waiting for a diagnosis. with a pill that we could take that would fix it and that's not what we have we have something pretty catastrophic um and um I wrote a lot of notes so you'll have to forgive me um so this turned into this anticipated serial pain um and I also realized realize that the pain was not just for my son but also for me, just as Laura indicated that there will be no wedding, um, we didn't do it at the time of diagnosis, we didn't even think he would reach anywhere near the age he is now and no a lot was known about it and it was this dark and scary journey.
I now recognize pain as part of my journey and have learned to let it live within me and beside me on this journey I was so afraid of. and then when I looked at it, I would spiral uncontrollably, um, down many rabbit holes, you know, that again robbed me of the ability to be present and sometimes the pain still hits me like the one Laura alluded to, You know, I saw it briefly and momentarily. I saw an old pre-K classmate of Gavin's driving. My son will never drive, but he doesn't want to drive either and in this we can get into the reframing and we can get to the point that he is very happy to ride a bike. really happy that his brother knows how to drive, he never asked him to drive, so that's for the next section, but um, and the pain of watching him lose skills or never reach milestones even at 20 years old is that it's been very, very difficult, um, but I.
I finally realized that he is all these stages of gavin, he is the gavin who used to be able to run, jump, play and sing songs and who ate a lot of food and he is the gavin who last year failed to thrive in a hospital, um, who has a G-tube, lost 20 pounds and stopped talking again. Gavin is all of these things and that's how he sees himself and I need to remember that that's all he is and, um, the last thing I'm going to do. I mean, I think she's here, but I have a very good friend's daughter who also has stravae and I remember writing to her not long ago and telling her that this Dravet trip is like many of the sweetest greetings and it's the longest goodbye . because we know that I have changed my way of thinking and now I believe that there are a lot of sweet greetings and it is finding love and joy in the bittersweet moments that arise along the journey because I don't want to spend all my time with my son crying and thinking about her death I just don't want to do that I'm so sorry 20 years and tears are watching michelle this is so awesome and um and I can see bo and laura By nodding for a long time, I can see the people in the chat saying yes, yeah, yeah, yeah, this and I think you're setting the stage really beautifully for this conversation about reframing.
I can hear it in everything you say too about looking at both so exquisitely. for the pain for yourself and for gavin and also this concept of the sweetest greetings and the longest goodbyes. I just feel like there's no better way to think about anticipatory grief and this concept of reframing, so if it's okay with you, I'm going to take advantage of your brilliance to shift our conversation to this meaty part of our topic which is about reframing and um and I feel like you three have talked about reframing. with all kinds of different language, like looking at a difficult situation in a new way or finding the beauty within a difficult situation, your words will be better than mine, so if it's okay with you, we'll start somewhere. in the same way and then let's start our conversation together um laura, you all started to hint a little bit about this with your experience of anticipatory grief so far in alden's life, so I'm curious to know how the concept of reframing affects you in your lives. um and and how do you think about it uh in our topic together today absolutely um well before I became a Walden mom I studied reframing a little bit of cognitive preassessment um in mindfulness um training that I took as a nurse practitioner but I must Let's say one time I had to Putting it into practice as Alden's mom, everything fell apart and I needed to have a lot of support to get these skills back or really be able to apply them to this.
I felt what still feels like pretty extreme scenarios, so, I mean, I think at the root of the reframing we thought about how our thoughts and our words are so powerful and like you said Michelle, you know no, you know we use this. The term is a very long goodbye and then I can't think about it that way, I can't use those words anymore and, um, and so, for us and our family, um, actually, my husband came up with the idea. , perhaps through a job. from a perspective pie and then you know one thing that is very clear with Alden is that he is physically disabled and so he you know we can when we think about what he's doing physically, we can say you know he can't he can.
I can't walk and he also has very good head control, so when I think about him physically and what he's capable of doing, I can choose to think of either of those perspectives, they're both true and therefore is it? how much time do I have? he's going to devote himself to the things that they can't do first, he can do, I mean the other thing that people are still familiar with, let's look at the door that's closed or start looking for doors that have been opened, um and everything is kind. of the same idea um you know, I love how you said gavin is, these are all stages of gavin and the way we've rephrased it for alden is um instead of using the term milestones we use the term alden stones um initially I tried to embrace the idea of ​​inch stones, but I didn't really like it.
Inch stones can be directly correlated to less than miles and I thought they were not less than and it took me a long time to believe and really feel in my heart that they are not less than and I think that feeling largely comes from the change in shape where I actively worked to rethink it, to choose a different perspective, and you know, the power of that is incredible and it can and has paid off not only in my relationship with alden but in my entire life, you know, and I think through From this process, I have learned to trust myself a little more, to trust in my own resilience, as if I were someone else, you know, Alden has his own. first seizures and we have to go through that and that was something that I was anticipating and terrified and then we hit it and like it didn't kill any of us so I guess I'm choosing to start I trust that resilience in myself and that's why the uncertainty of it all is a little more manageable because I can trust the person I will be when the next thing comes.
Thanks, Laura. I can see in the chat that I am not alone. almond stones and I think in perspective, these are tools that are very precious and I thank you for sharing them with us and I think that brings it back to him and to Alden and back to your family um one thing. which you also said I would be curious to know more about this, first you said that this compelling part of being a trained doctor and then of course being a parent is a completely different experience and then you said that they hold my hand a lot. from found found its way as you continue to find now, can you talk a little bit more about what that looked like and the ways that you found your way to the space that you're in now, whether it's the people that Did they offer? supportive practices in your life that offered support, the kind of tools that led you to rethink the techniques, yeah, I mean, I think from the beginning it was finding a therapist that I could talk to and that I really liked being in the pain. with you and be kind to you.
I know, let it all out in a really safe space and then I took on a structured program. I took mindfulness, stress management, and resilience training through the Henry Benson Institute. It was two hours a week for eight weeks and you know, I offered you something really basic. I know some structure around this idea of ​​how to create coping thoughts. um you know, I was in a completely traumatized survival brain and my mind was thinking what if, what if, when and you know, and so get to a place where I could. calm down and say, okay, what's going to help me right now, bring it back, you know, think about that perspective pie, you can choose any perspective here and, you know, that training was very, very useful, and I think Than find a couple of people, um. in the archive of my life that I could talk to and finally it was writing and you know I wrote my first poem, it was the assignment for the last week of that mindfulness class and it was the right outlet for me um and um you I know that the Humor can be for some people, you know, exercise, but for me it was writing and finding that kind of cathartic release.
Thanks for sharing those tools too, it's great to hear about them and I appreciate you sharing them with us. um and I feel like I could talk to you three for hours and hours um but I'm going to turn to you uh so under this umbrella of reframing um what is this concept like? um in your life now, how do you think about it? another language, other words, you give it like Laura said or or um, how do you live in your family's life? Yeah, I think about the now a lot, um, like most things, my wife was way ahead of me on this and she got a I got this book a few years ago called the Happiness Project by Gretchen Rubin and she was reading it and very interested in it and shared it with me after she finished it and then the idea is that being happy is a matter of choice. that you can decide to be happy in the now no matter what is happening and that reframing is something she and I have worked very hard on over the past few years and part ofIt was for ourselves, but a big part of it is that we wanted that mentality to be the one our son adopted as well.
He is Tess's brother, Dana, and is three years older. We really wanted that to be something where the three of us live together, so we've worked really hard to achieve that. doing that and then we live that book, the happiness project every day and reframing the now is working for me right now, like today, for example, worked. I'm in the doctor's office with Tess and we were in the big waiting room but then they move us to the little waiting room and you're still waiting and you're there waiting for a long time and I've been in so many doctors' offices so long that it's very easy to get angry and just say: you know why me and why I'm in a doctor's office again and I thought about all the other things you could be doing and instead I never went there.
It didn't happen at all. Instead of getting angry at all, I feel this enormous gratitude that we have Tess and that we can take her to the doctor and that she is with me and that she is with us that we have her and that now at least there are no complex puzzles that we have to solve about what As far as your health goes anyway for the moment and I feel like that thinking about the now and reframing it that way, you know, like Laura, I think writing really helps me. I have a podcast that I've done every week since before we got Tess' diagnosis, so since 2015 I've been doing this podcast every week and just writing down what I'm thinking and what I'm grateful for and what I noticed.
There are many things that I just notice. I'm really not an expert. It's very clear to me. on the podcast, if you're looking for answers you're probably not in the right place, but this is what I saw this week, this is what mattered to me, this is what I noticed and I think writing can be really powerful because it doesn't really do anything. , so it just lets you notice things and comment on them and I think that can be really powerful. Okay, life is holding on that noticing can be such a powerful thing to invoke, and so can gratitude, which it seems to be. a theme throughout uh what both you and Laura are saying so far um I'm curious to know what you mentioned uh your wife introduced you to this book have you ever thought that this is what mothers and fathers are like for you as a father? are going through things like anticipatory grief or reframing, does it feel different for you as a parent?
Do you think the same as your wife or not? um, I'm, I was, I'm thinking about some parents that come to mind right now, who have shared their experience with me and so I'm curious if you have your own experience to share from that perspective, that's a great question, I think so. I think there are different parts that surprise us at different times and are surprisingly similar in some ways, but it's almost like we take turns, like when one of us crashes and burns and has a terrible day and right in the thick of it, the other person can feel it and gets up and says, "Okay, I'll do it." I'll be the functional parent today and I'll deal with things that you can take one day to miss it and not do so well and then you know tomorrow we'll trade we'll trade again it'll be your turn um we. taking turns saying that's it's just how we function I guess I don't know well that's a uh I really appreciate that response I feel like we're interviewing all of you but you also have the relationships within which anticipatory grief is reframed and Other tools are very much alive. , so I appreciate you talking about that within your relationship with your wife as well, um, Michelle, we'll turn to you, um, to think about reframing and I'm thinking about things from different perspectives. uh I could hear this, of course, a lot of what you were already saying, but I would love to hear more, yeah, and one of the things that you know in the beginning with seizures, um, and this is anticipatory grief and what it takes. to a rethinking, doctors already know.
He made it very clear that any seizure could be his last seizure and that was very, very scary and I had to accept how can I balance this quality of life and you know what I allow him to do and So at first we hugged him a little bit, you know it was quite young man, it was easy to do, but thank God for my experience in understanding that quality is very important, so I made a promise to him and me and my husband, you know we are going to try to put in the highest quality possible, um, Instead of living for, what if he has a seizure when we go to Disneyland?
What if he has a seizure when we go to see the world? We go to a lot of places here in Southern California. We just went ahead and did it and I had a plan of action and because I had my plan I felt pretty comfortable because I knew how much those memories meant to him and to you. Do you know what happens if he doesn't care? He just enjoys it when he wakes up from a seizure. He doesn't remember the seizure and how scary it was for Mom and he doesn't know he was sad or for how many hours.
They've been through, just remember that he met Sparky the dolphin, and he had, you know, he got to see an otter and he has such, it brings that joy so automatically, so we live life for the most part, um, without worrying about the what ifs and I was telling it live, you know, I'm very grateful for that mentality because in 20 years, what if it hasn't happened and we have 20 years of memories, you know, and for my son, this is a rethink for My son, he doesn't really have any kind of understanding of past, present, future, he's going all the way and, um, those who relive those moments through pictures and talk about them are as joyful today as they were when he he was five.
I'm very happy that we do that and I do it in relation to the reframing also for him, this is still very joyful and really allows it. I really need to reframe, it's for the best because he allows me to be present enough. To find joy even in the most difficult moments, like bittersweet, I use that a lot, but those bittersweet moments and I was very familiar with them, like Laura, you know from my background, and I understand some reframing, but it was like that, it was So short. term and it was, you know, it's very different, like Laura talked about, um, when it's your son, my nursing experience disappeared, all my pain I understood that any psychosocial skills that I had were gone because I'm, I'm the mom, um, so, um, like this.
I could understand, you know, my mom, thank God for her, she used to teach me to write a pros and cons list before making any kind of decision, which made it very difficult to make decisions and finally make them, but did you really made me able to find those professionals pretty quickly and thank God for that? So what I tell myself when reframing is like right now at this very moment because it's so easy to sweat or, oh my gosh. I should have done this or anything, you know, um, what if, what if, what if? But not right now, in this very moment, where is the joy and this reframing?
Really, another lightbulb moment for me. With the gap I was learning to think about things. Gavin's perspective and like I said, you know his fantastic memories of all the theme parks we go to and everything he loves, but I was also saying to Blythe, you know what's really important to him, I can, oh God. mine. She had a terrible day of seizures and she slept all day, she lost a whole day, she lost a whole week, you know, and poor me, poor gavin, but that kid can really take a little joy out of a day by watching barney with me or um, you know, play a game or just hug each other and um, I change my perspective and see that sweet little boy recovering and hoping that when he wakes up we can do something together and I was saying why the moment it was released it caught my attention when I was little and he had more language and said in his nightly prayers that he's very small and one day, it's not a particularly exciting day, there's no Disneyland or anything, just one day, he had the longest list of thanks. he was saying his goodnight prayers and they were things like thank you, I wrote them down thank you for my macaroni and cheese, um, it was delicious, thank you for playing with the sea creatures in the water, thank you for watching Barney, thank you for um, mommy me too. playing games thank you for helping me prepare the food, it stirred something, you know, from his perspective, he had a great day, his list for God was so long, you know, and that made me realize that quality of life needs to be looked at. through Gavin's Perspective and then that was forever.
My goal is to think that if this were his last day, what would his nightly prayers be? You know, and um, just to make sure that he was loved and that he had a good day, and another thing about abstaining. Gavin has lost many skills, he has had so many setbacks to the point where people thought he had strokes. You know, he's lost a lot physically, cognitively, he's more than two ums and ums, but in his head he says things like Gavin is fast. he tells me he'll move his head fast and he thinks it's like spinning, you know he'll walk fast with his walker and he thinks it's like running, you know this big race and he's really excited about it and and um so yeah, he's lost some skills, he's lost a lot of skills, but the reframing of that is that he still has these skills, you know, like Alden Stones, we have cool days or cool things that Gavin does and Gavin succeeds and things, Gavin. he likes the word winner, so gavin is a winner many times doing many different things and, you know, skills come and go for us too, I think we lose them and then we might get them back and then we lose them again, and you know .
I just have to learn to love Gavin who is in front of me at that very moment, so I guess, oh God, Michelle, again. I feel like I can benefit from listening to you for days and days and days and it feels like Gavin is also teaching us about the best teacher, he has the best, the best perspective on everything, really, he has so many ticks on his professional list and almost nothing on his negative world, and if there is something negative, it will be the first in Negative than positive, as if he always has this positivity and it is allowed.
He taught me how to learn. Even you know, he used to reframe well, if you didn't do it today, but maybe if you keep working, he'll walk, that's a terrible path. to reframe something you know, that's what's terrible and now my reframing is yeah, he didn't walk today but he sure hugged a lot and you know we played this game and yeah, I love that Michelle and Michelle, you also picked up something that I I'm conscious of time, I want to make sure we have a good moment for questions, so make sure you ask some questions here during our last 10 minutes together, but maybe in a small round, almost like a lightning bolt, before that, pick it up um michelle. that's what you say to yourself sometimes right now at this very moment I'm curious if you each use something that came up when we were talking together earlier also if you each have a mantra particularly when things are difficult um or it's difficult to access reframing um What is in lightning?
A mantra you share with yourself to offer today. Michelle. Do you have a different one too right now at this very moment? He's really reframing himself right now right now and that's why I have to do it. I wrote. down, I have to hand him over too right now, right now, what can I do if he's sleeping on that couch for 10 hours straight? Yes, I'm watching it and monitoring it, but I have 10 hours to also work on myself and do some grief work and I have to see it as a beautiful gift too, so try to get some kind of joy out of the place we are. beautiful, beautiful, how about some mantra for you?
My wife and I are endurance athletes. uh we just like marathons and trials and we just run all the time and uh I think for us it's probably holding on uh I can't say it's working that much I think there's a lot of time where I feel like why does everything have To be an endurance sport, why do we have to make everything like something you have to endure? So I can't say it's working particularly well for me, but that would be my mantra at the moment, it's wonderful indoors, thanks, how about it for you? Laura um, I think I've accepted the idea.
I think a lot of the last year I've been trying to be okay with myself a little bit on this journey so my biggest mantra last year was I am enough um and another one. I've been identifying recently with one in this book raising a weird girl. That's love or sorry. Breathe love. Let it go. It sounds powerful. other things appear, a reframing of a reframing, I have to do it, thanks, so now there are open times for questions. I was looking at the chat. I have a question that was sent to me privately. Please feel free to add more.
Maybe we have. time for two or three, we'll see how we do it and I'll just pose the question and whoever wants to address it can do so, but the first question that occurred to me was: what about the moments of reframing? difficult or when reframing feels difficult or inaccessible or annoying or someone offers you a reframing and you say no or those moments arise can you talk about moments when reframing can seemless accessible? um, I mean, I think that experience I had at the wedding like I didn't want to reframe that, so I just went out and what I call a pity party, I threw myself a really strong little pity party and I sat with it, you know, like, it's not appropriate to reframe that is a real pain and walk with it for a second to hold it and acknowledge it and then you know, breathe through it and let it go and come back to the party and you know, celebrate that your friend get married, um, but you know, I think. sometimes it's not appropriate to reframe things and the other thing that was helpful for my husband and I in the early days was very deep in grief and depression after the diagnosis and I didn't really have the tools to reframe it and we couldn't be agreed on where things were with alden and then we started instead of addressing alden's situation together before going to bed, we would just tell each other five things we were grateful for that day, you know, the really specific, um, what it was that went well, what was warm or meaningful.
Um and you know we found five every day that we shared with each other and we reconnected with compassion that way and you know it was a beautiful practice that I think helped us get through some of the worst moments, thank you, I appreciate this. um, you know, sometimes it's support, it's all, it's pain, you know, even the anticipation, you can remove and allow it to be what it is, what it is, what pain is, um, but we'll jump for you at any time. when it feels hard, actually. I wrote something long about it, but Laura, you know, I mean, I wrote sometimes, I just don't want to hold back, you know, sometimes you just have to acknowledge the pain of the day and, you know, but he's not experiencing the pain himself.
I am and that's why I usually, if the situation allows, move on and address my own pain. I use that time and you know the other two talked about writing for me. I became very good at not acknowledging my feelings and so on. those moments and I'm just journaling, it really helps me organize how I really feel about this because sometimes I find it a little easy to bottle up my feelings and push things, put things on the back burner and not acknowledge mine. grief enough so sometimes you have to do it yeah I definitely do the same michelle, where I'm good with the now but where I really struggle is the future, especially the far future, it sneaks up on me and gets me.
I was surprised, you know, for example, our family is hosting our first big fundraiser for our foundation, we rented a big tent and hired a caterer, we have all this in our front yard and I'm ready to go until I realize that this is some kind of Tess's wedding because maybe she won't get married and all that sadness comes from the concept of a life and what a girl's life is supposed to be and all around me they know my friends who have my age. They have daughters that are growing up and writing a story and getting a driver's license and getting married and just talking to them, I mean, just the fact that their daughter is talking to them and all these things that a girl is supposed to do in that test doesn't and maybe it doesn't, so I can't really go too far into the future and I just don't, I don't go that far into the future, I go like two weeks out of every three weeks and if I go too far in the future, it breaks my heart when I do it and I can't figure out what I'm supposed to do with it because that feeling is about things that haven't even happened.
It still happened or it didn't and yeah, I don't know what to make of it. I don't know, you know, I have a small wedding because weddings, of course, you know our kids aren't going to do that well. The aba therapist child therapists had both my children at their wedding and it was the most amazing thing and Gavin at least once a week tells me about the time he got married and what I think I'm trying to tell you is that maybe that it was her wedding it's her celebration it's a celebration she was a part of she doesn't necessarily know it and her story doesn't have to be what we necessarily dreamed it was even if our children were very typical it's very possible it's your story it won't be right , you know what we're dreaming about and that's where the kind of continuous pain and stuff comes in, but she sure can be a princess and she can sure have a big party and she can sure make you introduce yourself to a big, wonderful dress and whatever she wants is simply different, she is different and but that does not take away that pain that she will not get married.
I really appreciate all of that. Well, there is a question that has just arisen. There's an earlier question and I'm wondering if you could relate to other tools that you could have used, whether it's formal treatment from a medication perspective for yourself or other types of therapeutic tools that you could have used to get through the really difficult times. and this question just came up. I am very inspired by all of you. How do you avoid going there? I think it kind of relates to this question too, but if there are moments where it just feels big and seems overwhelming from this question, what do you do in those moments for yourself?
I realize that's a great question to answer in the last few minutes that we have together, but are there things that come up in those really difficult moments that would be helpful to offer together and reflect together today I obviously cry a lot still and um it's good to have the minus some friends who really understand that it doesn't even have to be the same diagnosis um but that helps me because you I can cry and you don't even have to explain why you're crying. I live next to some hills and I drive up to those hills and I turn off the car lights at night sometimes when things get overwhelming and I just cry and it just comes out and I write to find out what I'm really thinking.
I usually get to that point where I feel overwhelmed and just need to release a cry when I've been pushing things too long and that's very cathartic. for me, laura no, I think that release is super powerful, I think if someone feels like they can't control those thoughts, they worry constantly, you know, and it's really impeding their life, you know, that's just that's a sign of clinical anxiety or clinical depression and it is worth talking to a doctor or know a provider. I know it personally. I was actually in the throes of postpartum depression when we received Alden's diagnosis and had been resisting the idea. of treatment at that time and when we got the diagnosis I thought it was time to stop resisting, so I saw some prescriptive help at that time, which got me through a couple of months, in the form of just sustaining myself. me afloat and helping you sleep and you know since then I've been able to go beyond that, but it was very helpful for me at the time, since then I've leaned on other practices to try to figure out how to control my brain and my mind and my thoughts and for me that's really leaned into mindfulness training and it's really training your muscle memory and you know the more we can tell when you're going and you don't need to be a you know yoga Loving the tea drinker with covered teeth, but thinking in um, you know, thinking about your own thoughts and being able to start letting them pass and not having to engage with them as much, um, and that takes daily practice and you know, some kind of meditative practice, whether it's a body practice. like yoga or um or guided meditation, or you know other therapies that that kind of helps retrain the way your thoughts race.
Thank you Laura and I appreciate you waiting too. You said this before. Working with a professional. Therapist can also be helpful for some, especially in those darker moments, and partnering with that therapist for additional treatments, um uh, if you feel appropriate and guided by that person, so I really appreciate you keeping that up, I recognize that 601, but you do it? I also have any final thoughts on this topic or any additional tools that you may have found particularly useful. Yeah, um, meditate almost every day, work on the mindfulness part, like Laura said and also like Michelle mentioned.
You know, you have friends who are dealing with rare diseases. I mean, I have a couple of people, one on the west coast and one in North Carolina, like people I met once in person, but I'm in contact with them all the time, so that's what I'm dealing with today and they . You say yes, me too or yes, it was us last week or you know the idea that they are going through what you are going through and that their children are in different stages. You know, maybe they're just starting out or have older kids and you're already at that point that you fear like me.
I don't think it's a good idea to leave everything behind, so you know, I'm saying I can't go too far in the future. I think what's difficult for me is that. I don't know what that's going to be and there's no point in obsessing and worrying about it. I think it's helpful for me to listen to people who are already there and doing well, so our son wants to move out of our house. and we're putting them in a group home and we're at that point so I like hearing those stories of people who are dealing with other rare diseases, that's helpful to me, I think I appreciate it, yeah, I feel like there's a theme of community through what the three of you said, which I feel like is almost a beautiful way to end our time together with the community that you've joined here tonight and um and with the community of the larger parent network group. brave um I just couldn't thank you more for spending this time with us, beau laura and michelle, and sharing all your wisdom and being a part of this community as well and offering your gifts to a larger community as well. thank you all for joining us, the chat has been so strong and so inspiring to read you, beau michelle and laura, there's a lot of gratitude from everyone, um in the chat, too, uh, for your generosity, for your love and for your time.
Um, just thank you from the bottom of my heart as well for joining today and thank you to Blight, Jennifer and Janet and all the participants on the call who have created this space and created the brave parents network. Um, but I'll speak as As a palliative care social worker, it's a valuable and invaluable resource, so thank you all and the community, thank you all for being here and joining us.

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