The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman

[00:00:00] I'm Effie Parks. Welcome to Once Upon A Gene, the podcast. This is a place I created for

[00:00:09] us to connect and share the stories of our not so typical lives. Raising kids who are

[00:00:15] born with rare genetic syndromes and other types of disabilities can feel pretty isolating.

[00:00:21] What I know for sure is that when we can hear the triumphs and challenges from others

[00:00:25] who get it, we can find a lot more laughter, a lot more hope and feel a lot less alone.

[00:00:31] I believe there are some magical healing powers that can happen for all of us through sharing

[00:00:36] our stories and I'll take all the help I can get.

[00:00:40] Once Upon A Gene is proud to be part of Bloodstream Media. Living in a family affected by rare

[00:00:49] and chronic illness can be isolating and sometimes the best medicine is connecting

[00:00:53] to the voices of people who share your experience. This is why Bloodstream Media produces podcast,

[00:00:59] blogs and other forms of content for patients, families and clinicians impacted by rare and

[00:01:05] chronic diseases. Visit bloodstreammedia.com to learn more.

[00:01:08] Hello friends and welcome to the show. I'm Effie Parks and I'm so glad you're here.

[00:01:14] It's funny I just got off the phone with the father of today's guests and I was

[00:01:18] laughing and I was like, this family is going to think like I am a super stalker or something.

[00:01:24] You know, I don't know how to explain it but there are a few families that I've met

[00:01:28] along this rare disease journey and through this podcast that I just feel so deeply connected

[00:01:34] to for reasons I can't explain and this family is one of them.

[00:01:40] Today's guest you actually heard on a storytelling episode back on episode 109, Big Brothers.

[00:01:47] So make sure you definitely go back and listen to that episode too.

[00:01:51] Today we're talking about grief and the sibling experience of it.

[00:01:57] He was a big brother to Ben who had San Filippo syndrome which is a devastating disease

[00:02:03] that causes many things and ultimately childhood dementia and death before adulthood typically.

[00:02:12] So it's extremely cruel and tragic and my guest has just such profound insight and I'm

[00:02:23] really, I don't know, he takes my breath away with how he's moved through it and how

[00:02:29] he's figured out ways to communicate it and I'm just, I'm really moved by what

[00:02:36] he has to say and I think he is a teacher and that's just another thing about these siblings,

[00:02:44] right? There's just something about him. I know you're going to love this conversation

[00:02:48] and I can't wait to share it with you so please enjoy my conversation with Noah Sideman.

[00:02:54] Hi Noah, welcome to the podcast.

[00:02:56] Hi, how are you?

[00:02:58] I'm doing well. I'm really looking forward to talking to you.

[00:03:02] I feel like I kind of know about you already. I've listened to your words, I've read your words.

[00:03:08] You were on an episode of our storytelling episode a while back and I'll link that in the

[00:03:12] show now and it's just, it's really great to have you here as a guest.

[00:03:16] Yeah, I'm really excited. I think that while I love doing those pieces where I get to spend

[00:03:20] a little bit more time rolling it around in my brain, I also really enjoy just speaking

[00:03:26] off the cuff and seeing where things go. I think it's an equally good way to do some

[00:03:29] introspection. Totally. Well, I'm sure you're very good at both. Something that strikes me

[00:03:35] about you so much is just how articulate you are and you just dig deep, I feel like,

[00:03:42] without even trying and it's just a really amazing quality. Really.

[00:03:46] Well thank you. I appreciate you're saying that. I hope I'm not going to turn your

[00:03:49] plans on their head by saying I think it might be a bit of a defense mechanism.

[00:03:53] You know, I was actually going to ask you about that and maybe we'll get into that a little

[00:03:57] bit later. But yeah, super interesting. First I kind of want to just lay out the land and I want

[00:04:03] to know about being a big brother to Ben and maybe what you're thinking about the most lately.

[00:04:12] Okay. So I think it is difficult for me to put really neatly what it was like being a big

[00:04:18] brother for Ben. It was a whole lot of things and I would say the thing that sticks in my mind

[00:04:23] the most is this idea of legacy and memory and what I'm doing with it. For a really long time,

[00:04:30] I was super focused on trying to figure out what my brother meant to me

[00:04:37] and how I could communicate that. And in doing so, I was also really holding on tightly to

[00:04:45] whatever that idea ended up being and I almost held on a little bit too tightly.

[00:04:51] And I think a lot of what I've been doing more recently is trying to take a step back and say,

[00:04:56] well, Ben meant this to me. And I remember these things about him, but I'm changing.

[00:05:03] And so the context in which those memories live and those experiences and that meaning is derived

[00:05:10] is also changing. And so I have to be okay with that. I have to be able to let go

[00:05:15] of those little bits of my brother that I sort of polished and shined to the point where I felt like

[00:05:23] they were good enough and just let him be sort of who he is to me as I change. And maybe that's

[00:05:30] part of it, right? Maybe my brother is a great signpost for me because I am going to be changing

[00:05:38] but my knowing him and my experiences with him are these sort of fixed points in my life.

[00:05:46] And so I can come back to them and I can say, when I was 14, I really, really valued all of

[00:05:51] the things that I could do for my brother. Could I go out and speak on his behalf? Could I fundraise?

[00:05:57] Could I raise awareness? Could I do this, that and the other thing? And then as I got older,

[00:06:02] especially when I was thinking about going away to college, the things that mattered more to

[00:06:06] me were the stuff that I could do with my brother. Right? Could we go tooling around the supermarket

[00:06:12] in his wheelchair and bump into stuff and get away with it because, you know, who's going to yell

[00:06:16] at the kid and his brother who's finally laughing and smiling? We terrorized a star market pretty

[00:06:22] regularly. We'd go in and my mom would peel off to the produce section but she would give Ben

[00:06:29] and I three random items to grab all throughout the store. And we would just go full tilt. And this is

[00:06:37] like, you know, me six foot three in high school, like the most athletic I had been going as fast

[00:06:44] as I could with Ben just cackling in his chair. And we would take these corners around aisles

[00:06:50] up on two wheels and, you know, arrive at the milk or arrive at the bread or whatever we

[00:06:56] were grabbing. And some poor store employee would look at us and we would just be like, sorry.

[00:07:03] Oh my gosh. But so suddenly those things mattered a lot more, right? It wasn't I wasn't really doing

[00:07:09] anything for Ben. I wasn't helping care for him. I wasn't advancing the research into San Filippo.

[00:07:14] I was just being with him. And so the value of that suddenly increased to me and I was less

[00:07:20] concerned with the fundraising that I was doing. And so I guess what I'm trying to get at

[00:07:25] probably a little bit too long in the making of this point is that I don't know what is going to

[00:07:31] matter most to be about my memories of Ben in a couple years, but I'd like to be open to whatever

[00:07:37] that changing interpretation is. Do you feel like that was when you finally started to live in

[00:07:44] the moment? Is that what you mean by figuring out what you could do with Ben? Did it take you

[00:07:49] until you were an adult to really savor the exact moment you were in?

[00:07:54] Yeah, I think that's a big part of it. I think that becoming more and more aware that we were

[00:08:01] moving towards an ending and towards a parting meant that it wasn't so much me thinking about

[00:08:08] what I can do for him and how I can maybe even avert sort of this inevitability of his passing

[00:08:18] through my efforts. It was just how can I be a brother to him? How can I make stuff that is

[00:08:23] meaningful and matters to both of us while I have the opportunity? So yeah, I think it was

[00:08:29] maturity. It was the progression of his disorder and I think maybe just a little bit

[00:08:33] of internal clarity of like it takes a lot of money and a lot of fundraising and a lot of luck

[00:08:39] to move the dial on this kind of stuff, but it doesn't take a ton to make your sibling laugh

[00:08:44] and in a lot of ways there's a lot of value there.

[00:08:48] I heard you say once just about what you mentioned about the memories that you polished

[00:08:54] and at those moments or those days that were so difficult or times that you were grieving so

[00:09:02] deeply that realizing that you had been through the hardest thing that you could ever go through

[00:09:07] and you still made it over and over and over that that was such an accomplishment. So if you're sort of

[00:09:14] trying to break down that polished memory at this point and really just look at it for everything

[00:09:20] that it is and everything that you remember now, are you still able to pull things like that on

[00:09:26] those days that are really extra hard? Yeah, I am. And I think that the biggest part of

[00:09:32] breaking down that particular insight because I do think it's a good one and a valuable one

[00:09:37] and has lent me a lot of strength is to be a little more forgiving of myself on my days of

[00:09:42] frustration and to say yes there were incredibly hard moments and I triumphed over them and I will

[00:09:51] continue to and I will have the sort of faith and the confidence that I can and there were also

[00:09:57] moments of frustration where I had to put it put things down and step away from things and

[00:10:02] and just concede that there are struggles and that you know being equal to them sometimes means

[00:10:10] knowing when to take a break and give yourself some distance. And so I think what I had tricked

[00:10:16] myself into doing in this sort of everything is the hardest thing that you can handle and tomorrow

[00:10:23] you'll be ready for the next thing is forced myself to always try to be ready for it tomorrow

[00:10:29] and always try to take on more when I think the truth is a little bit more lenient that

[00:10:36] yes you're going to face challenges and they're going to be ever greater because we're people

[00:10:42] and we love expanding our capacity for things but there's also time to recuperate and

[00:10:50] time to shore up and time to turn the lessons you learned into something more actionable

[00:10:56] and so I think that really the the tempering piece to that little insight is is be lenient and be

[00:11:01] generous with yourself too. What about as a sibling? I know I hear a lot from adults the

[00:11:07] pressure to be perfect, the pressure to be happy, the pressure to not be a burden. How

[00:11:16] was that experience for you and did it remain after Ben's passing or morph into a different

[00:11:23] way of not being a burden and being a perfectionist? Yeah I think that it absolutely

[00:11:30] is still with me and was a really hard thing to grapple with. It's really hard as a sibling

[00:11:36] as you mentioned to look at all of the stuff that is on your parents plate that's so far

[00:11:41] out of your and their control and say well kind I can't get a C on this math test right?

[00:11:48] I need to make sure that I'm doing all of the little things that are so you know they seem so

[00:11:54] menial and so unimportant compared to this momentous part of your life that you just want to keep quiet

[00:12:00] about them and I think it's been true as an adult and a little bit exacerbated by distance

[00:12:06] from my family and distance from those kind of support systems and friends that know me

[00:12:11] but never knew Ben and have only heard about sort of my recollection of him and what I've taken

[00:12:18] from my experiences and as we sort of talked about I view it in a little bit of a rosier

[00:12:25] hue than it might actually have been and so it's sometimes really easy for me to push away stuff

[00:12:32] that I'm struggling with and let myself sort of sink a little bit deeper when it would have taken

[00:12:36] a you know a quick helping hand from a friend to pull me out of it. So yeah I think that

[00:12:41] you know as a sibling there's a lot of need to just be on top of your own care and your

[00:12:46] own emotions and know how to say hey I'm having a rough go of things right this minute. I could use

[00:12:52] a hand or even just report out. I think I was talking with my mom about this a little while ago

[00:12:58] when I first moved out after college I didn't call her for really mundane things

[00:13:06] like my window shades were dirty and I didn't know how to clean them because that was a

[00:13:10] 23 year old idiot who had never lived on his own right and window shades were just kind of

[00:13:15] always magically clean but I knew that in my family there were only problems and solutions.

[00:13:21] There was no just like gentle griping about the day-to-day minutiae because I knew if I called

[00:13:27] my mom she would give me the like play-by-play of exactly what I had to do and that wouldn't

[00:13:33] have necessarily been bad but I don't think it was what I was looking for and it wasn't a piece

[00:13:39] of communication that we understood. There were no casual complaints in my family growing up. It

[00:13:44] was either disaster or business as usual and filling in that middle space of like I had a shitty day

[00:13:52] I don't need you to do anything about it. I just want to talk about it. Just didn't exist and so

[00:13:57] we've had to really build that again and it's been difficult for all of us because we only

[00:14:02] problem solve right that is how we function as a family. We do projects and we profit solve

[00:14:07] and so yeah that part has been the weirdest or like the least expected hurdle in how we

[00:14:14] communicate after my brother. That's a really interesting perspective yeah you're like on

[00:14:21] crisis mode 100% of the time and then all of a sudden you don't have this need or whatever to be

[00:14:31] vigilant all the time. That's a real hard stop and I'm sure that that probably goes into your

[00:14:39] personal life too right like do you feel like you can do the mundane easily with your friends and

[00:14:45] your colleagues? I think that I am getting steadily better about it but it is really hard

[00:14:52] and in the same way that I'm saying I don't always look for that kind of problem solving

[00:14:56] and you know disaster response from my family when I call and talk to them. I imagine that the people

[00:15:02] around me don't always want it from me but it is my gut reaction to this is going on how can I fix

[00:15:09] it what can I do because yeah it was everything that cropped up, merited a response in our

[00:15:14] household growing up and so that's sort of all all I know and what we default to. I would say

[00:15:19] it creeps in a little bit less and less and less as I become more aware of it and actively

[00:15:24] work to fix it but it definitely cuts both ways and is certainly something that I need to be

[00:15:31] you know thinking about consciously to to avoid doing when it's not appropriate.

[00:15:37] What are some of those coping mechanisms that you kind of brought up? Explain the ability

[00:15:43] and the need that you have to kind of write about it and talk about this stuff so

[00:15:48] wisely and so in depth how is that something that you also kind of revert to?

[00:15:54] So I think what I ended up doing and I can't pinpoint exactly when this sort of transition

[00:15:59] happened is I came to the realization that I was going to be vulnerable emotionally around my brother

[00:16:09] a lot and obviously being vulnerable is the king to being uncomfortable and so I said to myself

[00:16:17] like you're gonna have to talk about this you're gonna have to share this you're gonna

[00:16:21] have to accept it and live with it and so let's put it out front and let's get really good at talking

[00:16:27] about it and let's be really comfortable doing it and so it ended up being that like I got more

[00:16:34] comfortable talking about the progression of my brother's disease and my feelings around him

[00:16:40] than all of the other little things that we're all vulnerable about and that we all

[00:16:45] feel emotional about and so I sort of used it you know almost as a shield because nobody

[00:16:53] asked the teenager after they've just articulated how they feel about their brother's inevitable death

[00:17:00] if they're doing okay in school or if they're feeling good about making friends or socially

[00:17:04] or any of those questions and so I got to say like okay here's the one thing that I'm gonna be

[00:17:09] really emotionally open about I'm gonna do a great job of it don't bother me about anything else

[00:17:16] and so it just like through repetition and practice it got really easy to talk about stuff around then

[00:17:22] not that it's not genuine or honest or or even emotionally impactful but it's also in a lot

[00:17:28] of ways my shield oh no uh man that's hard to hear just human to human but like as a mom

[00:17:37] oh man to know that this young person is feeling that much pain to have to put up this shield but

[00:17:48] not just to hide his own pain but also because of such strength right and the growth the maturity

[00:17:56] that comes with living the life that you are living it has a dual purpose but the fact that

[00:18:02] you even had to realize that and that you knew it would work is really really painful yeah it is

[00:18:09] really tough and it's tough to untangle even in the aftermath and knowing it right like I know that

[00:18:16] what I just told you is accurate I know that I do it and it's almost a little bit too good

[00:18:22] because it works and so getting away from it is really hard and I don't necessarily want to

[00:18:27] stop like I want to keep talking about my brother I want to keep accessing that emotion and those

[00:18:32] feelings and I want to keep sharing it with people because I think it is important but I also need to

[00:18:38] catch myself and say are you attending to the other needs that you have or are you hiding behind

[00:18:44] this again you know it's this weird case of like I'm doing the right thing and I'm doing it the

[00:18:49] right way and so I need to examine the the reasons behind it right because there's the

[00:18:55] I want to talk about my brother and share that's a good reason I want to deflect from

[00:18:59] something else that's a dubious reason but really only I can dig into those so it's a

[00:19:06] it's a bit of a responsibility and a work in progress yeah I mean what would you say to that

[00:19:13] young person who is living the same life that you were living and that you're living now

[00:19:22] who is doing the same thing what are some ways or some pieces of advice that you would have for

[00:19:29] them to be able to kind of lower that shield or get their real self out or what questions do you

[00:19:36] want people to ask that person yeah so I think the first thing that I would say and maybe the best

[00:19:42] thing to ask that person is about roles when do you feel like a sibling when do you feel like

[00:19:47] you're a caregiver when do you feel like you're an advocate when do you feel like you are

[00:19:53] just you because I think that part of what happened and part of what led me to where I got

[00:20:00] is I got stuck in trying to be a lot of those things at once and the easiest one to ignore

[00:20:06] is just me because it's not really contingent on anybody else there's no feedback necessarily

[00:20:12] so that is maybe a good question to start with and the other piece of advice I would say

[00:20:18] is that like it's hard to go wrong if you're putting it out there which is going to sound a little bit

[00:20:23] you know nebulous and fluffy but one of the toughest things is to like feel like you have

[00:20:29] to push down this frustration or this anger or this sadness or this fear whatever these

[00:20:34] emotions are because you can't cause a problem you can't face that feeling necessarily and the

[00:20:41] the deeper truth or the real truth is that everything you push down morphs into something

[00:20:45] worse you know frustration turns into resentment fear turns into trepidation you know sadness becomes

[00:20:53] becomes melancholy or torpor or whatever it's going to be and so if you're angry be angry if

[00:21:01] you're sad be sad you'll find the support around you and it will make it way way way easier to

[00:21:09] be strong when you genuinely need to right like I think that's essentially what we're talking

[00:21:14] about right I sort of built up a muscle through using it a lot and then can't unclench the fist to

[00:21:22] do anything else with it and so the more you flex and the more you relax you're still going to be

[00:21:29] strong and you're still going to be able to do all of these difficult things that that a lot of

[00:21:34] your peers can't even imagine but every moment you take in stretching and recovering and relaxing

[00:21:43] is one that's going to make you so much more happy and fulfilled and adaptable and and ready

[00:21:49] to take on the next thing as well if you need to be practical about it too you know no matter

[00:21:55] how strong the fist you can make if that's all you do you know you're gonna have some problems

[00:22:00] down the line. Oof one of the truest pieces of advice I think I have ever heard and known

[00:22:08] to be true for sure how did you learn how to do that Noah because it's hard to realize that emotions

[00:22:15] are important and moving through them are imperative to your well-being did you learn this from

[00:22:20] therapy was this just experience and growth what were the tools that you needed to have

[00:22:25] permission to feel. So therapy definitely helps I would say that all of the other ways that

[00:22:32] I got there are inferior to talking to somebody and getting a little bit of help but experiences

[00:22:41] a big piece of it and I think for me in addition to the help I got from therapy I'm just a really

[00:22:48] sort of methodical person in the way I think and so when I land on something I pick it apart

[00:22:55] and I think that is what ended up happening is as I got older and more and more self-aware

[00:23:02] and more interested in understanding not just what I was feeling but maybe why I started to

[00:23:10] look back and sift through things and you know we talked about it early on writing and speaking

[00:23:15] were a big piece of how I did that but they're not the only outlets at all I would say that like

[00:23:21] helping out friends in moments where they needed a little bit was a great piece of insight into

[00:23:26] my own emotions and maybe how better to parse them out having a little bit of space from my

[00:23:30] brother and going away to college was also a great way to do that getting a chance to reconsider

[00:23:35] how I wanted to talk about him and frame him when I met new people was weirdly enough a really big

[00:23:42] peak into into my own feelings and how I expressed my emotions but really at the end of the day it's

[00:23:50] I think the best thing is someone else who can help you ask all of those questions because

[00:23:55] it's hard to ask them of yourselves did I feel frustrated then was I sad was I angry was I

[00:24:00] afraid those are hard questions to to know to ask of yourself and so having a sounding board a friend

[00:24:09] you know a large dog to take for quiet walks in the woods and have a one-sided conversation with

[00:24:14] like there's a lot of means to that end and I think they all start with just

[00:24:19] you know this sort of Whitney of questions that you can ask at a really steady burn

[00:24:24] and you don't have to get a lot of purchase with every repetition just a little bit more

[00:24:28] insight just a little bit more honesty and and just a little bit more of a relaxed grip on

[00:24:34] how you're feeling it's incremental right I love the way you put that slow burn thought behind it

[00:24:41] what do you do when you know that you're going to go into a situation or be around something

[00:24:49] that's going to bring up something really painful for you how do you brace for it or

[00:24:54] how do you welcome it or avoid it I have no idea I I really don't I think that my gut instinct a lot

[00:25:02] of times is to try to avoid it and I think that when it's not I I tend to I tend to talk things

[00:25:12] away and like I said before come back and sort of pick them apart almost clinically until I have

[00:25:21] arrived at something that I feel like I can I can grasp or understand but I don't know I still walk

[00:25:26] out of the room when someone turns Arthur on because that was what my brother loved to watch

[00:25:32] and so I think it's a bit of a mixed bag it's hard to it's hard to just attack one or just to

[00:25:38] take apart one thing because they tend to all be so interconnected it's easier with family and

[00:25:44] it's easier with friends easier with somebody else to talk to but I think that there's no

[00:25:51] there's no clean negative advice that I can give other than it's worth it how do you think people

[00:25:59] misjudge grief or what are the misconceptions that you've run into personally that people have

[00:26:06] about what you're going through or death and dying in general I think that the biggest

[00:26:13] problem with grief is that there's no no amount of experience is applicable it's sort of just this

[00:26:23] this thing that almost defies the ability to be be prepared for it to use your past to

[00:26:31] to help you cope or anything like that if you kind of have to accept that it's it's going to

[00:26:37] be different it's going to be new and you're gonna have to figure it out and one of the

[00:26:41] things that I say to people is I don't think grief gets easier I think you get better at it

[00:26:46] I think that the totality of the sadness and the pain

[00:26:52] and the loss that I felt when Ben died isn't slowly evaporating over time

[00:27:01] I'm getting better at carrying it I'm getting better at unpacking it where I can

[00:27:06] and facing it where I can and moving past it when I can't in the moment I think people think that

[00:27:15] or I think that those that try to give advice to people that are grieving

[00:27:21] are hanging on to the idea that the time will sort of heal it and I like the I

[00:27:29] like shifting that plan to you improve right it's not that your grief goes away

[00:27:36] it's that you get better at it because then there's some ownership to it and there's some value to it

[00:27:42] and there's this ability to like grab a hold and wrestle with it and feel like you've come out

[00:27:48] a little bit more for having done so having like a little bit of control in the chaos

[00:27:54] for everything that you can't control right like I don't I don't love the idea that like with time

[00:28:00] the pain of my brother's passing is going to fade but I do like the idea that with time I will be

[00:28:06] better and better equipped to to handle all of it and to hold on to the pieces that matter and

[00:28:12] to let go of the ones that don't and to grow and change with it one of those is static and

[00:28:18] the other one speaks to me building something and I'd like to try to build something

[00:28:23] what about regret how do you deal with regret after a life like this even though a lot of the regret

[00:28:32] might not be true might not really be what happened or didn't happen but I know regret is

[00:28:38] such a wound its own special kind of demon and I wonder how how you deal with it

[00:28:46] yeah I with difficulty I think is the most honest answer like I was saying more generally

[00:28:55] with grief I think also with regret and especially in this space where you know in my brain I can

[00:29:03] recognize when it is illogical or unfair sort of beating myself up for no real reason

[00:29:10] but it's hard to get there in your gut and so I've almost have this sort of practice path through the

[00:29:17] maze of that regret that like when I get stuck in a loop of I wish I could have done I could have

[00:29:23] done more for my brother I could have been there for him I could have been more patient and more

[00:29:28] generous I could have engaged with him more even as he was struggling

[00:29:33] and maybe I could have done more but I also was you know was my own person was doing

[00:29:41] the best I could and make mistakes and so I have almost this like thought process that I go

[00:29:47] through when I get in that loop that gets me out of it and every time I start to feel that

[00:29:53] regret and feel like I'm getting stuck I practice that sort of you know mental jujitsu

[00:29:59] to get back to a reasonable place and I'm getting better and better at it every iteration you know

[00:30:05] instead of tossing and turning in bed for four hours at night I've got it down to like a clean

[00:30:10] half an hour and so I would say that like regret is tough right because it's going to sing the

[00:30:17] sort of dissonance between what your brain and your gut know to be true and the best way to

[00:30:24] deal with it is to is to continue moving forward and so as long as you're making the choices that let

[00:30:29] you grapple with as much of it as you can handle and then still take the next step and come back

[00:30:36] to it later then you're doing well what's it been like with the the family dynamic after

[00:30:42] Ben maybe with your sister Isabel I know as someone who comes from a very large family

[00:30:49] every experience that all of us had as children is so different even though we might have been

[00:30:55] literally doing the same thing at the same time we have such different stories about it

[00:31:00] and I wonder how do you and your sibling kind of communicate or has it brought you closer or is

[00:31:06] it weird what's that like so I would say that it definitely brought us closer Izzy and I are

[00:31:14] very very close and we do a good job of talking to one another for the most part we definitely

[00:31:20] handled things differently and we definitely have sort of managed to manifest different problems

[00:31:28] from the same from the same source material but I think that we did the groundwork when we were

[00:31:34] really young we talked a lot we were allies in all things when we thought it was relatively

[00:31:40] brief and it helps that we're five years apart but I would say that I don't know I just I think

[00:31:46] that the best thing that she does is pass no judgment and so I try to I try to do the same

[00:31:54] you know there's no no right way to maneuver life with a sibling with a rare genetic disorder

[00:32:02] and there's no wrong way and that the two of us are honest about it with one another is

[00:32:08] more than enough for us to continue to unpack it together and support each other I love that even

[00:32:15] though yeah problems manifest differently from the same things the sibling experience is still like

[00:32:22] the only person who knows exactly where you came from no matter what right then even if there

[00:32:27] are moments that I don't understand or that she doesn't understand and there certainly are

[00:32:32] are I mean I think that we both just accept them and that's

[00:32:38] that's a really that's a really generous and really comforting thing to know about about

[00:32:44] somebody and about your family do you feel compelled to be some sort of mentor or leader

[00:32:52] for siblings of rare do you feel like there's something else you need to do do you reach out

[00:33:02] privately what do these siblings need that you have to give and do you want to yeah I definitely

[00:33:09] do I think that somewhere along the line and it was probably right around when one of the

[00:33:18] researchers that we were supporting as a foundation was getting ready to bring

[00:33:25] her efforts to clinical trials and I sort of had the crystallizing moment of this might happen

[00:33:31] and it will be too late for my brother and I had to spend a lot of time reevaluating what my

[00:33:37] actual motivations were and was I going to find the energy in the drive to keep doing this to

[00:33:46] keep fundraising to keep staying in the space that you know causes no small amount of pain to be around

[00:33:52] all the time and if so why so yeah I think that I do really want to want to be there for siblings and

[00:34:00] lend sort of the experience of of my life and my voice to those that that maybe don't have at all

[00:34:08] as figured out as I do which sounds really ironic to say because I don't really know if I have

[00:34:13] much figured out but what I tell the people because you know you've listened to me for a little bit now

[00:34:19] I talk a lot and I'm usually good enough at making what I'm saying sound compelling

[00:34:25] but take whatever sticks is really my biggest message right if I say something and it doesn't

[00:34:31] resonate with you at all you are 100 in power to ignore it if it doesn't ring true to you

[00:34:39] at the moment it might later it might never it doesn't really matter if something I say

[00:34:47] seems insightful and it resonates and it makes sense to you then great use it get a little bit of a

[00:34:52] boost from my experience but there's no one path there's no one truth there's no easy way through

[00:34:59] this that you can guide someone with experience you can just say here's where I came from

[00:35:06] here's what I'm feeling here's how I dealt with it it worked it didn't work or some shade in between

[00:35:13] doesn't really matter just take whatever sticks

[00:35:18] and sometimes the smallest thing you can get the biggest bang for your buck for sure

[00:35:22] I think about that in the ways of this podcast too right it's like a cafeteria you take what

[00:35:27] you want and you leave what you don't exactly and everyone is richer for it yeah like I

[00:35:32] you know get a lot of joy and a little bit of therapy about getting to have this conversation with you

[00:35:37] and even if only 30 seconds of it rings true to some of your listeners that's

[00:35:43] you know that's a pretty good a pretty good return on our investment amen

[00:35:50] so as a parent what do the parents from from your perspective what can we do

[00:35:58] for our kids to make sure that we don't screw it up how do we make it better for the sibling

[00:36:07] experience what should we be most mindful of I would say abandon the idea that you owe

[00:36:14] your siblings some normalcy I think that my parents spent a lot of effort

[00:36:22] trying to take a time or a situation where they felt like they needed to deliver for my sister and I

[00:36:30] the normal experience of childhood or something along those lines tell me why because I would

[00:36:38] think the exact opposite like I'm thinking like I'm gonna go out of my way to make sure my

[00:36:43] daughter has this or that or does this or goes here because I want her to feel

[00:36:49] like everyone else too I wanted to have that experience why should I abandon it because

[00:36:55] I think you should focus all of that same energy on helping your children articulate what they want

[00:37:03] right I at no point really cared about normalcy I was in fact pretty happy to

[00:37:11] not eat out to dinner all of the time I didn't really care if people stared at me while I was

[00:37:18] taking a rock around the neighborhood and holding my brother's hand and so I think that

[00:37:24] if I had been better at articulating what I wanted and what was important to me

[00:37:28] then it would have been easier for my parents to spend their you know admittedly limited

[00:37:33] energy to help me get that as opposed to sort of this you know lofty ideal of what is normal

[00:37:43] that that doesn't really it's not really attached to anything meaningful so I would say that like

[00:37:50] normal is defined by who maybe I'm not doing a great job articulating this I apologize

[00:37:56] yes you are I completely understand right I guess what I'm saying is like you know if you're

[00:38:03] your daughter says no this is going to be a bad example oh I'll uh I'll say I'll spare you the word

[00:38:11] salad and maybe be quiet for a moment well I think okay I'm gonna fall back on slightly more general

[00:38:24] truism and just say like I think that more important than chasing normal is figuring out

[00:38:33] what is important to your kid and helping them pursue it because none of us are normal

[00:38:40] regardless of our experience with rare disease or lack thereof and if we're trying to emulate

[00:38:47] something that is as nebulous as normal then I think some amount of our effort is wasted

[00:38:57] maybe not always right maybe it is important to have you know the Chuck E cheese birthday

[00:39:04] even at the cost of a babysitter for Ben but better to spend that that time and the energy

[00:39:11] and those precious babysitter hours on something that you want as opposed to something that

[00:39:18] just aspires to normalcy this is what I'm talking about Nella your coping mechanism

[00:39:25] is so mesmerizing and you just really have such amazing perspective and it's so valuable

[00:39:37] and that is such an important piece of advice to really make sure as families that the siblings are

[00:39:45] exactly the same as you they're living the same experience you are as a parent as a caregiver right

[00:39:51] and that maybe they're also decision makers and maybe they get to know all of the information

[00:39:57] age appropriately to be able to be as equal of a voice in how the family moves day to day right

[00:40:06] and it's great training for self advocacy as those decisions become harder and harder and more

[00:40:13] and more adult that as we talked about a really accelerated pace if you know how to advocate

[00:40:19] for yourself over what you want for your birthday or how you want to spend your free time

[00:40:24] then you're also going to be able to do the same over the more weighty and more important decisions

[00:40:32] and also be able to say you know it's not embarrassing to me I don't mind having friends over

[00:40:38] when my brother's you know wheelchair and stand there is out I don't none of that's important

[00:40:44] to me we don't need to chase that kind of normalcy but you know I really want to go on

[00:40:50] the class trip to go skiing wherever or I want to do this thing I guess just part of being a

[00:40:59] sibling of a kid with rare diseases you you have a pretty good filter for what is important to you

[00:41:05] and it's easy to feel like you can't stand up and ask for that because there are so many other

[00:41:10] needs going on that you you think are more important than your own and so when that

[00:41:17] that sort of focused parent time where your parents are like okay you know your siblings

[00:41:22] don't exist we're just going to go do whatever you want to do you know how to structure that you

[00:41:27] know how to ask for it or you know how to say like it's fine they can come to the soccer game I

[00:41:32] don't care because it just it'll lead to a much happier balance and a little bit more fulfillment

[00:41:38] and it will also keep anybody from feeling like they're not meeting expectations that aren't there

[00:41:44] okay I'm putting that in my in my hard book for sure well I appreciate it I mean

[00:41:51] what I was saying before goes for you too if something doesn't resonate you're welcome to tell me that

[00:41:55] I'm out of my mind like there's no oh my god there's no one who is not empowered to ignore advice

[00:42:02] that's like that's always the first piece of advice I send people I'm like first off ignore

[00:42:06] advice too many people are going to text you too many people are going to call you and tell you

[00:42:11] what to do ignore advice best advice let's fall off what you don't want and what you don't need

[00:42:20] that is really good advice ironically yes okay well no uh I really want you to write a book so

[00:42:28] whenever you get on top of that that'd be great also maybe consider teaching a few classes to

[00:42:33] parents to grievers in general I think that you have a really powerful weapon

[00:42:41] that has come from your shield and your coping mechanism of articulating everything and it is

[00:42:49] valiant and it is just really special it really is and I'm so honored that you do it

[00:42:56] I really am well it was a pleasure to it was a pleasure to come and talk to you this was a

[00:43:02] lot of fun and really interesting I don't know if a book is in the cards I'm not sure I have that

[00:43:07] much to say but I will I will definitely keep jumping on opportunities like this one to to share

[00:43:13] where I can and just have conversations with people I think that the more information is out

[00:43:19] there and the easier it is to find stuff like this that you can connect with or see your

[00:43:24] experience emulated in the better off we all are so again thank you so much for the

[00:43:28] opportunity and thank you for this this awesome research in this wonderful podcast that you produce

[00:43:34] oh my gosh it is literally my pleasure okay I just want one more like a laugh out loud memory

[00:43:42] that you have of ben that happens to you still today when it comes up or when you're in a place

[00:43:48] yeah okay so the the things that made ben laugh were ones that we always really hung on to

[00:43:54] and so discovering a new one was like it was like payday it was the best

[00:44:00] and I have no idea how I got to this because a lot of my time with my brother was just me

[00:44:05] sort of babbling at him and seeing what stuck and so one day in like a really sort of droney

[00:44:14] like what you imagine sort of the the the like secretary at a at an elementary school on tv

[00:44:23] does over the announcements I just went paging ben sideman mr ben sideman and he lost it

[00:44:30] 100 of the time every single time I did it for like four more years after that and it was like

[00:44:37] having this magic trick in your pocket that you could pull out whenever you needed a laugh

[00:44:41] and a smile because it was just guaranteed and I to this day I wish I knew how we got there

[00:44:48] but it is like I can kind of mumble that to myself and crack a smile because I just remember him losing

[00:44:54] it oh my gosh that's hilarious I love that I'm glad you have that it's funny it is funny the stuff

[00:45:04] that cracks these kids up man and it's more than that right like their whole body is engaged with

[00:45:11] how happy they are when something is funny or when you understand something it is like the most

[00:45:18] gratifying experience to watch every single time yep absolutely all right noa thank you so much for

[00:45:26] being my guest I can't wait for people to meet you and I'm sure we're going to hear your voice

[00:45:30] a lot more all right thank you so much you have a great day I hope you've been enjoying this

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[00:45:58] effieparks.com thank you so much for listening to the show and for supporting me along the

[00:46:04] way I appreciate y'all so much I don't know what kind of day you're having but if you need a little

[00:46:09] pick me up Ford's got you