Hey Friends! Welcome to our discussion thread, here at our Caregiving as a Parent monthly round-table 🎙️this is a safe space to let our thoughts and feelings release. Being a caregiver is hard. And it can feel lonely. The hopes of having these discussions are to help remedy these feelings, just a little bit. I would say mantra, soothing music that is simple and repetitive, has been such a calming go-to for me, as a caregiving parent. It sounds simple, but when the nervous system is triggered in the worst way possible, I found it to be the best way to combat my anxieties and keep me in a levelheaded state of mind. Plus, listening to mantras was easily accessible while hunkered for some of our long, drawn-out hospital stays. MC Yogi is a fav!!
What a journey you have all been on, thank you so much for sharing it with us, incredibly moving. Your amazing children have had to learn hard life lessons too early, but I hope they bring a self-awareness and gratitude that will help them as they grow.
I had to really think about my answer to this as many things help me cope, but the main ones are 1. Water - being in it, on it or looking at it, 2. My roof garden - tending plants, watching them grow, connecting with nature 3. My SEND mum pals, more than anyone they get it and are always there for me with practical advice - and humour. 4. Sharing my experiences on here and finding wider community and understanding that I never hoped to connect with 5. Finally, probably more than anything else, still being the person I was before I became a carer - seeing old friends, dancing, being silly. Sometimes these things feel almost impossible to access, but then we hit a good patch and I can do them again. Sometimes they are daily presences in my life. But I never take them for granted!
Omg, Cooky, I love your thoughtful response!! Thank you for sharing so many gems with us! I love learning about the things that carry folks through. I love your #5!! Yes!! I think this is why I doubled down on my writing when my boy got sick. I instinctively knew that to carry him through I was going to need something to carry me through. I just ran on adrenaline. Fear for my ownself went out the window. And seeing old friends! This is the best medicine. I literally just came from garage saling with my high school best friend just this morning. It's the best time ever! Appreciate your thoughts and care here in our circle, Cooky. Can't wait for your article next month!!
Cooky - YES TO WATER! I didn't think of that at the time, but being near or on the water has been so key for me too. I live near a lake - what's your body of water nearby? And I also love plants. What is SEND?
YES!! Ditto to WATER!!!! I live right next to Lake Michigan and it's my healing space. Somehow it just knows my every emotion and it makes me better. Every time.
Thank you for sharing this beautiful post about Jonah and your caregiving journey with him. I love that Stranger Things played in the background and was a parallel journey. I traveled with my daughter Alix once she was diagnosed with bipolar disorder her freshman year of college. I watched The Good Place about the afterlife which first aired on the day of her death.
I’m so glad that you all have those glass fire boxes in your hearts and that you’ve known how to break into them, and to continue to be there for each other through everything. You are an incredible family! Lots of love 💝
Mary Beth, this resonated with me. I especially connected with what you wrote about there being no point where we suddenly get to say, “Okay, we’re there now.” Even when circumstances get better, I think our caregiver brains can have a hard time believing it.
My caregiving journey has been different from yours, but I understand that feeling of always being prepared for the next crisis. For me, some of the things that have helped me cope are humor, writing, friendships with people who truly understand, and learning to let other people help. I’ve also had to learn that I can’t prevent every hard thing from happening.
Writing has probably become one of my biggest coping tools. It gives me somewhere to put the fear, frustration, grief, and even the funny parts of caregiving.
I loved your idea that there really is no “there.” I think part of coping is learning to trust that when the next hard thing comes, we’ll get through it, just like we did before.
What a beautiful, reflective account of your family's journey through Jonah's diagnosis and treatment. As always, you express yourself with such grace - sharing the rawness but I've never heard you express a hint of bitterness, or complaint, always courage, always grace. Much love and heartfelt respect to you my friend 🙏♥️
Thank you so much for sharing this, it is so beautiful and heartfelt as well as deeply honest. I love this quote: ‘We began to see them as experiences, reminding us of our own collective competency, leading to the evidence that lends the confidence in knowing that we can absolutely handle anything.’ It REALLY stood out to me. We aren’t super strong or resilient in so many ways, but I DO somehow feel like we could handle anything crisis that comes our way now, not in isolation, but drawing on the resources (internal and external) that we have developed over time and testing. Such an encouragement to have that expressed so clearly!
My coping mechanisms almost always involve other people. I think good friendships are like gold. I’ve got this one particular friend who’s a social worker and has quite literally seen it all, so she’s super helpful on a practical level, but she’s also hilarious and (gently) takes the piss out of me when I very much need it. I make sure I see people like that whenever possible!
Lois, I love this. Good friends really are like gold. There’s something about having someone who can listen, help, and also make you laugh when things get hard.
Incredible story. I loved seeing how much your family holds each other up, through the rough times and the "after." I agree with the mindset to shift "crises" to "experiences" - this is something you can get through and learn from, just as you've done before. It's so hard in the moment to remember, but so valuable - I love this reminder that we are building confidence and competency when facing challenges. Damn, I should be SO skilled by now ;)
My son is mostly non-verbal autistic, 27 yrs old, and lives with my husband and I. One of the most important coping mechanisms I have - that I'm so grateful to have stumbled onto during some of my son's roughest years - is meditation. Even my very inconsistent practice, following the teachings of down-to-earth practitioners like Dan Harris and Cara Lai, has been a game changer for me. I knew that MY reactions to whatever was going on for my son at any given moment impacted how he responded, too (how many times did I just make things worse, whew!) - and meditation helped me understand how to slow down and respond with presence, even just a tiny bit more wisdom and patience, instead of blindly reacting out of fear and frustration. And now that we are in an "after" period that is better than before but challenging in new ways, the teaching of meditation and mindfulness are something I can dip into when I need it (which is often!)
I can relate to this. I’ve learned too that how I react can make a situation better or worse. I like that you have something that helps when things get hard.
Wow, Robin, thank you so much for sharing what has helped you! And I agree with you, if I hadn’t had some kind of meditation practice before our world flipped, I just don’t even know. And even with it, you nailed…”how did I just make this moment worse?” I think about my “why” alot more in the moment now. Which helps me come back to the practice more often. And my husband has followed suit over the years now. It’s just so much better in those emotionally charged moments of movement and anxiety. That “pause” holds so much. Really appreciate you sharing your heart here, Robin. Welcome to our circle💛
I wish I had found meditation and its lessons a lot sooner, but I am so lucky to have it in my life now. The pause, yes, so so important for me. Thanks for the welcome!
Interestingly I think meditation, prayer (& I'm an atheist) or something similar has helped all of us in some way. Once you realise that your power only lies in how you respond, that you are not responsible for the feelings of your caree/ the rest of society, then you can work on your own acceptance ❤️
I discovered Mindfulness and meditation just after my Dad's nightmare hospitalisation back in 2015 - I'm so thankful I did, and I've done an online course every couple of years to 'refresh'.
Viktor Frankl's book "Mans Search for Meaning' also impacted the way I think and approach life challenges...To Cooky's point about response:
'Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.
Mary Beth, this is so wonderful! Thank you for sharing so much of your family story. And like others, I love your family picture!! Those hats!!!
When I think of coping, I think if massages, mountain drives, moving my body, and journaling. If I had to narrow it down, massages have stayed part of my journey through it all. There is something about it that is both healing and grounding for me.
As I ready your piece, another part that really got me thinking was he impact and experience of your other children. What a hard and life changing lesson you have all been through! One that will serve all of your kids forever. You talk about resilience, competency and resilience. All of these things are forged in fire. It's so powerful for your children to have gone through this with the support of you and your husband in your home. They will have these qualities and skills forever! That's a beautiful thing.
My youngest has been through similar fire and I hope and pray every day that learning these lessons in the safety of our own home, surrounded by people how love him, will serve him well as he grows. I wish he didn't have to learn some of them so young, but I also see the strength, empathy, and resilience being built him him along the way. I hold both of these things all the time.
Thank you, Maria! And I agree with Serena. I love how you framed this. Learning these really hard lessons within the safety of our home. I go back to this idea often. It’s this in ordinary kind of practice that these kids get to experience, before going out into the real world. And thank you for recognizing the effect on Jo’s siblings. This was such a huge mountain as we were going through it all. They couldn’t even comprehend what was happening. My daughter was in third grade. And it was so rough on her. She is my little wild thing. A mama’s girl. And she took it so hard. But, like you said, they are stronger because—now. They have such insights, it blows my mind. Appreciate your thoughts and support here, Maria💛
Thank you for sharing your family’s story in such a poignant way. I’m glad you all are on the “hopefully ever after”! I like that term. Totally agree to writing as a powerful tool to process and reflect, hope is found in the words that trickle on the page or that we get to read. ❤️
Thank you Mary Beth, for sharing your journey in this beautiful post. I love the visual image of the fire boxes. Even in the most mundane moments our nervous systems can be triggered to a past trauma. I like the imagery of the fire boxed because at times we can just power though, forgetting we have tools to help us. One of my tools is journaling. I often will write the answer to these questions. 1. This is what is happening 2. This is how my body is reacting 3. This is the story I am telling myself ( this is almost always an untrue or unhelpful narrative. 4. This is what I know to be true. Another helpful tool is beauty. Feet on the ground, eyes toward the sky, anything to remind me I am here and I am ok.
I like these questions, especially “what is the story I am telling myself?” I also like your reminder to notice the beauty around us and stay in the present.
Oh, I have chills, Amy! Thank you so much for your personal, and so incredibly practical, journaling practice with us, here. I will definitely not those questions to refer back too! And yes, gosh dang those mundane moments! They are a clincher sometimes. Also, I just love the sky, as well. Looking up, in the depths of overwhelm can feel like a hug when we needed most at times. Thank you for input here, friend.
Thinking of your question, Mary Beth - what coping tools have you discovered that live on in recovery?
In addition to all the beautiful tools already named in this thread (journaling, music, mindfulness, movement, creative writing, gratitude), I lean on my faith and my community.
I have a relationship with God in which I'm no longer afraid to express my anger, fear and disappointment about my daughter's health issues. In the earlier stages of my daughter's mental health crisis, I unconsciously embraced beliefs that I couldn't be mad at God or I could only hold those feelings alongside happy ones. But after 5 years of walking through really hard challenges for my daughter (mental health crash & recovery, followed by some relapses, and then stability, but then she developed chronic health issues that have left her with limited functioning; we're still on that emotional rollercoaster), I believe it's healthier to be fully myself with God. Eventually I move through the hardest feelings to see glimmers of grace and hope.
My community is also a place where I find support. It took a little while to identify which friends could truly support me in caregiving - some have similar situations or just have bandwidth and wisdom. When my daughter's health declines or when my own big feelings arise, I reach out for a conversation, a hug, a prayer.
Thanks for your thoughtful post, Mary Beth! Loved the photo of your family with those decorated hats and joyful grins. What an image of unity and support!
Serena, I connected with what you said about allowing yourself to be honest with God, even about anger and disappointment. I was angry with God in the beginning of Maya’s journey and spent a long time questioning why this had happened to her and to our family. Over time, that anger has changed. I feel like I have a much healthier relationship with my faith now. I feel like I can still be honest about all my feelings and this has made my faith stronger.
Serena, you are HIS child. I teared up immediately, reading your response. Isn't it interesting how we think we are supposed to be. And when there is this gentle surrender that just comes, because we just 'can't' anymore, we feel more confident, more like how God wants us to be. We feel better. I love what you wrote... "Eventually I move through the hardest feelings to see glimmers of grace and hope." so beautiful. Thanks so much for sharing your heart here, Serena. lol and it was so much fun creating some corny fun for our boy's bell ringing day! Art heals and we are big on making art in my house to help us process.
Hey Mary Beth! I love art too! We did it more when the kids were little but still enjoy a family art night at times. Thanks for this beautiful affirmation of Whom we belong to and the value of surrender. So glad you get it!
Thank you for hosting and for sharing your beautiful and hopeful story, Mary Beth. Surviving the toughest, almost impossible moments often leads to moments of more authentic gratitude and joy. I have found that as a caregiver, making time for any physical movement is so healing and necessary for me. It brings awareness to my body and the present moment, along with the endorphins, of course. I’ve also consciously worked on letting go of comparisons to other families, or how things could or should have been - acceptance. Just that alone is a mindset shift that makes a huge difference to my well being. ❤️
Anna, I relate to what you said about letting go of comparisons and accepting that life may look different than we expected. That has been a big part of my journey too. I’ve also found that getting outside and moving helps clear my head.
Yes, Anna! You absolutely nailed it! Realizing the gift of Radical Acceptance is so powerful. It is a practice every single day, for me. Along with recognizing my own gratitude. Looking toward abundance instead of lack. It's such a challenge. I can go down such a rabbit hole, sometimes. Movement also really helps me too! I love running and kundalini yoga-which utilizes a lot of breathwork within it. What is your go-to movement of choice? Really appreciate hearing your voice here, Anna. Thanks for sharing!
Radical acceptance, that’s exactly it! And yes, it takes repeated practice for sure.
For movement, I’ve done different things at various points in my life. I went through a long phase that was mostly dance. I often circle back to yoga. Over the last few years, lifting heavy weights has been amazing - I feel like I badass who can tackle anything when I lift heavy shit, ha! But I also would say that I am not some naturally “sporty” person and can empathize with Amy and the difficulty that can come with getting started - especially when you’re not in a good routine. This was more true when I felt like I was forcing myself to exercise out of vanity or “should-ing” myself, whereas now I create routines around things that I know make me feel amazing afterward, so I crave that feeling even if I don’t want to start.
Anna, movement is so helpful but I often struggle to make myself move. It is helpful to know that I just need to start , to move a little and the rest follows
Anna, I love this! I also prioritize movement, especially outdoors as much as I can. It helps me feel less powerless and helps me gain perspective. And I'm with you in trying not to compare to other families - or moving from those moments into gratitude for what we do have.
Love the picture, the hats, and the Goonies shirt. It made me smile.
Thank you so much for sharing your story. Beautiful resilience as a family is what I took away from it all.
My son’s disease comes with a lot of fear and “what-ifs.” It seems like most, if not all, childhood diagnoses do.
I love to journal and one day in the early years of caregiving, I found myself doing this exercise. Eventually, I started to call it my “Facts Over Fear” exercise. It’s corny, but it works for me. Here it goes.
Step 1 - Grace to Feel:
I write down exactly what I’m feeling. I tell myself it’s okay and normal, if not an initial response to a genuine threat. I sit in the space and allow myself to feel all the feels. No judgment. No explanations. Sometimes I wrote a line or a word. Other times, the fear is long and unhinged. I just let the fear be felt in its entirety.
Step 2 - Just the facts:
I will then underline or highlight the facts in what I just wrote down – just the facts as a judge would see it if I was standing in front of her. I then cross out the rest, even if they are valid fears. Ultimately, I just want to see the facts. (There are no could-haves, should-haves, or shouldn’t-haves allowed here.)
Step 3 - What Holds Me Steady:
If what remains is still fearful and overwhelming, I write down anything that serves as an anchor within the anxiety storm I’m feeling. It could be scripture, someone who is currently in my corner, ongoing research, access to a new drug, or the ways I’m now doing my best to protect myself and/or my loved ones from the danger.
Step 4 - Rewrite the story:
I rewrite the fear as it now stands as fact with what anchors, courage, or protection we have witnessed.
I make sure not to invalidate my fear. The fear we feel is genuine and often meant to be protective. And those fears often do return. But, I find comfort knowing I have the power to rewrite my fear into something strong and courageous in the moment. Or, at the very least, I can find comfort in the fact that my courage, faith, and fortitude are bigger than my fear.
Ultimately, I experience fear, but I don’t live for it, and my family doesn’t live in it.
Sara, I like this idea of “Facts Over Fear.” A lot of caregiving can be spent worrying about what might happen next. I like that you give yourself permission to feel the fear first, but then come back to what is actually true in that moment. That feels like a good way to keep fear from taking over.
In the depths of worry, I remember Jo's doc telling something I carry with me today. "Correlation doesn't equal causation." That's been helpful on several occasions when my mind runs. Fear is so persuasive! So easy to fall into.
Sara, gosh, tears and chills! This was so generous of you to also share this beautiful journaling method with us! I'm definitely going to note this process in my journal. As I read through each step, I can remember pouring into my journal on some pretty stark days. The journal has saved my soul on so many levels. I love knowing how you make your way to that redeeming resolve because you ultimately know your truth. But, the path can feel so daunting and scary getting there. It takes such courage to mine for our own resilience. Thank you for sharing your methodology and heart here with us, Sara. Funny story about our shirts for bell ringing day, I had special ones made and they didn't come on time...so we had to rally. And with everything that came before...who cared. We didn't And it sorta lended a better time stamp on where we were in that moment, anyway. The Goonies thing was and is absolutely our family's purpose statement.
I’m so happy it resonated for you and I pray it serves you well.
“Mining for our own resilience” is a phrase I will definitely start internalizing. I love that. Resilience is an action. We often think it just comes to us. Thank you for sharing your heart!
Sara, I'm an avid journaler too. I like this prompts! I have found writing out my fears is also helpful. Sometimes I do 2-way journaling, in which I write out my fears, especially about my daughter, and also my anger, grief, and confusion. Then I pause and try to listen for God's response. Even though it also feels a bit corny and humbling (who am I to know what God might be saying?), I often find that calming wisdom comes out of my pen... and I know it's not coming from my anxious self! Then I go back and re-read those words later. I love what you said about experiencing fear but not living for it or in it.
Thank you for hosting today's discussion and sharing these vulnerable truths with us, Mary Beth. I love that photo of your gorgeous family.
In the darkest moments, the piercing, bittersweet joy moments and during respite - music is my balm and bypasses the need for words when I can't find them. It's why I've a long list of 'go to playlists'. For me, I need to practice mindfulness to anchor me into the now, given all that's passed and what I know is inevitable. Hope and curiosity lift me in the 'now', and they in turn push me to create content for Carer Mentor and connect with others. Feeling connected and not alone is so important.
Victoria, I can relate to what you said about music. It has a way of helping me, especially when I start to feel sad. I also agree that connection is important and having people who understand makes caregiving feel less lonely.
That's beautiful, Victoria - both music and content creation anchor us to community and creativity. I am with you in both. I've been practicing mindfulness more in the past year as well, although it's newer for me.
There are guided online courses that have helped me over the years - it was how I was properly introduced to the concept and then curiously pursued learning more about it e.g. Thich Nhat Hanh's books.
Mmm, I love this, Victoria. This is the nut…finding our “presence” despite all the things is so healing. I appreciate your friendship and your generous work so much, my friend💛
To answer your question Mary Beth… oh man here we go…
Caregiving has taught me that coping is less about eliminating fear and more about learning to live alongside it. The possibility of another hospital stay, another setback, or another sleepless night never disappears, but I’ve learned not to let anticipation steal today’s joy.
Writing has become my refuge, giving shape to emotions that otherwise feel too heavy to carry. For me, my poetry reminds me that even pain can be transformed into something meaningful.
I’ve also learned to celebrate ordinary victories because they are never ordinary to a caregiver. In the aftermath of crises, I return to routines, faith, humor, music, and the simple act of being fully present with my son Bray Bray instead of going down the rabbit hole of what might happen next.
Recovery, for me, isn’t forgetting what happened; it’s trusting that whatever is thrown our way, we’ve already proven we can walk through hard things together… one day, one breath, and one act of love at a time.
Bray Bray has taught me to choose presence over perfection, and for that I will always be grateful.
Chris, I like what you said about trying not to let fear take over, because it's easy as a caregiver to worry about what might happen next. I also agree that the small, everyday moments can mean a lot.
I love how you named that we don't eliminate fear, but learn to live with it. If we tried to eliminate it m we would be always moving towards something unattainable. It is important to remember one day at a time, one breath at a time.
Lovely, Chris! It is gratifying and also a bit lonely sometimes to celebrate ordinary victories that wouldn't be a big deal to the average parent, but they are a big deal to me and my husband. Yet celebrating them together brings so much joy. I hear resilience in both what Mary Beth wrote and what you wrote - we didn't ask for these challenges but they have shaped us and taught us about our own inner strength.
And you write so beautifully, Chris. So grateful to be able to read your words and feel a tethered connection. An understanding. Thank you for sharing how your mindset has evolved and how it carries you everyday. I have found a similar shift in myself. It’s helpful remaining present and let go of the grasping kind of feeling.
Hey Friends! Welcome to our discussion thread, here at our Caregiving as a Parent monthly round-table 🎙️this is a safe space to let our thoughts and feelings release. Being a caregiver is hard. And it can feel lonely. The hopes of having these discussions are to help remedy these feelings, just a little bit. I would say mantra, soothing music that is simple and repetitive, has been such a calming go-to for me, as a caregiving parent. It sounds simple, but when the nervous system is triggered in the worst way possible, I found it to be the best way to combat my anxieties and keep me in a levelheaded state of mind. Plus, listening to mantras was easily accessible while hunkered for some of our long, drawn-out hospital stays. MC Yogi is a fav!!
What a journey you have all been on, thank you so much for sharing it with us, incredibly moving. Your amazing children have had to learn hard life lessons too early, but I hope they bring a self-awareness and gratitude that will help them as they grow.
I had to really think about my answer to this as many things help me cope, but the main ones are 1. Water - being in it, on it or looking at it, 2. My roof garden - tending plants, watching them grow, connecting with nature 3. My SEND mum pals, more than anyone they get it and are always there for me with practical advice - and humour. 4. Sharing my experiences on here and finding wider community and understanding that I never hoped to connect with 5. Finally, probably more than anything else, still being the person I was before I became a carer - seeing old friends, dancing, being silly. Sometimes these things feel almost impossible to access, but then we hit a good patch and I can do them again. Sometimes they are daily presences in my life. But I never take them for granted!
Omg, Cooky, I love your thoughtful response!! Thank you for sharing so many gems with us! I love learning about the things that carry folks through. I love your #5!! Yes!! I think this is why I doubled down on my writing when my boy got sick. I instinctively knew that to carry him through I was going to need something to carry me through. I just ran on adrenaline. Fear for my ownself went out the window. And seeing old friends! This is the best medicine. I literally just came from garage saling with my high school best friend just this morning. It's the best time ever! Appreciate your thoughts and care here in our circle, Cooky. Can't wait for your article next month!!
Cooky - YES TO WATER! I didn't think of that at the time, but being near or on the water has been so key for me too. I live near a lake - what's your body of water nearby? And I also love plants. What is SEND?
YES!! Ditto to WATER!!!! I live right next to Lake Michigan and it's my healing space. Somehow it just knows my every emotion and it makes me better. Every time.
Like religion, water is a hyperobject, bigger than all of us, it has seen/heard everything yet is always new
Serena, I feel so seen :)
I've been in special education for 20+ years and I had to look this up lol
Special Educational Needs & Disabilities, it's the UK 'catch all' term for our kids.
I live 25mins from the sea,and swim there most days. Also paddleboard on the canal which is half a mile away. I especially love to grow chillies! 🌶🌶
I sometimes kayak on the lagoons but I'd like to get a SUP! Wow, chilies!!
Kayaking just as wonderful ❤️
Wow! I didn't know this term either. My kids are all in Spec. Education. My dream is to get a paddle board!! And yes to plants all day long!
Thank you for sharing this beautiful post about Jonah and your caregiving journey with him. I love that Stranger Things played in the background and was a parallel journey. I traveled with my daughter Alix once she was diagnosed with bipolar disorder her freshman year of college. I watched The Good Place about the afterlife which first aired on the day of her death.
Hugs, Julie
Thank you for the hugs!
I’m so glad that you all have those glass fire boxes in your hearts and that you’ve known how to break into them, and to continue to be there for each other through everything. You are an incredible family! Lots of love 💝
Thank you, my friend! Appreciate your support, always!! 💛
Mary Beth, this resonated with me. I especially connected with what you wrote about there being no point where we suddenly get to say, “Okay, we’re there now.” Even when circumstances get better, I think our caregiver brains can have a hard time believing it.
My caregiving journey has been different from yours, but I understand that feeling of always being prepared for the next crisis. For me, some of the things that have helped me cope are humor, writing, friendships with people who truly understand, and learning to let other people help. I’ve also had to learn that I can’t prevent every hard thing from happening.
Writing has probably become one of my biggest coping tools. It gives me somewhere to put the fear, frustration, grief, and even the funny parts of caregiving.
I loved your idea that there really is no “there.” I think part of coping is learning to trust that when the next hard thing comes, we’ll get through it, just like we did before.
What a beautiful, reflective account of your family's journey through Jonah's diagnosis and treatment. As always, you express yourself with such grace - sharing the rawness but I've never heard you express a hint of bitterness, or complaint, always courage, always grace. Much love and heartfelt respect to you my friend 🙏♥️
Thank you so much for sharing this, it is so beautiful and heartfelt as well as deeply honest. I love this quote: ‘We began to see them as experiences, reminding us of our own collective competency, leading to the evidence that lends the confidence in knowing that we can absolutely handle anything.’ It REALLY stood out to me. We aren’t super strong or resilient in so many ways, but I DO somehow feel like we could handle anything crisis that comes our way now, not in isolation, but drawing on the resources (internal and external) that we have developed over time and testing. Such an encouragement to have that expressed so clearly!
My coping mechanisms almost always involve other people. I think good friendships are like gold. I’ve got this one particular friend who’s a social worker and has quite literally seen it all, so she’s super helpful on a practical level, but she’s also hilarious and (gently) takes the piss out of me when I very much need it. I make sure I see people like that whenever possible!
Your social worker friend sounds fabulous. I can imagine how you'd pass on that same humour/practical support too, Lois - in your writing or IRL. xo
Lois, I love this. Good friends really are like gold. There’s something about having someone who can listen, help, and also make you laugh when things get hard.
Incredible story. I loved seeing how much your family holds each other up, through the rough times and the "after." I agree with the mindset to shift "crises" to "experiences" - this is something you can get through and learn from, just as you've done before. It's so hard in the moment to remember, but so valuable - I love this reminder that we are building confidence and competency when facing challenges. Damn, I should be SO skilled by now ;)
My son is mostly non-verbal autistic, 27 yrs old, and lives with my husband and I. One of the most important coping mechanisms I have - that I'm so grateful to have stumbled onto during some of my son's roughest years - is meditation. Even my very inconsistent practice, following the teachings of down-to-earth practitioners like Dan Harris and Cara Lai, has been a game changer for me. I knew that MY reactions to whatever was going on for my son at any given moment impacted how he responded, too (how many times did I just make things worse, whew!) - and meditation helped me understand how to slow down and respond with presence, even just a tiny bit more wisdom and patience, instead of blindly reacting out of fear and frustration. And now that we are in an "after" period that is better than before but challenging in new ways, the teaching of meditation and mindfulness are something I can dip into when I need it (which is often!)
I can relate to this. I’ve learned too that how I react can make a situation better or worse. I like that you have something that helps when things get hard.
Wow, Robin, thank you so much for sharing what has helped you! And I agree with you, if I hadn’t had some kind of meditation practice before our world flipped, I just don’t even know. And even with it, you nailed…”how did I just make this moment worse?” I think about my “why” alot more in the moment now. Which helps me come back to the practice more often. And my husband has followed suit over the years now. It’s just so much better in those emotionally charged moments of movement and anxiety. That “pause” holds so much. Really appreciate you sharing your heart here, Robin. Welcome to our circle💛
I wish I had found meditation and its lessons a lot sooner, but I am so lucky to have it in my life now. The pause, yes, so so important for me. Thanks for the welcome!
Interestingly I think meditation, prayer (& I'm an atheist) or something similar has helped all of us in some way. Once you realise that your power only lies in how you respond, that you are not responsible for the feelings of your caree/ the rest of society, then you can work on your own acceptance ❤️
SO true, Cooky. Thanks for sharing Robin.
I discovered Mindfulness and meditation just after my Dad's nightmare hospitalisation back in 2015 - I'm so thankful I did, and I've done an online course every couple of years to 'refresh'.
Viktor Frankl's book "Mans Search for Meaning' also impacted the way I think and approach life challenges...To Cooky's point about response:
'Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.
Viktor E. Frankl"
Very wise Victoria!
Frankl's words, book, and interviews are fascinating and SO wise.
Mary Beth, this is so wonderful! Thank you for sharing so much of your family story. And like others, I love your family picture!! Those hats!!!
When I think of coping, I think if massages, mountain drives, moving my body, and journaling. If I had to narrow it down, massages have stayed part of my journey through it all. There is something about it that is both healing and grounding for me.
As I ready your piece, another part that really got me thinking was he impact and experience of your other children. What a hard and life changing lesson you have all been through! One that will serve all of your kids forever. You talk about resilience, competency and resilience. All of these things are forged in fire. It's so powerful for your children to have gone through this with the support of you and your husband in your home. They will have these qualities and skills forever! That's a beautiful thing.
My youngest has been through similar fire and I hope and pray every day that learning these lessons in the safety of our own home, surrounded by people how love him, will serve him well as he grows. I wish he didn't have to learn some of them so young, but I also see the strength, empathy, and resilience being built him him along the way. I hold both of these things all the time.
Thank you so much for sharing, Mary Beth!
Yes, to massages!
Thank you, Maria! And I agree with Serena. I love how you framed this. Learning these really hard lessons within the safety of our home. I go back to this idea often. It’s this in ordinary kind of practice that these kids get to experience, before going out into the real world. And thank you for recognizing the effect on Jo’s siblings. This was such a huge mountain as we were going through it all. They couldn’t even comprehend what was happening. My daughter was in third grade. And it was so rough on her. She is my little wild thing. A mama’s girl. And she took it so hard. But, like you said, they are stronger because—now. They have such insights, it blows my mind. Appreciate your thoughts and support here, Maria💛
Love how you named the value of learning the lessons of resilience and competency in the safety of our homes… that’s a great picture!
Thank you for sharing your family’s story in such a poignant way. I’m glad you all are on the “hopefully ever after”! I like that term. Totally agree to writing as a powerful tool to process and reflect, hope is found in the words that trickle on the page or that we get to read. ❤️
Appreciate you reading and sharing, Diana! You have been such a good friend along the way. Your poetry and insights always lift me up! 💛
🤗
Thank you Mary Beth, for sharing your journey in this beautiful post. I love the visual image of the fire boxes. Even in the most mundane moments our nervous systems can be triggered to a past trauma. I like the imagery of the fire boxed because at times we can just power though, forgetting we have tools to help us. One of my tools is journaling. I often will write the answer to these questions. 1. This is what is happening 2. This is how my body is reacting 3. This is the story I am telling myself ( this is almost always an untrue or unhelpful narrative. 4. This is what I know to be true. Another helpful tool is beauty. Feet on the ground, eyes toward the sky, anything to remind me I am here and I am ok.
I like these questions, especially “what is the story I am telling myself?” I also like your reminder to notice the beauty around us and stay in the present.
These are such good journaling questions, Amy! Thanks for sharing them.
Love this!!! So simple and so powerful!
I’ve always loved this practice of yours. Thanks for sharing it. ❤️
Oh, I have chills, Amy! Thank you so much for your personal, and so incredibly practical, journaling practice with us, here. I will definitely not those questions to refer back too! And yes, gosh dang those mundane moments! They are a clincher sometimes. Also, I just love the sky, as well. Looking up, in the depths of overwhelm can feel like a hug when we needed most at times. Thank you for input here, friend.
Thinking of your question, Mary Beth - what coping tools have you discovered that live on in recovery?
In addition to all the beautiful tools already named in this thread (journaling, music, mindfulness, movement, creative writing, gratitude), I lean on my faith and my community.
I have a relationship with God in which I'm no longer afraid to express my anger, fear and disappointment about my daughter's health issues. In the earlier stages of my daughter's mental health crisis, I unconsciously embraced beliefs that I couldn't be mad at God or I could only hold those feelings alongside happy ones. But after 5 years of walking through really hard challenges for my daughter (mental health crash & recovery, followed by some relapses, and then stability, but then she developed chronic health issues that have left her with limited functioning; we're still on that emotional rollercoaster), I believe it's healthier to be fully myself with God. Eventually I move through the hardest feelings to see glimmers of grace and hope.
My community is also a place where I find support. It took a little while to identify which friends could truly support me in caregiving - some have similar situations or just have bandwidth and wisdom. When my daughter's health declines or when my own big feelings arise, I reach out for a conversation, a hug, a prayer.
Thanks for your thoughtful post, Mary Beth! Loved the photo of your family with those decorated hats and joyful grins. What an image of unity and support!
Serena, I connected with what you said about allowing yourself to be honest with God, even about anger and disappointment. I was angry with God in the beginning of Maya’s journey and spent a long time questioning why this had happened to her and to our family. Over time, that anger has changed. I feel like I have a much healthier relationship with my faith now. I feel like I can still be honest about all my feelings and this has made my faith stronger.
exactly - more real, stronger faith by being honest. I have gone through a similar journey with anger and disappointment towards God. Thanks Denise.
The 'anger' emotion is so real and so raw. Thank you for sharing your feelings around this, Denise. This part is so important to talk about.
Serena, you are HIS child. I teared up immediately, reading your response. Isn't it interesting how we think we are supposed to be. And when there is this gentle surrender that just comes, because we just 'can't' anymore, we feel more confident, more like how God wants us to be. We feel better. I love what you wrote... "Eventually I move through the hardest feelings to see glimmers of grace and hope." so beautiful. Thanks so much for sharing your heart here, Serena. lol and it was so much fun creating some corny fun for our boy's bell ringing day! Art heals and we are big on making art in my house to help us process.
Hey Mary Beth! I love art too! We did it more when the kids were little but still enjoy a family art night at times. Thanks for this beautiful affirmation of Whom we belong to and the value of surrender. So glad you get it!
Thank you for hosting and for sharing your beautiful and hopeful story, Mary Beth. Surviving the toughest, almost impossible moments often leads to moments of more authentic gratitude and joy. I have found that as a caregiver, making time for any physical movement is so healing and necessary for me. It brings awareness to my body and the present moment, along with the endorphins, of course. I’ve also consciously worked on letting go of comparisons to other families, or how things could or should have been - acceptance. Just that alone is a mindset shift that makes a huge difference to my well being. ❤️
Anna, I relate to what you said about letting go of comparisons and accepting that life may look different than we expected. That has been a big part of my journey too. I’ve also found that getting outside and moving helps clear my head.
Yes, Anna! You absolutely nailed it! Realizing the gift of Radical Acceptance is so powerful. It is a practice every single day, for me. Along with recognizing my own gratitude. Looking toward abundance instead of lack. It's such a challenge. I can go down such a rabbit hole, sometimes. Movement also really helps me too! I love running and kundalini yoga-which utilizes a lot of breathwork within it. What is your go-to movement of choice? Really appreciate hearing your voice here, Anna. Thanks for sharing!
Radical acceptance, that’s exactly it! And yes, it takes repeated practice for sure.
For movement, I’ve done different things at various points in my life. I went through a long phase that was mostly dance. I often circle back to yoga. Over the last few years, lifting heavy weights has been amazing - I feel like I badass who can tackle anything when I lift heavy shit, ha! But I also would say that I am not some naturally “sporty” person and can empathize with Amy and the difficulty that can come with getting started - especially when you’re not in a good routine. This was more true when I felt like I was forcing myself to exercise out of vanity or “should-ing” myself, whereas now I create routines around things that I know make me feel amazing afterward, so I crave that feeling even if I don’t want to start.
Anna, movement is so helpful but I often struggle to make myself move. It is helpful to know that I just need to start , to move a little and the rest follows
Anna, I love this! I also prioritize movement, especially outdoors as much as I can. It helps me feel less powerless and helps me gain perspective. And I'm with you in trying not to compare to other families - or moving from those moments into gratitude for what we do have.
Love the picture, the hats, and the Goonies shirt. It made me smile.
Thank you so much for sharing your story. Beautiful resilience as a family is what I took away from it all.
My son’s disease comes with a lot of fear and “what-ifs.” It seems like most, if not all, childhood diagnoses do.
I love to journal and one day in the early years of caregiving, I found myself doing this exercise. Eventually, I started to call it my “Facts Over Fear” exercise. It’s corny, but it works for me. Here it goes.
Step 1 - Grace to Feel:
I write down exactly what I’m feeling. I tell myself it’s okay and normal, if not an initial response to a genuine threat. I sit in the space and allow myself to feel all the feels. No judgment. No explanations. Sometimes I wrote a line or a word. Other times, the fear is long and unhinged. I just let the fear be felt in its entirety.
Step 2 - Just the facts:
I will then underline or highlight the facts in what I just wrote down – just the facts as a judge would see it if I was standing in front of her. I then cross out the rest, even if they are valid fears. Ultimately, I just want to see the facts. (There are no could-haves, should-haves, or shouldn’t-haves allowed here.)
Step 3 - What Holds Me Steady:
If what remains is still fearful and overwhelming, I write down anything that serves as an anchor within the anxiety storm I’m feeling. It could be scripture, someone who is currently in my corner, ongoing research, access to a new drug, or the ways I’m now doing my best to protect myself and/or my loved ones from the danger.
Step 4 - Rewrite the story:
I rewrite the fear as it now stands as fact with what anchors, courage, or protection we have witnessed.
I make sure not to invalidate my fear. The fear we feel is genuine and often meant to be protective. And those fears often do return. But, I find comfort knowing I have the power to rewrite my fear into something strong and courageous in the moment. Or, at the very least, I can find comfort in the fact that my courage, faith, and fortitude are bigger than my fear.
Ultimately, I experience fear, but I don’t live for it, and my family doesn’t live in it.
Sara, I like this idea of “Facts Over Fear.” A lot of caregiving can be spent worrying about what might happen next. I like that you give yourself permission to feel the fear first, but then come back to what is actually true in that moment. That feels like a good way to keep fear from taking over.
In the depths of worry, I remember Jo's doc telling something I carry with me today. "Correlation doesn't equal causation." That's been helpful on several occasions when my mind runs. Fear is so persuasive! So easy to fall into.
Rewrite the story!!! BRILLIANT!! I'm adding this step to my reflection.
Sara, gosh, tears and chills! This was so generous of you to also share this beautiful journaling method with us! I'm definitely going to note this process in my journal. As I read through each step, I can remember pouring into my journal on some pretty stark days. The journal has saved my soul on so many levels. I love knowing how you make your way to that redeeming resolve because you ultimately know your truth. But, the path can feel so daunting and scary getting there. It takes such courage to mine for our own resilience. Thank you for sharing your methodology and heart here with us, Sara. Funny story about our shirts for bell ringing day, I had special ones made and they didn't come on time...so we had to rally. And with everything that came before...who cared. We didn't And it sorta lended a better time stamp on where we were in that moment, anyway. The Goonies thing was and is absolutely our family's purpose statement.
I’m so happy it resonated for you and I pray it serves you well.
“Mining for our own resilience” is a phrase I will definitely start internalizing. I love that. Resilience is an action. We often think it just comes to us. Thank you for sharing your heart!
Sara, I'm an avid journaler too. I like this prompts! I have found writing out my fears is also helpful. Sometimes I do 2-way journaling, in which I write out my fears, especially about my daughter, and also my anger, grief, and confusion. Then I pause and try to listen for God's response. Even though it also feels a bit corny and humbling (who am I to know what God might be saying?), I often find that calming wisdom comes out of my pen... and I know it's not coming from my anxious self! Then I go back and re-read those words later. I love what you said about experiencing fear but not living for it or in it.
Beautiful! We seem like kindred journaling spirits!
haha yes Sara!
Thank you for hosting today's discussion and sharing these vulnerable truths with us, Mary Beth. I love that photo of your gorgeous family.
In the darkest moments, the piercing, bittersweet joy moments and during respite - music is my balm and bypasses the need for words when I can't find them. It's why I've a long list of 'go to playlists'. For me, I need to practice mindfulness to anchor me into the now, given all that's passed and what I know is inevitable. Hope and curiosity lift me in the 'now', and they in turn push me to create content for Carer Mentor and connect with others. Feeling connected and not alone is so important.
Victoria, I can relate to what you said about music. It has a way of helping me, especially when I start to feel sad. I also agree that connection is important and having people who understand makes caregiving feel less lonely.
That's beautiful, Victoria - both music and content creation anchor us to community and creativity. I am with you in both. I've been practicing mindfulness more in the past year as well, although it's newer for me.
There are guided online courses that have helped me over the years - it was how I was properly introduced to the concept and then curiously pursued learning more about it e.g. Thich Nhat Hanh's books.
This is a new version of the older course I took" https://www.monash.edu/study/courses/find-a-course/mindfulness-for-wellbeing-and-peak-performance-pda1036?international=true
Mmm, I love this, Victoria. This is the nut…finding our “presence” despite all the things is so healing. I appreciate your friendship and your generous work so much, my friend💛
To answer your question Mary Beth… oh man here we go…
Caregiving has taught me that coping is less about eliminating fear and more about learning to live alongside it. The possibility of another hospital stay, another setback, or another sleepless night never disappears, but I’ve learned not to let anticipation steal today’s joy.
Writing has become my refuge, giving shape to emotions that otherwise feel too heavy to carry. For me, my poetry reminds me that even pain can be transformed into something meaningful.
I’ve also learned to celebrate ordinary victories because they are never ordinary to a caregiver. In the aftermath of crises, I return to routines, faith, humor, music, and the simple act of being fully present with my son Bray Bray instead of going down the rabbit hole of what might happen next.
Recovery, for me, isn’t forgetting what happened; it’s trusting that whatever is thrown our way, we’ve already proven we can walk through hard things together… one day, one breath, and one act of love at a time.
Bray Bray has taught me to choose presence over perfection, and for that I will always be grateful.
Chris, I like what you said about trying not to let fear take over, because it's easy as a caregiver to worry about what might happen next. I also agree that the small, everyday moments can mean a lot.
Thanks Denise!
I love the reminder to celebrate ordinary victories. So important!
Thanks Sara!
I love how you named that we don't eliminate fear, but learn to live with it. If we tried to eliminate it m we would be always moving towards something unattainable. It is important to remember one day at a time, one breath at a time.
Love that Amy! Sometimes, when things get tough, I think about taking one day at a time, and take deep breaths when I need them.
Yessssss thank you Amy!
Lovely, Chris! It is gratifying and also a bit lonely sometimes to celebrate ordinary victories that wouldn't be a big deal to the average parent, but they are a big deal to me and my husband. Yet celebrating them together brings so much joy. I hear resilience in both what Mary Beth wrote and what you wrote - we didn't ask for these challenges but they have shaped us and taught us about our own inner strength.
Agreed, thanks for sharing Serena!
And you write so beautifully, Chris. So grateful to be able to read your words and feel a tethered connection. An understanding. Thank you for sharing how your mindset has evolved and how it carries you everyday. I have found a similar shift in myself. It’s helpful remaining present and let go of the grasping kind of feeling.
Thank you my friend!
Beautiful, Chris. I hear you. xo
Thanks so much Victoria!