TRANSCRIPT - Supporting Families of Children with Complex Health Care Needs in Grief Across the Lifespan Ð 11/11/24

>>Melanie: Hi. I'm Melanie Knapp. Megan was not able to be present today so I have the privilege of spending time with Jana and you all. Today for your Coffee Hour, we will be talking about supporting families of children with complex health care needs in grief. A tiny bit about me, I live in Texas. My son, Christian, was a former premature baby and Deafblind. Christian died suddenly on November 3, 2005 at the age of 25. So why was this grief peer support group started? Approximately 100 children die annually, according to the national Deafblind child count. And in 2017, NCDB, National Center on DeafBlindness, created a focus group that defined the following needs: One, a list of resources for where we moms and dads could go for support. Two, the need for connection to other families of children and young adults with DeafBlindness who had died. And, three, we needed permission to know that what we learned from raising and loving our kids mattered and we could help others. There were family members that were trained in peer-to-peer grief support and in 2017 the first-ever virtual peer-to-peer grief support program for family members was born. I was a member of that group. There were six moms and it was a coincidence that we all had names that begin with Ms. Megan had approached me about the group, Megan Cote. Christian had died in 2005 so 12 years after his death I was going to my first grief group. I did not realize that there were so many things that I had not dealt with. Today I cannot specifically tell you what they were but I can [Lapse in Audio]. It bonded us forever. We have two groups. Phase 1 and Phase 2. We also have a closed Facebook group. Phase 1 meets for approximately five months, ten sessions beginning in the fall around September through to the end of February. Phase 2 is for our families that have been through Phase 1 but still want to be connected and supported. We meet once a month and we usually take the summer off. And we are currently facilitating our ninth group for Phase 1. So what have we learned? In 2008, Jenny Stepanek published her dissertation called the experiences and needs of parents whose children died due to degenerative disabilities. If you remember, Jennifer Stepanek had four children. All four of her children died due to a rare neuromuscular disease. Her last child was Maddie, a well-known poet, who died just short of his 14th birthday. I believe she continues her work with the Maryland Deafblind Project. Dr. Stepanek interviewed seven bereaved parents whose children died between the ages of 7 and 21 due to complex health care needs. The findings from her research perfectly assign with what we have learned from the families we have supported thus far, which include the following: One, abundant stress from dissonance. Two, exhaustion. Three, chronic changes. Four, unanticipated shock. Five, profound grief. Six, ongoing struggles for validation. And, seven, the positive impact of formal and informal supports. We also learned what we have that some of our grief group participants wrote. It changes you, the same way that your child's life changed you. Those changes are not in and of themselves good or bad, but you will never be the same, or look at the world or others in the same way again. We also learned that parents need hope, information, useful resources, helpful networks, healthy partnerships, choices, and validation. Here are two other parent perspectives. I didn't know on the day my child died that I would miss cleaning up your puke, changing diapers, going to the hundreds of appointments and seeing all those doctors and nurses at the hospital. It's like I had this family of medical people and then they all just disappeared when you were gone. Feeling emptiness. Another participant wrote: It's been years and we have a new normal. There is a hollow place in it, sometimes. But most of the time I feel like I carry you with me throughout my day, almost like when I was pregnant with you, and you were here/not here at the same time. Except this time, instead of just in my womb, you are in my heart. We learned that the parent-preferred supports were professionals' awareness of and attention to parent experiences and needs throughout the child's lifespan. That ongoing connections with providers and activities that were a part of the child's life. And support options beyond traditional bereavement groups. Here are two other thoughts from participates from our grief group. The best advice I received was the only way to get through grief is by grieving. I didn't know on the day my child died that joy and pain could live together so seamlessly in my remembrances of him. And that I would welcome the pain if they were a package deal. And another: It has given me an opportunity to speak about my child to people that understand. This group is unique in that our children are Deafblind with some that have complicated medical issues. We have been intimate caregivers of our children. Our identity has changed after our child's death. We experienced secondary losses. For example, our connections with teachers and medical doctors and medical teams. Also, unexpected reaction from our family and community. And the unexpected shock of death, even when loss was anticipated. Concern about the supporting surviving siblings. And impact on relationships with individuals who assisted us in the care of our child. My child died. I miss him and I talk to him every day. It was 19 years since he died on November 3rd. I have been a peer support grief facilitator with Megan and Molly Black for the last few years. I have learned so many things from other grieving family members in our groups. My heart knows and I know what they are facing in their grieving future. 

>>Jana: A heartfelt thank you to you and your son, Christian. Melanie's journey through grief is embraced wholeheartedly and she'll be adding more of Christian's story and her experiences with the grief as I share information on grief in general for our families whose child is Deafblind. For what you heard and what the research says and what the families have said, it aligns just as much with the families whose child is Deafblind in terms of an ongoing intermittent grief for them as well. So I am the family engagement initiative lead for NCDB. I'm also a licensed clinical social worker with a background in palliative care and in hospice. So I've been involved in the grief process primarily as it relates to a quality of dying, where death is fairly imminent, and then death itself. So as we talk about it today, I just want to acknowledge that grief can evoke a myriad of emotions. It can also evoke thoughts and feelings from each of us, just depending on our culture, how we grew up, our unique relationships, and then our individual vulnerabilities and strengths. I would imagine some, if not most of you, have experienced grief in some form or fashion. And as you read my definition that I'll provide here too, then I know that you've experienced grief. With that being said, if you're triggered by our information, I would ask you in the space that you're currently in, to feel the emotions that you have or have had in the past and take a big deep breath and think about and move towards where you are today. At this Coffee Hour with us and the participants that share in the need to acknowledge grief in finding new meaning and purpose. I think we can all agree that losing a child is a grief that creates more pain and gut-wrenching questions about the order of life that's excruciating for those that have had to live with it. But for my purposes, I'd like to step back and work from this definition of grief that's on the slide. And that being the conflicting feelings caused by the end of our change in a familiar pattern of behavior. It's a loss of any kind. It's unique to the individual experiencing it. And the greater the loss to the individual, the more painful the grief journey. So acknowledging and processing the grief is key. And you'll hear that more than not today. One can't ignore it. It happens, whether we want it to or not. And how it happens varies with each individual. The loss in this definition is not necessarily due to the death, but nonetheless it is a loss. Our families and children with complex health care needs have compounding losses. It can begin with diagnosis but the complexity of living in the society that we do and the systems that were created by people that may not have had any lived experiences of having a child with complex needs, creates hardships for the whole family, compounding the loss we're talking about. And, again, having conflicting feelings caused by a change in what is familiar. Another definition that speaks to what we are sharing with you today, essentially reframing grief that I really like. Clinical psychologist Mary-Frances O'Connor, who is also the author of the Grieving Brain, says and gives the definition that grieving is actually a form of learning. So, we will talk about what grief is. Thank you, Melanie. Through these definitions, we want to know and reiterate what it is. It's also important to remind ourselves of this intermittently as we interact with families, as we interact with the people around us. That it's a loss of any kind. It's unique to each individual. And the key is acknowledging it. It's also important to receive acknowledgment from others. So many of you who are thinking I don't know what to say, I don't know, acknowledging it is one steps towards showing that you care. Grief also changes with time and it's a normal human response. Grief for our families varies, like we talked about. The grief process is lifelong with the associated losses that come with it. Ongoing intermittent grief exists across the lifespan for families. With a magnified complex support systems that require knowledge, skills, and perseverance to navigate while the families, in many cases, are keeping their child alive, being under trauma in doing that, and knowing that grief exists simultaneously. And on this journey, the good part is -- because we want good parts too -- is that the growth that comes from that process and in the majority of families their child brings great joy in varying degrees, depending on those life experiences of the families and who they have connected with, how they have felt supported, and how they're inspired by and learn from others in their support systems. I ask you to keep thinking about the ongoing changes in the families' lives who have a child with complex needs. This may have begun at birth and not having the child they anticipated. And yet they grew to realize or reframe their life now. Having more meaningful and purposeful work and life for them than they could have ever imagined by having this amazing child. So naming the grief helps us process it. I'm not suggesting in understanding the different types of grief, especially for the audience that's with us, that you start your relationship with your families by getting them to talk about their grief. Rather, being empathetic, supporting the families where they are, listening and allowing them to share their history of their child, and acknowledging that grief that you may hear or see in their behavior by validating their feelings and their story in a non-judgmental approach. So think of yourself and/or the families that you serve. And as I go over the types of grief that all or one or two types may apply as I talk about it. Anticipatory grief is huge. And Melanie mentioned this as well. But grieving, not just for what has already happened, but what is likely to happen or not happen in the future. So these are our families. And it may experience strong anxiety for them, and that's what you see. That they are no longer able to care for their child. Or what might happen to their child after their child dies. This anxiety and behavior can look strange and irrational if we aren't able to acknowledge it as a form of grief. Complicated grief is a loss that's unanticipated. The loss is traumatic and basically it just wasn't supposed to happen. So the individual suffers from a lot of confusion and one can't make any sense out of it. The grief doesn't have any resolution and given that society doesn't know how to support others in this complicated grief, it's suppressed for fear -- of the families too and for fear of being judged and we're less likely to seek help for the fear of being further stigmatized. There's also ambiguous grief and this is where the losses are uncertain. It may cause feelings of being overwhelmed, exhausted, and confused because of the lack of certainty. There's also episodic or recurring grief. This is a grief that happens over and over again. Usually of special times, like holidays or a birthday, feelings that really may fluctuate between confusion, anger, and disappointment. And it's just a roller coaster of emotions that are difficult to manage. The other grief is disenfranchised grief, and this is new research that our families with a child with a disability are included in, just like other situations, even if you consider divorce the losses are not recognized or understood by society. Really, the world at-large. The community and social network of church, extended family, friends, cultural beliefs and values. And since society doesn't recognize it, it's also conflicting for our families to identify it with themselves as well. I've had families who have -- that I've presented with whose lightbulbs have gone off and lots of tears and said if only that's what I would have known it was, was grief. If society doesn't know how to acknowledge it, there's little, if any practical or emotional assistance. Truthfully, we're included in this. We're society. It wasn't but a few years ago that my colleagues and I were hesitant to share a presentation like this. Simply because we're not immune to what society has taught us as well. It's too uncomfortable and personal and it's not our role. Or at least that's how we rationalize it. Yet it really is our role if we want to meet families where they are. And we talk about that a lot. The conversation needs to happen in order to acknowledge its existence. For all of us to come out of it more whole, especially since we want the families to be able to successfully engage with us. And, most importantly, so that in the end they're stronger, healthier, and better able to care for their family and their child. So, with that, I want -- Melanie had a comment herself. Melanie. 

>>Melanie: Yeah, I just wanted to say that many of our Phase 1 grief group members express their anxiety about the firsts that they have to go through after the death of their children. I wasn't any different. Because Christian died November 3rd, I had Thanksgiving and Christmas without him right around the corner. And I'll just say that that whole year was just a blur. I just tried to -- and most of us do, just try and get through one day at a time. One minute at a time. One hour at a time. One day at a time. 

>>Jana: Thanks, Melanie. So here in this next slide, again, in acknowledging and understanding grief in a way that maybe we never have. It isn't that we are taught this as we grow old or older, but many of you have heard of the five stages of grief that are outlined by Elisabeth Kubler-Ross. It is important for those grieving to understand that those stages are not linear. Grief is messy. The stages are messy. And to understand being able -- the stages is good because, again, you get to name them. You get to normalize what you're going through. And that is what families have told me in the past is I just thought I was going crazy. And if you think you're going crazy, you have another problem, right? So the last stage I'll say that in collaboration with Elisabeth Kubler-Ross and David Kessler, they helped us understand that working through the grief, naming it, calling it, understanding what it was. There's also another stage of finding meaning and purpose as a result of the loss. It's healing. And that's another reason for Phase 2 group in the sensing connection group that we have. Because they're growing and working through the grief. They're maintaining ongoing relationships, providing strength to the families to find meaning. And many of our families, as a result, have found meaning in doing things outside, whether it be leadership positions and engagement with organizations like NFADB, the National Family Association of Deafblind. DB MAT, other organizations. We need these families. There are not enough family leaders and to have them find meaning in this way, everybody wins. 

>>Melanie: May I say that for the first three years after Christian died my heart was so broken. I think I started to come out of the cloud after that. I knew I couldn't change things. I knew he wasn't coming back. I never felt angry or mad but I still cried. But after that three years I was really careful about who I cried in front of. So most of my tears and my angst were when I was alone. I think that we've talked with the Phase 2 people about that as well. People, parents. 

>>Jana: Thanks, Melanie. And it's ongoing too. But being able to have that support and talk about it in a safe space is great. So what is grief and the journey of grief look like in our families? I'll caution you that because of the trauma and stress our parents go through, these same signs are prevalent. Just be cognizant that both matter but not all signs are grief related. And the stages of grief don't necessarily happen in a perfect circle at a predictable time, like we talked about. People ebb and flow through them as time evolves, as I'm sure Melanie can attest to. But one thing though is certain that it's a roller coaster of emotions, behaviors, and physical symptoms. Some that are listed here and we'll go into a little more detail. Sadness and tearfulness you might see or have. Fear, irritability and anger. Loneliness is huge. A desire to talk. Anxiety. Guilt. Intense concern for the child. Fears of loss, the compassion, and concern for children. Rehearsal of death. And then physical problems. And, with that, you can see physical signs of grief, either identified for yourself or you may see them in others as well and understand that may very well be grief. But think about it. Shortness of breath. Tightness in the throat and chest. Changes in eating patterns, in sleeping patterns. Tiredness and fatigue is huge. Lack of energy. Vulnerability to illnesses. I'll add another thing I have seen amongst families is short-term memory loss. Their mind is going so many different directions that that's another one. That's another reason why we have to stop, meet families where they are, and realize that it may take more than just one e-mail. It may take more than just one card that you mail them. Just keep poking. So emotional signs of grief also include that loneliness and isolation that we talked about. Feelings of confusion. Deep, ongoing sadness. Feelings of anger and rage. And resentment towards others. And so as we spoke about the six stages of grief, individuals who are grieving and individuals who work with families in some capacity, here's what you can work on for our families. Is to be able to acknowledge the loss. Avoiding it hurts and isolation increases. Move forward and embrace the changes in one's loss will help them. Accommodating a new normal lifestyle without the loved one. And what can you do to provide meaning out of your situation that can move you forward to a better place. So for the physical and emotional signs that may show up, take time to watch for, be curious, and open with the family. And with a trusting relationship affirm the family and their strengths. Validate their feelings and what they can acknowledge. You can't fix it but you can be open to listening and taking time. Also keep in mind the resilience our families have. While they are living with grief and all that we talked about today, the fact is that our families bounce back and keep marching in that restorative part of grief where their ability to cope with the fluctuating trauma and loss, the back and forth from orienting themselves as needed from the loss and what it means, to being restored and the gift their child brings and how they're making meaning for themselves and others in the community. And lead their families in the same meaningful way. While I don't know each participant that's here today, we're not immune to loss and pain. But what helped you rewrite that narrative to bring meaning and purpose to yourself and others. If you were to track what you did and who supported you in doing so, the same holds true for our families. We want the majority of our families connected with other families in a safe place to tell their story without judgment. To process where they've been, where they are now, and what their vision might be for the future. It's powerful. Reframing one's story in this way makes it more livable but still true. Moving to make meaning and purpose. And we do a lot in this through working with families to build and tell their story. So Melanie's not free from her grief but she can openly and bravely tell you she finds new meaning and purpose as she includes Christian as the reason. And in this moment of time she continues to find such gratitude and healing in supporting others in their journey. So I want to add the hard work of leading one's family in a world that assumes life is like the majority of families without a child with special needs conditions one to step back and stay in isolation. But once a family's connected with other families who can feel safe to share their life and their story, good things happen. And through this sharing, families are retelling their stories in a way that's more livable. So their grief becomes acknowledged in a way that allows them to find that specific meaning and purpose in their life. I'm needing to remind us all of having mindful self-compassion. The need to stop and breathe in the present for ourselves and our families we serve. So while the majority of our families show astounding resilience, the question is to what cost to their own health. Self-care in our family's own worthiness is a journey as well but important to the concept of living a higher quality of life for themselves and their family. So, we hope that we've added some depth and understanding about the issue of grief for our families with complex needs. Our goal is to increase your awareness and understanding that that loss plays. A role in how our families are able to engage with you and others. Having this understanding will positively change the framework you use to engage and respond to families. Like all of us who have experienced grief, we want to trust who we work with, feel we are on an equal playing field in our partnership in making change for our children, and to be heard and understood. In your role, here's what we would like to have you take away. Please don't make assumptions about another person's grief and loss. A caution to you that not all behavior is grief, as we mentioned before. But be present and listen either way with empathetic care. Especially to parents' experiences and needs throughout the child's life span. Ensure non-judgmental confidential, trusting relationship. This is the tough topic with varied thoughts, feelings, and experiences, as we've talked about. We have to get comfortable with the uncomfortableness of grief, especially since our society has taught us otherwise. And it's grief that has lost and the trauma that our families have experienced. So also start with the family is in their journey. How do we do this? Lean in and listen. Families want to be informed and understand options. So we want to think family-centered as we approach our families. We want to offer what families have said they need, just like Jen Stepanek's work. Hope, being informed with useful resources, having helpful networks, healthy partnerships, choices, and being validated. This is not about us changing the family but rather changing us and how we provide a family-centered approach. So, be self-aware of your role and professional boundaries because I want to caution you in that as well. That also has to be part of this mindful self-compassion, right? I hope you don't walk away feeling that you need to be a grief counselor. We do ask you just to be better informed. And if you follow our takeaways above that we mentioned, that is what we consider our appropriate role as family engagement coordinators that we've taught, for you as TVIs, for other professionals, and for you if you're a family member helping other families. Referring a family member for counseling may be appropriate or pointing out that resources exist. But a reminder that what you carry on your shoulders needs boundaries and your self-care is as important as the support you provide others. So on behalf of Megan Cote, who couldn't be with us, Melanie and myself, we want to circle back to what we know. Our families love their child and the impact their child makes in their lives creates a better world. We just want to acknowledge their journey of grief to continue to strengthen the family's ability to lead. And so we appreciate your desire to learn and take the risk to be a part of that conversation. So things to consider if you are grieving. Time. Give yourself time. There is no time clock for when grief is, quote, over. Identify your self-care needs. Give yourself permission to give your self-care. Going through one's grief and not around it. That's the only way you're going to turn around. Find a healthier way to grieve. And expect the waves of emotions for a long time. The other -- and this is where we come in -- is to surround yourself with support, because it is crucial. Melanie? 

>>Melanie: Yes. We have learned -- and I'm going to say this again. It's been said. There is no time limit on grief. Absolutely not. I want to say -- and I didn't tell you this before, Jana, and I'm going to say it now. That when Megan asked me to do this, I was fine. But while I was doing it, it triggered me to that episodic feelings that I've had over the years, which is not uncommon for me. It used to be every day and then it got -- it was better and better. So I just wanted to say I did shed a few tears by myself. So we also learn that you cannot go around grief, you have to go through it. And that 12 years of not going -- I must have been going around it because when I went through it, I came out I think a better person. I hope so. I think Christian every day. I talk to him. I know he had a purpose on this Earth and sometimes, like now -- I don't tell this to very many people. But I tell others that Christian spent 25 years teaching me about DeafBlindness. What it was like for him and what we could do for him and for others. And when I got it, I think he just said good-bye to me. So I feel like, even know -- and for 19 years -- that he's right beside me guiding me all these years. His legacy is -- he's called the great motivator and he motivated me to become a nurse. He motivated his mom and dad, my husband and myself and his brother to advocate for all children and adults who are Deafblind. We started in Texas and we've gone national. It's only the right thing to do. And he motivated us to host a golf tournament in his name. We started it in 2008. We've had one every year for the last 17 years. And we've given away over 81 scholarships for college-level courses for interveners. You never get over losing a child. I can't not explain in words the pain. You do learn a new normal, which I have. And I'm okay. I'm okay. It's just, you know, episodic. So this grief group is another very important piece of my life and it's because of Christian. He made me do this. 

>>Jana: Oh, thank you, Melanie. The power of story. Melanie's growth over the years to be able to be here today. And to be able to proudly and openly share only helps us be stronger and learn. And I genuinely hope it helps you feel like you can reach out to those who are grieving. And the families. They need the connection. And they need what that feels like to know that people care. So, with that being said, this is the point where I wish we could all be in the same room face-to-face and that we could be hugging each other and we could be genuinely asking questions that are on your mind. I know in this venue you might stray away from it. I have discussion questions. Both Melanie and I have these questions, but it was mostly to reflect on. If you would like to talk about this, you can, or if you have questions or want to be able to share anything that's a highlight to you that you didn't necessarily think about -- or questions that you have. We can only answer them really from what we know, but we would love to be able to take the next ten minutes to be able to do that, if you are open to it. 

>>Kaycee: This is Kaycee, while we allow some people time to chat. I have a question for you guys. I was thinking about early in your presentation you shared about the family's loss of, you know, not only their child but of their team. You know, when they lose their child, whether it's a medical team or a school team or whoever those folks may be that have been around. For many of us, I know personally I've lost students. I'm sure many of the people in the audience here today have as well. And, you know, we feel that too where we know these families well and then these kids are no longer on our caseload and we don't have these families anymore. And I know I personally have felt like -- of course I share condolences but after that is it weird to reach out? Is it going to make them sad if I reach out? Should I? Should I not? And I don't know if either of you want to comment on that. But just kind of whenever you were sharing about what they learned and how they were upset about losing the team that had been supportive to them. Some thoughts on how we can support that or if it's in our role to support that. What do you guys think about that? 

>>Melanie: May I? You absolutely -- if you feel like you want to reach out, do. Because, well as you all know, I've remained in the Deafblind world for the last 19 years because I couldn't stand losing my peeps. So if you don't know what to say, all you have to do is: I called to check on you. And we appreciate it very much. So, yes. Reach out. And I know that I was -- so for me, I'm probably not much different than every mom. I was so self-consumed with my guilt, my grief that I hope I was gracious enough to let people know how much I appreciated that. Reaching out. 

>>Jana: Yeah. I appreciate Melanie's perspective and then I can just tell you from a broader perspective is we hear this a lot. If it's going to make the family sad, then maybe I shouldn't. And I'll tell you the family is already sad and to not have connection with you is even sadder. Because, generally speaking, people are not reaching out so it lends itself towards them feeling even more isolated and it isn't fair, so to speak, that they're in that situation without the support. Kind of like what we were talking about. Society doesn't know how to deal with it so society avoids it. And so check your motivation. If it's because you're uncomfortable because you don't want a family to feel a certain way, I think that might be reframed to say, well, how are you feeling, really? And go ahead and feel uncomfortable and reach out. 

>>Melanie: That was a good question, Kaycee. 

>>Kaycee: Another thought. Hopefully people will share some thoughts on your discussion questions in the chat there. I know many of the people here serve young children who likely are families who recently were diagnosed. And here we are with our information, right, and we show up with our resources and our information. And we know it's overwhelming to families who are processing and are dealing with, you know, the anticipatory grief. The changes in what they envisioned in their life and their child's life. I think the information you shared about, you know, just meeting them where they are and repeating things as needed and being there to support. But anything specific to really young children or really newly-diagnosed families and ways that we can, as education professionals, support the child's education but be there for the family at the same time? 

>>Melanie: You know, a few years ago at symposium there was a young woman that had a young child that did the keynote. I mean, it was before you were born, Kaycee, all right? And she was talking about all of the paperwork that was coming her way, not only from the school but from the doctors. And all she could handle was what was going on with her little child. That's not -- I'm not solving the question, I just know that me, you're so overrun with you've got to do this, go there, do this, that. Just maybe stopping and saying, are you okay? And I know y'all do that. I know that you do that. It's just I can remember with Christian that he was in the hospital for two years until he was 2. He came home and then it started. And I -- no one told me that, oh, he may not be able to do this or he may not be able to do that. It's I kept waiting for those milestones and all the paperwork was coming to try and make things better. And all I could do was I just want him to be able to crawl. I just want him to be able to -- And it seems like that's all I could handle. Just like that woman up there talking about -- she was funny but it was true. From a parent's point of view. 

>>Jana: I can say what I learned -- this is Jana speaking and I can say what I learned from families, that they say, you know, emphatically is, yes, I was definitely overwhelmed. I didn't know what was going on. I was focused on survival of myself and my child. But let me choose what resources I'm going to read or use or not. Don't you not give them to me because you think I'm overwhelmed. So it's, again, we step back to say maybe at some point sometime later you'll open up that resource or not. But let the family choose. There was another mom that spoke towards -- really she was explaining how cruel she felt she was as she looked back, to the providers. She resisted and didn't return phone calls. Didn't respond. And she ended up saying looking back, she said that her biggest takeaway for the providers was as a parent, don't leave the parents just because they're acting in a way that doesn't look like they're accepting the information or accepting. Just stay with me. Be persistent, stay with me, and eventually I'll get it, you know, I'll come around. 

>>Kaycee: I love that. That's so helpful. I think as professionals sometimes we feel like, oh, they're overwhelmed. Let me only give two things or only give three things. That's a really important thing to remember is they should have control over what information that they have access to. We provide that and they make that choice. I love that. Kate shared in the chat the idea of the cyclical grief is really resonating. It's not just a one and done process. It's ongoing. I really like that you guys mentioned grief around change as well. Not just but sometimes when there's change in health care needs and hearing and vision and environmental things and life that that can cause a lot of grief. As well. And I think sometimes it is less obvious to people outside of that world why it might have such a big impact on the family, on parents, in particular. I really like that you guys hit that as one of those areas today.