Making Friends from Behind the Window with Claire McMurray

Hello Brave Friends! This is story episode #178. And it features one of the many powerful stories we showcase in our first ever Brave Together book! It’s an anthology of stories shared courageously by our community of moms and it’s called Becoming Brave Together: heroic, extraordinary caregiving stories from mothers hidden in plain sight. It is available now and the link to find it is in the show notes, so go get yourself and everybody you know a copy!

Today’s story is from Claire McMurray whose daughter was diagnosed with a rare genetic disorder called Rett Syndrome. The story she tells is a beautiful articulation of the ache we feel as parents when our not so typical kids struggle to make friends. 

Welcome to today's story episode: Behind the Window 

Claire McMurray Ph.D. holds a doctorate from Yale and worked as an academic before she left the workforce to care for her youngest daughter. She has degrees in French and German and lived in both France and Germany. She loves to read, write, run, and hunt for treasures in thrift stores. She runs a blog called I Don't Know How You Do It, has had articles published on parenting sites and in literary magazines, and has won several writing contests for her creative nonfiction.

Find Claire’s Website with her blog for parents of children with differences, disabilities, and diagnoses here.

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Transcript

Brave Together Podcast_Ep 178_Story_Claire McMurray

Claire McMurray: [00:00:00] How they're not really immersed always in life that's going on around them or, you know, friendships or school or whatever it is. And there's that ache again, as parents, when we see our children with those barriers and not really able to just jump in, like maybe our typically developing kids can.

Jessica Patay: Hi, Brave Friends. This is story episode number 178, and it features one of the many powerful stories we feature every week. In our first ever Brave Together book, it's an anthology of stories shared courageously by our community of moms. And it's called Becoming Brave Together. Heroic, extraordinary caregiving stories from mothers hidden in plain sight.

Jessica Patay: It is available now and the link to find it is in the show notes. So please go get yourself a copy and buy an extra one for a friend. Today's story is [00:01:00] from Dr. Claire McMurray, whose daughter was diagnosed with a rare genetic disorder called Rett syndrome. It's a beautiful articulation of the ache we feel as parents when our not so difficult kids struggle to make friends.

Jessica Patay: Welcome to today's story episode behind the window.

Claire McMurray: My youngest daughter, JJ peered out our front window, a paper crown perched on top of her blonde head. She had been staring at the front yard for the past 20 minutes and showed no signs of stopping. Her in home helper Amy, crouched by JJ's wheelchair, and sighed. Are you sure you don't want to play a game while we wait?

Claire McMurray: They aren't coming for a while. JJ shook her head no, eyes still glued to the window. Amy gave me a rueful smile as I scurried past, carrying candles, matches, and a plate of cupcakes. JJ had chosen not to have a birthday cake this year, so [00:02:00] we were going to put candles on top of a cupcake instead. J. J. was so focused because this year's birthday would be different.

Claire McMurray: Before now, she had only celebrated with the adults in our family. But for her fifth birthday, I wanted her to enjoy her first proper friend party. So I had invited some of the neighbor children to our house. Ten children lived on our cul de sac, so we never lacked for social opportunities. But even though it felt like our doorbell rang non stop, the child on the other side of the door always asked for JJ's eight year old sister, Roro.

Claire McMurray: JJ would have to watch time and time again as her sister threw on her shoes, flew out the door, and disappeared outside to play. I had always done my best to include JJ in the social scene, taking her outside in her stroller whenever the weather and her therapy schedule permitted. Click. The neighbors and their children were certainly friendly to her, giving her waves and smiles as she passed by.

Claire McMurray: But then things would stall out after that. JJ's rare syndrome had robbed her of the ability to speak or use her [00:03:00] hands, so there wasn't much she could do or say in return. I had grown increasingly tired of these aborted social interactions, and of JJ's continued disappointment. But today, on her birthday, JJ would finally be at the center, rather than the periphery, of our neighborhood's social scene.

Claire McMurray: It would be a day when the knocks on the door, games, songs, and shouts of laughter would be for her and her alone. At least, that had been the plan. I wish I could say that JJ had the fifth birthday of her dreams. That she played and laughed and soaked up all the attention. But my daughter didn't make friends or create fond memories or even have a good time that day.

Claire McMurray: Instead, she choked on her cupcake and wilted under the noise and chaos created by the other children. After 15 minutes of this, she showed us that she needed a break. This is how she ended up in her bedroom watching her light globe cast shapes across the ceiling while the other children played [00:04:00] without her.

Claire McMurray: That night, as my husband and I lay next to each other in bed, we talked about J. J. 's birthday celebration. A few minutes into the conversation, J. J. said, My voice cracked, and tears began to stream down my cheeks. After the party ended, I managed to power through the rest of the day without too much difficulty.

Claire McMurray: But now, in the quiet, with my husband's warm hand squeezing mine, I realized just how much JJ's party had shaken me. I was haunted by the vision of her before the party. Staring out the window, crown on her head, waiting impatiently for her special time to begin. She was always doing that, hoping, dreaming, wanting, and waiting.

Claire McMurray: When, I wondered, would she ever be allowed to stop? Was she always going to be looking at life through a window? Separated from the excitement and wonder of childhood by a thick pane of glass, a wave of grief engulfed me. And soon I was sobbing, not just for JJ, [00:05:00] but for all the children stuck behind life's windows.

Claire McMurray: The children whose unlucky circumstances, mutated genes or emotional turmoil made it difficult, if not impossible to create and maintain friendships. Some like my daughter were prisoners of their own bodies. Trapped by silence or at the mercy of their own delicate immune systems. Others were hampered by powerful emotions, uncontrollable behaviors, or difficulty interpreting social cues.

Claire McMurray: But whatever the issue, the result was always the same. Isolation and a sense of otherness and difference. After my late night sob fest, I decided I needed to push JJ's party to the back of my mind. There was no use dwelling on it, because it made me feel powerless and heartbroken every time I thought about it.

Claire McMurray: Besides, my family had more positive things to focus on. JJ was finally making progress with her eye gaze device, and her communication skills were blossoming. A couple of months after her birthday, One of [00:06:00] JJ's therapists had the clever idea of pairing a board game with an individually created page on JJ's eye gaze device.

Claire McMurray: Now my daughter could challenge others to a game of pretty pretty princess and make comments like my turn no cheating And I'm going to win. JJ began by playing her new board game with family members and her adult helpers She had always liked princesses, sparkles, and dressing up, so the game ticked all her boxes.

Claire McMurray: She enjoyed putting on the game's plastic jewelry and being the first to collect all the pieces in her chosen color. I loved watching her play, but couldn't shake the feeling that something was missing. I kept thinking how much more fun the game would be if she had children other than her sister to play it with.

Claire McMurray: Then one hot summer day, I Brittany, the five year old girl who lived next door, showed up on our front porch. She looked up at me hopefully and asked if Roro would like to come out and play. I shook my head and told her that my oldest daughter was away. visiting her grandparents for the week. Then I [00:07:00] had an idea.

Claire McMurray: But would you like to come in and play with JJ instead? I asked her, you two could play a princess game. Britney thought for a moment, then nodded. Yeah, that sounds okay. The first game the girls played together was awkward. We set it up outside on our patio, and within minutes, JJ became both overheated and overwhelmed.

Claire McMurray: Soon she was leaning her head to the side and closing her eyes. I think that's enough, I told Brittany, JJ's getting tired, it's time for you to go home. Somehow I managed to get the words out, despite the lump of disappointment lodged deep in my throat. Then, later that afternoon, something unexpected happened.

Claire McMurray: Brittany came back. Can I play the game again? She asked me, her eyes wide and begging. I looked over at JJ, who was squealing with delight and kicking her legs in her wheelchair. Clearly, she was ready for another game, too. So I told Brittany yes and ushered her inside. This time things went much better. JJ stayed bright eyed and alert, using her [00:08:00] talker to warn Brittany against cheating and declaring that she was going to win, which she promptly did.

Claire McMurray: Later that night, as I was cooking dinner, JJ went to the board game icon on her talker. Then she navigated to feelings. Felt nervous. Felt happy, she told me. At first you felt nervous about playing with Brittany, but then you felt happy? Mm hmm. I translated, JJ nodded vigorously, then navigated to another icon, LIKED.

Claire McMurray: The next time Brittany came over, she wasn't alone. She brought her seven year old brother Colin with her. The three children played the princess game together, with Colin gamely donning the plastic necklaces, bracelets, crown, and earrings. After that, our doorbell rang even more often than it had before.

Claire McMurray: When I answered, it was usually Britney. Her hair a tangled mess and her shoes mismatched. Or Colin dressed in his favorite Sonic the Hedgehog costume. At times, the children still asked to play with Roro, but now, just as often, they asked for JJ. [00:09:00] Sometimes Colin and Britney would play together while JJ watched on from her chair.

Claire McMurray: Other times, Britney colored pictures or laid in bed next to JJ, The girls watch dance videos on J's eye gaze device. A few times. Colin just stared into J's eyes until she burst into fits of giggles. Before I had jj, I thought friendship between children had to look a certain way. I imagine my daughters passing notes back and forth during class.

Claire McMurray: making pinky swears with their friends, and playing games of hide and seek long into the night. But after the disappointment of JJ's birthday party, and the unexpected joy of the princess game, I took a sledgehammer to those expectations. Then I rebuilt them, piece by piece. I now view childhood friendships differently.

Claire McMurray: If they happen naturally for JJ, I will consider it one of the universe's unexpected gifts. But if I sometimes have to nudge her relationships along, like I did with Brittany and Colin, I'm not going to feel ashamed of it. [00:10:00] JJ's friendships don't have to begin a certain way, and they don't have to consist of traditional friendship activities either.

Claire McMurray: I'm learning that sometimes it's enough to play next to a child, rather than with them. To lie side by side with a person who understands the value of calm and quiet. To sit on the sidelines as long as you still enjoy the view. Parents of children who don't conform to society's expectations can't always expect those children's friendships to conform either.

Claire McMurray: But this doesn't have to be limiting. It can also be freeing. JJ's friend could be the school aide who eats lunch across from her, the bus driver who always has a smile for her. Or the classmate who remembers to include her in every conversation. With time and distance, I have realized something else about JJ's friendships, thanks to that day of the party.

Claire McMurray: Even though my daughter was gazing out the window, longing for the company of other children, she wasn't sitting there alone. Instead, she had some of her most [00:11:00] beloved people beside her. Sometimes I think the best thing we parents can do for our children is what any true friend would do. We can keep them company while they wait.

Jessica Patay: Claire McMurray's writing is such a gift to our community. In our conversation she talks about how she approaches writing, the devices her daughter uses to communicate, and more about redefining what friendships look like for her spunky, rare daughter. I can't wait for you to hear what she has to share.

Jessica Patay: Hi Claire. Welcome to Brave Together podcast. I'm so glad that you are here and I'm so glad that you submitted a story for our very first book anthology. 

Claire McMurray: Thank you for having me. I'm excited. So Claire, how long have you been writing? I've kind of always been a writer. Yeah. Uh, [00:12:00] even as a child and then I had like a, creative writing scholarship in college, but then I was really in academia for a long time.

Claire McMurray: So that piece fell away, sadly, a little bit. I just did a lot of academic writing. I was at a university as a graduate writing specialist. So I helped graduate students with their theses and dissertations and that was kind of its own thing. But as many of us, I had to step away from my career when my daughter had her diagnosis.

Claire McMurray: And that was sad to me. I really liked being in the writing world. So I switched pretty quickly. I knew I needed something for myself and something that was intellectually stimulating. So I continued with the writing, but kind of went back to the creative nonfiction and personal essays and started my own blog.

Claire McMurray: So kind of just as a way to reach other parents and a way to process. And I've been doing that for a couple of years now and having publications now and then in different parenting magazines and literary magazines and. Some contests, but the blog, most of all, really. 

Jessica Patay: Well, congrats. [00:13:00] And I know that when you put yourself out there, it, it breeds connections.

Jessica Patay: And it also brings so much validation to other moms. So thank you. 

Claire McMurray: Yeah, it is a nice way to connect. I've actually connected to other writers as well. It's really cool to meet other parents who are writers through just different means. And, um, One of the most special things is I've had a writing group, a critique group for the last several years and it's four of us and we meet every week and they're just really dear friends.

Claire McMurray: Now, there's some special women and one of them actually does have a son, a grown son with autism. And so it's really nice to have that connection and just, you know, everyone thinks it's a pretty solitary thing, but really writing should connect you to other people and make you feel like you're part of the world.

Jessica Patay: I agree. I agree. I loved being in writing groups. I felt like it was part therapy, part writing, part book club. It was just so it was rich. It was a really rich time together. I enjoyed it. I miss it. So Claire, tell our [00:14:00] listeners a little bit about your family story and your journey or your child's journey.

Claire McMurray: I'm married. I have a very Wonderful supportive husband and a typically developing nine year old. And then my youngest daughter is the one with the diagnosis. She just turned six, just had her sixth birthday just a little bit ago. And she was misdiagnosed for several years with autism. Until we found out that she actually has a rare genetic disorder called Rett syndrome.

Claire McMurray: And it's very common for people with Rett to either be misdiagnosed with cerebral palsy or autism. So it took a while to get the correct diagnosis, which I know a lot of us have a long winding path to that diagnosis if we're lucky enough to have one at all. And that was a big shock. You know, you think you have one thing and then it doesn't quite make sense and then it's something else.

Claire McMurray: And it's a pretty. You know, severe syndrome. And so it was, it was a shock and it was, there was a lot of grief when we got in and it was out of the blue. Just a phone call, you know, one day from a [00:15:00] neurologist. So it hits pretty hard and early. So she's lost her hand use, which is pretty much across the board for people with Rett syndrome.

Claire McMurray: And, Lost her words. She's nonverbal and lost her ability to walk on her own and has a feeding tube now. But, you know, I like to think about the things she does have as well, you know, not just all the, you know, deficiencies. She's really got a lot going for her that I think people kind of don't realize or forget about.

Claire McMurray: She can walk on her own. She loves to walk around if we are not on her own. If, if we hold her hands with assistance, she can. And I think one of the neatest things This last year, she's gotten a speech device. So a lot of people with Rett syndrome have eye gaze devices that they activate with their eye gaze, with their eyes.

Claire McMurray: And this has just opened up a whole new world for her. She's just loving it. She's really, she's really bright. She's teaching herself how to spell and she loves to listen to books and we've been able to see her personality shine through. So she's. She plays a lot of tricks. She's very spicy. So she has all [00:16:00] kinds of, she has a new helper.

Claire McMurray: She'll haze them a little bit and just play lots of tricks and joke makes people laugh a lot, but also very sweet and tells us she loves us. So that's been a really nice. piece of things as to kind of get that communication back in this last year. And there's also been some new developments in the world of, of Rett syndrome.

Claire McMurray: We've had a new drug that was just like the first ever drug that was approved by the FDA this year. So she's gotten to, to start that. And so we've seen some of her like sounds and words come back and she's been able to walk for longer distances. So that's been a really hopeful thing. And there's a couple of gene therapy trials that have just started this year.

Claire McMurray: So whole community is. having a lot more hope than it has really in the last few decades. So that's been a nice piece of our year this year too. 

Jessica Patay: That's a huge breakthrough. I mean, you hear of that. I know in my world, we've heard of that for, you know, 20 years and there are some things on the horizon that are going [00:17:00] to help.

Jessica Patay: But I'm so happy that you are six years into your journey. Well, I don't know what date you got, your daughter got diagnosed, but you know, your daughter is six. I'm glad she's six. And there's an intervention that she is able to try and that you're seeing some positive outcomes. That's, that's great.

Jessica Patay: Wonderful. That is heartwarming. That is hopeful. I'm so, so glad. 

Claire McMurray: Yeah, it, it is for our whole community. And I think for a lot of other communities too, actually, there's, there's a woman in our connection circle who was telling us that her son's community is kind of watching how this, It's drug effects, but people with RET because they have a lot of the same issues with apraxia and motor issues and neurological issues.

Claire McMurray: So it hadn't occurred to me before that, you know, this could go beyond just our community and work for several other communities and different syndromes and disorders. So it's just kind of hopeful all the way around really. 

Jessica Patay: Oh, congrats, congrats. And I wanted to, um, circle back as you were sharing [00:18:00] about your daughter and her having the eye gaze device tips.

Jessica Patay: Enable her to communicate. How did that feel as a mom way back when it first began? So maybe in the last year, how did that feel for you to be able to know what she was thinking or feeling or what she wanted? You know, what was, what did she want? What was like the first thing that she was able to say through the device?

Claire McMurray: Not sure what the first, first thing we started just with. So there's a screen and we started with four buttons and she didn't really see a lot of value in that. We went up to 15 and then she was just kind of hitting all the buttons all over. I, I think the most, The thing that struck me the most that she said right away, and she was already kind of stringing different words together.

Claire McMurray: She said, want stop baby. And I said, does that mean you want to stop being treated like a baby? And she was like, yes, yes, yes. So that was really like, I mean, I mean, I could tell, you know, you have a lot of instincts as a mom. You can kind of tell what your child is [00:19:00] thinking. And I've been feeling for a while, like, you know, your therapies are maybe too easy or you don't really like being treated this way.

Claire McMurray: And she was like, Was able to advocate for herself. So while she did say, I love you. And that was a really special moment. I feel like that other moment was almost more monumental. And I think that one of the best things about the device has been both that she can kind of tell us what's wrong, you know, physically, if she's got some pain or whatever, but also she can advocate for herself and she's.

Claire McMurray: Really excellent with that, with her device, she'll tell us when she wants privacy or she wants to be included. The rest of us are having drinks at a party and she was like, give me a drink, you know, include me. So she has an, I want to be included button and we've had to move her bedroom downstairs. Cause it's hard to go up and down the stairs.

Claire McMurray: And she said, um, privacy bedroom. Like I want privacy in my bedroom. So we put up some, some curtains. So it's been a nice, uh, Like window into her mind I think, and seeing what she wants and needs [00:20:00] and deserves. 

Jessica Patay: Hi friends, I just want to take a quick second to share big, big news. We have a matching donor.

Jessica Patay: One of our supporters has pledged to give up to 15, 000 in matching funds for all new donors and donors. Or new sponsors for our annual 5k fundraiser. A sponsor can be an individual, a family, or a business. Check the link in the show notes. If you want to be a sponsor or a donator for our annual 5k fundraiser, the 5k is not until October when you can donate.

Jessica Patay: But we are recruiting sponsors now. I am so happy for you and I'm so happy for her that she can advocate for herself, that she can share what she thinks or what she wants. And I mean, that would be a title of a great piece or maybe you've already written it, you know, want stop baby. Did I quote it back correctly?

Jessica Patay: Like [00:21:00] that could be a title of a book. I mean, how incredible that she's able to communicate with you and how wonderful for you to get that, that insight and that, just that knowing, because I can only imagine for parents who have kids who are nonverbal, the ache of wanting to know, like, what do you think and what do you feel?

Jessica Patay: And, and. And not being able to have that beautiful exchange, it would be really, really hard. For 

Claire McMurray: sure, and we had that for years, like up until this year when she was five. She, for a while, had nothing. And then we had, I taught her to answer yes, no questions with potato, bribing her with potato chips. To look at me or look away for yes and no.

Claire McMurray: And that itself just opened up a whole world. And then we had, she can kind of hit things a little bit with her hands. So we had some recorded buttons that she could hit, but you know, there was just still a lot that was, it was unknown. In fact, I wrote an essay about that, but when a local contest, it was, I think it was called the, like the [00:22:00] theme was the unknown, and I just wrote about how much I didn't know about her.

Claire McMurray: And that was before the device. And then, yes, we got it. And it was just like this. This flood, um, and it is a double edged sword because she has told me some things that are, you know, kind of sad. And she tells me she feels different and lonely sometimes and wishes she could use her hands to color like other kids, you know, so like, well, how can we get you to color with your eyes on your device, you know, but it's mostly been really positive and just, Just to know what's in her mind, because yeah, I've been on the other side and I really feel for parents that just, you know, there's a whole world inside all of our kids and not all of us get to, you know, know what that world is.

Claire McMurray: So, yeah, it's been a big thing, 

Jessica Patay: right? And I know nothing about devices. Um, so forgive any dumb questions. You know, whose idea was it? And how hard is it to get or is it easy to get? Is it out of pocket? Does insurance cover it? Is it a fight? Do you wish somebody would have said something sooner so [00:23:00] that you could have had access to something like this sooner?

Jessica Patay: Like, tell me about that. 

Claire McMurray: And I'll say if anybody's interested, I'm happy to, to tell them more about it. And we've learned a lot along the way, a lot of. People with Rett syndrome do use eye gaze devices. So we did find out right away once we were diagnosed. And one of the most wonderful things was getting a phone call from another parent who worked for the International Rett Syndrome Foundation.

Claire McMurray: And she, I remember her telling me like, our kids are so smart. My kid is, you know, reading and writing and doing math with her device. And it was just this big revelation. And a lot of the parents said, Really supported me and telling me if she's in there. She's in there It's kind of the motto of our community really so a lot of it was their support But it was a long journey like to build up those just linguistic skills You have to have certain skills before you can really use a device And then yes getting a device is a lot Through insurance getting it to cover it because they really like to deny they're very expensive And there's a couple kinds and you have to trial them also [00:24:00] it's like you know.

Claire McMurray: Months and months and months of that, but I think we all try to support each other as parents because it's not a world that most people know about. So if you have other parents kind of sharing their tips or their insurance appeal letters and things, that really makes it go a lot easier. 

Jessica Patay: Is there something that you wish you knew at the beginning when you found out that getting the Eye Gaze device would be helpful?

Jessica Patay: And is there something that you wish you knew? Somebody should have said this to me that would have helped. 

Claire McMurray: Yeah, I feel like there was a lot of those things. I mean, we just found out this week we had one of those. I think I hadn't realized a lot of people with Rett syndrome have apraxia, so their mind can't really coordinate.

Claire McMurray: Their mind knows what their body wants to do, but their body kind of won't do it. It doesn't coordinate very well. And I didn't realize that that applies to eye gaze and to using the device as well. And we found out that the more Pressure there is put on the kid to demonstrate knowledge or to like answer questions at school.

Claire McMurray: You know, [00:25:00] what color is this and what letter is that? Then that causes more apraxia and more anxiety. And so there's less coordination. We've been hearing from the school. Like she doesn't do what she does at home. She doesn't answer the questions. She can't show her knowledge. And I know she knows all kinds of stuff because she does it at home.

Claire McMurray: So yeah, it's just a world that's kind of always evolving and it's, you know, kind of a small world. So I think it's not something that parents know anything about before they start down this journey. So we're still learning quite a lot about how alternative and augmentative communication works, but it's a really cool world too.

Claire McMurray: There's just some amazing stuff out there that I had no idea about. 

Jessica Patay: Well, that's so good to hear. That is so good to hear. Let's talk about your story. So beautifully written. And there are definitely things that I underlined that stood out to me. Um, how did you choose this story for the anthology? 

Claire McMurray: You know, I think [00:26:00] I, I chose it cause I had been, it was kind of happening in real time when the call came out for stories.

Claire McMurray: And so it'd been something I was thinking about writing about anyway. It's, um. It's about friendship, about how our children create friendships and how they look different and how we have to kind of change our expectations about what makes up a friendship. And what I was describing in the story was kind of happening at that time.

Claire McMurray: She was creating some connections with some of the neighbor children next door. And as it was happening, it just felt so special that I thought, you know, I need to write about this at some point. And so I figured, you know, that was as good a point as any to, you know, 

Jessica Patay: Well, you know, this is going to resonate because it's definitely something that tugs on all of our heartstrings as moms or as parents, because we want so badly for our children who struggle in all these different ways to have friends and to have real friends that, you know, somebody else that really genuinely takes an interest.

Jessica Patay: [00:27:00] It's all we want. It's just for our children to have, like, at least one real. Friend. And so you captured an ache that mother's experience for sure. Claire. So you say I was haunted by the vision of her before the party, staring out the window crown on her head, waiting impatiently for her special time to begin.

Jessica Patay: She was always doing that, hoping, dreaming, wanting, and waiting. And it, it gets me choked up just even Reading it back to you because our kids experience that even when they're not even able to say that. I know Ryan Experiences that at age 20. He can't say it. It comes out Differently it comes out in a way where I'm like, oh, I know what this is about You know where he might be complaining about his siblings in some way and it's really about that He wishes he could have the social time and the social life that they 

Claire McMurray: Yes, yeah, I think the word [00:28:00] ache is the right one.

Claire McMurray: I think that it's It's something that they ache for, you know, it's a natural thing to want human connection and to, to bond with people. And we want that for them. And my daughters have the same thing. My, you know, my youngest JJ has to watch her sister come in and out and play with all the friends and go on sleepovers.

Claire McMurray: And she doesn't have that. And now that she's good with her device and advocating for herself, she, she tells us how mad she is about it. But I think it's helped me to. Just frame it differently, because I think we tend to think friends have to be Someone their age, it has to be a peer, and they have to have interests in common, and certain activities, and if it doesn't fit into that category, it's not a true friendship.

Claire McMurray: But to me, I've had to broaden it and think of it as just a connection. Like, my daughter has deep connections with people. People, some of her helpers, especially to just love her, they cuddle a lot. They, they do her [00:29:00] hair. She sends them messages when they're sick. She's wants to make cards for them. And I mean, I think that's a true friendship and it's not, you know, based on loving unicorns and glitter or whatever it is, but it's based on connecting and really loving each other.

Claire McMurray: And. I could see it as sad that she's with these adults or I could see it as here's someone who really cares for her and like you said is able to give her the attention and like she just needs quiet sometimes she gets overwhelmed she likes to have someone who gives her time to respond and I think that's she gets a lot of what she needs from the people in her life it's just maybe not from You The kids as much, 

Jessica Patay: right?

Jessica Patay: Well, I thank you for expanding our expectation or understanding of what friendship and connection can mean, because I think we can get locked in as parents for it to look a certain way. And yet there are [00:30:00] other people. I mean, I'm just, you know, as you're talking, I'm thinking about, you know, some of the caregivers in Ryan's life who love him dearly and he loves them dearly.

Jessica Patay: And there is a special connection. And who am I to minimize that feeds his soul in some way. Maybe it's not another 20 year old guy or girl, but it's still feeds that. Need for social time and connection and friendship and laughter and playing. Yeah, and 

Claire McMurray: feeling dignity and feeling respected and cared for.

Claire McMurray: And I think, yeah, I mean, my daughter, for example, just the other day, she was. They have to answer a morning question every morning in kindergarten, and they asked, who would you like to be friends with? And she said, Mr. Brewer, which is the name of her principal. She loves the principal. He loves her. And he was like, that, that just made my day.

Claire McMurray: And she, um, she completed a reading challenge over the weekend. Winter break. And so she won the entrance [00:31:00] into a hot chocolate party with the principal. And they sent a picture of her with him and with her teacher at the party. And was she with the other kids? No, she wasn't, but she was with them and she had a huge smile on her face.

Claire McMurray: And so they, they did too. And, you know, to me, that's friendship. Like she, she got what she wanted out of that. She got some connections and she got to feel valued. So I see that as a win. 

Jessica Patay: That is a win. That is a beautiful win. I love how you said the phrase, children stuck behind life's windows. Can you just share that with our listeners a little bit more?

Jessica Patay: Because obviously it's more than just that one incident. you know, in the story where your daughter was waiting and looking out the window. So tell us more about that. 

Claire McMurray: Just a metaphor, how they're kind of, you know, separated or how they're not really immersed always in life that's going on around them or, you know, friendships or school or whatever [00:32:00] it is.

Claire McMurray: I feel like there's a lot of barriers sometimes. And for us, it's, you know, communication and it's mobility and it's, You know, we're worried about her being systems. So sometimes we don't go anywhere in the winter, you know, and I know there's a lot of other families like that too, but it could be behavioral issues, emotional turmoil, whatever it is, it's that extra layer that makes it hard to just really be part of what's going on.

Claire McMurray: And I think. There's that ache again as parents when we see our children with those barriers and not really able to just jump in like maybe our typically developing kids can. That's kind of what I meant by that. 

Jessica Patay: You captured it well, Claire. You really, really did. What is something that you would hope to see would come with your writing?

Jessica Patay: Or is your writing merely cathartic and therapeutic for you and obviously for your readers and other mothers or parents who read it and resonate with it? But is there any big dream [00:33:00] with your writing? Or is there cultural change you would love to ignite through your writing? 

Claire McMurray: You know, I've been thinking about that a lot for the last few years, what my goals are.

Claire McMurray: And I think I've kind of decided that there are so many different goals for anybody who's wanting to write and it kind of changes, you know, sometimes it feels good just to process things and I write just to process things. So I can kind of make sense. And it's very empowering to take something that happened to you.

Claire McMurray: That's maybe senseless and turn it into, you know, you're in charge of the narrative and you make sense of it. So there's that, and there's also just, like we said, connections, connecting with people, sometimes it's nice to just raise awareness. So I've had some pieces that have been published in parenting magazines that maybe reach some people who don't have children with disabilities.

Claire McMurray: And I feel like it's nice for them to get a piece of our life and see what it's like, you know, it can be validating just to have something published as well. It feels good when I have had to step away from my career. And I think most of all, though, I really like just writing because. [00:34:00] I get to show the world what my daughter's like.

Claire McMurray: She's a really cool person who can talk with her eyes, you know, and she's just plays tricks. And I think a lot of people have not met someone like her and don't just are not familiar with that. So I don't know that I have any particular goals. I think I just like cycling between those, just kind of seeing what I'm in the mood for.

Claire McMurray: And sometimes the blog is nice because I can just, I'm not trying to get anyone else to publish or Convince an editor. I'm just kind of can say what I want so I can be really honest on there. So I like that too. It's kind of what I'm in the mood for, I guess. 

Jessica Patay: I think that's perfect. I think it's healing just to be so honest, really.

Jessica Patay: It does something for us and it does something for others. 

Claire McMurray: Yeah, yeah, I think so. And I wanted to do something that was a little different for my blog. So I, I didn't organize it like just around our lives or around the dates. It's kind of around different themes, like, you know, how our, our views of our own bodies change or about career, or I just wrote one about sympathy, pity, compassion, and, um, [00:35:00] empathy, you know?

Claire McMurray: So I just wanted to write something that was, Not already out there. I feel like we have such a complicated life and we're all different on a different journey. And so sometimes having just those listicles out there or just the one size fits all, or just a few, like a meme or, you know, a few bullet points, it's not going to really get at, you know, the deep parts of our lives and what we're really thinking about and living.

Claire McMurray: So I just wanted to write something that maybe wasn't already out there too. Cause there's a lot of listicles and things out there. 

Jessica Patay: Very, very true. 

Claire McMurray: So Claire, where can everybody find your blog? Um, it's called, I don't know how you do it. So it's at, I don't know how you do it. org. Okay. 

Jessica Patay: Fantastic. And any, anywhere else that they follow you, are you on Instagram as well?

Claire McMurray: I, I personally am, but not the, not the blog, but it is on Facebook. So you can also look for it under the same name on Facebook. Yeah. 

Jessica Patay: Okay. Great. All right. Well, Claire, thank you so much. Thank you for [00:36:00] your time. And. for this story and I, I can't wait for our anthology to get into the hands of so many caregivers.

Jessica Patay: So thank you for contributing to this dream of mine to put this out in the world. Thank 

Claire McMurray: you for putting it together. I'm excited too. I think it's going to have, I can't wait to read all the other stories too. I'm excited about that.

Jessica Patay: Thanks so much for listening today. Do us a favor and leave us a review and a rating so that this podcast can get into the ears and the hearts of more and more moms. Did you know that Brave Together podcast is an extension of our nonprofit organization called We Are Brave Together? We are brave together serves an international community of caregiving moms by offering support groups that are virtual and in person educational resources and low cost weekend retreats.

Jessica Patay: To join us today, go to wearebravetogether. [00:37:00] org our support and sisterhood. I'll wait. You brave together. Podcast is for entertainment and education purposes only, and it's not a substitute and should not be relied on for medical or mental health advice. The use of any content on our podcast, LinkedIn, our show notes, or on our website is to be done at your own personal.

Jessica Patay: risk. Please seek out a professional to assess your own medical or mental health concerns because we are all beautifully complex and the content of this podcast is for a broad audience.