Latest / Tom's Hirschsprung's Podcast / Episode 58 - With Courtney LF

Transcript

Episode 58 - With Courtney LF · Tom's Hirschsprung's Podcast

0:05
Speaker 1: You are listening to Tom's Hirshprung's Podcast, where our provide
0:08
Speaker 1: a look into the remarkable experiences of the most inspiring
0:11
Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
0:39
Speaker 1: episode fifty eight of Tom's Hirshprung's Podcast. I am joined
0:44
Speaker 1: by Courtney all the way from Philadelphia this afternoon.
0:48
Speaker 2: Welcome to the podcast.
0:49
Speaker 3: Courtney, Hello, thanks for having me.
0:52
Speaker 1: John, thank you so much for covering on And we
0:56
Speaker 1: are going to talk about your experiences as a mother
1:00
Speaker 1: with your son who has Hirshbrungs.
1:05
Speaker 2: And your son is.
1:05
Speaker 1: Only around one in a.
1:08
Speaker 3: Bits, is that right, just a little over one.
1:11
Speaker 1: A little over one years old, so it's still very
1:13
Speaker 1: new to the to the Hirshbrung's life, the hirshbrung parenting life.
1:18
Speaker 1: So to get your perspective on that, I think will
1:21
Speaker 1: be absolutely fascinating in the next sort of forty five
1:24
Speaker 1: minutes or so. From there, then, I guess we'll start
1:29
Speaker 1: very much from the beginning. We were talking a little
1:31
Speaker 1: bit beforehand about this no family history of Hirshbrungs, so
1:36
Speaker 1: much like myself and many others, no family history whatsoever.
1:42
Speaker 1: At what point if you take us really, I guess
1:45
Speaker 1: from the beginning, at what point did you start to
1:49
Speaker 1: maybe suspect or did doctors start to suspect that something
1:52
Speaker 1: may be a little bit different.
1:55
Speaker 2: Yeah.
1:55
Speaker 3: So we had a very interesting to our journey of
2:02
Speaker 3: being new parents and having our son, Theo. He was
2:07
Speaker 3: born on November sixth. Everything was great, and while we
2:12
Speaker 3: were in the hospital, you know, we very shortly kind
2:17
Speaker 3: of knew right away there was something going on, but
2:20
Speaker 3: we didn't know what. Just like you stated, obviously something
2:23
Speaker 3: like heirs Sprung's or anything like that was never on
2:26
Speaker 3: our radar, never anything like that. And while we were
2:29
Speaker 3: in the hospital, originally he didn't have a bowel movement,
2:34
Speaker 3: which I now know as a mom that that is
2:38
Speaker 3: something that you're supposed to have as a check off,
2:41
Speaker 3: And the hospital kind of just said it's fine, you know,
2:46
Speaker 3: he'll be fine and discharged us home on our way.
2:51
Speaker 3: We were home for only a day with our son,
2:54
Speaker 3: and we just, I guess you could just chalk it
2:56
Speaker 3: up to mom instincts where I just knew there's something
3:01
Speaker 3: going on here, and I obviously had no idea exactly
3:04
Speaker 3: what it was. We went to our pediatrician appointment and
3:08
Speaker 3: he was just he was not taking down his his formula,
3:12
Speaker 3: his milk, he wasn't having bow movements and his I
3:18
Speaker 3: don't know if everyone is familiar with the Billy Ruben,
3:21
Speaker 3: but his Billy Ruben numbers were really high. So what
3:23
Speaker 3: billy Ruben is is essentially when you first have a
3:26
Speaker 3: bow movement when a baby is born, it's basically the
3:30
Speaker 3: toxins coming out of your body. It's very common for
3:34
Speaker 3: newborn babies to have a higher number of bill of
3:36
Speaker 3: Billy Ruben. And what they'll do is kind of put
3:39
Speaker 3: you under a light, which kind of just brings your
3:43
Speaker 3: numbers back back down it will, you know, And that's
3:48
Speaker 3: that's pretty much what they do in the hospitals. His
3:50
Speaker 3: Billy Ruben's number was really high because he had never
3:53
Speaker 3: actually had a bow movement of these toxins. So they
3:56
Speaker 3: actually brought us back to the hospital with the thought
4:00
Speaker 3: of taking care of this Billy Rubin. Now. I kept
4:05
Speaker 3: saying to them, I'm confused, though he's here, he's been
4:09
Speaker 3: you know, on this earth now for five days and
4:11
Speaker 3: still hasn't had a bowel movement. That seems like really
4:14
Speaker 3: not Okay. I'm not a doctor, I'm not a nurse.
4:17
Speaker 3: But to me, that just sounds like something that probably
4:21
Speaker 3: should have happened by now. I was with my husband.
4:23
Speaker 3: We kept saying that, and what I was told in
4:26
Speaker 3: the hospital was you're just a nervous, hormonal mom. He's fine,
4:33
Speaker 3: he just needs to go under the lights and he
4:35
Speaker 3: will be fine, and you're just not feeding him enough.
4:40
Speaker 3: So I was said, Okay, well I will continue to
4:43
Speaker 3: feed him while we are here, and they told me
4:46
Speaker 3: I should be feeding him an ounce every hour while
4:49
Speaker 3: he was in the hospital. So we tried to do that,
4:54
Speaker 3: and he would vomit up the milk that we were
4:58
Speaker 3: giving him. So I said, well, he's vomiting every time
5:01
Speaker 3: I'm trying to feed him, you know what is going on.
5:04
Speaker 3: And they said, that's not vomit, that's just spit up.
5:07
Speaker 3: You're just nervous, You're hormonal. They told me this several times. Now,
5:12
Speaker 3: I do work in healthcare, so I knew that, although
5:15
Speaker 3: I was getting very agitated, that I needed to just
5:18
Speaker 3: stay calm because they had already tagged me as this
5:22
Speaker 3: mom who's just a nervous new mom who's going to
5:25
Speaker 3: freak out at every little, you know, every little thing
5:28
Speaker 3: that happens So that continued throughout the first twenty four
5:33
Speaker 3: hours of us being in the hospital. I would feed him,
5:35
Speaker 3: he'd vomit. I'd feed him, he vomit. They kept telling
5:37
Speaker 3: me it's just spit up, until the next morning it
5:40
Speaker 3: turned green. So I called the doctors in and I said,
5:43
Speaker 3: excuse me, I think this is bile now. I don't
5:46
Speaker 3: think that this is just you know, spit up or vomit.
5:50
Speaker 3: And they told me that, no, Mom, that's just from
5:53
Speaker 3: your breast milk. So I was very confused because, you know,
5:57
Speaker 3: again I'm not a doctor, but my breast milk wasn't
6:01
Speaker 3: so you know, I got it. I'm not sure. I
6:04
Speaker 3: was like, I feel like I would notice that, but
6:06
Speaker 3: you know, I'm a new mom here, so maybe this
6:08
Speaker 3: is common. So that continued on for the first forty
6:13
Speaker 3: eight hours of us in the hospital. You know, I
6:15
Speaker 3: felt like we just kept saying, this doesn't seem right,
6:17
Speaker 3: this doesn't seem right. And we finally got them to
6:21
Speaker 3: agree to get the gastrointonologists involved and to do some
6:25
Speaker 3: further checking. So when they brought him down to do
6:28
Speaker 3: the original check, so what they'll do is they put
6:31
Speaker 3: the bag of fluids in and they you know, will
6:35
Speaker 3: fill up his lower intestine so they can do the scan. Now,
6:39
Speaker 3: when you think about the fact that this is day
6:42
Speaker 3: seven of him being on earth, he had still not
6:45
Speaker 3: had a bowel movement. They were still forced feeding him
6:48
Speaker 3: this whole time, and now they just filled this little
6:52
Speaker 3: baby up with a bag full of liquid. As we
6:57
Speaker 3: were sitting there waiting for this to show us what
7:00
Speaker 3: they were going to be looking for, he ended up
7:04
Speaker 3: projectile vomiting his own feces. His eyes rolled in the
7:09
Speaker 3: back of his head. It was very thick, tar like.
7:12
Speaker 3: He started choking, he turned blue, and we obviously were
7:19
Speaker 3: demanding to get a physician in to see what was
7:21
Speaker 3: going on. I asked them to put a sub pump
7:24
Speaker 3: in him, which they did do and it filled up immediately.
7:30
Speaker 3: I asked them to be at this point, they weren't
7:32
Speaker 3: checking his vitals, they weren't doing anything in the hospital
7:36
Speaker 3: except putting him under the lights. So my husband and
7:39
Speaker 3: I were there just basically awake at this point for
7:41
Speaker 3: you know, seventy two hours, because we were just monitoring
7:45
Speaker 3: him all the time. I had just given birth, so
7:49
Speaker 3: I was in a lot of pain personally, and that's
7:54
Speaker 3: when they actually really started to take us serious that, oh, okay,
7:58
Speaker 3: maybe there is something more going on here. At that point,
8:02
Speaker 3: I just realized that where we were probably wasn't capable
8:06
Speaker 3: to truly handle what was going on. So we started
8:10
Speaker 3: to ask if we could be transferred to another hospital,
8:13
Speaker 3: and that hospital was the Children's Hospital of Philadelphia, which
8:18
Speaker 3: is I'm sure you know a lot of people on
8:21
Speaker 3: this podcast have heard of this hospital. It's a wonderful,
8:23
Speaker 3: wonderful place. They had told us that the Children's Hospital
8:28
Speaker 3: will not accept us because they only take rare cases
8:32
Speaker 3: and my son should be fine. So I said, okay,
8:36
Speaker 3: that's great, but I would love for you to still
8:38
Speaker 3: just put out, you know, reach out to them and
8:40
Speaker 3: let them decide if they want to take us or not.
8:44
Speaker 3: So when they did do that, Children's Hospital got back
8:48
Speaker 3: to them within the hour and said, we will one
8:50
Speaker 3: hundred percent take this child. We're sending our nick you
8:53
Speaker 3: team out to the hospital. So we were in New
8:55
Speaker 3: Jersey and they sent their entire nick You nurse and
8:59
Speaker 3: team to pick up my son. The first thing they
9:04
Speaker 3: said is why is this this seven day old child
9:07
Speaker 3: not in the nick you Why is he on the
9:08
Speaker 3: pediatric floor, which was something I had asked for several times,
9:12
Speaker 3: but they told me, because we were discharged for a day,
9:16
Speaker 3: he can't be in the nick you. He was six
9:20
Speaker 3: days old. I mean, if that doesn't qualify as a
9:22
Speaker 3: nick you, I'm not sure what does. But and we,
9:27
Speaker 3: you know, learned to find out there that the IV
9:30
Speaker 3: that we had asked them to put in, the sub
9:32
Speaker 3: pump that we had asked them to put in, everything
9:34
Speaker 3: was put in wrong. The nick you nurse had to
9:37
Speaker 3: basically redo everything, and we followed the ambulance from New
9:43
Speaker 3: Jersey to chop They brought him into their nick you
9:48
Speaker 3: and very quickly they could tell by the signs that okay,
9:54
Speaker 3: right away. We were there for not even a couple hours,
9:58
Speaker 3: and they brought up this word hirschprunks to us and
10:01
Speaker 3: we were very like, I'm sorry, what how do you
10:05
Speaker 3: spell that? What is this word? I've never heard of
10:07
Speaker 3: this in my entire life. And they began to say,
10:11
Speaker 3: you know, we're not sure. We're going to do a
10:12
Speaker 3: test to see, but based on everything you're saying, based
10:15
Speaker 3: on what we're seeing, this is what we think is
10:18
Speaker 3: what he has. They did also tell us, after doing
10:23
Speaker 3: further scans there that the direct wording from the team
10:29
Speaker 3: there was thank god you got him here when you did,
10:32
Speaker 3: because his organs were seconds away of bursting and he
10:35
Speaker 3: wouldn't have made it. And I remember looking at my
10:39
Speaker 3: husband while we were in the first hospital hospital and
10:42
Speaker 3: I said to him, I just had this true feeling
10:46
Speaker 3: of dread, you know, and I was like, he's going
10:49
Speaker 3: to die if we don't get him out of this hospital.
10:52
Speaker 3: He is going to die. And my husband at the
10:54
Speaker 3: time was like, Oh, don't put that into the universe
10:57
Speaker 3: like and to me, I felt like it was almost
10:59
Speaker 3: just this needs to be said, that this is very serious,
11:04
Speaker 3: that this isn't just something that we need to At
11:07
Speaker 3: this point, I felt like it was my obligation to
11:10
Speaker 3: protect my son and to protect my family. And unfortunately,
11:15
Speaker 3: you know, again this is not saying for all health care.
11:18
Speaker 3: I work in health care. There's a lot of amazing people,
11:21
Speaker 3: but sometimes you really just have to trust that instinct
11:25
Speaker 3: and sometimes you really really just have to know that, yes,
11:30
Speaker 3: there are people that are you know, going to listen,
11:33
Speaker 3: and there's people that have a one tracked mind and
11:35
Speaker 3: they're just going to go on the course that they
11:38
Speaker 3: think is this is what we need to do. And
11:40
Speaker 3: if there is something inside screaming at you that there
11:43
Speaker 3: is something wrong. You need to voice it, and you
11:46
Speaker 3: need to advocate for yourself. My job as a mother
11:50
Speaker 3: was to advocate for my son because he couldn't advocate
11:53
Speaker 3: for himself. And I thank God every day that I
11:58
Speaker 3: listened to that little voice in my head because as
12:00
Speaker 3: our outcome would have been very, very very different if
12:03
Speaker 3: we stayed in that original hospital because of the the
12:09
Speaker 3: level of what he went through in those first week
12:13
Speaker 3: of life, they really couldn't do much for him at
12:16
Speaker 3: that time. He needed time to for his organs to
12:20
Speaker 3: settle and rest. So what they did was in the
12:23
Speaker 3: hospital they did some irrigations to kind of help clear
12:27
Speaker 3: him out, and then they put a pick line in
12:30
Speaker 3: him and he once they got the results back that
12:34
Speaker 3: it was in fact hers Sprung's, we had to wait
12:38
Speaker 3: in the hospital for quite a while because he was
12:41
Speaker 3: just far too weak, far too little for them to
12:44
Speaker 3: truly be able to, you know, do much for him
12:51
Speaker 3: at that time. Once he got the strength up, they
12:54
Speaker 3: did do a surgery where he came out with a
12:56
Speaker 3: class to be bagged, and they did that that first step. Now,
13:02
Speaker 3: as a new parent sitting in a hospital already kind
13:06
Speaker 3: of went through this very traumatizing situation. My husband and
13:12
Speaker 3: I were living in the sleep rooms at chop. We
13:14
Speaker 3: just had the clothes on our back and maybe like
13:16
Speaker 3: two other clothes. They had a laundry room there. We
13:18
Speaker 3: were just cleaning our clothes there and just would be
13:21
Speaker 3: in the nick you all day. Every morning we would
13:24
Speaker 3: turn the lights on, we'd play music, and we would
13:26
Speaker 3: just sing and try to bring happiness to this little
13:29
Speaker 3: Nicku room, to our little baby as much as we could.
13:34
Speaker 3: But I remember when he came out of that first
13:35
Speaker 3: surgery with the cloths to me bag, and there was
13:39
Speaker 3: just so much contradictory feelings As a mom, one feeling
13:46
Speaker 3: was oh my God, like thank God, he's okay, he's alive,
13:51
Speaker 3: he's here, he had this surgery. Then the other one
13:54
Speaker 3: was looking at this closs three bag like, oh my god,
13:57
Speaker 3: what do I do with this? Like how like what
14:00
Speaker 3: is this?
14:01
Speaker 2: What is this?
14:01
Speaker 3: Like I thought I had to handle diapers, you know,
14:04
Speaker 3: it was such a And then you're just you know,
14:07
Speaker 3: thinking like what how what how do I dress him?
14:10
Speaker 3: How do I change him? How do I do all
14:12
Speaker 3: of these things? Like there was just so many questions
14:14
Speaker 3: of just what do I do who do I? I like,
14:18
Speaker 3: you know, what what do we do? I I can't
14:21
Speaker 3: talk to any of my friends. I can't, you know,
14:24
Speaker 3: and the and then you had this sense of why me,
14:27
Speaker 3: why my son? Why us? And you feel guilty having
14:31
Speaker 3: this feeling because you think it could have been so
14:35
Speaker 3: much worse. He could have he could have not been
14:36
Speaker 3: here with us, and I thank God that he's here.
14:39
Speaker 3: But then yet there's this other part of me of
14:42
Speaker 3: he's my first the first grandchild on my side of
14:45
Speaker 3: the family, and my whole family was going through this,
14:49
Speaker 3: my whole family, Like I just felt like what I
14:51
Speaker 3: was putting everyone through? Like that mom guilt started coming in,
14:55
Speaker 3: like what did I do wrong? Like you know, you
14:57
Speaker 3: start going back through every single step of every thing
15:00
Speaker 3: you could, you know, everything you could have done differently.
15:02
Speaker 3: And I know logically, logically, oh that it's a genetic disorder,
15:07
Speaker 3: which we learned while we were there. I learned that
15:10
Speaker 3: really there was nothing you could do. It. It was
15:12
Speaker 3: going to happen regardless. I had a stellar pregnancy, I
15:18
Speaker 3: worked out the whole time. I ate really healthy, you know,
15:22
Speaker 3: and I just you still even still think, oh my god,
15:26
Speaker 3: I must have done something wrong. Because look at this
15:29
Speaker 3: poor little baby. Look at this poor little boy that
15:32
Speaker 3: I brought into this world going through what he's going through.
15:35
Speaker 3: And then you throw in that we're in a nicu
15:37
Speaker 3: in chop where a lot of people are there for
15:41
Speaker 3: months years, the babies in their rooms that were in
15:45
Speaker 3: their other rooms by us, I mean they that was
15:48
Speaker 3: their rooms, that was their nursery. It was filled with
15:50
Speaker 3: toys and furniture. And you know, you're sitting there and
15:55
Speaker 3: there's this this feeling of I feel so lucky because
15:59
Speaker 3: I know, be worse because I'm looking around in a
16:02
Speaker 3: place where people are dealing with so much harder things
16:07
Speaker 3: for their children and have been here for years or months.
16:09
Speaker 3: Six months baby was there that was on their fifteenth
16:13
Speaker 3: surgery and they were still trying to figure out what
16:15
Speaker 3: was going wrong right across the hall from us. So
16:18
Speaker 3: it's like you have these feelings of you live in
16:21
Speaker 3: this world now where you're actually very fortunate compared to
16:25
Speaker 3: a lot of the people around you, and yet you
16:28
Speaker 3: still feel a sense of why me? And you still
16:31
Speaker 3: see your friends on social media who have these children
16:34
Speaker 3: and everything's fine. And a couple of my friends had babies,
16:38
Speaker 3: just a couple of weeks after me and happy, healthy,
16:41
Speaker 3: and you start feeling like in those days, resentment, right,
16:48
Speaker 3: like of just it's not that you would ever wish
16:50
Speaker 3: anyone to have anything like this, of course, or go
16:54
Speaker 3: through this, but yet you think, I'm like, we're alone
16:59
Speaker 3: in this and no one understands. So you know, I
17:03
Speaker 3: had my time. I had my time when I was
17:06
Speaker 3: alone where I felt very angry and sad and cried.
17:10
Speaker 3: But I never ever would in front of my son
17:12
Speaker 3: because even though at that time when he had his
17:15
Speaker 3: first surgery, his first surgery, he came out of the
17:18
Speaker 3: book clost to me with the Class B bag. He
17:20
Speaker 3: was fifteen days old. And even though he was just
17:23
Speaker 3: this little, this little boy just sitting in the bed,
17:25
Speaker 3: I knew I'm his mom. We're tied, and if I'm
17:29
Speaker 3: feeling this, he'll feel it. And I don't want him
17:31
Speaker 3: to ever feel anything. But you know, just my love
17:36
Speaker 3: and happiness, and you know, so when we were in
17:39
Speaker 3: that room with him, it was nothing just this is
17:42
Speaker 3: our normal, this is love, and you know we Unfortunately
17:46
Speaker 3: I wasn't able to hold him because even after he
17:50
Speaker 3: had the surgery, they had to keep the pick line in,
17:53
Speaker 3: they had to keep all these things, so you know,
17:55
Speaker 3: we weren't able to really hold him for a while
17:58
Speaker 3: until he stronger, and you know, he just was. I
18:07
Speaker 3: just was watching him go through this. He had this
18:10
Speaker 3: major stomach surgery, and it felt like only a few
18:13
Speaker 3: days in he was he was doing really well, Like
18:16
Speaker 3: he was just he was, you know, hitting all his
18:20
Speaker 3: milestones and you know, doing all the things he was
18:22
Speaker 3: supposed to do. I'm getting stronger with the pickline. And
18:27
Speaker 3: one thing I'll say as a proud mom is throughout
18:29
Speaker 3: this entire process, from when he was being borderline tortured
18:34
Speaker 3: in the first hospital right and going through everything he
18:37
Speaker 3: was going through to being transferred to going through this
18:40
Speaker 3: eight hour surgery that he was under and all of
18:42
Speaker 3: these things, his heart, his everything always stayed perfect, never dropped, never,
18:49
Speaker 3: nothing ever. And I think to myself, you know, I
18:55
Speaker 3: was so adamant about staying healthy during my pregnancy, and
18:59
Speaker 3: I wonder if there was just something inside that internal
19:03
Speaker 3: mother knowing that like he needs to have all of
19:06
Speaker 3: the resources he possibly can because he needs to be
19:09
Speaker 3: strong when he first comes into this world. And he
19:13
Speaker 3: was so strong, and I was so proud, like so
19:16
Speaker 3: beyond proud of him, and that is what really pushed
19:20
Speaker 3: me through all of those other not so great feelings,
19:25
Speaker 3: the resentment, the anger, the why me, the self pity,
19:28
Speaker 3: all of that things that happened. But like I looked
19:31
Speaker 3: at this little boy and was just like he's the
19:34
Speaker 3: one going through this right now, Like how you know
19:36
Speaker 3: what I mean? Like how like look at this boy.
19:38
Speaker 3: You just had major stomach surgery. I've never even had
19:40
Speaker 3: a surgery and he's thriving, Like who are you right
19:44
Speaker 3: now to be doing anything but just be proud of him?
19:48
Speaker 3: So you know that's you know, we were there for
19:51
Speaker 3: about a little like two months about and chop, and
19:56
Speaker 3: you know then I kind of just got through the
19:59
Speaker 3: stop stop. You know, this is your life now and
20:02
Speaker 3: you kind of have to just go with it and
20:05
Speaker 3: be I will be the best colostomy bag changer that
20:09
Speaker 3: there will ever be. And I had my husband with
20:12
Speaker 3: me through it. We took all of these classes at shop.
20:16
Speaker 3: We jumped right in, told the nurses and doctors and
20:20
Speaker 3: the wound care team like nope, we're doing it, like
20:22
Speaker 3: you just watch us. We're gonna do it. We're going
20:25
Speaker 3: to figure this out because you're not going to be
20:26
Speaker 3: at home with us when we get home and this
20:29
Speaker 3: will still be here and we can either run from
20:33
Speaker 3: it or we can dive right into it, because this
20:36
Speaker 3: is our new normal and that's just it. It is what
20:39
Speaker 3: it is. And let me tell you, I'm really glad
20:42
Speaker 3: we did that because even with all of that, when
20:44
Speaker 3: we first got home, that coloss to of me bag
20:49
Speaker 3: was pretty very very challenging Tom very challenging. The first
20:53
Speaker 3: couple of days we were home, it s fell off.
20:56
Speaker 3: Oh my gosh. I feel like the first week we
20:59
Speaker 3: were home with him, it had to have fallen off
21:02
Speaker 3: like five times a day. And I called Chop and
21:04
Speaker 3: was like, you need to send me more materials because
21:06
Speaker 3: we are running through this, like we don't know what's
21:09
Speaker 3: going on in the bag is just not staying and
21:12
Speaker 3: I don't know what to do, and you know, it
21:16
Speaker 3: was very you know, you kind of had to laugh
21:18
Speaker 3: sometimes of just like what is like what is our
21:24
Speaker 3: life right now? Like you know, we're just we're changing cossomies.
21:28
Speaker 3: And for everyone who's gone through this, especially who maybe
21:32
Speaker 3: have cost Me bags still adult cosmy bags are very
21:35
Speaker 3: different than baby cost Tom bags. There's a lot more
21:38
Speaker 3: steps and there's also the fact that you know, all
21:42
Speaker 3: parents out in here, can you know, uh acknowledge diaper
21:46
Speaker 3: rashes or something we always want to try to not
21:49
Speaker 3: have happened, so that same thing applies with a cost
21:53
Speaker 3: to me bag. You can't have the diaper rash on
21:56
Speaker 3: where their coostomy site is, so there's just so many
22:00
Speaker 3: steps to making sure that it's still protecting the skin.
22:04
Speaker 3: Everything's good. It took a solid month and a half
22:10
Speaker 3: to really start getting the hang of, you know, finding
22:14
Speaker 3: our own little quirks, you know, turning the stove on
22:17
Speaker 3: and getting our hands warm so we could put stuff
22:19
Speaker 3: on the site to keep it nice and warm so
22:21
Speaker 3: it would melt in the skin good. And having all
22:24
Speaker 3: these certain lights, and our families would come over and
22:26
Speaker 3: watch my husband and I like just spring into action,
22:30
Speaker 3: like all right, time to change the bag, so you
22:34
Speaker 3: know it when we and then we were like, you know,
22:37
Speaker 3: we just went through this thing that no one understands,
22:39
Speaker 3: you know, none of our friends, none of this. But
22:41
Speaker 3: like we're not going to live at home and fear,
22:43
Speaker 3: We're not going to not let him see things and
22:46
Speaker 3: do things. He just spent his first few months in
22:49
Speaker 3: a windowless nick Q. I'm a big firm believer of
22:53
Speaker 3: fresh air outside doing those things. And it doesn't matter
22:58
Speaker 3: how much I'm struggling, because I'm his mom and I
23:01
Speaker 3: need to. It's my responsibility to show him the world.
23:05
Speaker 3: It's my responsibility to not let him feel that this
23:09
Speaker 3: is going to label him that he can't do anything
23:13
Speaker 3: that he wants to do. And I know he's only
23:16
Speaker 3: a couple months old, but I want to start this now.
23:18
Speaker 3: I want this to be you know, he's still a
23:21
Speaker 3: baby living a normal life. He just has a cost
23:24
Speaker 3: me bag who cares and honestly saved a lot of
23:27
Speaker 3: money on diapers for a long time, it really did,
23:31
Speaker 3: so you know it was, uh, you know that was
23:34
Speaker 3: a little a little positive in it. And you know,
23:37
Speaker 3: we started just taking him out and doing things and
23:40
Speaker 3: going for walks and you know, being out in the
23:42
Speaker 3: fresh air and taking him to aquariums, and you know,
23:45
Speaker 3: there were times where his bag fell off in public
23:48
Speaker 3: and we were like, okay, we have to go home.
23:50
Speaker 3: And there was times where we would get upset about it,
23:52
Speaker 3: but we kept doing it. We kept trying to do
23:54
Speaker 3: those things because it was important. Mixed in with going
23:59
Speaker 3: back and forth to chill the Hospital of Philadelphia all
24:01
Speaker 3: the time, right, there's this sense of the hardest thing
24:05
Speaker 3: I had during this time period was knowing another surgery
24:09
Speaker 3: was coming, but we didn't know when, knowing we had
24:14
Speaker 3: to live through it again, knowing we had to go
24:16
Speaker 3: back to the hospital again. It wasn't even the colostomy
24:19
Speaker 3: bag for me anymore at that point, because that was
24:21
Speaker 3: just our normal and we became very accustomed to doing it.
24:26
Speaker 3: It was more of this impending doom of my son
24:31
Speaker 3: has to go through surgery again, and I have no
24:34
Speaker 3: idea when that's going to be. And every time we
24:37
Speaker 3: went to Chop and met with his surgical team, they
24:41
Speaker 3: would look to see what was going on, how his
24:43
Speaker 3: ostomey was doing, how he was growing, because that was
24:47
Speaker 3: his biggest thing because of how he started his life off.
24:51
Speaker 3: They really needed to make sure that he could grow
24:55
Speaker 3: and get strong enough to be able to endure this
24:58
Speaker 3: next surgery. What we found out during this time was
25:04
Speaker 3: Theo's case was more severe than the average, where they
25:08
Speaker 3: had to remove more than half of his colon. Luckily,
25:12
Speaker 3: there was enough that they were going to be able
25:14
Speaker 3: to do the pull through surgery, but there was so
25:18
Speaker 3: much that was taken off that they weren't going to
25:21
Speaker 3: be able to do it in the traditional way where
25:23
Speaker 3: they could just bring it right down, you know, and
25:26
Speaker 3: just attach it inside and you know, beyond your merry way.
25:32
Speaker 3: Because of how much was taken out, they were going
25:34
Speaker 3: to have to basically flip all of his organs around
25:38
Speaker 3: in order to make it that there was enough room
25:42
Speaker 3: to actually have it reach where it needed to go.
25:45
Speaker 3: So it was going to be a very very intensive
25:50
Speaker 3: surgery for him that was going to be much longer
25:52
Speaker 3: than the first surgery. So they really needed to monitor
25:57
Speaker 3: his strength and his growth because they needed this space,
26:00
Speaker 3: like they physically needed space to be able to do
26:03
Speaker 3: this inside. So that's like the way they kept explaining
26:07
Speaker 3: it to us. So every time we would go back,
26:10
Speaker 3: you know, it's not that I wanted to rush the surgery.
26:12
Speaker 3: I just wanted to know when. I just wanted to
26:14
Speaker 3: know when it was going to be. Is it going
26:16
Speaker 3: to be a year from now, is it going to
26:17
Speaker 3: be next week?
26:18
Speaker 2: Is it? Like?
26:19
Speaker 3: Just when is it going to be? Because the not
26:20
Speaker 3: knowing was killing me. It just felt like I was
26:24
Speaker 3: living in a world where everything was paused. There was
26:29
Speaker 3: no healing, there was no getting through this because we
26:34
Speaker 3: weren't through it yet. We were we were living it
26:37
Speaker 3: still and there was no healing until this second surgery happened,
26:41
Speaker 3: because that's that's what needed to be done. So I
26:47
Speaker 3: really started as a mom just really struggling with just
26:53
Speaker 3: you know, I didn't go back to work. You know,
26:55
Speaker 3: we we weren't able to provide. You know, we had
26:58
Speaker 3: support from our families and a lot of ways, but
27:01
Speaker 3: no one felt comfortable really watching him because no one
27:04
Speaker 3: knew how to handle changing the cloths to me bag,
27:06
Speaker 3: and you know, they were afraid to. And I understood
27:11
Speaker 3: that because it's scary to look at when you don't
27:13
Speaker 3: see it all the time. I'd grown to thought to
27:17
Speaker 3: think that it was actually very cute. He had this cute,
27:19
Speaker 3: little cute little stoma. It was like shaped like a heart,
27:22
Speaker 3: and I just looked at it as this, this little
27:25
Speaker 3: soma saved his life. He wouldn't be here if it
27:27
Speaker 3: wasn't for this, and that's how I looked at it.
27:29
Speaker 3: But I also understood that for our families it was scary.
27:33
Speaker 3: You know, it was a scary thing to see and
27:35
Speaker 3: it's not something that people talk about. So it was
27:40
Speaker 3: really my husband and I that had to go through this,
27:43
Speaker 3: and a lot was honest and I thank God for him.
27:46
Speaker 3: I thank God for his support and his strength. My
27:49
Speaker 3: husband's a very patient, calm man. I'm very go go
27:54
Speaker 3: go and plan everything. You know. He really kept me,
27:58
Speaker 3: you know, calm, through a lot. We stayed strong together.
28:02
Speaker 3: We knew this is either going to make us or
28:04
Speaker 3: break us, and we needed to stay together because it
28:08
Speaker 3: was for our son and we needed to work through
28:10
Speaker 3: this together. And no one in the world understood how
28:13
Speaker 3: I felt more than him. And he was a wonderful
28:18
Speaker 3: man enough to know I'm feeling this. You gave birth
28:21
Speaker 3: to him, like you went through everything you went through,
28:25
Speaker 3: You were in diapers in the hospital, Like how strong
28:28
Speaker 3: are you that you were going through all of these things?
28:31
Speaker 3: And you you didn't even get to acknowledge that you
28:35
Speaker 3: went through childbirth, Like you didn't even get to like
28:38
Speaker 3: celebrate well. And he had said that, and I remember
28:42
Speaker 3: one day he just sat down at dinner and looked
28:44
Speaker 3: and said, you know, I want to tell you what
28:46
Speaker 3: I saw when you went through childbirth and how proud
28:48
Speaker 3: I was of you, because we realized we never talked
28:50
Speaker 3: about it. We never talked about this major life thing
28:53
Speaker 3: that a couple goes through, because it just became survival
28:57
Speaker 3: mode of saving our son. That we never even talked
29:00
Speaker 3: about it, and it was very beautiful to know that
29:06
Speaker 3: he saw me in that light and was able to
29:08
Speaker 3: acknowledge that I went through this. But I did realize
29:13
Speaker 3: that I just needed more support with what I was
29:16
Speaker 3: going through, and I started to go with therapy. I
29:19
Speaker 3: started going on medication for anxiety because I was having severe,
29:25
Speaker 3: severe panic attacks all the time, waking up at two
29:30
Speaker 3: o'clock in the morning in February, going outside, feeling like
29:33
Speaker 3: I couldn't breathe. And I knew that so much of
29:37
Speaker 3: it was just stemming from waiting, waiting for this next step,
29:40
Speaker 3: and also knowing how intensive the surgery was going to be,
29:45
Speaker 3: and not knowing what the outcome was going to be.
29:48
Speaker 3: And the surgeon himself said that the level of what
29:51
Speaker 3: he had to do he had only done a few times,
29:56
Speaker 3: and he had done hundreds and hundreds and hundreds of
29:59
Speaker 3: her sprung surgeries. He was the head surgeon at chop
30:04
Speaker 3: that ran this team for this surgery, and even still
30:08
Speaker 3: he had only done this on a few and they
30:10
Speaker 3: were also older children, So that you know that fear
30:16
Speaker 3: was there, that fear of just what's gonna happen, you know.
30:23
Speaker 3: And after all of that, of months and months and
30:25
Speaker 3: months of visiting Chop, going through all of this, the
30:28
Speaker 3: panic attacks, this and that, we finally got the date
30:31
Speaker 3: of when he was going to have his surgery. It
30:33
Speaker 3: was May thirty first, and he had his next surgery.
30:40
Speaker 3: Was over ten hours long. The longest day of my life,
30:45
Speaker 3: the party life. We just sat outside and just sat
30:51
Speaker 3: at this park bench across from the hospital and just
30:54
Speaker 3: prayed and talked, and as scared as I was, I
30:57
Speaker 3: had this like true like feeling that I knew he
31:01
Speaker 3: was going to be okay, Like I knew he's in
31:02
Speaker 3: the best place he could be in we went through
31:05
Speaker 3: what we went through. In the beginning, I knew how
31:07
Speaker 3: strong he was. He's already proven that, so I don't,
31:10
Speaker 3: I can't. I'm not going to doubt him. I know
31:12
Speaker 3: he's strong enough to go through this. And he did.
31:16
Speaker 3: He made it through, and it was not that great
31:21
Speaker 3: at first, wasn't successful. He he really his body. It
31:29
Speaker 3: was really really hard on his body, and they couldn't
31:32
Speaker 3: tell if it was going to take and unfortunately, you know,
31:35
Speaker 3: the surgeon, he was incredible. His surgeon's so credible, so meticulous,
31:40
Speaker 3: so planning for everything, and the surgery excel itself was successful.
31:45
Speaker 3: But he told us it's about time. We have to
31:49
Speaker 3: wait and see. You know, we have to wait and
31:51
Speaker 3: see if all the organs are going to turn back
31:53
Speaker 3: on and do what they're supposed to do. And that's
31:55
Speaker 3: really just that's what it is. We just have to wait.
31:58
Speaker 3: It's up to THEO now. And and you know, he
32:02
Speaker 3: was vomiting in this and that, and you know, those
32:06
Speaker 3: first few days were a lot of stepbacks, a lot
32:09
Speaker 3: of fear, and I remember just like thinking, oh my goodness,
32:14
Speaker 3: like what did I do? Like should we have done
32:16
Speaker 3: this second surgery? Like like you know, you just start
32:19
Speaker 3: second guessing everything, and you know, he was it was
32:23
Speaker 3: day seven we were there. He was still throwing up,
32:26
Speaker 3: still hadn't gone to the bathroom, and his you know,
32:31
Speaker 3: the surgeon came in and was like, Okay, you know,
32:33
Speaker 3: we're just going to keep monitoring, but you know, once
32:35
Speaker 3: we hit a certain day, you know, we may have
32:37
Speaker 3: to go back in and see what's going on. And
32:41
Speaker 3: I just took these prayer cards and I put them
32:44
Speaker 3: on his stomach and I just we just started praying, praying, grank, praying,
32:48
Speaker 3: like come on, baby, just give us something. I never
32:51
Speaker 3: prayed for poop more in my life, but that what
32:56
Speaker 3: it told me ten years ago, that you're gonna be
32:59
Speaker 3: praying for about movement like I would just think you're crazy.
33:05
Speaker 3: And just out of nowhere, it worked that moment, like
33:10
Speaker 3: just out of nowhere, just something turned on. I was
33:13
Speaker 3: holding him and I thought I smelled something, and I
33:18
Speaker 3: said to my husband, like, I think he might have
33:20
Speaker 3: had a bowel movement. He ran out and got the nurse,
33:22
Speaker 3: and right away the team came in. They're like, all right,
33:24
Speaker 3: let's see, like, let's not get our hopes up, you know,
33:27
Speaker 3: And there it was, and I cried tears of joy.
33:32
Speaker 3: My husband cried every I mean, this whole team has
33:35
Speaker 3: been with us through all of this. We cried so
33:39
Speaker 3: hard over this dirty diaper. And I can cry right
33:45
Speaker 3: now even thinking about it. And I think to myself,
33:49
Speaker 3: what a thing that every pound in the world has,
33:53
Speaker 3: every pound in the world has dirty diapers? Yeah, and
33:56
Speaker 3: thing you take for granted, right like just a small
34:00
Speaker 3: a thing that you get home. You're just in it.
34:03
Speaker 3: You have a child, you're newborn stages. They're crying, they're this,
34:06
Speaker 3: they're you know, going to the bathroom. You're changing hundreds
34:09
Speaker 3: of diapers every week, and you're so lucky that you can,
34:14
Speaker 3: because not everybody has that and not and I just
34:18
Speaker 3: was just wanting that normalcy, just wanting that diaper, you know.
34:24
Speaker 3: And after that, things just really clicked. You know. We
34:27
Speaker 3: stayed there for a little while, made sure everything was good,
34:31
Speaker 3: and oh my goodness, was this boy just amazing, amazing
34:35
Speaker 3: he did it. You know, we got we got home
34:38
Speaker 3: and you know, of course there was fear in the beginning,
34:41
Speaker 3: and you know, making sure everything was okay. He did
34:45
Speaker 3: have a couple setbacks, you know, because I'm sure everyone is,
34:49
Speaker 3: you know, who is aware of hirsprungs, there is that
34:51
Speaker 3: chance that you can get that fatal infection within the
34:55
Speaker 3: first five years, especially so being closely monitored. We're still
34:59
Speaker 3: very much that he did almost get that infection. Back
35:03
Speaker 3: over in the summer. We ended up back in the
35:05
Speaker 3: hospital where they monitored and made sure everything was good.
35:09
Speaker 3: But he's been amazing ever since. It is January of
35:13
Speaker 3: twenty twenty five. He was born in twenty twenty three.
35:18
Speaker 3: Twenty twenty four was the hardest year of our entire lives.
35:22
Speaker 3: But let me tell you and everyone how much he
35:25
Speaker 3: is thriving. We just it. You know, when I look
35:30
Speaker 3: back and I thought I will never get through this.
35:32
Speaker 3: I cannot get through this year. I can't. And I
35:35
Speaker 3: look back now and it's like what we all went through,
35:38
Speaker 3: what he all went through, And instead of living in fear,
35:42
Speaker 3: I am just determined to show him everything. We took
35:47
Speaker 3: him to Switzerland. It's our favorite place and we always
35:54
Speaker 3: said if we ever have a child, we're taking them here.
35:57
Speaker 3: And we got clearance from his surgical team were like, listen,
36:01
Speaker 3: he's been good. We really really really want to go
36:05
Speaker 3: somewhere and just celebrate health and happiness. And we know
36:09
Speaker 3: he's little, but also like like, let's just do it.
36:12
Speaker 3: And they gave us the clearance, they gave us all
36:14
Speaker 3: the equipment we needed just in case. They gave us
36:16
Speaker 3: our notes. We took him to Switzerland. We had the
36:19
Speaker 3: most amazing trip in the world. You know, we got
36:23
Speaker 3: to celebrate the holidays at home this year. You know,
36:26
Speaker 3: the holidays the first year he was with us, we
36:28
Speaker 3: were in the hospital. So even something as little as
36:31
Speaker 3: watching the Thanksgiving Day parade at home in our pjs
36:34
Speaker 3: instead of in a Nikyu. All of these little moments
36:39
Speaker 3: of just just feelings like so every day, every day
36:45
Speaker 3: with him is a gift. I don't take for granted,
36:49
Speaker 3: every any little moment with him, every second of the day.
36:53
Speaker 3: I know that my life would have never been the
36:55
Speaker 3: same if he wasn't here. I think he's a He
36:58
Speaker 3: reminds us every day to just and he's the happiest
37:01
Speaker 3: little boy. He's the happiest little boy. He loves to
37:04
Speaker 3: go out. He loves food. He just had rackal lay
37:08
Speaker 3: on the other night. He loves salmon and sushi and
37:10
Speaker 3: all the things. He eats everything. And I think, you know,
37:14
Speaker 3: I don't want to be afraid to give him this stuff.
37:15
Speaker 3: I don't want him. He is an extraordinary child who
37:19
Speaker 3: went through an extraordinary moment in his life. And yes,
37:23
Speaker 3: there's still things we have to be conscious of. Yes
37:25
Speaker 3: there's still things that we have to you know, be
37:28
Speaker 3: careful with and keep our eye on. But I trust
37:32
Speaker 3: my motherly instincts more than ever. I got him through
37:35
Speaker 3: the hardest thing. And I know that if something else
37:38
Speaker 3: comes up, I'll know and I'll know what to do.
37:40
Speaker 3: And I know that I have chopp to fall back
37:43
Speaker 3: to for guidance and support. I have my husband, We
37:46
Speaker 3: have our family, and I have a son that is
37:48
Speaker 3: so strong and capable and happy and healthy, and you know,
37:53
Speaker 3: this is just a very small piece of who he
37:56
Speaker 3: is and it's shaping him to be an incredible young boy.
38:01
Speaker 3: And I am just so excited to see him grow
38:03
Speaker 3: into the future. And I just know he's going to
38:05
Speaker 3: do amazing things. I feel it in my heart, I
38:08
Speaker 3: feel it in my soul. And for all parents out
38:12
Speaker 3: there who are in it right now, who are just
38:14
Speaker 3: trying to get through it, just know that you're already
38:18
Speaker 3: doing the best thing you can for your children by
38:21
Speaker 3: getting them the care that they need, and just they're
38:25
Speaker 3: so fortunate to have that. And it will be okay,
38:29
Speaker 3: and you will get through it and it will become
38:31
Speaker 3: your new normal, and it's just it will all be okay.
38:37
Speaker 3: And just trust yourself and trust your instincts and do
38:43
Speaker 3: what you need to do for your family, and just
38:47
Speaker 3: don't ever, ever not appreciate the big, the small, the
38:51
Speaker 3: little moments, because life is short and it's it's truly
38:58
Speaker 3: the most eye opening experience and if you look at
39:01
Speaker 3: it that way, it's a learning moment for everybody. Yeah, Oh,
39:05
Speaker 3: and you know it, it allows you to not take
39:10
Speaker 3: for granted every little moment, and I think that's the
39:12
Speaker 3: biggest gift, to be honest, I truly.
39:15
Speaker 1: Do, absolutely absolutely, I think that's a fascinating, really fascinating story.
39:21
Speaker 1: And I've got sorry, no, no, no, absolutely fine. I've
39:26
Speaker 1: just been thinking over questions I'm going to ask, so
39:29
Speaker 1: we'll see it anyway. But I think that's fascinating it
39:33
Speaker 1: And you mentioned I know you just mentioned it there
39:35
Speaker 1: about mother's instinct. I yeah, for anybody who's who's heard
39:40
Speaker 1: my story, mine was was very similar. I got very ill,
39:45
Speaker 1: told I was fine. My mum realized I really wasn't
39:50
Speaker 1: and could have been, you know, catastrophic towards the end.
39:54
Speaker 1: But because she realized that I wasn't, very well took
39:56
Speaker 1: me back and thankfully now fine. I mean, I I
40:00
Speaker 1: would always always advocate for mother's instinct. It's one of
40:05
Speaker 1: those things. I don't know whether you agree it is
40:07
Speaker 1: one of those things. I can't quite put my finger
40:08
Speaker 1: on it as to I can't quite explain it, but
40:13
Speaker 1: I but I would always always advocate for mother's instincts always.
40:19
Speaker 3: It's it's and it's so important. And I think like
40:21
Speaker 3: going to the Children's Hospital of Philadelphia one thing that
40:24
Speaker 3: they really focused on was the mother's instincts and the family,
40:30
Speaker 3: and they really took what we were saying. We were
40:34
Speaker 3: involved in the conversations with the surgical team and the
40:37
Speaker 3: nurses and everything through both processes, and they would say, well,
40:41
Speaker 3: how is he at home? What do you think? You know,
40:43
Speaker 3: we were very much involved in the conversation, which was
40:46
Speaker 3: a very big difference compared to the first place we
40:49
Speaker 3: were at, And they really valued the family's opinion because
40:53
Speaker 3: in their mind, no one knows your child better than
40:56
Speaker 3: you and every and as we as we're learning with
40:59
Speaker 3: her sprung and everything. There's so many different ways and
41:05
Speaker 3: situations of what people are going through when they get diagnosed,
41:08
Speaker 3: when it's found, how severe it is, all these things.
41:10
Speaker 3: So the fact that they see that patient centered care
41:14
Speaker 3: very much involves the family, especially the moms. It really
41:20
Speaker 3: helps do the appropriate care and also being able to,
41:25
Speaker 3: you know, see what it is that's needed, what's not needed.
41:28
Speaker 3: And I really appreciated that feeling heard and listen to,
41:32
Speaker 3: because yeah, you just know as a mom, you just know,
41:36
Speaker 3: I mean, he doesn't even talk, and I just know,
41:39
Speaker 3: I just know what he needs, what he's saying. You're
41:42
Speaker 3: tied to them, you know, and you have to trust that.
41:45
Speaker 3: And a lot of times people will make you second
41:48
Speaker 3: guess yourself. You know, it's a very common, and then
41:53
Speaker 3: you start thinking, Okay, well, you know I should trust
41:55
Speaker 3: like this, this is what they're telling me, and that's
41:58
Speaker 3: I should listen to that. And you just sometimes you
42:01
Speaker 3: just seek your gota, listen to your gut, especially when
42:06
Speaker 3: it comes to your children.
42:08
Speaker 1: They're your children absolutely absolutely. And another thing I think
42:13
Speaker 1: you mentioned as well, when you're talking about the colostomy bag,
42:17
Speaker 1: and obviously you've gone through a heck of a seven
42:21
Speaker 1: days from you know, the very final stages of pregnancy,
42:25
Speaker 1: through child birth, right through Hirshbrug's colostoy bag, all within
42:31
Speaker 1: a week. I mean that that bobbles the mind for me.
42:36
Speaker 1: I mean, how someone can go through all of that
42:38
Speaker 1: in seven days come out the other side as normal
42:42
Speaker 1: as you are.
42:43
Speaker 2: It just absolutely absolutely blows my mind.
42:47
Speaker 3: Look some time, I wasn't as normal when I first came.
42:51
Speaker 2: Off, but it absolutely blows my mind.
42:55
Speaker 1: And then you talk about perspective as well, because obviously
42:59
Speaker 1: having myself, I've had a couple of stomas and they
43:04
Speaker 1: can be sort of if you haven't seen one before.
43:07
Speaker 1: And again, if you haven't had hirsprungs or another condition
43:12
Speaker 1: that may require a stoma, there's no reason why you
43:14
Speaker 1: would have seen one before. But I think something that
43:18
Speaker 1: was so important you said was that perspective. You had
43:21
Speaker 1: people who've been in that hospital for months, if not years,
43:25
Speaker 1: and your child had stoma and you were able to
43:30
Speaker 1: go home and you were doing really well and everything,
43:32
Speaker 1: And I just think, yes, you can have the why me.
43:36
Speaker 1: And I've had that before myself, and there are a
43:38
Speaker 1: lot of people who do. And there's a lot of
43:40
Speaker 1: people that will go through different stages of it. They'll
43:44
Speaker 1: sort of think why me, and then they'll have perspective again,
43:46
Speaker 1: and then they'll go why me, and then perspective. It's
43:49
Speaker 1: not a linear process at all. But I just think
43:53
Speaker 1: that that perspective is just so so important.
43:57
Speaker 3: Yeah, absolutely, I think, you know, I always try to
44:02
Speaker 3: be open about that because it's, you know, as positive
44:06
Speaker 3: as I try to look at the world, it's not
44:07
Speaker 3: always like that. And it's okay to have those moments.
44:10
Speaker 3: It's okay to have moments of why did this happen
44:13
Speaker 3: to me? What did I do? All of those things?
44:15
Speaker 3: And you need to allow those for yourselves to heal,
44:18
Speaker 3: you know, But you can't live in that. You can't
44:21
Speaker 3: live in that moment because honestly, it's not about you anymore.
44:24
Speaker 3: It's about your child, it's about your family, and it's
44:27
Speaker 3: about getting through. And if I look at it like that,
44:32
Speaker 3: my son will grow up thinking that why me? Why me?
44:35
Speaker 3: And like that is not at all the message I
44:39
Speaker 3: want him to have at all. He is a capable, strong,
44:43
Speaker 3: amazing child. Why you? Because you were able to handle
44:46
Speaker 3: going through this and you're going to be stronger for it.
44:49
Speaker 3: And it is, again just a small piece of who
44:51
Speaker 3: you are. It is not all of who you are.
44:53
Speaker 3: And if I live in that, then that's bringing that
44:57
Speaker 3: negativity to my child and my son and he should
45:01
Speaker 3: be nothing but proud of himself with what he what
45:04
Speaker 3: he went through. And I want him to grow up
45:07
Speaker 3: and understand his story and be able to talk about
45:10
Speaker 3: it and not hide from it, you know. And I
45:12
Speaker 3: think when we were very much in it, trying to
45:15
Speaker 3: get through it, it was a survival piece of like
45:18
Speaker 3: I didn't want to talk to anyone, no one understood,
45:22
Speaker 3: and honestly, people try to say things to make you
45:24
Speaker 3: feel better and a lot of times it just doesn't
45:27
Speaker 3: you know, a lot of times it's like, okay, well
45:29
Speaker 3: you don't even understand, so, you know, and even just
45:32
Speaker 3: regular parenting things like oh, you know, try to you know,
45:37
Speaker 3: give give a bath to settle them before they go
45:39
Speaker 3: to bed at night and stuff, it's like, okay, well,
45:41
Speaker 3: given a bath every night with a closbian bag is
45:43
Speaker 3: not really possible, okay, And he was getting baths when
45:47
Speaker 3: his bag fell off, Okay, I was not like it's
45:49
Speaker 3: just even those basic advice, right, is just like it's
45:53
Speaker 3: it's not a realistic, you know, clothes that people would
45:57
Speaker 3: get us. Oh my goodness. It was just like I
45:59
Speaker 3: can put these pants on him with the colossalmy bag
46:03
Speaker 3: because it's just gonna make it pull off and pop
46:05
Speaker 3: and and all these things. And it's like, you know,
46:08
Speaker 3: and I and you know that people mean well, but
46:11
Speaker 3: it's just they just they don't understand, and you know,
46:17
Speaker 3: it's it's all part of the process. It's all proud
46:19
Speaker 3: about just like learning through it and going through it
46:22
Speaker 3: and you know, get when you get out of the
46:26
Speaker 3: other side of it, and just being able to look back,
46:29
Speaker 3: Like I said, you know, even just a dirty diaper
46:32
Speaker 3: to some people would be something that's you know, trivial
46:35
Speaker 3: and annoying in this and to us is like we say,
46:38
Speaker 3: all the time we celebrate poop in this house. Yeah,
46:41
Speaker 3: all the time we celebrate.
46:43
Speaker 1: It, right, absolutely, absolutely. I think that's a fantastic sentiment
46:49
Speaker 1: to finish on. Thank you so so much for this.
46:53
Speaker 1: In terms of where people can find you find theo's story, yeah,
47:01
Speaker 1: all the lovely places you've been to, including Switzerland, which
47:04
Speaker 1: is fantastic.
47:05
Speaker 3: Oh people, but I think we are a little crazy
47:08
Speaker 3: for it. But you know what best memory?
47:11
Speaker 2: Absolutely and where where can people find you?
47:14
Speaker 3: Well? I am on Instagram, So my Instagram is Courtney
47:20
Speaker 3: Underscore LF And you know, I certainly plan on in
47:26
Speaker 3: the future becoming more and more of an advocate to
47:31
Speaker 3: the hirsh Sprungs community. I am more than happy for
47:35
Speaker 3: anyone who went through it, is going through it now,
47:37
Speaker 3: or anything who just wants to talk to someone and
47:40
Speaker 3: reach out that actually can understand and relate. I am
47:43
Speaker 3: more than happy to be that person for you whatever
47:47
Speaker 3: it is that you may need. And I just think
47:51
Speaker 3: that we are a small, tight knit community and I'm
47:54
Speaker 3: so happy that I found you, Tom, and I'm so
47:56
Speaker 3: happy you're allowing me to share my story, and I
47:59
Speaker 3: hope that this touches people. And you know, through the
48:03
Speaker 3: good and the bad, all the feelings that you're feeling
48:06
Speaker 3: are totally valid and totally normal, and you just got
48:09
Speaker 3: to keep fighting and it will be okay at the
48:12
Speaker 3: end of it. And when I see someone like you
48:14
Speaker 3: who went through what you went through and you have
48:15
Speaker 3: this podcast and you're doing all these things, and for me,
48:18
Speaker 3: having a son who's one years old and not knowing
48:21
Speaker 3: what his future is, but knowing that there's that future
48:23
Speaker 3: for him and what he's going to be is the
48:25
Speaker 3: greatest gift you can give to someone like me.
48:27
Speaker 1: So thank you, Thank you so much, and thank you
48:32
Speaker 1: so much for coming on the podcast and sharing with
48:35
Speaker 1: a fascinating story. And I alwaysh you, your husband and
48:39
Speaker 1: Antho all the very best for the future.
48:42
Speaker 3: Thank you so much, Tom, I appreciate it.
48:47
Speaker 1: Thank you for listening to the podcast. Find us on
48:49
Speaker 1: Instagram Tom's Underscore Hirshbrung's Underscore podcast. Listen to previous episodes
48:55
Speaker 1: on Spotify by searching Tom's Hirshbrung's podcast.
49:02
Speaker 3: It includes
49:06
Speaker 1: It Procust