Ep. 94: Family + Friends | How to Stay Close When You Feel Worlds Apart w/ Chelsea Denham

 

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Summary

When receiving a diagnosis for your child—or dealing with medical complications—it can feel like you’re suddenly thrust into a separate world than your family and friends. And this can be super distressing and disorienting at a time you need them most.

In this episode, Chelsea shares how her relationship with her family and friends has been impacted by the different life she leads with her disabled sons. We chat about the isolation we feel in knowing our friends and families have no idea what we go through. We also talk about ways we can try to be just a little more vulnerable with them and how to tell our family and friends what kind of support we want and need.

mom and 2 sons making silly faces
husband and wife
mom and son laying down
family with masks under chin
family with baby on feeding tube
baby hooked up
mom and dad holding baby
2 little boys
mom kissing son
mom with 2 boys
mom holding baby
mom and son wearing white hat
Episode Transcript

Chelsea Denham  0:00 

We had to be okay with that and we also had to be okay with having tough conversations with people, to say, "Listen, I know that you're lovingly trying to give me this advice but I didn't ask for it, so please stop."

 

Madeline Cheney  0:13 

Hey, you're listening to The Rare Life. I'm your host, Madeline Cheney, and today I am so excited to give you a Chelsea's special topic episode, all about our relationships with friends and family and how they shift when our children with disabilities and medical complexities enters the picture. This episode will mean a lot more to you if you have the context of Chelsea's story episode so if you haven't caught it yet, I invite you to hit pause, listen to that one, and then come back to this one. So, as I've been thinking about this super important topic, I realized that, at least for me, in a lot of ways, when we first receive a diagnosis or find out that our child is disabled or has medical complexities, we often feel violently torn away from our friends and family because we suddenly feel 'other' and find ourselves facing a very different reality than our friends and family. Of course, this assumes that your friends and family aren't exposed or impacted by disability. In many ways, this episode is kind of an examination of that initial tearing away, and ways that we can rebuild that relationship with friends and family, Not necessarily trying or attempting the impossible of making it how it was before but building something new that fits our new lives and our new realities. In this episode, Chelsea and I chat about the isolation that we feel in knowing our friends and family have no idea what we're going through. We also talk about ways that we can try to be just a little more vulnerable with them and how to tell our friends and family what kind of support we need. If, while listening to this episode, you're like, "Oh my goodness, I want my amazing friends and family to hear this," and you feel like your relationship could benefit in one way or another from this, do it. Share it. And if you are a friend or family member listening right now, I give you an extra special welcome and I think it's amazing that you care so deeply about the well-being of your relationship with your loved one enough to come and listen to this. In this episode, Chelsea and I talk about navigating this with our loving, non-abusive, non-toxic families. I am fully and painfully aware that that is not always the case, which truly sucks. So, if you have found it healthier for you and your child to set intense boundaries or to even cut ties with family and friends, I see you. I hope that while you're listening, it doesn't make you feel more alone than you did before. You're not alone. You do matter, and setting healthy boundaries matters. Okay, without further ado, let's jump right into the episode. Hi Chelsea, welcome back to the show.

 

Chelsea Denham  3:43 

Hey, I'm glad to be back.

 

Madeline Cheney  3:46 

I'm really excited to chat about the way that our relationships with our family and friends are impacted by our children's disabilities because I'm pretty sure that's a universal thing. Everyone feels some level of disconnect that happens once we enter a different type of parenting experience than our peers and our family members, and it's a difficult thing to navigate and it's complicated, and I'm grateful that you're willing to chat about this. I know no one wants to like badmouth their family members or whatever but I hope that the honesty we have will be able to help other parents experiencing similar things know that they're not alone in these difficult circumstances. I would love for you to start out with sharing how your family reacted and the good, the bad, the ugly, from when Jace, your first child with disabilities, was born, and how that went down.

 

Chelsea Denham  4:52 

So

 

Chelsea Denham  4:54 

I was a little naive, so once we figured out this was more of a lifelong thing, it wasn't until he was around two. When we first had him, it was kind of like everybody was learning with us, our family was learning diagnoses with us. It was kind of hard at first, we had some family members that were telling us that we needed to go see certain doctors or that these doctors were the best, and the doctors that we were going to weren't the best, and all that stuff. I know that it comes from a good place, especially with family but sometimes you have to drown out the noise and come together. For my husband and I, we are the team. Yes, your family is a support system and they're like an olive branch but for us, we are the tree and we have to stand there and make the decisions that are best for our family. Not everybody agreed with certain decisions that we made but we had to be okay with that. We also have to be okay with having tough conversations with people, to say, "Listen, it's not okay what you're doing, and know that the decisions that we're making, we believe are the best for our child and we didn't ask for your advice." And that's a hard thing to say, like, "Hey, I know that you're lovingly trying to give me this advice but I didn't ask for it so please stop," and that is the hardest for us because we had to deal with that really early on at first. Then, as time went on, every time we were making a new decision with our oldest and needing surgery and stuff like that, people were just like, "Okay, when's the surgery?" And so, as he got older, it was a little bit more manageable and easier.

 

Madeline Cheney  7:11 

Yeah. Unsolicited advice from friends and family, is such a thing when you are a parent at all, especially new parents. It comes too, in the form of medical advice when they don't really have reason to know this stuff but it definitely comes from a place of love, like you said, but I think that's really cool that you plucked up the courage to respectfully say, "We didn't ask for your advice." And I'm sure that helped you and Jacob have more clarity when making decisions when you don't have a million different opinions being thrown your way as well as your doctor's opinions and your own insights and thoughts. I bet that was such a big improvement, to not be getting all that noise.

 

Chelsea Denham  8:03 

Yeah, definitely. And on the other side of it, once we had our second, it was more of the feeling where some people just weren't necessarily allowing themselves to sit in the fact that both of our children were born with airway malformations, and they were born with a disability. I think that word is kind of hard for some people, and even for myself, as a parent, for a long time I didn't think that we fit under the line of disability, why would I? Because both of my children on the outside appear somewhat typical so I was kind of like, "Oh, well, I could sneak by. I could sneak by and people wouldn't really know." But then I had to realize for myself, like, "No, I have to stand in the truth, that my kids have disabilities and they were both born with airway malformations, and it will affect them their whole life. And so, I have to be okay with that, and for me to be okay with that, it also shows them that they can stand in their truth in who they are and how they were born and be proud of who they are and what they were born with, versus trying to hide or say like, "Oh, no, they're not born that way." And I think both my husband and I struggled with that, like, he would say, "Oh, I didn't tell anybody." Even his work was like, "Oh, congratulations, you have a baby!" And he didn't tell anybody that we were in the NICU or anything because you almost feel ashamed. I feel like that comes with that, so I feel like as medical parents, we really had to come out of that and be like, "No, this is who our kids are. You can't change that, this is how they were made and born and we have to be proud of who they are." As soon as we start showing other people just how proud we are of them, then people will, in turn, respect and be proud of who our kids are. I think that was harder, and still is, I think, for some of my family members. It's like, "Oh, a surgery, they're going to be fixed, right?" Like that was how it worked, like surgery was just going to fix them and then everything would be okay. And it's hard to say like, “No, the surgery is not to fix them, the surgery is to help them.” I think sometimes, in society, we have a skewed thinking of surgery. Usually, people go in for surgery because they break their foot or break their arm or whatever, and they're fixing their arm and their leg. However, when you are born with a malformation and things are not typical, then there is nothing that can fix that, surgery or otherwise. And for our kids, that's just where that lies. They don't have a fix-all for our kids.

 

Madeline Cheney  11:24 

Yeah, and I remember, I think it was in the previous episode, you were saying that you had to come to terms with the fact that this is long term, like when your oldest was two, and I almost think that our family members and our friends, they kind of need to also come to a similar conclusion. It's probably going to be after it happens for us because we're in the thick of it and they might be following our lead with that but for them to eventually come to the conclusion, “My grandchild,” or, “My nephew,” etc., “is disabled, this is a lifelong condition. This is part of who he is, I'm super proud of it. And the surgeries are not going to ‘fix him’, this is part of managing symptoms.” I feel like there's this parallel evolution that can happen with family and friends, or at least that we hope happens with them because if that doesn't happen, ever, that's where a lot of the really big rifts can happen and you can feel really isolated from family members if they won't accept your child as disabled or see them for who they are. I like picturing them going through a similar evolution with us, delayed but with us.

 

Madeline Cheney  12:43 

Yeah, of course. They are walking through it and they're seeing you walk through it, so it's close but it's not immediate, they don't feel those risks as hard when you're going through sicknesses and hospitalizations and surgeries and all that stuff. They do they feel it, they're your family, they do feel, it's just one of those things where, because we are in the thick of it, we have to figure it out ourselves before even having conversations or coming to terms with our own family or friends or whoever that it might be affecting. It's a hard balance because even still, I think some people haven't necessarily come to terms with that, that this is just who our children are. And I don't even think that they even realize it, I think they think that they're being supportive, and they are, in so many ways. And then there's other ways that are huge, that have impacted us more on like, “Well, why did you say that? That kind of stings and hurts a little, why would you say something like that?”

 

Madeline Cheney  13:57 

Can you give some examples?

 

Chelsea Denham  13:59 

Yeah, people have said, “Thank god that happened to you because if that happened to me, I wouldn’t know what to do.” I was really angry at first, this is when Jace was little and I was like, "What?! Why would you ever say that to me?” But also, I feel like giving people that grace in that they try to put themselves in your position and so they're like, “Oh my gosh, I don't know how you do it.” But like, no one knows how they do it. I don't know how I do it. I just get up every day and do what I do because I need to help my kids survive. If it wasn't for me hooking up Emerson’s belly, he would be malnourished. There are things I have to do because that is just my life. I would like to think that every single mom here and listening would do the same exact thing. You have a diagnosis of something and it is what it is, you have to deal with what is dealt and what you are given because you don't have a choice.

 

Madeline Cheney  15:21 

And I pretty much guarantee that every parent that has a child with any kind of medical stuff feels the exact same way of like, "I don't know. I don't know how I'm doing it," or like, "I also feel like that should've happened to someone else because I would not be able to handle that." We're all feeling that. That kind of comment is so common, and I feel like it's definitely cringy, you're like, "You would deal with it. I'm not super human, this is really hard for me too." But it is validating too. I have mixed feelings about it because it does feel like, "Oh, you're acknowledging that this is hard," because I think sometimes, on the flip side of that, there's kind of this, "I know how you feel, my child's teething right now and it's so sad to see them in pain," and making these analogies that are not the same thing. At least they're acknowledging it, they're recognizing, "Oh, that looks really hard."

 

Chelsea Denham  16:23 

Yeah, adding to your point, on the other side of things, trying to relate when it's relatable, but it's just not a relatable thing. Especially in our family, I'm one of five and my husband is one of four, so we have a big family but our kids are the only children that have disabilities. There's nobody else in our family that does. It's kind of hard when it is like that, "Oh, well, my kids are teething," or "Oh my gosh, my kid does not sleep," and I'm like, "Okay, well, the next time they're up turning blue and you're trying to suction their mouth and keep them alive, then we can talk." Sometimes I'm just like, "Are you serious...they were teething." It is a struggle for some people who don't have children with disabilities, and that is a real thing. They are tired and they are exhausted and so we can fall prey to the comparison of like, "Well, my life is really hard," but we also have to make sure that those difficulties for other people, even though they might not look the same as ours, it is their 'hard' and they are struggling and having a hard time too. It just looks different.

 

Madeline Cheney  17:44 

Yeah, and I think it can be so isolating because it's so painfully obvious that they have no idea. That's something that's happened again and again for me with my loving, awesome family that I love so much, where there'll be some comments made and, maybe like using the teething thing as an example, they have no idea. And I think that's a really painful place to be in when it comes to your family, especially if you are really close with them and you love them, and with friends too, to realize that huge divide as far as lived experience. The things I've lived through, what could compare? What you've been through, not that they have easy lives or that there aren't hard things going on in their lives that I don't understand but that feeling of, my own mom doesn't understand what this is like. My own sister and my brother, these people that I look to for advice and stuff, they just don't get it. Especially in the beginning, when you feel like you're the only one on this earth with a child with a disability, it just feels so isolating.

 

Chelsea Denham  19:04 

Yeah, it definitely feels isolating, and I've talked to you too about this, where it's just like, the longer and the older our kids get, I would get comments all the time when I was pregnant with Emerson and I was like, "I just, I don't know, I'm really worried, what if he is born with the same thing?" And people would make comments all the time about like, "Well, no, that's not going to happen." And I'm like, "Well, how do you know that? I don't know that and you don't know that." And so, that comment is actually not as comforting as you would think it is. You might think that that's a comforting comment but it's not because in reality, we didn't know that that was going to happen with our first and the diagnosis that he had and then coming around a second time, it definitely felt more isolating the second time around because in the NICU, before COVID, people could come and visit you and we had a few family members that would come and we got comments like, "I'm really sorry I'm not there for you but I'm having a hard time with this." And I'm like, "Okay, well, if you're having a hard time, imagine how difficult this is for us because this is our child." Those kinds of comments are the ones that can be really hurtful because you can't get past your own emotions to just be there for us, to be in the room and sit with us and see this family member. It can be very isolating, even with family because sometimes life gets busy and they don't come and visit or now they're in there for so long and it's just like, "Okay, well, you don't need any more visitors" kind of thing or, "Oh, I already visited." And that is kind of hard because people don't realize, like, we had friends that we would go and visit when they had kids, and then they didn't come and visit us, and it kind of sucks. And then I thought maybe they don't know that people can visit us, so the second time around, I'm like, "People can come and visit us in the NICU, you can come! There's only two people at a time but you can still come and see them." And outside of our family, we only had two of our friends come. Two. People just didn't want to or maybe it was too hard for them, I don't know but those things are the more isolating things. As they've gotten older, and I've told this to you, we're kind of like old news. Our kids, they have airway malformations and because they look "okay", people just think that our life is 'hunky dory' and that we don't struggle and they don't struggle, and that is hard because sometimes I found myself wishing that they had something that people could actually see because then people would understand. Now, with people not being able to see, they're fine. They're okay. They're like, "But they look fine, and they look healthy." And I'm like, "Well, yeah, of course they do because I worked my butt off to get them to where they are and it's a lot, so thank you. I'm glad that they look healthy and good to you because it has been a lot for me and my husband." The things that people don't see, I think, is the hardest. Once Emerson had a G-tube, it was kind of like, "Oh, well, actually, people can see that he has an inefficiency to swallow," whereas with Jace, he just struggled his whole life and he still struggles and people don't even realize the amount that he struggles. I shared recently, when he had his scope done, he had a triple scope done in December, and his airway was so severely inflamed, he was just so sick, even his vocal cords. They look grayer than they do a pink color, and it's crazy because when I shared on my stories, I had people messaging me, "Wow, I didn't realize like that that's what his airway looked like." I think, visually, when people see it, it actually processes but without them seeing that, they're just like, "Well, he's acting normal." That's what they say, "Oh, he's acting normal." I'm like, "Well, yeah but he's a kid so he's going to be a kid, and kids, when they're sick, sometimes you don't even know if they're sick because they're kids and they just want to play and do whatever. So, he is still a kid, and he is still going to act 'normal' to you because he is using so much energy to just be a kid." That is where it's the hardest, for me and for my husband, I feel like, with their specific diagnosis.

 

Madeline Cheney  24:43 

Yeah, those invisible disabilities, I've heard from other parents too, it's just so difficult because the stuff that you're going through feel minimized because you don't have the obvious physical stuff that people can see. I just feel like it's such a huge part of who your family is and who you are, so for people to not acknowledge that or not see that, it feels hurtful, like, "Hey, this is a part of our lives, this is what we do, this is how I feel." And it's invisible, you can't see that so it's not acknowledged, which is pretty hurtful. I'm not exactly sure but it is, especially with friends and family members, you want them to know you and you want to feel known. If they don't see that or they are like, "Oh, everything's fine, he's fine. That's so great. He's better." It's just not true and it feels hurtful.

 

Chelsea Denham  25:50 

Yeah, I shared today, on one of my reels, about minimizing how a medical parent feels, and I feel like that is something that can make a medical parent feel so minimized, when you say certain things that you might not mean to say but those things can minimize their diagnosis or minimize how they're feeling. You might not see that but it doesn't mean that they are not struggling or that it's not hard for them. So, I think it's a hard balance, especially with like family and friends because your family truly does mean well, they really do. They want to love and support you and so they're trying to do what they feel is best, and I think, as medical parents, we should not be afraid to say things and share those things with them because that is how you change the wave, how we change how people respond to other people. I used to always be like, "Oh my gosh, what if my child says something to another person that might be physically disabled or in a wheelchair or something like that, and how embarrassed I would feel." On the opposite end, I want to be more open with my children, and we are, we discuss things all the time because it doesn't make it wrong if your child's asking about something because they're curious and their little minds want to know why, and that's an okay thing. As parents, we need to be more open and honest with those discussions but it is hard because if you, as a parent, or if a family member or friend has not truly accepted the disability that they have, then you cannot actually show how to speak properly or answer properly because you have to find that within yourself to know "Well, this is what it is,” and then move on from that.

 

Madeline Cheney  28:31 

Yeah, and you need to feel safe with sharing, like the etiquette or the appropriate way to reference it but also when it's like, "Hey, I'm really struggling right now because I'm worried about this and this with my child, and I'm not sure what's going to happen." Those kinds of conversations are so vulnerable, especially knowing that you're opening up to someone that hasn't lived this experience. I think, in some ways, it's easier to open up to other parents that have disabled kids because they get it but to open up in that way to a family member or friend who hasn't experienced that. You need to know that they are in a place to receive that because you're just so vulnerable and it's so intimate to share that kind of thing. I've been thinking too, about my relationship with my family, and I guard that stuff. I love my family, we're very open with each other but it feels kind of exhausting to explain and it's, again, easier when you're talking to another parent because you can say much less and they totally get it. I think one thing that makes it easier for me, and I don't know if listeners or you have experienced this too, is talking about hard things after they've happened because I've had time to process it, I have some space from it and have kind of figured out how I feel about it. And then, sometimes I'll just bring it up, before I'd be like, "Oh my gosh, no understands, I'm the only one in my family dealing with this, this is so sad." And I've been able to move into a place of like, "I'm the only one experiencing this, I want my family to have a glimpse into this world. I want them to know about this stuff. This is a part of my life that I have grown to actually, I wouldn't say 'love', maybe 'hate-love', it's hard but it's also a big part of my life." And so, sharing, "Oh, something just came up about Kimball's hearing aids. When Kimball first got his hearing aids, I was a wreck. It was so hard, there's all these things that go into it that..." and just using opportunities when you feel like you can emotionally share and knowing that your family is in a place where they can receive that, I just feel like has brought a huge closeness to my family that I didn't necessarily have in those first few years because I've invited them into my world, knowing they can't fully understand it because they haven't lived it but to invite them in with those kinds of narratives that we feel comfortable sharing, I have found very helpful.

 

Chelsea Denham  31:10 

I think that's huge, too. On the opposite side of this, for parents or siblings who are listening that have family members that have children with disabilities, it's so important to be able to just listen and not feel like you have to say something or you have to say the right thing. When we're expressing how we're feeling about a situation, like for you when Kimball got his hearing aids, and that totally sucked the first time and you had all these feelings, you want those people to listen and just be there and say, "Yeah, that does suck." Or, "I'm so sorry that you had to go through that." Instead of inserting, "Oh, well, that was really hard for me," or all this stuff because of course, now that we are parents ourselves, we can kind of see how difficult it is for our parents to watch us with our own children who have a disability or medically complex kid, it is hard. And so, it doesn't minimize how they're feeling and we know, as individuals with parents, how our parents can feel through this and it's so important to allow ourselves to say what we need to say. And sometimes I don't share things because I'm like, “Oh, I'm going to get emotional and I don't want to be emotional or be the person that's always emotional when I'm sharing things with my family.” And so, I'm most vulnerable with my husband and he knows everything, so I tell him, and that’s fine for me but I think that it is important to share with your friends and your family when those times are most difficult. It doesn't have to be when you're going through it, it can be after the fact, it can be months later, it can be a year later. It doesn't have to be when you're walking through that because you're still learning how to deal with it and how to cope with those things, each step of the way. I think it's important to allow yourself to have those feelings first before trying to explain to someone, like your family, who are supportive but they don't know. They haven't walked through that. And so, I think it's important to do that and allow yourself that.

 

Madeline Cheney  31:22 

Also, be self-aware of what you need in that moment because when in the thick of it, I'm like, “Oh my gosh, I'm so scared of this appointment we're about to have, what if we get bad news and this is triggering?” Sometimes I do feel like I can share that right then and I want to, for example, with my mom, most of us probably have a similar relationship where, when something's hurting, you're like, “Oh, where's my mom?” Even as an adult, “Where's my mom?” And so, I've learned to reopen to her but even texting things like, “Hey Mom, we're having a scary appointment with neurosurgery for Kimball. I'm scared, can you be thinking of me?” I wasn't doing that as much before because I think I was wallowing in my isolation of, “Oh, I'm so alone. No one understands.” So, even just a quick text like that if you can't handle talking it out. I feel so supported with that because even though she hasn't been through it herself, she can still text back, "Oh yes, I'll be praying for you, I'll be thinking about you.” And then, the next day, after the appointment, “Hey, how did things go? I've been thinking about you.” It just feels really good to invite people in when you feel like you're ready for that. Even in the thick of it, if it's just a text or whatever you can handle, if it's something that you feel like will be helpful for you.

 

Chelsea Denham  35:23 

And I think our family and our friends want that. They feel like they're invited into that and they want to help but sometimes they don't know how, so sending a text or saying, “Hey, please think of us or pray for us,” that is a way for them to support you. And sometimes it can be really hard but I think it's super important. Even when we were in the NICU, we would make decisions and then do a mass text to our family, like, “Hey, this is just an update. This is what's happening...” And we would also send, attached to that text message, just saying, “We don't want to talk about it. This is the decision that we've made and we don't want to talk about it. Just so you know, the surgery is happening on this day at this time. We don't have a lot of answers so please don't ask us questions.” And that is an okay thing to ask for your family. And yes, your family will be okay with that. If they're not, that's their own thing that they’ve got to figure out because it's not your job to make it okay. You're allowed to ask questions because you're the parent but when someone is asking you and flooding you with all of these questions and you don't have the answers to them, then it's more frustrating, and that can be so hard. You feel like you're being swallowed up by everything around you. It's okay to put that disclaimer and say, “Listen, I don't want questions, I don't want to talk about it. This is what we're doing.” And all of our family, when we would send out text messages, they would respect it and not ask, even if you're just like, “Please don't respond back to this thread because there's so many people in it and I don't want anybody responding,” and they won’t or they'll respond separately. So, putting those boundaries on is super important. It can help your family navigate how to rightly support you and your family when you're going through things. On the other side, like you said, like, it also helps us, we find our ways that we need to be supported the most. We're still navigating that and I think, as medical parents, we will forever because different situations call for different types of support. Sometimes what worked before doesn't necessarily help in other situations. I think that's kind of what we learn when we go through the process of new surgeries, new diagnoses, new appointments, all this stuff. It is super important to just share that with your family and know that if your family is upset about something that you have put in place or a boundary that you have, that is not your fault and they will get over it eventually. You don't need to explain yourself of why you want things a certain way when you're going through a diagnosis or having something big happen. It's not your responsibility to express why you want all these things to happen or why you don't want people to ask you questions. It should just be an automatic, and they should be okay with it.

 

Madeline Cheney  39:17 

Yeah, I love everything you just said, I think it's so wise to be like, “We're going to navigate this together and I'm going to set boundaries and if you're not cool with it, I'm sorry," and I know that some people have had really bad experiences with friends and family with that and I feel, I feel for people because it's difficult even in the best of scenarios, even when your family is totally supportive and loving and well-intended. One thing I wanted to hit on, and we talked about this previously, is watching your children's cousins, so your siblings' kids, and having that side-by-side comparison. I don't know if envy is the right word but I felt a little bit of bitterness of being like, “Look at how charmed their life is.” It's probably a similar thing with all kids ever, where they scamper home from the hospital and they're totally healthy and happy, and their biggest thing is teething. I think there's also this kind of bitterness that creeps in too, with the cousins of like, “Oh my gosh, they didn't have to go through anything compared to what my child's gone through,” and I think that is a difficult thing to navigate too.

 

Chelsea Denham  40:40 

I think that can be the hardest, especially for your nieces and nephews, you love and adore them because they are your nieces and nephews, and it is definitely more difficult, and sometimes, for my husband and I, we have never in our life, since our kids have been born, been able to go on a date because we can't leave our kids with many people. We did actually, one time, we had an overnight stay when I was pregnant with Emerson, and it was our anniversary. We left our son with my parents. We are going to next week, which I'm terrified of, and leaving both of our kids for the first time in six years. We have never left our kids because we have to go close on our house. And so, there are things that we don't have the flexibility of that most people have. So, sometimes when people are like, “Oh, we were going to go here but now we can't because this person can't watch our kids,” I'm just like, “Oh man, that sucks..." It's hard to have empathy for it because the last time we went out was a long time ago. We don't get the flexibility of being able to do that, and that is okay. That is what our life is but it's hard, I think, to see that. It's hard to see my nieces and nephews when they're playing sports and doing things, and for Jace, we've put him in soccer and stuff but there's always that struggle of, “He's a little bit noisier.” And then kids are making comments and that's hard. That is the hardest, when you're watching your family play, and your nieces and nephews and, and then to know that your child might never be like that, they might never be able to have the stamina that your other nieces and nephews have or your family members. I want that so badly for my kids but just because I want it doesn't mean that that's what will happen. Jace and Emerson, they will both thrive and there are other things in life that they will really do well in, and that is a good thing. Jace loves putting stuff like Lego’s and things like that together. He loves building and using his brain, he is just so adamant and loves that stuff. So, those are things that we tried to hone in on versus being more active, which is very hard for him. It's hard to see it. My desire is to be like, “Well, I would love to have a child that doesn't have disabilities but I don't know if that's in the cards for us.”

 

Madeline Cheney  43:57 

Yeah, that contrast or comparison between cousins is harder to ignore. It's harder to not notice and to see and feel that pain as a parent when your child has been through so much and they have so much to handle and they're going through a lot, and these other kids don't necessarily have to. Well, thank you so much, Chelsea. I think this is such an important conversation and I just really hope that people listening feel very seen and heard, and again, that you know that you're not the only ones dealing with this. That's just so important. Thank you for sharing.

 

Chelsea Denham  44:40 

Thanks for having me again!

 

Madeline Cheney  44:44 

If you want to find Chelsea or me on Instagram, you can find links in the show notes to do that. You can also find a link to join the Facebook group, Parents of Children with Rare Conditions, or another link to donate monetarily to help us continue to produce meaningful episodes. Join us next week for a conversation with Mom Libby Holley. We discussed the parable of the pain scale, the pain scale being those little charts with the numbers one through ten, the smiley face on one end and the really upset face on the other, for rating pain and ways that an eight for someone else may be a two or three for us. It's a really important discussion and a perfect follow-up for today's episode. So, I hope you join us. See you then.

 

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Ep. 101: Tiffany’s Story | T18 + Advocating for Her Daughter’s Right to Live tiffany's story https://d3ctxlq1ktw2nl.cloudfront.net/staging/2022-8-29/288341331-22050-1-21a6efcfbe742.m4a

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68: Dipping My Toes into Educational Advocacy

 

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