A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies

[00:00:03] [SPEAKER_03]: I'm Effie Parks. Welcome to Once Upon A Gene, a podcast. This is a place I created for us to connect and share the stories of our not so typical lives.

[00:00:14] [SPEAKER_03]: Raising kids who are born with rare genetics and drums and other types of disabilities can feel pretty isolating.

[00:00:21] [SPEAKER_03]: What I know for sure is that when we can hear the triumphs and challenges from others who get it, we can find a lot more laughter, a lot more hope and feel a lot less alone.

[00:00:31] [SPEAKER_03]: I believe there are some magical healing powers that can happen for all of us through sharing our stories and I'll take all the help I can get.

[00:00:43] [SPEAKER_00]: Once Upon A Gene is proud to be part of Bloodstream Media, living in a family affected by rare and chronic illness can be isolating.

[00:00:51] [SPEAKER_00]: And sometimes the best medicine is connecting to the voices of people who share your experience.

[00:00:56] [SPEAKER_00]: This is why Bloodstream Media produces podcast blogs and other forms of content for patients, families and clinicians impacted by rare and chronic diseases.

[00:01:06] [SPEAKER_00]: Visit Bloodstream Media.com to learn more.

[00:01:09] [SPEAKER_03]: Hello friends and welcome to The Show. This is Once Upon A Gene and I'm your host Effie Parks.

[00:01:13] [SPEAKER_03]: And today I am so excited to have a conversation with two of my dear friends and fellow rare moms.

[00:01:20] [SPEAKER_03]: Both of them, their first child were born with rare disorders and they're both now brand new moms with kids only like days or weeks apart of their second kid who was born without a genetic disorder and are perfectly quote unquote healthy.

[00:01:36] [SPEAKER_03]: So we are delving into this idea of you know all the fears and the emotions and the considerations that come along with you know deciding to have a second child.

[00:01:45] [SPEAKER_03]: And this conversation isn't about finding right or wrong answers. It's about understanding and respecting the unique experiences and choices of each family in our community.

[00:01:55] [SPEAKER_03]: And I think that it's just a really important topic that I see people asking questions about all the time and I think you're really going to enjoy some of their thoughts on the matter.

[00:02:05] [SPEAKER_03]: So please enjoy my guests Emily and Katie. Hello Emily and Katie. Welcome to The podcast.

[00:02:11] [SPEAKER_02]: Hello, thank you for having us.

[00:02:13] [SPEAKER_03]: Hi.

[00:02:13] [SPEAKER_03]: Okay. Many of you know Katie Lloyd the beautiful Swiss see friend of all of ours in her blog and she's in on the show before us.

[00:02:22] [SPEAKER_03]: So I'll link her episodes in the show notes. They can't be missed and introducing Emily my beautiful angel friend who's a fellow Cteen and be one mom to the show and a super power house on our Cteen and be one foundation.

[00:02:33] [SPEAKER_03]: So welcome to both of you. I'm so excited you're here. Emily and Katie both have obviously children with rare genetic disorders, but they also have new borns literally attached to them at this moment.

[00:02:47] [SPEAKER_03]: So we're going to kind of just go through all of that stuff. Well as much as we can in an episode for now about just kind of like the journey that it takes for us families to decide whether to have another kid or not and just all this stuff that goes into it.

[00:03:00] [SPEAKER_03]: So Katie I'll start with you. Can you just walk us a little bit through a little intro of you and your family and then Emily just go ahead and follow her.

[00:03:08] [SPEAKER_02]: All right. So we are a British German family living in Switzerland as you do and we have a four year old Colcazapa who has a regenerative syndrome called Desanto Sinois syndrome which is also known as Dash and we have a three week old Colt allow and that's in a nutshell

[00:03:28] [SPEAKER_01]: And I'm Emily A. Morrison. I have a two year old who was diagnosed with CTN and be once in drum and we have a one month old named Nora.

[00:03:39] [SPEAKER_01]: Oh my gosh you too. So cute.

[00:03:42] [SPEAKER_03]: All right. So both of you like how did your experience with your first borns and their genetic conditions kind of shape your hopes and your fears about having that second child?

[00:03:56] [SPEAKER_02]: Oh gosh. I feel like this question is as a big one. I think it affects everything, right? So I tried to explain to our friend that having a child with a red diseases like you look under a curtain and you can't unsee it.

[00:04:09] [SPEAKER_02]: So you connect with this red disease world and you learn about all these red diseases but on the flip side you know about all these red diseases, right?

[00:04:18] [SPEAKER_02]: So you know the possibilities that rare is not so rare when you have friends who also have children with red diseases and my son is one of 200 in the world.

[00:04:28] [SPEAKER_02]: It happened to us. So I think you do come with this knowledge before the pregnancy, the second pregnancy or the next pregnancy of the possibilities and that definitely would I would say followed me throughout.

[00:04:41] [SPEAKER_01]: I don't know if you felt the same Emily. Yeah, and that's I you put it perfectly even in the pregnancy.

[00:04:49] [SPEAKER_01]: I was you know, it was a totally different pregnancy the second time around because the first time around I just was so ignorant to all the things that could happen.

[00:04:59] [SPEAKER_01]: And I was just you know got good well checks and I was like okay perfect baby we're headed towards a perfect delivery headed towards perfect start to parenthood and, you know this is just following the tracks of all these friends and people I see on social media like this is just how it goes everything's fine.

[00:05:18] [SPEAKER_01]: And then the second time around it's like well, like you said you know if this happened to us once, you know and then you learn about all the other rare diseases your eyes are just kind of open to this world of not perfect social media family planning.

[00:05:37] [SPEAKER_01]: And and you just kind of wonder if if there's something else that's just going to pop up.

[00:05:42] [SPEAKER_03]: Yeah, do you feel like having this knowledge the second time maybe took any of the joy out of it or do you feel like it just really equipped you and kind of empowered you.

[00:05:55] [SPEAKER_02]: Oh for me definitely took away some of the joy because we actually did genetic testing on our on our baby so it 12 weeks pregnant we did test to find out if he also had the Santoshan always syndrome.

[00:06:08] [SPEAKER_02]: And that was terrifying because it came with risks and it was a very unpleasant and we chose to do that because we wanted we just wanted to know because for as knowledge is power and you know we knew what we were getting into them.

[00:06:22] [SPEAKER_02]: And for me then till I got the results of that testing on and I got kind of passed it and knew that he was safe from that procedure.

[00:06:31] [SPEAKER_02]: I found that really hard so we didn't really tell anyone until about 13, 14 weeks because we didn't know if the procedure was going to cause anything.

[00:06:40] [SPEAKER_02]: And so I definitely feel but even till the end I would definitely say I did not feel safe if that makes sense.

[00:06:49] [SPEAKER_01]: How about for you Emily?

[00:06:51] [SPEAKER_01]: Yeah, we it was a hard balance between getting that early genetic testing or you know how much anxiety am I going to have over wondering if the second maybe also has CTN and B1 versus how worried am I going to be about the risks of that testing.

[00:07:09] [SPEAKER_01]: So we ended up not getting that genetic testing early on and I you know we were told that the gene was denovo in our case for Savannah.

[00:07:19] [SPEAKER_01]: But you never know there's the mosaicism or whatever that they tell you about so my whole pregnancy I was and still I mean I don't think she has anything.

[00:07:29] [SPEAKER_01]: But you know we didn't know until Savannah was about six months old when she wasn't meeting the milestones that kind of something was going on.

[00:07:37] [SPEAKER_01]: So I almost feel like I'm still not in the clear in some ways and kind of just watching her like a hawk.

[00:07:43] [SPEAKER_01]: So it has stripped a lot of the joy out of and I'm anticipating those milestones with a little bit of fear I guess any particular reason if you want to share why you decided not to get one of those CVIs.

[00:07:55] [SPEAKER_03]: Is that what it's called CVS I think CVS.

[00:07:59] [SPEAKER_01]: Yeah, there's just a risk of miscarriage since it's done with MEO synthesis.

[00:08:05] [SPEAKER_02]: So the that's two procedures is the CVS and the MEO so the CVS I think is around 10 to 12 weeks and that's where they take the placenta and the MEO synthesis is a few weeks later I think and that's where they take the MEO to fluid.

[00:08:20] [SPEAKER_02]: So that two different tests at two different times so we could have taken the MEO later if we wished.

[00:08:26] [SPEAKER_01]: Yeah, we were only offered the MEO and she mentioned the risk of miscarriage and I just kind of me personally thought that the anxiety over miscarrying was higher than.

[00:08:39] [SPEAKER_01]: Um, my anxiety over the genetic condition.

[00:08:42] [SPEAKER_03]: I can understand that for sure.

[00:08:44] [SPEAKER_03]: I mean that's always in the back of any of our heads when we decide to do anything even for our kids.

[00:08:49] [SPEAKER_03]: Did either of you feel judged or weird or uncomfortable in any way to share with others that you were going to have another baby?

[00:08:59] [SPEAKER_03]: Did you feel like, you know, maybe you already had too much on your plate or that people.

[00:09:04] [SPEAKER_03]: You know what I mean?

[00:09:05] [SPEAKER_03]: Did any of you kind of feel a little weird about that?

[00:09:07] [SPEAKER_01]: I almost feel like I needed a disclaimer almost with our announcement of like.

[00:09:13] [SPEAKER_01]: We're not expecting this baby to also have a genetic condition because it's Lenovo for Savannah blah blah blah and you know I have a support system.

[00:09:24] [SPEAKER_01]: We're going to be okay.

[00:09:25] [SPEAKER_01]: I almost felt like I needed to include that in the announcement to avoid the judgment and I never got any outwardly to me.

[00:09:33] [SPEAKER_01]: But I I wonder if that's what people are thinking when they see that announcement, you know.

[00:09:40] [SPEAKER_02]: I think for as it was almost the other way, I think people expected us not to have more children.

[00:09:46] [SPEAKER_02]: So people were quite surprised they were like, oh yeah having another one is if you know that our lives were over having one disabled child and we no longer wanted to expand our family which just this ridiculous.

[00:10:00] [SPEAKER_02]: And I think we had the other way that people assumed this baby would be healthy and I was more.

[00:10:06] [SPEAKER_02]: I'm very cautious. I don't know maybe I'm a little bit over cautious and a little bit anxious so I said you know we don't know we don't know if he comes and if there's a baby and I think people thought I was losing my mind a bit by not saying when and when he's healthy but for me it was very much we just don't know.

[00:10:27] [SPEAKER_02]: So I tended to say maybe we'll have something or not who knows. We tried to take things each day as it came and I think that's the only way we survived the whole pregnancy until now.

[00:10:42] [SPEAKER_03]: Yeah real quick Katie Casper was denoled about mutation right?

[00:10:46] [SPEAKER_02]: He was and actually when we said to people that we were doing the CVS they were very shocked.

[00:10:51] [SPEAKER_02]: Even people from the Dutch community and I have since found out that there's actually I think 3% of the families are 3% their siblings.

[00:11:04] [SPEAKER_02]: So then not musachism and they don't know why there are siblings with the same because it is denolver.

[00:11:09] [SPEAKER_02]: So for us it did feel like the right decision in the long run but it was terrifying you know as Emily said it comes with risks and it is absolutely terrifying to think we could have harm the baby in some way.

[00:11:21] [SPEAKER_02]: But statistically is higher and I'm we're not really sure why in the Dutch community so first it was important just to have that knowledge.

[00:11:28] [SPEAKER_03]: I agree it was the same for me and I think that's actually pretty common. I mean CTNB12 has a few symptoms and again like Emily said it could have that musaism aspect to it.

[00:11:37] [SPEAKER_03]: So I don't necessarily know how to phrase this question but I know for me I really really wanted that like typical quintessential experience of parenthood and I wanted to experience you know having this child that I always had imagined I was gonna have anyone who wants to like start name calling and calling me able to understand everything for that just say your emails please because that this isn't that.

[00:12:04] [SPEAKER_03]: But I wonder did either of you kind of feel that sort of ache to kind of have that typical experience did you feel bad about having wanting to have that typical experience.

[00:12:15] [SPEAKER_02]: So for me like I still I think I'm definitely in some kind of self protection stage where I can't believe this baby is typical so I'm kind of waiting for the ball to drop at some point and for things I don't know to to turn out differently.

[00:12:32] [SPEAKER_02]: I do want that experience but I can't quite let myself believe it's gonna happen and people have said to me you know when you're a second is here and he's typical and I'm like I don't know I don't know if he's going to be so for me.

[00:12:45] [SPEAKER_02]: I'm still in self preservation mode where it would be nice but I can't quite let myself go there just in case that's not our experience again the second time around does that make sense?

[00:12:57] [SPEAKER_02]: Do I sound completely neurotic?

[00:13:00] [SPEAKER_03]: As he's almost five and I probably say that at least once a week in case he has to like shush me up because I'm like babe I think something I think she has autism I think she has ADD ADHD and he's like Effie.

[00:13:11] [SPEAKER_03]: She is perfectly developmentally on track and I was like no I think something's probably wrong so yeah I do get it and that it's probably.

[00:13:19] [SPEAKER_03]: You know like some weird self preservation sort of trauma thing that you mentioned.

[00:13:26] [SPEAKER_01]: Yeah I feel the same way I mean I just I feel like and I've said this to you before Effie it's like the full knee one phrase or whatever it's like.

[00:13:35] [SPEAKER_01]: I was so ignorant the first time around where it's like I'm almost expecting you know and it not necessarily CTNNB one but like what is what challenges are gonna hit us this time kind of.

[00:13:49] [SPEAKER_01]: mentality where I feel like and it is a self preservation like you know you don't want to set yourself up for.

[00:13:58] [SPEAKER_01]: for feeling so distraught again because really getting Savannah's diagnosis felt like the biggest toppling wave of.

[00:14:08] [SPEAKER_01]: my life that I could have ever imagined and so you don't want to set yourself up for that and you mentioned the guilt I do feel guilty and I said this to another CTNNB one mom who.

[00:14:21] [SPEAKER_01]: recently found out she was pregnant kind of just reached out to me to really just share some feelings that she was having and she's the first person that I told that I felt guilty about.

[00:14:34] [SPEAKER_01]: you know really wanting this typical parenting experience and I don't know why the guilt is there and it feels weird to say out loud but you know that's that's what everyone wants and it's not to say that.

[00:14:47] [SPEAKER_01]: you don't love and appreciate your parenting experience with your child with disabilities but it's just it's hard.

[00:14:54] [SPEAKER_01]: and you don't want those same challenges and you don't want I don't know I don't know how to say it but there's guilt in wanting a quote unquote normal experience.

[00:15:06] [SPEAKER_02]: and I think if I can just jump in like our kids have been through a lot like medically physically emotionally as have we and I think we don't want to see our children suffer and we also don't want to suffer as parents.

[00:15:20] [SPEAKER_02]: another that is all pain and suffering with our kids like they're also wonderful beautiful magical moments but I think that's one part of it that.

[00:15:28] [SPEAKER_02]: if we have a typical child we wouldn't have to go through that a second time around and if our other children do have disabilities or rare diseases we'd love them just the same but we would like to not go through that again.

[00:15:42] [SPEAKER_03]: you know it's it's something that annoys me actually that anyone even feels like they have to follow it up with that like that's what bothers me about it and I think that it really kind of opens that box about abilism that is so loud right now and sometimes very misdirected.

[00:16:00] [SPEAKER_03]: that we can't just have these human feelings and these experiences that are happening to us and that have happened to our children and to our families that are very serious.

[00:16:09] [SPEAKER_03]: and also feel another type of way without feeling like we have to feel guilty about it when I feel like it's just normal and I feel like it's okay to have those feelings and to just let them be exactly what they are without having to feel like.

[00:16:25] [SPEAKER_03]: you know we have to pay for something I don't know if that makes any sense but I feel like we get backed into like these these dark rooms where we can't really share our feelings about certain things because we're afraid of you know that shame of us being joyful or us wanting another path that we had expected prior to it.

[00:16:48] [SPEAKER_01]: yeah those those quotes that pop up on Instagram all the time about you know grief and joy can coexist and you can you can love your child and enjoy every moment and at the same time say this is freaking hard.

[00:17:03] [SPEAKER_03]: yes I just I think it just really like is a reminder that we do have permission to feel right and that it's okay totally okay and nobody should be name called or shamed for having those feelings because of the experience that they've had.

[00:17:19] [SPEAKER_02]: it reminds me a friend of my mother's pregnant with twins and I asked you know do you know if they're boys or girls or born a girl yet and she said you know I don't care as long as the healthy and then she looked at me and she she panicked and she said I mean I'd love them even if they weren't healthy and I thought of course you want the babies to be healthy who wants the baby to be born with medical needs and seizures and so nobody wishes that for their baby and for a long time I was quite maybe a little bit defensive about the healthy baby thing but.

[00:17:48] [SPEAKER_02]: it makes sense we all wish for a children to be healthy that doesn't mean we I don't know we are able is we just want good things for kids because we love them yeah I think I think there's so many quips that.

[00:18:02] [SPEAKER_03]: I have become an activator slash a trigger for families like ours and I think that it does get perpetuated online and it becomes a narrative and so you think that you have to be defensive over certain things.

[00:18:13] [SPEAKER_03]: and people aren't necessarily really thinking through it before they make their own decisions about stuff like that and I love how you kind of flipped your mind on that because.

[00:18:22] [SPEAKER_03]: Of course we do and of course we will still love them anyways and it will be what it is but I don't think that when people say that they're like because a healthy baby would just be at you know just be.

[00:18:32] [SPEAKER_03]: the worst thing in the world like it's complicated right like they're not saying it to like diminish your child's worth is what I mean exactly I think it's it's like with the grief and joy these things can exist.

[00:18:45] [SPEAKER_03]: I can love my disabled child and I can wish for a healthy baby that they they coexist side by side yeah it's okay so there is another part that really complex and it's about that sibling aspect.

[00:18:58] [SPEAKER_03]: and I'm sure it's like that you know for as long as we all shall live what do you two think about that and what are kind of your hopes for the siblings and what are some of your fears so far as the biggest fear.

[00:19:12] [SPEAKER_02]: Well they were several I think so with Casper he has a lot of sensory needs and he's very scared of other children so he's a bit of a lone wolf.

[00:19:21] [SPEAKER_02]: He will tolerate children as long as they don't speak near him or come to touch his toys so he doesn't really play with other children and there was a long period where he if a child made a sound near him he would just completely shut down so he would cry and then fall asleep as if he had like complete sensory overload.

[00:19:37] [SPEAKER_02]: and then the the computer turned off so that was a fear of us with the crying but he would go into like sensory meltdown and struggle and actually within three weeks he has really adapted to the crying he points to my breast and says mama milk so he knows he knows how to shut the baby up or he points to the pacifier and you know once to put it in his mouth.

[00:19:59] [SPEAKER_02]: But I think I read the fear as well as that Casper's very impulsive and so we are worried about safety so we've basically engineered our schedules that I'm never alone with both which I feel like most parents don't really have to worry about in the typical world you know that you can.

[00:20:14] [SPEAKER_02]: I have had some comments like well I looked after both of my children on my own and I think well your child did not have to send us your naps and drones so you don't really get to tell me how to do it and still a little bit defensive about that clearly.

[00:20:26] [SPEAKER_02]: So yeah those are our biggest fears and so far things have gone much better than expected.

[00:20:32] [SPEAKER_02]: I think we've catastrophized but it has been useful in getting ready and and preparing.

[00:20:39] [SPEAKER_01]: I love that yeah going back to deciding whether, well we always wanted more than one child I grew up as an only child and decided very early on that I would never do that to my children or my child.

[00:20:53] [SPEAKER_01]: So we always wanted more children but for us the planning aspect was win you know and they really is no right answer.

[00:21:03] [SPEAKER_01]: But for us it was do we have them closer together so that you know they're smaller and easier to physically carry or do we wait and have a longer gap between them so that hopefully seven is walking or at least a little more mobile when we have a second child.

[00:21:23] [SPEAKER_01]: So for us the sibling adding to the family went back to family planning and it took us a while to have Savannah so you know throwing that into the mix is just this whole complex decision of yes we want another one but.

[00:21:38] [SPEAKER_01]: Win and is that win going to actually happen so we decided to try to get them close together so that I could carry Savannah in the new baby and Savannah wouldn't be as heavy.

[00:21:51] [SPEAKER_01]: Honestly that's kind of what the decision came down to but Savannah is very similar to your Casper with the sensory aspect she will.

[00:22:01] [SPEAKER_01]: Here loud noises and immediately jump and cry and just any unexpected noises which babies make a lot of.

[00:22:12] [SPEAKER_01]: You know kind of center into this kind of frantic place and you can just see it in her eyes so I didn't as worried about doing that to her and how is that going to work with the baby and and she also doesn't really have an interest in playing with other children.

[00:22:28] [SPEAKER_01]: So it's just you know it's kind of just like a wait and see and you know we will put boundaries in place obviously for their safety and just kind of see hopefully they kind of find their own way to play together once they're older and hopefully Savannah is more mobile so I'm not.

[00:22:48] [SPEAKER_01]: I'm not carrying a toddler and one year old when we get there but yes it's very complex.

[00:22:56] [SPEAKER_03]: Yeah Katie I worry about your burnout with the matter of feeling like you can't leave them alone and I totally resonate with both of those you know for similar sounding to obviously both of your kids and doesn't necessarily play with as he and I can't have them seated next to each other for

[00:23:15] [SPEAKER_03]: Obviously in a wheelchair so he can't like you know go up to as he and smacker whatever it is that they could do but if they're next to each other he absolutely can so I understand that like constant vigilance in safety and you know I'm seven years into this and I and I'm still doing that.

[00:23:31] [SPEAKER_03]: It's a day to day thing kind of like all of it right.

[00:23:34] [SPEAKER_02]: I think in a way I'm prepared because we have to be hypervigilent with fast bear anyway because of the doors unlocked he's getting out the door you know if there's something to be touched on through and he's going to get his hands on it so

[00:23:46] [SPEAKER_02]: I've got four years of hypervigilent and now he's you know he started walking at 30 months.

[00:23:51] [SPEAKER_02]: I will first step and you know now he's running it for a half so he is fast and he is yeah he's cheeky he will

[00:24:00] [SPEAKER_02]: He knows which buttons to press when he's when he's feeling good so it's I would say I'm used to being hypervigilent but it's definitely you know when he wants to

[00:24:10] [SPEAKER_02]: Give the baby a kiss. I am I think me my husband to breathe until until it's over.

[00:24:17] [SPEAKER_03]: Yeah, I know you're like both so new and you're like sleep deprived and probably just really really hungry right now

[00:24:25] [SPEAKER_03]: But let's talk about maybe some of those unexpected joys that you've got to experience so far even in the first few months ish

[00:24:34] [SPEAKER_02]: I think for me it's how Casper has reacted to the babies so as I said we were really worried that you know he was afraid

[00:24:41] [SPEAKER_02]: He is afraid of loud sounds and then we bring in this loud human who doesn't leave and his permanent

[00:24:47] [SPEAKER_02]: You know he has no choice but to live with them, but he's he started to speak a little bit more and so he you know he wakes up in the morning

[00:24:54] [SPEAKER_02]: He says where are lo and he always says hi baby. Hi baby. I think his nickname is baby. I don't know why it's are not all of

[00:25:03] [SPEAKER_02]: And he seems to recognize that this human you know that's here to stay is someone else and not just you know someone special

[00:25:11] [SPEAKER_02]: Not just a random person and that's really nice to see so I think the catastrophizing has its benefits and that there have been positive things that we've not expected

[00:25:20] [SPEAKER_02]: Of course I could have had a lot less anxiety on the way to the joy if I'm not being so nervous about things

[00:25:27] [SPEAKER_02]: But it's really beautiful to see how he's taken to having a brother and it's been better than we could have expected

[00:25:32] [SPEAKER_02]: And I think maybe because he is that bit older I think a year ago or even six months ago it would have been a different story

[00:25:38] [SPEAKER_02]: But that's been really beautiful to see for us

[00:25:40] [SPEAKER_01]: Our story didn't start out as expected. Savannah was actually sick with RSV. She tested positive the day after I delivered Nora and

[00:25:50] [SPEAKER_01]: So we thankfully my parents live here and so they just kept Savannah for the first week that we brought Nora home and so it was

[00:26:02] [SPEAKER_01]: It was kind of strange because it was almost like we were a family of three with a newborn

[00:26:07] [SPEAKER_01]: It was like reliving those first days with Savannah

[00:26:09] [SPEAKER_01]: And but then also like missing her terribly and realizing that she was a two year old staying with my parents and just

[00:26:17] [SPEAKER_01]: Intercipating them meeting for that whole week. It's I don't even have words for the feelings that went through my mind that first week of having her separate from us

[00:26:27] [SPEAKER_01]: It was very strange and not at all what we pictured the first week to look like but once they did finally meet

[00:26:35] [SPEAKER_01]: It has been also better than expected

[00:26:40] [SPEAKER_01]: Savannah's curious but keeps her distance and you can tell that she has also learned

[00:26:47] [SPEAKER_01]: You know that this is a permanent special person. This is part of our family, but you know why is it making that noise?

[00:26:56] [SPEAKER_01]: So it's been it's been heartwarming to see and also just fun to watch her reaction

[00:27:03] [SPEAKER_01]: Specifically when Nora is not crying just kind of Savannah looking so curiously at her and wanting to

[00:27:10] [SPEAKER_01]: Wanting to touch her but then backing away and kind of just figuring it out. I wonder the Emily if being on this kind of rare

[00:27:18] [SPEAKER_02]: Journey with your eldest if that has prepared you for the unexpected like the RSV and being separated at the beginning

[00:27:25] [SPEAKER_02]: And when it gave you more tools to kind of deal with the the unexpected erasing. Yeah, probably so

[00:27:34] [SPEAKER_01]: I kept my cool as much as I could with it

[00:27:38] [SPEAKER_01]: But you're right. I mean there's so many things that kind of just get plopped in our laps

[00:27:44] [SPEAKER_01]: Or we probably are more

[00:27:47] [SPEAKER_01]: able to adapt to things like that

[00:27:49] [SPEAKER_03]: Being a rare family for sure. Yeah, I was doing a talk a couple of weeks ago and at the end like during Q&A one of the ladies asked me how I do it because when her kids sick

[00:28:03] [SPEAKER_03]: Literally her world is on fire and like everything is awful and she can't get anything done in blah blah blah blah

[00:28:08] [SPEAKER_03]: And so how could someone like us do this every day?

[00:28:12] [SPEAKER_03]: And I didn't really know what to say in the moment and it was just like well, this is just the way that it is

[00:28:18] [SPEAKER_03]: And I know that it's lifelong and so to get you know so disrupted over any little thing and any little sickness would just turn me into a lunatic

[00:28:28] [SPEAKER_01]: You know you have to build up like this mental endurance of you know you're just preparing yourself for where just going to handle whatever comes our way

[00:28:38] [SPEAKER_02]: Totally they asked me at the hospital if I had a birth plan and I just laughed and I said I don't plan things anymore. What's the point?

[00:28:46] [SPEAKER_02]: I love that so much

[00:28:47] [SPEAKER_02]: I was like I'm planning purpose

[00:28:50] [SPEAKER_03]: Whatever that looks like so something that I have

[00:28:54] [SPEAKER_03]: Found just so strange. I don't even know what word to use because my brain's melted today, but like having navigated the public eye right with our kids who have originated disorders

[00:29:05] [SPEAKER_03]: Do you find it strange or conflicting to now be out with a child who's you know typically developing?

[00:29:13] [SPEAKER_03]: Can you describe any like weird encounters or mixed emotions and reactions of just what it's like to be regular mom and how different it is?

[00:29:21] [SPEAKER_02]: So Casper doesn't have any equipment like he doesn't use a wheelchair. He doesn't have any medical equipment. So I don't know if most people realize that he is disabled when they meet him until

[00:29:33] [SPEAKER_02]: He asked the same thing 10 times or he won't stop touching them and then they start to look at me like there's something going on here, but we don't know what I'm a tuple like to ask

[00:29:42] [SPEAKER_02]: So I haven't noticed anything yet with the baby, but we'll see time will tell I think.

[00:29:48] [SPEAKER_01]: Yeah, we haven't really gone anywhere yet

[00:29:51] [SPEAKER_01]: But I have that feeling with Savannah on public too because I mean she has a walker, but we don't honestly we don't take it anywhere with us because it's just too big and we have we just now got a car big enough and I still don't bring it with us

[00:30:07] [SPEAKER_01]: But I also wonder what people are thinking and how much they're realizing that she's I'm sure they know that she's disabled. I just and they're too polite to ask like you said, I just don't know

[00:30:22] [SPEAKER_01]: I don't know how that looks as as an outsider and I wonder what they're thinking and I wish they would ask or say something other than you know the pleasant trees and kind of ignoring it.

[00:30:35] [SPEAKER_03]: Yeah, I you know I guess I maybe didn't phrase my question very well and maybe you're just both too new right and you haven't even like come up for it.

[00:30:43] [SPEAKER_03]: And then it been outside for realsies but I guess what I mean is just like more of those regular encounters like even if our disabled kids aren't with us but like

[00:30:53] [SPEAKER_03]: You know maybe you're out alone at the park with your new kid and mom start talking to you like your regular person and you know

[00:31:01] [SPEAKER_03]: Start saying things that would be normally relatable to another new mom and you're just like inside like you have no idea this is this doesn't compare to anything that I normally do.

[00:31:10] [SPEAKER_03]: I don't know does that make sense like maybe you guys just haven't encountered it yet because you're such new parents but it's weird for me to be out sometimes with just asy and have parents talk to me about things that would normally be relatable.

[00:31:25] [SPEAKER_03]: But then in the back of my mind I'm like this isn't really my life.

[00:31:28] [SPEAKER_01]: I actually had some of that experience.

[00:31:32] [SPEAKER_01]: I think what you're talking about while I was pregnant there was a more opportunity as well as pregnant to get out by myself and when I was really showing people would ask you know is this your first when are you do congratulations?

[00:31:48] [SPEAKER_01]: And when they asked if it was my first I would say no I have a two year old and then the comments that followed were always oh well is she excited is she you know

[00:32:18] [SPEAKER_01]: And this is like your episode that you just released to Fee about do like is do I have the energy to like explain everything right now or do I just say yeah

[00:32:29] [SPEAKER_03]: Totally yeah and it does start in pregnancy for sure.

[00:32:32] [SPEAKER_01]: But yeah once when she's older once noris older and heading those milestones of like oh you know the comments people make about oh I bet you're chasing her around and things like that

[00:32:44] [SPEAKER_01]: I'm sure that we'll definitely experience kind of what you're talking about.

[00:32:49] [SPEAKER_01]: Yeah the glad she's not talking yet she'll never shut up.

[00:32:53] [SPEAKER_03]: Right.

[00:32:54] [SPEAKER_03]: I hate comments like that.

[00:32:56] [SPEAKER_03]: Yeah and it is a form of the supermarket answer I was thinking that too I was like oh yeah Jennifer's already named this it's that it's that sort of type of conversation that you engage in especially I feel like after when you have a regular like typically developing kid in your out alone

[00:33:12] [SPEAKER_03]: It's almost it's almost a little numbing you know like you have to go to this sort of num space sometimes to like just have that

[00:33:22] [SPEAKER_03]: supermarket conversation and just keep it right right there in that little box.

[00:33:27] [SPEAKER_01]: Right and it almost feels like you're pretending it's like I'm pretending that I have this life that this person thinks I have right now but like sometimes that's fine sometimes

[00:33:38] [SPEAKER_01]: Sometimes I do want to pretend that and and just talk about how my daughter's so happy

[00:33:44] [SPEAKER_01]: and not talk about the fact that she can't walk yet.

[00:33:47] [SPEAKER_03]: Oh well I know you're so busy you guys I could have this conversation forever because it is just such a

[00:33:52] [SPEAKER_03]: It's such a reality check and it really continues every single day.

[00:33:57] [SPEAKER_03]: So if there's anything that you want to add on top of this hopefully we can talk about this again and kind of get into more depth in a couple areas but

[00:34:03] [SPEAKER_03]: If you don't have anything to add I guess I would just ask you to maybe speak to the families who are listening or considering having another kid.

[00:34:11] [SPEAKER_02]: So much we could say but I think it's really important to I think the parents took knowledge all the feelings and the complexities of those feelings that

[00:34:22] [SPEAKER_02]: You know this feels terrifying and it feels magical but it's also really really scary at times or difficult

[00:34:31] [SPEAKER_02]: And then wonderful and then wild and then beautiful and like it's all these things and it's very complex

[00:34:37] [SPEAKER_02]: And I think we have to really acknowledge our feelings around all of it and not you know kind of put a heads down and push forwards

[00:34:46] [SPEAKER_02]: And to reach out to other people who have been there before you know like maybe F.E.E.E. you can put my Instagram handle in the show notes

[00:34:53] [SPEAKER_02]: You know if anyone wants to reach out and talk to me I'm very happy to you know not expect obviously but we've been through this and if anybody

[00:35:01] [SPEAKER_02]: Once to talk you know I'm really open to that because it is it's complicated as we've discussed

[00:35:10] [SPEAKER_01]: Yeah I definitely agree talking to other people really solidified

[00:35:18] [SPEAKER_01]: I guess give us peace with our decision to grow our family

[00:35:22] [SPEAKER_01]: Even though it was like you said Katy very terrifying and all the other things but

[00:35:31] [SPEAKER_01]: Talking to other people and hearing stories of those sibling bonds with our special kiddos

[00:35:39] [SPEAKER_01]: Like as he I love hearing about as he and seeing your videos F.E.E.E.E. of her with forward and yeah I think just just reaching out to people who it's it's real for them

[00:35:55] [SPEAKER_01]: And you can kind of picture it for yourself because otherwise it does feel like this big scary unknown

[00:36:03] [SPEAKER_01]: But I think it's worth it.

[00:36:07] [SPEAKER_01]: I just I know that our family is more blessed now that we have Nora and I know that it's

[00:36:18] [SPEAKER_01]: There's going to be more support for Savannah and force of Anna to be that influence to Nora

[00:36:28] [SPEAKER_01]: I think it's so special.

[00:36:29] [SPEAKER_01]: Yeah I think the biggest thing is reaching out to other families who've been there and hearing about those experiences

[00:36:35] [SPEAKER_01]: And the hard experiences too

[00:36:38] [SPEAKER_01]: So you know you're getting yourself into really

[00:36:40] [SPEAKER_03]: Yeah totally oh my god that just may be like have five more ideas of where we're going to have to build off on this conversation

[00:36:47] [SPEAKER_02]: We need a pot too

[00:36:50] [SPEAKER_03]: Totally and I guess I would just say anything I told this to you Emily and you can only hear this when it finally clicks

[00:36:56] [SPEAKER_03]: So I think to is to just seriously savor it.

[00:37:01] [SPEAKER_03]: Saver all of that stuff that you never ever got to experience

[00:37:05] [SPEAKER_03]: Like really you see it now and you see it so much more vividly

[00:37:10] [SPEAKER_03]: Then you would have if you didn't have a child that was sick

[00:37:15] [SPEAKER_03]: And the fact that you get to experience that now too but it's so magnified

[00:37:21] [SPEAKER_03]: I just really hope that both of you especially can just

[00:37:26] [SPEAKER_03]: Really breathe that in because it's remarkable

[00:37:29] [SPEAKER_01]: It's almost like we're experiencing what we think when other people tell us little complaints about the neurotypical child

[00:37:37] [SPEAKER_01]: Like in my head I'm thinking oh my gosh just be like just be thankful that they're walking

[00:37:43] [SPEAKER_01]: Like don't complain to me about them getting into stuff

[00:37:46] [SPEAKER_01]: And it's like now I have this little one where I get to say to myself

[00:37:51] [SPEAKER_01]: You know be thankful that they're walking and it's not going to bother me as much when they're getting into stuff

[00:37:57] [SPEAKER_01]: Because I'm going to view it as a blessing that they are

[00:38:02] [SPEAKER_03]: Totally it reminds me of like how messy I let as you get

[00:38:06] [SPEAKER_03]: You know and I like things clean

[00:38:08] [SPEAKER_03]: But like yeah my friend sent a giant box of sprinkles to her

[00:38:12] [SPEAKER_03]: And I let her just go wild with them and everyone was like I can't believe you to allow that mass

[00:38:16] [SPEAKER_03]: Blowl of a one I'm like are you kidding me?

[00:38:19] [SPEAKER_03]: This is the most magical thing I've ever seen

[00:38:21] [SPEAKER_02]: Also can I just add like I now have all this knowledge from from Casper all this advice

[00:38:26] [SPEAKER_02]: People gave me that never worked you know just put him in the carrier and he'll fall asleep

[00:38:30] [SPEAKER_02]: But need be screaming for a few minutes later

[00:38:31] [SPEAKER_02]: And now I'm like I just took him out in the straw and he slept for four hours

[00:38:34] [SPEAKER_02]: This is amazing

[00:38:37] [SPEAKER_02]: So

[00:38:38] [SPEAKER_02]: These things actually do work

[00:38:40] [SPEAKER_02]: They're not they're not myths

[00:38:42] [SPEAKER_02]: Oh, it just kind of nice because I was like no someone's giving me the wrong instruction manual here

[00:38:47] [SPEAKER_02]: And the nice thing is to do it the second time around see these things do work

[00:38:51] [SPEAKER_02]: You know it just depends on the chat

[00:38:52] [SPEAKER_03]: I know isn't it just wild to just actually see a kid eat

[00:38:58] [SPEAKER_03]: Like just to do it I mean these things are they leave you all struck every little thing that they do

[00:39:04] [SPEAKER_03]: Alright you too well I sure love you and I really appreciate you taking the time out of your extremely busy and high stress lives right now to talk to me about this conversation

[00:39:15] [SPEAKER_03]: Love you, Effy

[00:39:16] [SPEAKER_02]: Thank you for having us Effy and I've been rocking for 43 minutes now

[00:39:21] [SPEAKER_02]: I can finally stop rocking my way

[00:39:23] [SPEAKER_03]: I'll be sure at a very rare adventure

[00:39:25] [SPEAKER_03]: Instagram handle Amwab site for Katie she writes beautiful blogs

[00:39:28] [SPEAKER_03]: You cannot miss it Emily's always here on Instagram too

[00:39:32] [SPEAKER_03]: She's always doing so much amazing work for our Cteen and B1 families

[00:39:36] [SPEAKER_03]: So if you want to reach out to either of them you can't miss them

[00:39:39] [SPEAKER_03]: So thanks ladies, I really appreciate it. Thank you Effy

[00:39:43] [SPEAKER_03]: Thanks Effy, nice to meet you Katie

[00:39:45] [SPEAKER_02]: And you Emily

[00:39:46] [SPEAKER_03]: I hope you've been enjoying this podcast

[00:39:48] [SPEAKER_03]: If you like what you hear please share this show with your people

[00:39:52] [SPEAKER_03]: And please make sure to rate and review on iTunes or wherever you get your podcasts

[00:39:58] [SPEAKER_03]: You can also head over to Instagram, Facebook and Twitter

[00:40:01] [SPEAKER_03]: Check it out with me and stay updated on the show

[00:40:04] [SPEAKER_03]: If you're interested in sharing your story or if you have anything you would like to contribute

[00:40:09] [SPEAKER_03]: Please submit it to my website at EffyParks.com

[00:40:12] [SPEAKER_03]: Thank you so much for listening to the show and for supporting me along the way

[00:40:16] [SPEAKER_03]: I appreciate you all so much

[00:40:18] [SPEAKER_03]: I don't know what kind of day you're having

[00:40:20] [SPEAKER_03]: But if you need a little pick me up, Ford's got you