May 22, 2023

The Journey AFTER a Non-Fatal Drowning with Annemarie Miller

The Journey AFTER a Non-Fatal Drowning with Annemarie Miller

In this week's episode, Annemarie shares her journey with us about her and her son's life after a non-fatal drowning at the young age of 17 months. Choices make all of the difference and Annemarie speaks openly how her choices each day shaped the life they would live as a family.

In this week's episode, Annemarie shares her journey with us about her and her son's life after a non-fatal drowning at the young age of 17 months. Choices make all of the difference and Annemarie speaks openly how her choices each day shaped the life they would live as a family. 

We hope you enjoy it and let us know what you think.

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Jen Lansink: Annemarie Miller is a positive powerful force in this world. Her determination to dedicate her life to her family and her son Calum after his non fatal drowning when he was 17 months old is a story worth hearing. So today she tells us her story of life after an unthinkable accident. She shares honestly about how guilt could have destroyed her family and her marriage. But that making a choice each day to see things with a different lens made all the difference. Annemarie is funny, real heartfelt and beautiful. And she is my friend. I hope you take a few nuggets away from our chat because I certainly did. As always, I hope you enjoy and let me know what you think. 

JL: I am so excited to introduce you to Annemarie she is one of my friends somewhat new it's been like two years right Annemarie?

Annemarie Miller: Yup.

JL:  And we'll get into how we met later but I just want to introduce you. Okay, so Annemarie Miller is a wife, a mom to six, yes six children, and a grandma otherwise known as me-me to four grandchildren. In partnership with her family, she dedicated the past 16 years to her youngest child, who at 17 months of age survived a drowning accident which causes a profound traumatic brain injury. Through her ongoing search to locate and obtain successful therapies for her son. She gained a wealth of experience training and knowledge. This amazing journey has now led to the creation of her new nonprofits; Project One Cause whose mission is to provide education support and financial resources to families with children affected by non fatal drowning and hypoxic anoxic brain injury. Annemarie there's so much here so I was just like literally overcome with spirit like popping in and being like, 'Oh, are you ready for this conversation?'

AM: It's kind of a big one. Yes, I will say that. 

JL: It is. Annemarie thank you so so much for joining us and being willing to share your story and a lot of the lessons that you've learned along the way with with our listeners. So thank you.

AM: It's my distinct pleasure and my honor to be with you today and to be able to share our story and of course, you've know me for a couple of years so we should have a good time to process. 

JL: We should tell the listeners to hang on to the ...

AM: Absolutely.

JL: So let's talk about your son and the meaning of his name and really the journey that has led you here. 

AM Sure, of course. So we had five children and I was actually doing my at the time I thought my dream job which was working with older adults. I was in the health and holistic wellbeing industry and it was my passion. I basically skipped to work every day and then was just so invested in helping seniors expand their own wellness and well being when I found out that we were having baby number six. And it was like 'Oh, Hello, yes' 

 JL: Hold on let me ask you Do you know how you get babies right? 

AM: Oh, yeah haha, at least six times. I do. Yes. So we're thinking okay, so what are we gonna do about naming this baby? And my father is from Tipperary from Ireland and you know, have that background with my Irish heritage. So we started looking and found some very interesting names. We came across one and Calum is Gaelic, and we thought, well, that's kind of a fun thing to honor my family, my father so we said, Okay, we'll name this new baby Calum. So, interestingly enough Calum's name and Gaelic means heavenly. I'm gonna get a little choked up here. 

JL: I just got shivers, heavenly.

AM: Then we decided to call his middle name Dante, which of course means everlasting. So we have this beautiful baby and I was not you know, in my early 20s When I had this baby. So we had I did have some health challenges with him carrying him a different season of my life, if you will, and it was a lot. So Calum arrived. Of course, the whole family was excited and ecstatic. And he was a very inquisitive baby from day one. And so I think that's kind of where we really got to know Calum's ideas about his life. It's such a tiny little baby because he wanted to do everything all at once. And that stayed true as he got older and of course, being around five other siblings and much older the oldest one was 18 Actually at the time. So he was a little advanced for his age and about 15/16 months he could run and throw a ball and he was talking already and just very curious, to the degree where we were kind of concerned about his ability to undo locks on screen doors and try to go outside and explore on his own so really, a very Dynamo of a baby. And super excited about how smart he was and what his potential was late in 2003, our tradition on a New Year's Eve, because we had teenagers, was to go to a local restaurant in the afternoon on New Year's Eve, and then come home and play games and kind of be off the road when people are out, you know, partying or doing what they're doing. And we didn't want to take those risks with their kids. So that December 31 of 2006. Calum was 17 months, that point in time and we were all getting ready to go out for 4:30pm was our reservation. And we were all in various stages of the house. We had a fence and a gate that was closed and Jacob the next sibling up who was five at the time and Calum, we're playing on the tiny little patio. And it's something that you just know as a mom or as a dad, where there's this weird silence and you know that something is very wrong. So I just came down the hall, my husband and I looked at each other. And it was like, Jacob was in the house getting a drink, and it's like, oh my god, where's Calum? So, we hit that backyard and went around both sides of the house because there was a fence and a gate. They're not even looking into that area. When my husband called to me and I was at the front of the house on the other side and said that he had pulled him out of the pool. And I came over and with all my first aid and CPR training, I was kind of frozen until I just decided I'm just gonna do what I'm told to do. And God's directing me so just started CPR and aspiration poolside. I worked in the town in which I live so I knew the fire department because of working at the retirement community. So it was really hard for them to kind of peel me off of that little body. But they took over. They took him to Pomona Valley Hospital and he was not resuscitated for another 60 minutes. So a total of I think about 70-75 minutes where he was just flatline there was nothing. 

JL: So let's just take a deep breath. I'm crying over here. I've actually tried twice now and I put myself back together. So a lot. 

AM: Yeah, so it's a lot. 

JL: Yeah, no, but Okay, so I think it's really, really important to stress something and then I want you to continue but your pool was locked. There was a gate and there was a fence and that's I mean, I just really want to stress that because we talked about this and did not even look there because we didn't want and it was fenced and it was gated and it wasn't an option. 

AM: No and I think later to just to kind of jump forward a little bit where we had to really think about all of us as parents, as caregivers and our young children. We put our safety protocols in place to put your baby in a car seat in your toddler in a car seat put them in the bathroom, you don't leave them alone. You're just one of you put sunscreen on you that you cut up their grapes, you know, everything like that is how we manage and it just was a very, very terribly unfortunate accident. And I will tell you starting this nonprofit just to give a little backstory away from what I was just talking about kind of a challenge to still just get into it. 

JL: Yeah, I would imagine its hard.

AM: I was a water safety instructor and started teaching swimming lessons to babies when I was 15 and a half and the statistics of what the red cross talk then about between the ages of one and four it was a leading cause of death or disability and children is still true today. No matter with a gate, a fence those pool covers where you see the elephant standing on top of them. You've got alarms going off you have notifications on your phone, you have sensors you can put in your kids pull up with all of those things in place, it still happens because it's just an accident. For whatever reason. That was what, you know, our divine order was if you will, that Calum was to do that. And we were to start our journey with him and and so I just wanted to say that because that's a good point. It's something that interestingly also is our pediatrician said it's the ones that are really smart that seem to get into the most trouble. 

JL: Yes, it's true. You're like dang it. 

AM: Yeah. And we still don't know how he got back there, there's no way to know. 

JL: and we've talked you had child protective services come in and I mean, it was traumatic for you so you have a child that was clinically dead for 70 minutes. Who is resuscitate by the way miracle of all miracles that your town kept working on him? Because I've never heard of that, that they just said we are going to bring this baby back 

AM: Well and curious to that too, because of where I worked at the retirement community called Hillcrest. The chaplain just happened to be on emergency duty at the hospital that night because the hospitals Chaplain had called off sick and she was there and kind of sent the word out. So I think all of these things kind of came into play, if you will, from a spiritual perspective from an emotional the prayer requests went out wide and far too many communities. And I we know with distinction that that is part of the reason why it came you know, was able to be revived and, uh, shortly after that happened, he was very cold. I mean, it was December 31. Our pool water was I think like 42 degrees. It was so ridiculous, cold degree and he was very cold and unfortunately the hospital and it was no slight to Pomona Valley because they saved his life there but they didn't have the protocol in place where they would slowly warm the body up over a few days and keep them in that kind of a hypothermic state. So they warmed him up very quickly. And as a result of that, and aside from the global damage, he also had a huge focal stroke that affected him which we just didn't find out until recently when I was looking over all of his medical records. And I would imagine now we're 16 years out from this incident that nobody was going to talk about that because it seemed kind of minor compared to just keeping him alive at the time. So yeah, it was very interesting to find that out after all these years. 

JL: I'm sure you right back there like whoa, 

AM: it did and then it kind of made sense because the way that over the years with different professionals that we have found through our different modalities have been like wow they see kids who have had non fatal drownings and they look a very specific way. But then he had a different component added in there. Nobody could figure it out. And even I couldn't figure it out that way is that hm, that's really interesting. So now we know what that is. But it just gives more power to the story of the brain and its ability to recover and all the things that we have found along the way to help him do that very thing.

JL: Right. So okay, let's fast forward. And we can go back and talk more about the story because actually, there's some really profound things that we've talked about in the past about the concept of the accident and how people look at you, but I wanted to fast forward really quickly. So tell me about about Calum right now so that we know like he's amazing. Magical. 

AM: He's very magical and he's the profound teacher. He's 17. He still is working on his mobility to try and get to walking. Years ago he did say that even though he was walking by say, I mean typing and he types to communicate much like a lot of autistic children do. It's a very common thing. But he told us that he knew that one day he would get to walk him because he did it at some point. And he knew that was in his brain. So his devotion to his recovery from an internal perspective is really profound to see when I look at what he does every day, and how happy he is and how joyful he is. And I think that's a blessing across all places and time and space. And he doesn't look at himself as having a disability. He doesn't proceed himself as being something other than you know. The amazing person that he is. And that something that he brought back with him when he was resuscitated, I'm sure and we can probably talk about that some other time. But I think the the absolute joy of watching him do things that first of all, we were told he would never achieve, never ever and that's kind of what our we were told no so many times but one of the things that struck me about the no is that he looks at no as he has numerous opportunities now. So no doesn't mean what we know to be No, he's turned no and to numerous opportunities. And he finds problem solving. He uses a manual wheelchair. He's a boss on the iPad, he's done schoolwork, elevated college courses since he was small and just really kind of astounded us in the scope of what he knows, and how he balances his abilities with his functional challenges. So it's spectacular to see him.  I love being with him. It's kind of hard when I've had to travel to be away from him too because his energy is just so positive and he really lights up a room and he sees the best in everyone that interacts with him. So it's just, it's really hard to describe, but he's fantastic.

JL: I know exactly what you're talking about. You know, I have one of those beings. Yes. 

AM: Yes, you do. 

JL: And numerous opportunities,

AM: numerous opportunities. And you'll see on our website, I go into a little bit of that, just because as you know, with Teal, and all the moms that we know together and the ones that we're going to learn about and know in the future you know you have a well no that's that can't be true. See that that's not a possibility. And even if we're in denial because of the grief at the beginning it turned into something else and Calum is actually the the emulates that. You can turn your life into whatever you need to for yourself, but I think too, that was a decision that we made as a family as you and I have talked about that to allow that to happen for him.

JL: Yeah, it's interesting. I'm like, we need to get him on this podcast. Just get some questions written down and he can type out the answers and that would be amazing.

AM: It would be an honor to do that he would totally. Yes, because he's actually going to be writing his own story. Can I do a little plug for him right now.

JL: Go for it, plug away sister 

AM: So Calum is a very spiritually evolved person and there's a whole story to him but what he's wanting to do now is to write a book about how to help people and what His purpose is here. So what we're doing is we're setting up a Podio platform for him, and he will share a one page, very condensed, concise description of what happened to him and what he is here for. And then he's going to ask the Podio group to submit their questions to him so he can help them with challenges, difficulties, something that they're possibly struggling with. And we will publish his answers to the whole group and then from that gather all of that information and included in the book that he was writing. So that's coming up in the next couple of weeks. So we're really excited that he's going to offer that too, to be of service to humanity. That's the whole point of the nonprofit. We have learned that from Calum that the greatest thing we can do is to be of service to one another. And it's often the journey to be a support system or cry little sorry sorry, 

JL: It's okay cry away. 

AM: Yeah. And, you know, try to share the burden with other families and moms and dads and caregivers. Because no one is alone in this. We're together even though sometimes it feels like you're on an island by yourself and I can testify to that. 

JL: Yeah, I think that's something that's really important for people to hear if they're new to this journey. I mean, I didn't even use the word disability or special needs or handicapped for years. Now, I still don't like those words. But I mean, I believe that she's got extraordinary special needs that have highlighted our world and made it amazing, but I also have to somewhat be honest, I'm going into an IEP and I'm talking to doctors, and you know, they said you need to get a handicap placard and I'm like, What? No, no, I don't get a handicap placard. And they're like Jen is just going to make your life a little easier when you're carrying hers before she's walking. I'm like, oh, you know, and so if you're on this journey, and you're still in that, no, N.O. as in numerous opportunities, but you're not there yet. You're not seeing numerous opportunities. You're in a black hole or you're climbing into a cave or you're hanging on to dear life because it's the only thing you can do is just wake up in the morning and breathe. Yes, it's okay. It's far here for you. And there is community and I know that words a little overused these days. But we are all in this together and we bring each other up especially when we need someone to hold our hand.

AM: Yes. And I think well for me personally, we have five older children to also consider with everything and when we started looking into other possibilities for Calum to find therapies or modalities that would help him it was a delicate balance the the older two boys were 17 and 18. And it was really tough on them. So it was more reliant on us to try to keep the disability concept out of it, although they were very well aware because they looked at your brother and didn't see anything happening where we were celebrating the tiny little victory. Oh, he swallowed once by himself. He moved a centimeter. I mean, we were having parties over things like that. But it took us a little bit to get there because you don't know what life is gonna look like. And I remember telling this to you, Jen. I had a wonderful friend. We're still friends. We just don't see each other very often. But her son Tyler was born with very severe cerebral palsy, which is a hypoxic or anoxic brain injury. And she tried to live until he was 12. And then he sadly passed away but she came to see us when we were in the rehab hospital. So Calum was at Children's Hospital of Orange County for a month just to go back a little bit in time he was in a coma for three and a half weeks and had feeding tubes and all kinds of stuff done to him. And then he was transferred to a rehab facility for four months and she came to see me I think, maybe two months after I was there, and I'll never forget her name is Maureen young. So Maureen, I'm giving you a shout out because it's just stuck with me all these years but she took me outside and we were under this beautiful tree at this facility and said you know what? I'm going to tell you something. Your life is going to look way different now. And it's going to be totally okay. And you just need to remember that. You're going to take him and do everything that you would have done with him. It's just gonna look different, you might need to have some more preparation involved. But what they did was talk with Tyler and it took him to baseball games. They've made his life full and robust, despite having to do all that extra work. And the other thing that struck me about that conversation was the fact that she said, I want you to really listen to me, I want you every day, you get up. You take a shower, you put your face on, and you don't stay in your PJs and you don't wear sweatpants and you get dressed because you're gonna go do your day. Sorry, I didn't mean to clap, but that's kind of what she did. And it's going to be a good day. And you just decide that it's going to be a good day and you know the day may go to hell in a handbasket. But when you get up the next day, you get up and you first and this is the other thing we probably spend a lot of time talking about on these podcasts is self care. Just the fact of taking a shower and getting your clothes on nevermind putting your face on but just getting up and getting ready for the day is a pivotal decision that you make in order to address the overwhelmingness of some of those days with your child. It's a lot.

JL: Yeah, I was on mute because I was crying.

AM: I'm sorry. 

JL: Don't be sorry, but I little I'm surprised you didn't like break down because I was like, meh. 

AM: Yeah, I'm trying not to look at you face while I'm talking because if I start it's gonna be really hard to, to to rein it in. So thank you for your patients there.

JL: I'm like a blubbering mess over here. So a couple of things that you said that I wanted to highlight what you said about 'you're going to do everything that you would, it's just going to look different.' 

AM: It's just going to look different and it's more fun when you can really understand that because it takes the pressure off of us to have our child look like any other kid. And we had five to compare Calum to and we just decided to do that.

JL: And it's something that I think all parents need to realize and need to just really hear it in their heart. Is you got to go out and do it. Life is worth living and this magical entity needs to be out. I remember when I got a very clear message from Teal of 'I need to be out and showing the world my joy.' You know, telepathically she said, 'You've got to travel with me more. You have to get me out because I have to have this I have to influence people's worlds.' And that's part of our reason why we need to get them out not necessarily for them but for the entire world.

AM: It's actually we're doing a service by getting the kids out. There was a just to speak to that. It's interesting because I'm working with seniors, you see all levels of ability. And I guess that was a gift to me right to be able to easily integrate that idea into my own child's recovery and his progress. But you know, there there's challenges in that too when you take your child into the world because then you're starting to assess things. But I think really, to further your point, the idea that life doesn't end when your child has a situation that looks insurmountable because you just make a decision because when you decide to do something, and then you have the discipline to carry it through, then you see the joy that they can bring other people when you're not expecting it. I mean, we've had that happen so many times where we meet people that will come up to us and say, 'Hey, buddy, how are you?' And they're not even looking at us as parents they address Calum directly because they can see something about him that's appealing to them. And then you have the other side and there's always going to be one side or the other but when when Maureen shared that with me about just taking him out to go do whatever it is. It also provides a level of not I don't want to say gratitude, but something validation, maybe that might not be the perfect word, but that you're offering your child an opportunity to participate no matter how they do it and how they do it and how they look like doing it doesn't matter. And we didn't let it stop us. And I think that's just because of my personality is in that world. And I think because of the other kids it was easier for us possibly as older parents to to to go there. But 100%. The other thing is part one of our missions in the nonprofit is to help children become the best version of themselves, whatever that is, right. So to give parents the support to make those decisions to just you know what, I'm gonna go to the library with my kid, I'm gonna go here and I have people from strangers opening the door for me. And it's gonna bless them on that moment that they didn't realize how profound that interaction was until maybe some other time in their life later on. And I think it's just speaks to the power that our kids have to be of service by just being in the environment or being in the community. 

JL: Yeah, it's profoundly I completely agree with you. People know Teal they don't know me. Like, I'm Teals mom we've talked about this in the podcast like I am so not Jen. I am literally Teal's mom. I mean people are like hi to mom and like 'hey yup' 

AM: That's your identity 

JL: I am proud I'm so proud to be that that person. So one that wanted to go back to something which I've we've talked about before, and I hope you're okay with it if you're not okay with able to edit this out. So, we've talked about there's one thing where you have a child in utero and you find out that you will have a child with a disability or an extra special demand challenged opportunity and then there's somebody like me who finds out okay, she's not progressing normally, she's not hitting those damn milestones that we'd all love as parents, and all of that so then you get that diagnosis. And for me, that was a slap in the face and a I wasn't expecting it. I knew she was behind but I wasn't prepared. And then you have something like your instance where it was an accident, like you talked about. How does a family who's all in the house? Right, you were all getting ready. Everyone was there. I know we've talked about this and if you're okay talking about it, 

AM: I'm okay. 

JL: It's how do you deal with that? How do you all process that?

AM: Well, first of all, I have to say that drownings are a silent event. And there's no you know, like in the movies, they would show kids splashing or whatever, and that's not accurate at all. So it's a silent event. So there was no warning, of course. I think and you and I have talked about this, when when Calum was resuscitated and you know, I think I was out with my body probably probably for weeks in and out just trying to figure out where he was and where I was and we stayed my husband mostly me, but my husband didn't share that responsibility of we never I didn't come home for four months I stayed at the hospital and I stayed at the rehab hospital. And during that process, there was a lot of support to the to the kids from my parents and from aunts and uncles and family and family friends. But Michael and I, My husband, we didn't really discuss this, but we kind of came to realize in an intuitive, unspoken way that we were not going to be saddled with guilt about what happened, especially since we didn't have to deal with Child Protective Services does that because that's their job to investigate. And so we had to deal with deal with that trauma. But after that event, when he was still in the PICU, we just had this knowing if you will, that there was gonna be no way to serve as Calum's greater recovery potential if we were burdened with guilt, and that would translate into the family dynamic. And so, again, I don't know if it's because we already had five children and we were older parents I don't think so. I think it was a spiritual connection between my husband and I that we could see that this wow, look, you know, this now this has happened and we're gonna have to go forward and basically keep our you know what together so that kids don't freak out. Because they were freaking out about what's going to happen. You know, I don't know if that answers your question, but I think the really the bigger thing that I want to express to parents is that we all have that three o'clock in the morning, wake up and then you start going well what if this and what if I have done this and what and on and on and on and that you replay that tape in your head over and over again. And then you get up and then you're first of all, you're tired. Second of all, then you're dealing with something else maybe that day that you didn't expect and it just didn't serve a purpose to really sit down somehow and I don't remember sitting down very much back then I still don't you know, me and my AAA personality that 'how can we best serve Calum's needs', without him picking up on the fact that we feel responsible for what happened or I feel responsible as his mom and you know, I must be a terrible person that we had an accident happen even though we had protocols in place. And you have to figure out how to work with that as an internal conversation. And I had a very few times because I just made a decision that I was not going to let that stuff creep into my my consciousness and that is something that takes dedication. You have to practice it. You have to say it and you have to basically fake it till you make it because you will not believe it most of the time when you're first in those experiences as a new parent or into a new realm of reality. And I think that would be my best most sage advice. I don't know again how practical that is. But I really think it does have some value because the discipline and forcing yourself to look at something in a positive way, takes time and effort. But it certainly has been worth it. When we look at how we approached Calum after he was able to come home.

JL: You said so many profound things there. So one people don't love that phrase, fake it till you make it I know that kind of creates some energy in people that's like, eeh but there is you know, the law of attraction. There's actually scientific evidence that when you squeeze the smile muscles upwords, that it actually influences your mood and how you view the world. So I believe wholeheartedly in what you're saying is that you have a choice and it does take discipline. You said it takes discipline and it takes I like to talk about it. You have to catch yourself but then when you catch yourself you can't berate yourself. There's this there's this fine line where you catch yourself in the negative thought and you can't be like 'damn you negative thought' it's like no that's counterproductive. Catch yourself gently say 'thank you thought now get out of here' and find a little bit better feeling just a little you don't have to go from poop to rose petals Right? Like you don't have to go there. You can go from poop to a little bit better. Just and then maybe just poop on the grass from a dog. I don't have any idea what I'm talking about haha. But you know what I mean? Right? Like, you don't have to bounce from depression into bliss, you know,

AM: Small steps, right? You know, we're talking to I was thinking while you were bringing that up about all this discussion about being in the present moment. And when you're looking at your child that has a host of complicated issues and you're just trying to get through the day without them throwing up or pulling out their feeding tube which was Calum's favorite thing to do. We just being Oh, and tiny little changes. And so the present moment is a huge challenge. But when I started to really pay attention to what that look like, in reality, working with Calum and being with him all the time, you sense a presence about yourself where you can easily wander, well I shouldn't say easily, I was able to more easily redirect my attention to away from that negative thought like, oh my god, he just threw up and there's feed all over. He took out the tube. And so instead of doing that, I'm like, Oh, look, he decided that he didn't want his feeding tube in there. So he pulled it out. 

JL: And the fact that he could pull it out. Yes. When he wasn't even moving a centimeter.

AM: But that one little hand, the right hand could move. And so he figured out how to do that. But that was a profound moment. And that was very much in the beginning to see that and like, oh, that's kind of interesting. Instead of being upset that I had to deal with it, it's like, Oh, that's really interesting that he did that and so I'm gonna see him do that. Again. Not really, but the fact that he could. I want him to repeat that.

JL: Yes. And one thing that I started doing recently is going back and watching videos of Teal because that really helps you see the change? Because we're living in this and you know, we're all therapists, right? Every single one of us is a therapist, whether we're trained with Silvia, which is how we both met one another Sylvia Shoredike or, or were speech therapists or were feeding therapists or OT PT. I mean, dude, all we do every day is like, okay, how can I make this a therapeutic experience for my child still be her mother and still have her enjoy life? And be the person she supposed to be and not tell her not not have her feel like she's not enough? Because she's more than enough? I mean, it's nonstop chatter, right. It's in your head and I just get your head Annemarie?

AM: Oh yeah you did

JL: Scary, scary, but lovely being in there with you. But you know, when you go back even a year, go back four years, and find a video of your child and just be like, Oh, my gosh, we have come so far.

AM: Yeah. It's profound when you look at it that way. And for parents and caregivers, and families that are at the beginning. You know, I think it's really critical that you photograph and you video and we didn't. So Calum's accident happened at the end of 2006. So we weren't as savvy with the cell phone and the video back then. So a lot of things we captured in photographs which don't do the same justice and a lot of ways, especially when you're trying to capture a kid that's, you know, going to move a centimeter you can't see that in a photo but you know, we have enough to go back but I think to revisit that as an it's a powerful testimony, because most of us are in the goal mode. We're going today we're getting up we're doing this we're having this we're gonna have speech we're gonna have that we're gonna have lessons we're going to do hyperbaric whatever we're doing. And so we get invested in the going mode, and then you just sort of go from there and you're not really looking at how far your child has come. So I think that's a valuable piece of history that you can review going forward because even I have forgotten when I look back and Calum as he got older. You know, we don't have small children that the oldest one is six foot six, and then there are those 6'4" and 6'3" from there. So we're like the family of trees. Yes, you are. And so, you know, Calum is a tall boy. And so, you know, he was able to do some things when he was a little younger, when he didn't have the length and the volume and the mass that but it hasn't affected anything because he's accelerated in other aspects of his life. So but just to look back on that, I think is a powerful resource. That we have. right at our fingertips is parents for sure.

JL: Yeah. And I also want to highlight when other people come to visit, and they say, 'Oh, my gosh', like they see these profound changes even in three months, when maybe a video doesn't show the difference, but all of a sudden they see it. You know, so I think that's something to really celebrate too, and even to ask you know, whether it's a grandmother or a neighbor or cousin or an auntie and just say, you know, what do you see in Calum? That's different than the last time you were here.

AM: Well, I will tell you that he had his triennial, which is every three year IEP, yes. And we just completed it in February and two, or I would say three of the original team members. So we're going back 13 years. three of the original team members and the other ones were new. Calum demonstrated some amazing growth early on because of his age. And when the brain gets to be about six or seven, it starts to slow down a little bit and then it picks up again, when we get into puberty. And as much as I know about the brain I still feel like I know less now because there's so much to know about it, but just for the sake of discussion, that's kind of the encapsulated information. And so it wasn't discouraging, because I see the progress in different ways that are viewed by traditional methods of evaluation like through the school district, but this particular evaluation from the last time they were just blown away by his interaction with them his ability to you know, relate to them in a way verbally, and also maneuver his environment with his manual chair and we've made a very distinct decision about not giving him a power chair. That's been on advice and counsel from the institute's who we were affiliated for many years, because there's still that potential for him to access walking and he wants to achieve that. So we don't want to take that opportunity away by providing that but nonetheless, he wheeled into the we have a very small house and there's a lot of turns and twists and he only uses the right arm to manage that wheelchair, but he was able to take the OT into the kitchen, open the freezer, pull out the coconut ice cream and hand it to her and say let's have some and she has known him since he was four and a half and was just floored at what she was seeing. So it's that and to some other family or some other situation that wouldn't be you know as impactful but it was a tremendous victory for him and he was so proud of himself and mind you he's been homeschooled has not been in the community. He does have immune disorder, so we can't have him out. And we've been very fortunate because of COVID. It didn't really affect what we were doing at home. But to see that interaction and to see the joy and Pauline space, the OT was just remarkable to me and it just it made my heart soar not as his mom necessarily but for Calum's experience for what he was able to demonstrate to her and it was it was just really profound and tremendously purposeful and validating to him. 

JL: I believe that is when I find the most pride is when I see how thrilled Teal is in herself and then everything that we're doing is to just build them up. It's not about me, it's about her and the message that she's here to give the world and it sounds like Calum is doing that.

AM: Yeah, he is he and he's just getting started, mind you.

JL: He's just getting started. So we are going to bring you back because I know there's some other things I want to chat with you about. However, before we do, tell us how people can find your nonprofit and if they can donate.

AM: Oh yes so the nonprofit is called Project One Cause and its you can read about the sotry and see pictures of Calum throughtout the years. I mean its been a long journey and it's just the beginning now with the launching of this. We're brand new so we're looking for donors and support so we can begin to financially aid families  but also to do the peer to peer work. Thats basically what my roll will be initially is to provide kinda what were talking about on the podcast. If a mom wants to talk to me this has happened over the years. I encourage you to take time to look over the story and take a look at the different resources we have a beautiful reseource list which is probably only 1/3 of everything we have done but we picked the most important and most pivotal things to help parents look around and explore possabilities for their child and of course there is a chat button or you can send an email to me. 

JL: I think what you're doing on nonprofit is what I'm trying to do here is giving people quick access to a lot of different things and I lvoe that youre able to say 'hey there is a resource page' and if you want to know more about why the chamber works so well for us let us know.' If you want to know why neuroplasticity is so imporant or brain development, you know all that you can reach out Annemarie she's a wonderful person, an incredible resource to anybody listening. So Annemarie thank you so very much for joining us today and I'm excited to have you back. 

AM: Thank you so much it was my great pleasure.