Hosted by Erica Jolene with special guest Abby Tanner | Transcription HERE
In this week's Afterthoughts episode, my friend and fellow medical mama, Abigail Tanner, has joined me to talk about our personal experiences with home health nursing. There is a lot of laughter and a lot of vulnerability as we both share about the awkwardness and the blessing of having the help of a home health nurse.
Hearing Abby talk about her own experiences provided all the reassurance I did not know I needed. It helped me to feel normal in regards to my initial feelings, my first steps, and my expectations. More than anything, this conversation reminded me of just how lucky we are to have two wonderful nurses in our home.
I can't wait for us all to learn more about Abby, her family, and her tribe; in a future season of her very own!
Abby's son Lincoln's Facebook page, Lincoln's Road, can be found by following this link: https://www.facebook.com/lincolnsroad/
Justin and Abby's business: The Board Collection
Research conducted in relation to this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.
Episode Transcription
Erica
Welcome to Atypical Truth, a podcast community for those impacted by disabilities and complex medical conditions. I am your host, Erica Jolene.
In just about every episode, I have opened with that same line and it dawned on me that someone listening to this show right now might be wondering, "Am I an individual whose life has been impacted by disabilities or complex medical conditions?". So, I thought it would be good to take a quick moment to address that great question. The thing is, most people have been, or will be impacted by disabilities, and/or complex medical conditions at some point in our lives. It may look different and feel different from the stories you hear on this show. It may have been a brief but memorable experience from your childhood when you first saw someone in a wheelchair, or a time in your life when a loved one has to navigate a difficult diagnosis. You may only just now be realizing the prevalence of disabilities and complex medical conditions in our society. And for that, I applaud you for becoming aware and tuning in to learn more about the people who directly identify with this community. I hope that you find comfort in learning that the stigma associated with disabilities is grossly inaccurate and that we're just a bunch of beautiful people living our lives the best way we know how doing what we can with what we have.
One of those beautiful people that I have come to know and love is my fellow medical mama, Abby Tanner. It was through a very random Facebook friend request from her mother-in-law, which led me to Abby and the Facebook page of her son Lincoln; and then into the world of Facebook groups specific to families of children with the same rare form of epilepsy that Margot has - well, technically both of our kids have, but we only had Margot at the time. And I'll never forget this moment, I can remember vividly just how exciting and simultaneously heartbreaking it was to see another family with a child like my own. But this moment changed my life. Before this, I had not even considered looking to Facebook groups for support and navigating this journey and here was one specifically created for us. It was such a relief and just so reassuring during a time when I was really in need of guidance and comfort in gaining some perspective of what to expect and what this life entailed. And here was this group of parents with kids at all different ages and with all differing abilities, each of them posting photos, celebrating with one another, swapping tips and tricks, giving advice and showing each other support. I mean, seriously, this was a game changer. And if you're a parent like myself, and you haven't done it yet, get out there search the keyword of your child's diagnosis. If you're a patient with a new diagnosis do the same. I just can't stress enough what a life changing moment this was, and how important it was to our family in navigating this very challenging time in our lives. But I do plan on taking a deep dive into that in a later episode.
So I've touched on this briefly before, but it bears repeating again and again because it is in fact an occurrence that keeps repeating itself. And that is that one of the most beautiful gifts this journey has given us are the unexpected friendships with people who we would have never met otherwise. The funny thing is a year ago, I would have told you that Abby and I would have walked right past each other without a second thought had we met in the past, during a time before kids were born. I mean, I was just so convinced that our lives were very different. And you know what? I am extremely happy to have learned just how wrong I was.
Abby is this California goddess. She's this amazing singer and an extremely talented cosmetologist so you know, she is always looking perfect. She is a creative business innovator with her husband as well. She's outspoken in just the most captivating and honest way. And she's someone who has long devoted her life to God and her family. And here I was, this quiet prairie girl who hailed from Kansas, I drove stick shifts, I prided myself on changing my own oil, riding motorcycles, and playing the song, like it was the voice I never had, but it always dreamed of. I was managing a business by the time I was 22 and I was far too busy for spirituality or the idea of having a family. So yeah, it's fair to say that I would have expected our paths to not cross. But life has other plans. And it just so happens that our shared desire to learn and discuss with others about our experiences as parents and caregivers to our sweet, complex, kiddos was all it took for the paths to cross and a friendship to emerge.
In the last year, we have this wonderful chance for friendship to blossom, thanks to the Marco Polo app. And this isn't an ad, I just really love that app. So as we got to know one another in these long winded video exchanges, we soon learned just how much we had in common, and how much we enjoyed each other's perspective. Abby has been a constant supporter of this podcast from the early days when it was just this tiny spark of an idea that I was tossing around. And I knew early on that I wanted her to be a part of this project, but I did not expect the enthusiasm she displayed with the idea of joining me for some occasional afterthoughts episodes and then on to even hosting her own season. I mean, most people understandably get nervous about the idea of being interviewed, let alone recorded and put on the air for the world to hear. But as it turns out, when you put a microphone in front of two natural born performers, we will not hesitate to put on a show!
Erica
HI ABBY! ...no, no that was terrible. That's not me at all. (laughter from both)
Abby
(Abby begins singing Lionel Richie) Hello...is it me you're looking for…
(laughter from both) I can see it in your eyes...
Erica
Keep going, keep going. (laughter from both)
Abby
I don't, I don't know the rest of it!
Erica
Now I'm gonna expect you to sing to me like every time!
Abby
You know what I forgot is that I set my voicemail a long time ago to the greatest showmen. But I forget and now every medical professional who leaves a voicemail, it's like...(Abby begins singing the Greatest Showman) "Ohohoooohoh! Ladies and Gents, Abby's not here right now."
Erica
Oh, no, you did not!
Abby
Oh I did! And I keep forgetting until somebody leaves a voicemail and says something.
Erica
Oh, that's awesome.
Abby
I need to change it to something a little more professional.
Erica
I think for the longest time I had the Jungle Book (both begin singing The Bare Necessities) "it's for the bare necessities, the simple bare necessisites..." (laughter from both) It was my ringtone and I swear anytime I would answer the phone, people would just be in the best mood and "Oh, I love that song!" and I had like forgotten that I had done that. Yeah. I don't think they do ringback tones anymore. I kind of wish they would because that put people in a good mood.
Abby
Ooooooh! No, no, no. It can happen!
Erica
Do they? Okay, I will have to do that.
Abby
I do Mariah Carey at Christmas, (Abby begin singing Mariah Carey's "All I want for Christmas) "All I want for Christmas is yooooou. Doo, Doo Doo..."
Erica
(Erica attempts to chime in) "...ooooh, baby." (laughter from both) I can't sing!
Abby
But you have the moves!
Erica
I can move, but I can't sing. Oooooh. So Abby, tell me about your family. You are the mom of four beautiful babies. Some of them probably are not babies anymore. They'll always be your babies, but they would not appreciate me saying that...I'm pretty sure.
Abby
They probably wouldn't. Yes, so my husband and I live in South Carolina with our four babies, who are not my babies. Wait whoa, wait. (laughter from both)
I STOLE THEM! I picked them up from Target! (laughter from both)
...let's start over!
Erica
....where you buy all the best stuff! (laughter from both)
You went in there. (laughing)
You went in there for flour and you left with four kids! (laughter from both)
"Babe, I was just gonna go get some pillowcases, but..." (laughter from both & breathing hard from laughter)
This is gonna be hard to edit! (laughter from both)
Abby
Oh my gosh, are you gonna have a blooper reel? You need to have a blooper reel and you can just combine it at the end of the season?
Erica
Yes, this. Yes, I plan to but this is, this like deserves a blooper episode of its own! I don't think...that woman who you took the kids from at Target, she left with a wicker laundry basket and she was okay with that!
Abby
She did! She was okay. She was okay. Oh my gosh. Yes, my name is Abby, and I live in South Carolina with my husband of 10 years and we have four children. We have a one-year-old, Lincoln is our four-year-old with complex needs, and then we have a six and eight-year-old. And I'm homeschooling the older two. So...
Erica
And you're one of those lucky families that have an equal disbursement of boys and girls. How cool?
Abby
Oh yes! I had boy, boy, girl, boy, girl. I love it!
Erica
I feel like, in thinking back about it, really so much of it was focusing on us being new to home health, nursing, and like how nervous we were. And I got to thinking about your experience of listening to it because you're coming out from a situation where you don't have home health nursing right now. Tell me what that was like?
Abby
Well, in listening to your experience with Amelia, it took me back to when we were looking for home health in the very beginning. And much of the same nervousness and apprehension and something you said I was like, "I so relate to that!". But almost feeling, I can't remember how you phrased it, but almost feeling like a failure as a mom...
Erica
Um-hum. Yeah.
Abby
...and accepting the help. And I definitely related to that, even in thinking about looking for nursing again, I am seeing those feelings well up of like, I'm not enough. And I'm happy, I should be able to do this on my own. And also not wanting to relinquish the time with Lincoln to someone else. And then you know, the nervousness in having to open your home and trust someone else. So I definitely related to so much of your own experience and your apprehension about it in the beginning and then the blessing that it came to be as well.
Erica
Uh-huh. We're in a really rural area, and it's just really hard to find a nurse period. And I'm sure right now with we're coming out, I say we're coming out of a pandemic, but are we really? I don't know...
Abby
We aren't, everyone else is!
Erica
Exactly. So it's just, you know, further compounded difficulty in finding a quality home health nurse. So I'm curious to know because you guys know you're a little bit rural, you are probably more in the suburbs, so what is it like to find a home health nurse there?I ll and hope that your son is doing better.
Abby
Finding home health nursing in our town is extremely difficult. I don't know if we are as rural as you are, but we are about 50 minutes from the biggest city. Our ittybitty town is next to a bigger one. Anyway, we're about 15 minutes from our local Children's Hospital. So any nurses that we would want to hire are going to have to drive an hour almost to come to us and in your home. And they don't, their benefits aren't enough to make it worthwhile.
Erica
Yeah…
Abby
They're not making nearly as much pay. They don't get any insurance, which is ridiculous. They're like, it doesn't make sense.
Erica
Yeah. Yeah.
Abby
So finding a nurse has been extremely difficult. I mean, I want to say that we've had a file open, Medicaid supposed to be helping find a nurse. Ummmm, I feel I feel like we've had a file open since Lincoln was born. So you know, four years now and we found two. Well, we found three - one long term, one had a short tenure, which was for the best, and the third had a short one as well and we found her and that was just circumstantial. So all on good terms. Anytime we have a hospital stay or I find out someone's a nurse and we have a good exchange. I mean, I sound like door to door salesmen like, "Well, if you want less stress, there's a little boy who would love for you to come on over and we'll feed you and you can be our nurse." And there'll be a lot of flexibility. I mean, I sell our family all the time to be nurses, hoping that one day somebody will be like, "You know what, I'd rather be with Lincoln than the stress of the hospital." It hasn't worked yet. But...
Erica
I'm just curious the ones that you've hired, are those the only ones that you have met? Or do you have, like, meet and greets with other ones that you haven't liked?
Abby
We had one meet and greet. That was terrible. Oh, my gosh, it was so it was so terrible. It was so terrible. Okay, this lady walked in. She didn't say very much. She was very quiet. And like the supervisor came with her. That's how we did interviews, the supervisor, and then the nurse. And she came in, and she didn't wash your hands, and then wanted to move Lincoln or asked if she wanted to hold Lincoln...I can't remember. So she's holding Lincoln, a little awkwardly and finally, there was this awkward pause. You know, we've asked all the questions, there's awkward pause, and she tells us a story about one of her children, her older children, who had some terrible rash that wouldn't go away for weeks and weeks. And I'm like, you are holding my child! You did not wash your hands! And this is what you want to tell us! We're like, "NOPE!". We thought that looking for a nurse was this list of questions and we learned after that, it's like, that experience, the first impression you know, instincts, like are you going to sanitizer or wash?
Erica
Yes.
Abby
That's just a basic thing. Basic.
Erica
Yes.
Abby
But it's super important for our kids, you know?
Erica
Oh, yeah!
Abby
Their health is literally on your hands.
Erica
Well, it also tells you what their natural tendencies and habits are, right? Like, if she didn't walk in and immediately wash her hands, you can expect that every day, which means everywhere she's going, she's not doing that, which is concerning. We have had several people that we've done that initial meet and greet with, that we didn't end up hiring. And it's been actually for such opposite reasons. It's not always the same. The first nurse that we met, I liked her but she had just lost a patient who she had been with for 16 years.
Abby
Awwwwww....
Erica
Their families went to church together. And like it had just been a month and I could tell that she was so attached to this family. And I remember telling Randy like, "I don't think, I don't think we can hire her because I am so afraid that she's going to have that expectation of that relationship. And what if we can't live up to that kind of closeness?" It broke my heart. And then we found Amelia. And then we've had others who were like, one nurse was like, "I love to be busy. I love to be moving." And this was back when I was like not letting them do anything. And I'm like, well, that's not gonna work. That's not our house...
Abby
Oh, my gosh, can you bring her back now?
Erica
She was so cool and upfront, she's like, "you know, I'm the type of nurse that goes into homes where kids don't have parents like you. There's either a lot of siblings that the parents really need to focus on. Or maybe they don't have the capacity or the competence to do this. That's the kind of family I need to be with." So it was a very respectful, “this won't work” situation. So when we talk about the experiences as a whole, I don't know about you, but I took so long for me that first initial list of questions, and it has drastically changed from my first draft.
Abby
Oh, absolutely. I don't feel like you can be too picky.
Erica
Right?
Abby
I mean, if we're looking at your lobe sizes, then that's probably a problem. (laughter from both) But goodness, no, and, and you know, not, I mean, you and Randy are at home, my husband and I are at home, my husband worked from home. Obviously, I'm raising and homeschooling the other kids too. But especially for those that aren't at home, and they don't have to assess and see what's going on with the nurse and their child and how they're engaging with one another. I mean, you'd want to be even pickier and have cameras up everywhere.
Erica
Oh, absolutely. There is an added layer of suspicion, just fear in general, which can cast of course, all those other feelings, because yeah, you're away from your sick child, hoping that someone is going to watch them as good as you...I see as good as me and I can't tell you how many times we get busy and Margot's head has fallen forward and I'm like, "Ope, I wonder how long that's been fall forward!"
Abby
Yeah!
Erica
but I'm like, if a nurse did that…
Abby
Yup! Oh my gosh, that just happened to me with Lincoln. That same thing just happened like a week ago and I panicked. I was in the same room and I looked over and he was, he had stretched too far! Oh my gosh, that feeling. But yeah, if it were a nurse, you'd be like, "Where were you? It doesn't matter that you were right there. Where were you? Why did that even happen?"
Erica
We're opening up to the idea of adding more nurses currently. And the thing about that is, not only do you have the added layer of them being in your home, but now you have the added pressure of making sure they get along with your other nurses.
Abby
Yeah, I wanted to know how that works. So they both come at the same time. So you have one for each kid, same shift.
Erica
Uh-huh. And that can get a little sticky, right?
Abby
That can be tricky. Well, and, they probably have their own ways of doing things.
Erica
Yes!
Abby
Yeah.
Erica
And they both care about the kids on the same level, like deeply. It's just an added challenge, the dynamic, still something I'm hugely grateful for, you know, so...
Abby
Amelia was there for you. When you had Caratacus, and you got this diagnosis, you weren't expecting? What a blessing that was already, and entrusted Margot with her.
Erica
Uh huh. Huge.
Abby
And then she was able to help you guys during such a difficult time to be able to have that help at all. It just relieved one small thing that you didn't have to think about, like, I love. I love that it worked out organically that way.
Erica
It did. It's so weird, though, because I hadn't fully committed my trust to the situation until I had to. ...and that was the moment when I was like, “I have to do this so.” And she totally stepped up and stepped in. And she's always been part time because prior till recently, she had another family that she had been with before us and they were part time. So she was doing two part time families. So she shifted some stuff, I think, with her other family to be sure she could be there for us. So it wasn't just our nurse doing this, without telling them any details, they were also understanding of her needing to be there for us, which was huge.
Abby
Right! So that is huge. And I'm sure you would do the same for that family too. If...
Erica
Absolutely.
Abby
...they had a situation.
Erica
Yeah. So when you did recruit your own nurses, what did you do? And how was it that successful for you?
Abby
Well, it's not successful yet. Well, I shouldn't say that. So we did find a nurse on our own through our son's school. Her son was in the same class, we got to talking and she's actually an ICU nurse. So we got to talking and she was willing to come on board and do a couple shifts with us, which was fantastic and she was amazing and I would keep her forever if I could, but the hospital pay is not comparable to home health. And she is the primary breadwinner in her home. So, I mean...
Erica
Yeah, so that is definitely a problem in our area too, because there's like four different hospitals that people could be working out with really awesome benefits. And...
Abby
Right!
Erica
You know, it's so crazy, like to be in healthcare and to think that these people are working with vulnerable patients and they don't even have great health care?
Abby
Yeah, no, I wish I could change that on like, the national level, right?
Erica
Yeah!
Abby
And, our state actually does a really good job at a lot of things. But the nursing companies just don't get enough money from the government to be able to afford nursing. It worked out for us that our long term nurse, she is a married mom of six and she wanted to be available to her kids more often and go to their games. So with working with us, she was able to set her own hours and have the flexibility she needed. And we also were able to have the flexibility we needed because, you know, if one of her kids gets sick or Lincoln gets sick, we're not gonna we're not gonna have her around. So, I mean, if she were out of work for a month, because he's in the hospital, it sucks to not have an income.
Erica
Yeah, yeah.
Abby
So that kind of situation was really ideal.
Erica
Our nursing agency, we have a really good relationship with them, and I feel like they know our family. I feel like they've maybe not sent us certain people after finding out like what we were definitely not open to, if that makes sense.
Abby
Absolutely. (laughter from both)
Erica
So do you feel like you have that same camaraderie and relationship with your nursing agency? Do you think maybe they're holding out sending new people knowing that they're not good enough?
Abby
I don't think we have that same relationship because I think our nursing company was really understaffed. The one supervisor of our nurse, she was wonderful. You know, when it comes to filling out the monthly paperwork, because there's so much charting that goes into play. The charting they have to do is ridiculous, like, do you want them to care for the child at all, or write it all down?
Erica
I'm hopeful most places are going to be coming out with an electronic record keeping system. Soon.
Abby
Our nurse had something like that, she had an iPad, but then she also did some paper charting. And it was like, come on,
Erica
Oh yeah...
Abby
...Follow through all the way,
Erica
Do it one way or don't do it at all. That's annoying.
Abby
And with our kids, they never fit in the boxes, ever. The paperwork is not created for the medically complex. So I know the supervisor was really good about whatever work around she needed to do. She knew Lincoln and our family well, and would speak well of our nurse and so we had good standing there, but the company as a whole, we didn't have the advantage of that relationship that you have. They did send an older lady to us once, which I would be fine with. Except that I don't think she could lift him.
Erica
That was, we had the same thing happen.
Abby
We need to think about these things. We don't have a lift, like he's not at the weight limit where you have to have a bit of lift yet. So that didn't pan out, she was super sweet. When we started our journey to look for a nurse, I thought what I wanted was someone with experience...
Erica
MmmHmm...
Abby
...someone who had worked in the PICU, somebody who had pediatric complex experience.
Erica
Bahahaha (Erica laughing), like they're gonna go into home health nursing.
Abby
(laughter from both) Riiiight now I see how wrong I was. I thought I needed somebody with all this experience, then I could trust them.
Erica
I am blushing so hard because I was the same way.
Abby
Like, no, you need to be able to do all the things and revive my child and TPN and ECMO, like all of it! He doesn't need that stuff, but you need to know it, you know? (laughter from both) But now, I'm like, you know, maybe I should go to the college over here and grab a fresh new nurse who can lift my son!
Erica
Yes!
Abby
That's what I'm thinking, my standards are changing. Is she willing, or he...but typically, it's mostly women in the field, you know? Well honestly, I would probably pick the “she” because I am nursing all the livelong day...
Erica
Boobs out all time. Yeah.
Abby
Do want another layer of awkwardness. Um, it would be awkward for me.
Erica
Oh, yeah. My nurse has seen my boobs more than I think, my husband during those years.
Abby
BAHAHAHAHA (laughter from both)
Erica
Well you know, we only have one bathroom at the time. So she was seeing all my post-pregnancy cart of pads and you know, your witch hazel stuff like...poor girl who has never had kids probably is never going to because of what she saw me go through.
Abby
HAHAHA! Amelia, you had your chance to get out. It's your fault that you didn't. What a great precursor.
Erica
Right. Yeah. I mean, we did not talk about that. But I think you and I have had some conversations about how things on a personal level can be awkward without as much privacy as you normally get in your home when you're alone. And that was a component of this that I had not even considered. You know, when I came home with Margot, we didn't have nursing for the first year. With Caratacus I've got this person in my home watching me as I go through these weird changes hormonally. And Oh, there goes my boob again...it's just leaking. You know...
Abby
I mean, it's the perfect time for an audience
Erica
Right! Hahah. Yes. So when we talk about us having bonded with me becoming more trusting of her really, it's because I just had to like, admit defeat at that point, so... I used to clean my house before every therapist walked through the door. It's very different. Now. I don't even do that at all. Did you have the same reservations and like fear? ....but you also already had two kids, so your bar was already lowered? Right? (Abby starts laughing) That's what happens with more kids that you have that like bar perfection is lowered.
Abby
What's funny is that my husband's bar hasn't lowered yet.
Erica
Ahhhhh...
Abby
...and so it took a long time for him to feel comfortable with people walking into our home, with it being the chaos that it was. Not to put him on the spot or anything...
Erica
I know I was just hyper critical of myself and my home and our messes and...more than anything, if I look back at it, I was fearful of the judgment.
Abby
Mmmmhmmm.
Erica
Did you ever feel that way?
Abby
Mmmhmm. I think I did a little bit with the first nursing experience. We hired someone to be a night nurse and so I felt the need to pick up before she would come, which is stressful because also she wasn't starting your shift until 11 or 12 at night. So yeah, that was a learning opportunity for me too. That wasn't actually restful in the end, for us. That was just a unique experience. She was really sweet. There was a thing that happened where one morning, she called for us from across the house, and Lincoln was choking, vomiting, and we had to call 911 for the first time, which was really sobering and scary. It ended up that everything was fine in the end. I think he came home, I can't remember if he was sick or not. But in hindsight, she wasn't comfortable with suctioning and I think that's why he choked.
Erica
Yeah...
Abby
...and we didn't know that sectioning was an important part to his care, like multiple times in an hour. And in the end, I was very anxious about having to let her go and I didn't want to do it. And God was gracious and the nursing company randomly dropped us. And that was that. She had another full time job, so she was already...
Erica
Yeah....
Abby
...things are crazy for her. So it just worked itself out. So that was very unsettling.
Erica
Suctioning is a necessity in our life. You have to have someone who is not afraid to get, I don't want to use the word aggressive....One of our nurses, Kaylee, she's like, "I'm gonna get it. I'm getting it!" She's like, "I'm sorry, buddy but we're going in there." And you know...
Abby
I should have known when I went to suction when she was holding Lincoln, and she turned her head away.
Erica
(Gasp) Ooooo...
Abby
And I should have, I should have known that, like, I mean, she was a psych nurse so she wasn't in the hospital dealing with bodily fluids all the time. So that was kind of an insightful experience. But yeah, our long term nurse is absolutely wonderful. She's a mom of six kids and she came in the first day we met her, and she cuddled Lincoln, was cozy with him and confident. I don't ever remember it being awkward with her. From the beginning. She was hands on. And she's like that nurse you said you interviewed who's like, wants to come in and be busy. She has cared for our family beyond just Lincoln. I can't tell you how many times she has done my laundry. And it's not something that nurses are supposed to do necessarily if it's not their patient's laundry. She came in and made my home better than what it was before. Now she stayed out of the kitchen, which is fine. (laughter from both) She was super wonderful, though. And because my husband worked from home, she would tend to my other kids too, because we're going through years of Lincoln crying for hours and hours and hours. So at night from 6pm till 12am, I would hold Lincoln and he would cry. And meanwhile we had a four and a two year old at home who needed to be looked after. And so you know, we were running on fumes. And there were so many times where - it's okay, I can say her name because she's wonderful - where Carrie would, I mean, we went to so many doctor appointments together, you know. Just as you have to drive far to St. Louis, like four hours, we're driving like six hours to Duke and back. And those were long days. And so she was often my second set of ears hearing hard diagnoses. Time and time again, even off the clock, she would come in and sit with Lincoln in the hospital to give us a break. She even told the doctor what for, like she gave a doctor what for and I love her for it. And she refers to Lincoln to this day as her baby. And so I was really looking forward to having her on board when we had our fourth baby. And then right before I delivered, like a month before, just years of being a nurse affected her back and this chronic back pain, basically disabled her.
Erica
Mm hmm.
Abby
It was really difficult for me on a professional and a personal level, because professionally, I was very disappointed - which is it wasn't her fault - but I'm like, "What am I gonna do?", like I was, I was counting on this help. And then on a personal level, like that was really disappointing that she was in such pain and all that. So we actually went through the birth of our fourth child and this whole pandemic, and now homeschooling two children without any nursing help. Carrie was one of the biggest
blessings to ever cross our path on this journey. And I'm really glad we took the chance on nursing and found her because she is like a diamond in the rough. Is that the right saying?. She's the brightest crayon in the box!
Erica
Oh, like that! (laughter from both)
Abby
But she was a huge blessing in a really difficult season. And I love that she actually has so much possible experience. I can ask her about anything and she knows the answer. And she's all about deep sectioning and getting in there. So you know, that's, that's five stars, in my opinion.
Erica
Absolutely.
Abby
What's gonna be hard now is that she set the bar so high. When you find a good nurse, they set the bar really high and then you're like, "Well, how are we not going to measure everybody up against you?" Do I even want to take the chance to trust someone else like, aaaaaah, I don't know. I don't know. We're still gonna try. But....
Erica
It is so hard. Yeah, it is, that is really...there's so many things that you said in that and I'm like trying to sit with. The first one is this reality of the back issue. Our kids are not easy to move around, to do therapies with. I know that one of the things we least enjoy doing is bath time, because...
Abby
SAME!
Erica
...getting a kid like ours in and out of the bath, it is a lot on our backs. It's a big problem, it's a really big concern. So if you are getting someone young and fresh out of school, you run the risk of them maybe not being as comfortable with doing things like suctioning or, hearing or picking up on certain lung sounds that should be concerning to them, things like that. But the opposite of that is you have a veteran, this amazing nurse like Carrie, who knows the ins and outs and can teach you and in the meantime, you have that her body is worn down.
Abby
Mmmmm, Yeah.
Erica
You had said something about...it was that moment when Lincoln was crying non-stop, and Carrie was helping care for your other children. That is huge. Because if I remember correctly, during that time, they only want us so you kind of need the help with the other kids while you can do that, right?
Abby
Well, how it worked out for us is that Lincoln wouldn't start crying until at night when she was gone. So she never saw that side of him.
Erica
Oh, man. No, he did not. No he did not!
Abby
He saved it all. For me. Saved it all for me. It was, there's something about nighttime. And when we had a night nurse, there were some nights where I handed him off to her and he was crying and that was really difficult. But I knew, I knew that it was, I knew that I needed to step away and, like, I needed that break. It didn't happen very often and so I needed to do it. But then I would eat myself up with guilt thinking, "What if he wants me? And he's trying to tell me? Or he can't tell me?". So there was guilt with that. Carrie caring for the whole family, the fact that she took it upon herself to do my laundry, she's proactive, or if I would go to the grocery store, I'd come back and sometimes my living room would be picked up because she'd already taken care of Lincoln's needs and now she's meeting the needs of our family. And that was a huge blessing because I couldn't do that at night, I was holding a crying baby for hours and hours. And my husband couldn't do it because he's taking care of the other kids. So those were practical ways that she was able to love our family as a whole because I was I spent in every way.
Erica
Yeah.
Abby
And so that was a huge help. And now she hasn't been addicted to her laundry skills.
Erica
After listening to that episode, what thoughts do you have? What would you want to share with other families about home health nursing who may or may be feeling that same anxiety that we felt?
Abby
I definitely think it's wise to ask other special needs parents who have been through this, what their questions would be, like you and I talked about, how those things drastically changed through experience, what we thought we were looking for changed over time. Some of the things are non-negotiables, you know, loving, willing to learn, kind, somebody that is easy to enter into your home, that would be an extension of your family. I think some things that can help to ease the anxiety, is to be prepared. It is not ridiculous to put cameras in your house, that is a very wise thing to do for everybody's sake, and it helps hold your nurses accountable too. So I definitely don't think that's overstepping, or ridiculous, or dramatic. I think that's a very wise thing. And if you end up with a gem like you and I have had, then you don't need them.
Erica
Right.
Abby
Which would be great to not meet them. But I think it's okay to go in with caution because not everybody is in the field for the right reasons. And we've seen horror stories in different groups. You know, not even horror stories, but the nurse who sits on her phone all day and neglects the child. Like that's just not acceptable. So I think it's good to go in with a list of expectations. The hard thing in the beginning is you don't, you don't even know yet what your child needs. So it's hard to come up with that list of: you need to do this, this, and this kind of care and whatnot. So, that might be something where it's helpful to ask another parent for a makeshift list of like hygiene things and making formula because you know, in the beginning, I even remember you talking about how hard it was for you to let go of just the basic things and trust the nurse to do them until it came to a crisis point. So it would be good to be able to build that trust up before the crisis point, because the whole point of a nurse is to help you get a break.
Erica
No, you're absolutely right. Like, I wouldn't let my kids be bathed by our nurses until really very recently. And I think my comfort with it is that I am just so busy and there are going to be times when they need a bath because they had, maybe, a really big mess.
Abby
Yeah...
Erica
...and I can't stop what I'm doing. So I have to let go of that control. But I always just felt like, you know, this is such an intimate thing...
Abby
Riiiight.
Erica
...Mommy and Daddy need to be doing it. It's our time to, this sounds terrible, but look over their bodies, make sure they're okay, make sure there's no sores, no bruises, no scratches. Not from necessarily a nurse, but just in general from like, their positioning or whatever they were sitting in. So, I've let go, but I think it came with trust and time. And...
Abby
Absolutely.
Erica
Amelia said something really interesting to me when she mentioned how she is there for the child, but she's also there for the family.
Abby
Mm hmm.
Erica
That really struck me because when you go into this, you are just like tunnel vision: the child.
Abby
Right.
Erica
...and you forget, or you don't even realize yet how this person is going to come into your life and help you...
Abby
Right...
Erica
...as a mom, as a person, as a friend. So I don't know about you, but for me running the simple errand was so anxiety inducing if I felt like I had to take Margot, and just knowing that there was going to be a nurse on a specific day, and that I could do my errands then, it was such a relief. Just knowing I didn't have to get her out, I wouldn't have to worry about a feeding pump at a grocery store, or anything like that. So in them caring for the child, that really helped me.
Abby
No, I totally relate to that because how we use our nursing time can be stressful too You're like, "I only have somebody for this amount of time. What am I gonna do? Like, there's so many options! Am I going to sleep? Am I going to shower? Am I going to clean? Am I going to go to the grocery store?" I would often stress myself out too, then I'm like, “Now I only have two hours. I better hurry up and make up my mind!” Those little things. It's not, I think, maybe from the outside looking in, one might think, "Oh, nursing help. I wish I could have that so I could have a day off". But it's not a day off. You know, like, we're doing normal things!
Erica
It's a day of catch up!
Abby
If I wasn't, if Carrie wasn't going with me to appointments there weren't that many days that we were actually just at home. And I would be at the grocery store, or I'd be cooking dinner. Like it was the basic stuff. But it was still a huge help. So I think if I could go back, I would be like you need to actually take one of those days off and go. Anyway. So, I think we need to establish that kind of relationship with a nurse where you trust them implicitly, then I think it is really important to take that time to take care of you and your family. And so, that's looked a lot that's looked different at times, maybe it means I need to take one kid out. Maybe it means I need to go out without them and leave them all behind. And the part about Amelia caring for the whole family, that is huge. It makes all the difference, because knowing that Carrie loves my other kids just as much as she loves Lincoln is a tremendous help. And we joke that she's our sister wife, because we have such a good rapport, you know?
Erica
Mm hmm.
Abby
That's gonna sound really weird. So if you need to edit that out...(laughter from both)
Erica
Sometimes it feels that way.
Abby
It does! I mean... Oh my gosh.
Erica
Yeah, our nurses have seen so much! The good qualities of our relationships, the weaker qualities of our relationships. I wouldn't say bad. Definitely when we're having more challenging times. You know what, I was so nervous about someone coming into my life and judging my physical home, I forgot about how our emotions were going to be put on display as well. And I'll be honest, Randy, and I never really did have a lot of fights or arguments prior to our kids. I don't think that's unique to special needs kids. I think that's just becoming parents. You become sleep deprived...
Abby
Yeah.
Erica
Hungry...
Abby
Hangry.
Erica
Yeah. And suddenly, you know, you just you're stressed. Maybe our lives do breed more stress, but it never feels that like, we might have a moment where maybe I'm being ugly or he's being ugly and it's totally happened in front of a nurse. And then like, you know, later that day we were like, "sorry", and they're like, "No, it's fine. You should have seen me last night with my partner." (Abby giggling) And you feel better about it because you're like, "Okay, we don't get to see your stuff even though we know everybody has their things", you know. But that part is such an easy part to get over, honestly, when you have someone good in your home, because you don't feel...
Abby
Absolutely
Erica
...like it's held against you, it feels very normal. You know...
Abby
Carrie will often side with either one of us. So she's our mediator about dumb stuff not about like serious stuff. We save that for later.
Erica
I call Amelia our enabler because anytime we have a crazy idea, be it terrible fast food or how we need to purchase something for the kids, and it's kind of a reckless abandon idea, she's like, "Yeah, go for it. That's a good idea!" and I'm like, "Amelia. You're supposed to be our voice of reason!". She's like, "Well, you know, I mean, it's not..." just always, she's so sweet and always the enabler. Although Kaylee is just as much of an enabler, she spoils our family and our kids rotten. So anyway...I digress. Um...
Abby
It looks like Randy is under the covers behind you.
Erica
Oh, I know...
Abby
That looks like a person!
Erica
I texted and Randy said, "Randy, have an interview as soon as I get home. Can you make the bed?" (Abby starts cracking up and snorting) Now you've seen the background before. This is his version. Like, our fancy pillows are just here. The cat was under the bed and eventually tunneled her way out over there, which is why it’s flipped up. I think that's just a pillow. I haven't checked. And I haven't seen Randy...so let me just make sure it's not him real fast...(Abby cracking up) Yeah, no we are good. Okay...
Abby
Oh, my word.
Erica
Yeah. So...
Abby
That is too funny. He's going for the rustic slept in look. Justin would have a similar style.
Erica
Ok, would he? Okay, that makes me feel better.
Abby
Yeah. Yeah, you're not alone.
Erica
They are on the bed, which is like, okay, whatever.
Abby
Justin is in the garage today cutting, carving out dresser panels on the machine he built right.
Erica
Hmm.
Abby
But the man could not make a sandwich for the life of him today. (Justin yelling from the background, "I can hear you!") (laughter from both) He said I can hear you... He could not assemble it for him. Bless his heart. He looked at the pantry for a while like nothing is gonna make itself for you. I've tried! It doesn't work that way.
Erica
So he builds a 3D - what is it, like an engraver, wood cutter - as something to help your dad build an airplane, if I remember correctly?
Abby
Yeah. Isn't that weird? I've have a crazy family.
Erica
And yet he, the sandwich, is a challenge?
Abby
It is. And I don't...
Erica
What did he end up going with?
Abby
I made him a sandwich. I made it and I took it out there and I said, "You're, you're pathetic. I love you." (laughter from both)
Erica
Is it like when other people, like I'll never forget my mom's ice water or her tea always tasted better than if I made ice water myself. That's what it is. It's that your sandwiches are better Abby.
Abby
I'm telling you! I make a plate of vegetables for my children and they'd be like, "Ewwww", I make it for myself and they're like, "Oh, I want some of that!"
Erica
Well, I just want to thank you for doing this. I hope you know you are now being strong-armed into future Afterthoughts episodes.
Abby
I can't wait!
Erica
And if we can make them as funny as this, then we're golden. This is great. (Abby erupts in laughter)
Abby
It was great fun.
Erica
We have to have some light hearted bookends for some of these heavier episodes.
Abby
I tell ya.
Erica
Well, friends, there you have it. I hope you enjoyed this episode that Abby wanted to title, "Awkward Afterthoughts" and I mean, that would have been a fitting title. You know, it took everything in me not to edit out some parts that admittedly continued making me blush well into my 10th run of listening to it while editing. But, I vowed to show up to this platform, bearing all my truths. Some just happened to be more embarrassing than others. Hopefully you were able to get a good laugh while also learning some valuable information as well. So if you can relate to this content, and you're interested in becoming a guest or hosting your own conversation, please don't hesitate to reach out to me.
If you can relate to this content, and you're interested in being a guest or hosting your own conversation, please don't hesitate to reach out to me. You can reach me through the website at www.atypicaltruth.org. You can also find Atypical Truth on Facebook and Instagram.
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The beautiful soundscape behind this podcast is titled "Rugla" it's performed by my favorite contemporary music collective from Iceland Amiina. The cover art for Atypical Truth was designed by the lovely and very talented Kendall Bell @littlebell.co
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