When the Primary Caretaker of a Child With a Disability Gets Sick

As parents of kids with disabilities, we put everyone’s needs before our own. But what happens when the main caretaker gets sick? What happens when having other people care for our kids is not a doable option?

Join me in the latest episode of “Unexceptional Moms” where we address what happens when mom or dad get sick and help is hard to find.

Don’t forget to leave a review on iTunes or stitcher.

What was covered in the show with guest Leah Spring:

• Leah shared her cancer diagnosis.
• The emotional impact that a medical crisis has on the caretaker.
• Practical help that makes a difference when people caring for your child is not an option.
• The importance of routines and systems to help during times of crises.

All supporters of the show/blog will have access to a live video where I will be sharing how to create a plan so if a crisis happens, routines are put in place and anyone can easily jump in to help.

Become a Patron!

Transcript of the show:

Ellen 0:26
Welcome to Episode 32 of Unexceptional Moms podcast. Today we’re going to be talking about what happens when the primary caretaker gets sick, which I think is a very important topic to talk about, something that I think we do need to talk about, because there are no guarantees in life. And it is possible that as primary caretakers we could get sick. My guest today is Leah Spring, and Leah had cancer. So we really talked about the emotional impact that this cancer diagnosis had on her and her family. And the reality of what facing her own mortality, what that meant. We also talked about the help that she needed during that time because, listen, if somebody comes to my house, my mom, my sister, a friend, they can help with my kids, they can help take care of my kids, but in her case, and with her kids and their medical conditions, and the different needs of her family, having people come and help with her kids was not really doable. And there are other people who may be in her same situation where you can’t just have your mom or your dad or your neighbor or your friend just come and care for your kid, and it could be because of your child’s needs. Or it could be for so many different reasons. Right. So we talked about what was actually really helpful for her. What did she need from people. What did she need to do to take care of herself. And I really hope that her journey and her life story can really be an encouragement to some people who may find themselves in that situation. But as we talked, a big thing that we actually talked about was the importance of having systems or routines put into place, which was really her saving grace. And she has been so gracious and she wrote a blog post for all the patrons — for all the supporters of Unexceptional Moms and of my blog — where you can actually read how she organizes or how she does this laundry system.

Also, a couple of years ago, I taught an online course that was called, “From Surviving to Thriving,” and the basis of this course was actually to create some routines in life because, listen, when a crisis comes, it’s really hard to get back up. So I have some routines that I have created for my family so that anyone who comes into my house — they’re actually printed and laminated hanging on the walls — so anybody who comes into my house, they know exactly what needs to be done, and when, and how to help in that very practical way. But even if I don’t have someone who comes and helps, after a crisis, it is so much easier to get back on our feet. We are not just completely… in the lowest point, I guess you could say, after a crisis, because we do have a plan. And maybe that’s what routines allow; these routines allow for us to have a plan. So I am going to be sharing those routines with all my patrons, and if you want to be a patron and be a supporter, you can go to ellenstumbo.com and just go to the supporter tab. So I’m so excited for you to meet my friend Leah. Unfortunately, Erin was not able to join us, but we had a great conversation.

Ellen 4:12
Hi, Leah.

Leah
Hello.

Ellen 4:15
So, I thought we should start by telling everybody how we met.

Ellen 4:23
Remember?

Leah 4:24
I have memory loss.

Ellen 4:26
I was going to say, do you remember?

Leah 4:28
That was a really long time ago!

Ellen 4:30
It was!

Leah 4:32
Did you originally contact me through downsyn when downsyn existed?

Ellen 4:35
Yes. Before social media was what social media is now. So this was about —

Leah 4:38
When we had forums, which were awesome. I miss them.

Ellen 4:43
I do too. So this was about 12 years. Yeah, it was 12 years ago. And that’s how we met. We met through the forum. And I think the book “Gifts” had just released shortly before then.

Leah 4:55
Probably yeah. Yeah.

Ellen 4:56
Because I think I saw your name and I was like, “She’s one of the writers of the book ‘Gifts!’” and that was like a big deal. And you know, I knew little bit of your story just because of “Gifts” and Ann was one of the writers as well.

Leah
Yep.

Ellen
So I think we met in person the following summer. At Como zoo.

Leah
The zoo. That’s right.

Leah 5:23
Angela, the little Spitfire.

Ellen 5:26
I know. That’s when Angela asked my husband to give her a piggyback ride because —

Leah 5:32
She was so tired.

Ellen
She was so tired.

Leah 5:36
He piggy backed her, like all the way around the zoo.

Ellen
I think he called me and he was like, “I don’t know what to do.”

Ellen 5:44
So that’s how we met and back in the day, so 12 years ago, you had only Angela at home with you.

Leah 5:54
Yeah.

Ellen 5:56
So that was one child. Although you had three other grown kids or four?

Leah 6:01
I had four, four others,

Ellen 6:03
Four others, and then Angela. And how many children do you have a home now?

Leah 6:09
I currently have six at home.

Ellen 6:12
Okay, so tell everybody about your beautiful family.

Leah 6:17
Oh, so my family is a lot of people. So the adult kids are my two stepsons, who I raised from the time they were little tiny people. My two biological boys. Angela, who is now 23 and lives at home, who has Down syndrome. Axel who’s 19 and has Down syndrome who we adopted from Serbia. Abel who is 16 and has Down syndrome and came from Serbia. Roman, who’s 16 and came to us domestically. Amos who is 15, has Down syndrome and came to us domestically via Ukraine. Audrey who’s 15 has Down syndrome and came to us from Serbia, and Asher who’s 15 and came to us also from Serbia. And all those kids, everybody at home except for one has Down syndrome.

Ellen 7:08
And Angela is your biological —

Leah 7:11
And Angela is my biological daughter. It’s a lot of people.

Ellen 7:15
It is a lot of people. And that’s your family.

Leah
That is my family, and Dean.

Ellen 7:19
And Dean. And your family functions really well. I mean, I’ve seen you. And you have really well behaved kids, when they’re with you.

Leah 7:31
Yes, when they’re with me, they’re pretty good.

Ellen 7:33
So when I see your family, I don’t feel like it’s this overwhelming group of people —

Leah 7:39
I think a lot of people think that’s what’s going to happen when they come to our house, that it’s going to be chaos and it’s really… actually our house is very quiet. It helps that most of the people here are nonverbal.

Ellen 7:53
And that’s what I bring it up because I think for people who are not familiar with the world of disability, probably, you know, from the outside looking in, they probably wonder about how much you have to do… which you do have to do a lot.

Leah 8:11
I do do a lot. And I don’t realize I think how much I do do.

Leah 8:18
Until, you know, we have a videographer here, doing stuff for the documentary and then, and he’s showing the clock by 9 a.m. I have, you know, 8,000 of my 10,000 steps in and I haven’t left my kitchen.

Ellen 8:38
Yes. Which as a side note, your documentary about your family hopefully will be releasing soon.

Leah 8:45
Yes, I, we’ve been in contact with the producer and he now has the captioning all done. And he now he’s just nailing down a venue. So we were hoping it’ll be out in December because my parents will leave for the winter. So we want it all before they leave.

Ellen 9:02
I will make sure to share that link so that people can get to know your family that way. Okay, so the reason I wanted you to be here is because you had cancer.

Leah
I did.

Ellen 9:18
And that was five years ago.

Leah 9:19
Yes, five and a half, five and a half. Yeah. April will be six years. So…

Ellen 9:26
Share how that happened. I mean, the diagnosis, the process having all the kids that you have,

Leah 9:34
So, we just brought Audrey home. You know, Audrey was brand new to us. I went in for a routine mammogram. In fact, it was so routine that Dean and I were going to make a date out of it. And we were going to stop and get coffee afterwards. So go do a mammogram, go get coffee while the kids are at school. And Dean’s previous wife died of breast cancer. So he was. I had kind of been putting off doing this mammogram for a while and he was really on me about it. So I said, “Fine. I will get it done.” And it didn’t work that way. I went in, did the mammogram and they put it up on a wall and you know, they were looking at it, they were comparing it to my old one and I looked at it went, “Oh, that that looks different,” told me I needed an ultrasound. And I had been in sonography school to be a sonographer and ultrasound tech prior to our adoptions, so I knew just enough to be dangerous. So while they were doing the ultrasound, I’m looking at it going, “Oh, that is not a cyst.” And then they send me out to the waiting room and they came back to get me and said, “Do you have anybody here with you today?” Which I started hyperventilating right there. They went and got Dean. The radiologist said, “Listen, this looks like this, we need to biopsy this, and we’re going to do it,” and I said OK, because this was like a Thursday and I’m like, or Wednesday and I was like, “OK, so come back tomorrow?” and she’s like, “Oh, no, we’ll do it right now. We’ll have the results tomorrow.” And I was like, “What?” While I was on the table, wait, she was going to start the biopsy procedure. And while I was laying there on the table, I looked at the radiologist and I said, “Listen, this is all you do all day long. What do you expect this to show? You know, since you see this every day?” And she said, “Well, listen, I like to be honest with my patients. And I’m going to tell you, I am 99.9% sure this is going to show you have cancer.” And I lost it. Right there. Big, giant, from the toes sobbing. She couldn’t do the biopsy yet. And she, you know, she does this every day. She just gave me my moment. And I finally caught my breath and said, “All right, let’s go. Let’s get it done.” But Dean didn’t know those words from her yet. And he didn’t hear that as he wasn’t in the room for that, he is sitting out in the waiting room by himself panicking inside, right? And when they got done with the biopsy and placed this thing and they got to do another mammogram to show where this little marker is that they put in there, and then I finally went to dress and I texted my sister and I said, all I said was, “Oh my god, it’s bad. It’s really, really, really bad.” Which left my sister in a panic, right? I said, I couldn’t even text, I kept dropping my phone. I went out to the waiting room where Dean was waiting for me and he didn’t know what the radiologists had said yet, so I was just like, “Get me out of here.” I couldn’t even think, I couldn’t see right, like it was bizarre. And we went out into the into the lobby and I went right to the floor. Just sobbing.

Leah 13:01
Dean realized, Oh, this is not good at all. So I had that moment there in the lobby watching people walk in and out the door and thinking, all I could think of, the only thought that kept going in my brain was oh my god, I have cancer. I can’t, okay, okay. Oh my god, I have cancer. And I’m sure Dean was going, Oh my god, I’m doing this again. You know? So we got in the car and I called my sister who was panicking and went from there.

Ellen 13:36
And you started chemo pretty soon after that correct?

Leah 13:40
No, I actually didn’t start chemo until June. First they do  — depending upon what the original biopsy shows — then I had a lumpectomy done, when they biopsy they need to make sure they got clear margins around the tumor and stuff like that, and then they send that off for other testing. One of those tests is called an oncotype and it tells you a couple different things, it tells you if you’ll benefit from the long term drugs, it tells you if you’ll benefit from chemo or not. Mine, of course, was in this little gray area group that was, you know, we know if the number is zero to 18 chemo is of no benefit for you. If you’re over — I don’t remember the numbers now, but I’m going to say 25 — if you’re over 25, we know that chemo is absolutely a benefit for you. I was in this gray area group where, they didn’t know if chemo was a benefit or not. So after consulting with the oncologist I opted to do chemotherapy because I didn’t want to be five years down the road have a recurrence and go home and go, “Oh man if only I’d done chemo” so I opted to do chemo and because for me and where my numbers were after those biopsies was literally a coin toss. So I tossed the coin, two heads.

Ellen 15:07
And then when was your big surgery? Your mastectomy?

Leah 15:10
And then my mastectomy wasn’t until September. That was after I’d finished chemo. And then they wanted me to do radiation after that. And so it was chemo and then radiation and it’s like 38 consecutive radiation treatments. I said, “What if I do a mastectomy?” and my surgeon said, “You don’t really need to do a mastectomy, like your risk of recurrence is going to be the same whether you do as mastectomy or not, and it’s not going to change” And I and I kind of said, “Well, you know, the same with chemo. I don’t want to be five years down the road and go, got it again. Dang, if only I’d done that mastectomy, maybe that would have helped me.” So I opted to do it. And actually, in the pre op room before surgery, my surgeon was still trying to talk me out of doing a mastectomy. And I said, he’s like, “A study just came out this morning, read this study that came out this morning,” and I said, “I get it. I get it. But for my head, I need to do the mastectomy.” So that’s what I did.

Ellen 16:16
Because you were not just thinking about yourself. I mean, it’s the reality of being a parent, right?

Leah 16:22
Right. It wasn’t just about me, it was like, what, okay, but if I get it, if I have a recurrence, what are the chances of that? Being I was stage 2A when I was diagnosed. What if, what if I am, I’m diagnosed with stage 4? Like, what if I could have prevented that and I can’t leave Dean with all these kids by himself. I needed to know that I did everything that I possibly could for my own peace of mind whether it was considered medically necessary or not.

Ellen 16:56
So at this point, you had five kids at home, correct?

Leah 16:58
At that time I had Angela, Axel, Asher, Audrey, Amos, five. No, I didn’t have Amos, or Abel? Yes, I had five.

Ellen 17:10
You had five at the time of your diagnosis.

Leah 17:13
You can keep track of my people.

Ellen 17:16
So when this happens, and you’re going through this health crisis, and you were the primary caretaker, what was the help that you really needed at the time?

Leah 17:24
It was twofold because one of the things was, I needed to incessantly talk about having cancer. Like, that was my way of processing. And I am sure that there were people around me who got really tired of that, but that was what I needed to do to process. What was going on the first few days, when we were waiting for confirmation of the diagnosis, that was actually over a weekend and I couldn’t, I was in a fog. I couldn’t think We hadn’t told Angela yet, so I was trying to not talk around her and I was crying every two seconds and the people were calling and I was like, you know, I just can’t talk to you right now. I just can’t.

Ellen 18:13
Which I want to say here that I remember texting you I think during that time and Dean texted back and he said, “You know, thanks for reaching out. She can’t talk right now.” That was really what he said “maybe later” kind of a thing. But he did. He took care of you.

Leah 18:34
He did? I’m going to cry.

Ellen 18:37
That was not the only time because I know that there were times that I would text you, you know, during chemo or you were going to have chemo and it was Dean who would respond and say, “I’ll send the love, she’s doing okay.”

Leah 18:47
The weird thing was, sitting in chemo and you sit at chemo for like, for hours, hours with nothing to do and you sitting there for three, four hours, sitting there like it’s very anti-climatic like chemo today and we go to the first one and like, I’m just going to sit here. Wow. Okay. For hours all day, the first one really takes a long time because they go real slow and making sure you’re not going to react to things.

Ellen 19:16
So for practical things that you needed.

Leah 19:20
So for practical things, our biggest thing, my biggest thing, was laundry and cooking.

Ellen 19:25
Laundry and cooking.

Leah 19:27
You know, with five kids in the house, so seven of us, there was a lot of laundry and Dean isn’t really a laundry person. However, I knew that, you know, I had talked to a lot of online groups, you know, who were preparing me for going through chemo and they said, “Listen, you’re going to need help with laundry. This is, that’s one of the areas you don’t realize how much energy laundry burns in your body and you’re not going to have the energy do it.” So I came up with a laundry system which I can share with you later that I set it up in a way that Dean, or anybody else could walk into, and see what needed to be done. And it wouldn’t have me later going, “Oh my god, the clothes are all screwed up and this kid’s got the wrong clothes.” It was very easy to see what needed to be done and where things needed to go and what kid needed laundry done. And it worked very well. And I still use that same system today for seven kids. So works well.

Ellen 20:36
Was it something that let’s say, I would have come to your house and said, “Hey, I’m here to do laundry.” I could have just looked at it and knowing exactly what to do.

Leah 20:46
Yep. Yep, that I had, like, you know, instruction sheet on our washer, how to work the washer. Stuff like that. So it’s really very simple.

Ellen 20:58
And it’s the reality of a crisis, right? So, as you know, I have taught an online class or workshop and that’s really the whole point. And it’s called “From Surviving to Thriving.” And it’s really about creating a system for your life that’s going to help you so that if a crisis happens, anybody who walks into your home, they can see what needs to be done, what’s expected. And things can function because in my experience, when you go through a crisis, it’s hard to do the simplest of things because they’re not simple anymore. Right? The crisis takes all your brainpower or your emotional capacity, sometimes physical capacity, that doing things like laundry, like vacuuming, like doing dishes, those things are so overwhelming on top of a crisis that then your home starts being in crisis.

Leah 22:01
Everything, everything goes. And I remember… so that weekend when we were waiting for my final results to come back and what type of cancer it was, all of that, we didn’t go anywhere. We holed up at home, you know, we were isolating and I did laundry that week and I was like, Oh my god, I’m gonna get all this laundry caught up, and I get all caught up and ready. So that weekend that we were waiting for those biopsy results to come back the full results was you know, we isolated we just closed ourselves to the world for those days and was decided I needed to get caught up on the laundry. I guess I get these things. I do this every time there’s something major in our house, whether it be a party that we’re having, or some major event I feel like every stitch of laundry has to be done so that’s my thing. And I remember I couldn’t even, I would pick up a shirt to fold it and oh my god I have cancer. Pick up the shirt, I have cancer and grab a hanger. Oh my god, I have cancer like it was the only thought in my brain. Or, okay, somebody’s got to have lunch, Oh my God, I have cancer. How is this even… and I would be in the middle of the most mundane thing like folding a T-shirt and start sobbing and go lock myself in the bathroom so I could compose myself. So the kids weren’t freaking out, you know.

Ellen 23:29
And it’s probably hard for us when we parent kids with disabilities or chronic conditions or medical issues, when all our focus is so often on our kids and we put ourselves last and we rarely take care of ourselves. And all of a sudden you have a medical crisis where you, the caretaker, you get sick, or it could be an accident, it could be so many things, and all of a sudden the world comes crashing down on you because you probably haven’t been caring for yourself before. But for all the care that you do for your kids, who is going to do that now?

Leah 24:06
Right, right, who’s going to help me and that, you know? Originally my doctor said this is going to be a three month speed bump for you and then you’re going to be back to normal and blah, blah, blah, blah but it didn’t really go that way. It was really a whole… the really intense part was an entire year.

Leah 24:24
So anytime I tell people now who are being newly diagnosed who say, “My doctor said, it’s going to go blah, blah, blah, blah.” Yeah. Don’t count on that. Because they don’t know until all of your test results are back and they know nothing. They’re guessing based on what they’ve seen in the past and everybody responds different, right? But I mean, I held on to that because that’s all I knew at the time. And that’s what got me through like, okay, we can handle three months of crisis. We can do that, we can do that. Easy.

Ellen 25:04
So you’re dealing with being a mom, being a parent, then the all-consuming thoughts of oh my goodness, I have cancer. And I’m guessing you had a lot of people saying, “Let me know what I can do to help.” Which nobody likes that question.

Leah 25:19
Right? Because you know, I couldn’t even think about myself much less. I couldn’t think of what or how to take care of myself much less how to instruct somebody how to take care of me, or how to tell somebody I didn’t have the energy to tell somebody how to come in and help with one of the kids and I felt guilty because when I was going through my rounds of chemo, there were people who were bringing meals or I knew that some friends were really going to want to visit and I would either hide in my bedroom because I just did not have the energy to talk to them. Or I would ask them to please just leave it on the front step because I just did not have the energy, or the ambition or the mental ability to visit with somebody.

Ellen 26:11
I’m really glad you say that because I think sometimes we need permission to say it’s okay for you not to be the nice sick person. You get to be sick, and you get to be exhausted, and you get to say, you know, be thankful for the help of course, we’re thankful for the person who drops off a lasagna, right? Thank you so much, and it helps so much because I didn’t have to figure out of dinner that night. But hopefully we have those friendships with people who understand, I can’t see you right now I have to take care of me. And taking care of me means that I can’t take care of you because even people who have good intentions, visiting is a two way, right? You still have to take care of that person, right? And that

Leah 27:00
And I couldn’t do it. I didn’t. I didn’t want somebody to see me with my eyes swollen to here or after chemo. So chemo affected my GI system in a really terrible way. And I might be in the middle of a sentence with you and need to run, literally run to the bathroom, and I may not make it and I may not come out of the bathroom without needing a shower. And that means I’m done talking to you. And I just didn’t want to deal with that, I didn’t want to, it was the physical part and the mental part. Like I just can’t talk to you right now. I can’t.

Leah 27:41
I can’t do the niceties. I can’t. I can’t be cordial, I can’t. Like it was beyond me at that moment at that time. I can’t play hostess, that’s what it was. I can’t. It was not that they expected me to, but in my head that’s what I had to do. So it was better for me to just hide in my bedroom.

Ellen 28:00
We talked about this before we started recording, but you said what was hard for you was giving up that control, right? With everything that you have to do.

Leah 28:12
Being the primary caretaker of the kids and in a household like ours where, I don’t want to say it’s micromanage, because it’s not so much like that, but we do have a routine and we do have a way of doing things that keep our kids stable. And to have somebody else walk in and try to take over that is just not a very pretty thing. And it’s hard for me to listen to it happening even if it was my rounds, my time after chemo, where I was really down because you have down days. I’m like, like physically down even if I was in my room with the door closed I couldn’t listen to what was happening because I would have to come out and give direction and that was so difficult. So for us, we’d very rarely did have somebody coming in to help with the kids.

Ellen 29:13
So let me just ask, was Dean then primarily the one caring for the kids?

Leah 29:17
So Dean was, my son Tyler came around periodically and helped. But Dean was it and Dean was keeping the boat floating. Yeah, that was why I think back to that, especially like the first night of chemo. We had 10 minutes to get from the oncology clinic to home, 10 minutes before my stomach kicked in. And we learned that the first round because the first round when I finished chemo, I waited for about a half hour for Dean to be able to come pick me up because he had to get kids off the bus. You have to function as normal family while mom is doing chemo you know, right? And so then we started having somebody either drop me off of chemo or I would call him about a half hour before I was done and say, “Okay, I’m going to be done. Come and get me.” And we had to time around the kids. It was just bizarre, time chemo around kids, but we did it.

Ellen 30:23
And that is a way that people were able to help you, that you found that to be very helpful, is to have people drive you to chemo and if necessary, then drive you back home.

Leah 30:33
Yes, if people drove me my first round, we started it later in the day so that Dean could go with me and they want you to not be alone your first round because they don’t know if you’re going to have a severe reaction to one of the drugs. So our first round we planned for, we put the kids on the bus and then we went to chemo, that was so weird in my head. But they started that round and then Dean left after a couple hours Dean left so that he could get kids off busses and I finished my stuff. And then he came to get me. And we learned that that didn’t work so well for my body. So my next rounds, we had somebody drive me to start so I could start chemo earlier in the day so that he could come and get me before the kids got out of school. And it’s just a learning process because everybody responds to chemo just a little bit differently. But how you respond the first round is usually how you’re going to respond each round after that.

Ellen 31:38
So those were practical things where, like you said, maybe it was harder to have someone come and step in with your kids who have very unique needs and like you said, they’re nonverbal. But help with you, to help you directly with some more practical things made more of a difference in your medical crisis.

Leah 32:01
Right, or having people brought meals which was incredibly helpful because Dean then on chemo days wasn’t trying to run everybody around and be in seven places at one time and also figure out dinner, or helping me when I needed help that night. You know, on the night of chemo, I was really sick and sometimes I was just sleeping. Other times I was back and forth to the bathroom 75,000 times and needed some help. And so he needed to be able to do that and take care of kids and not have to worry about making dinner.

Ellen 32:41
You know, and let me add as a side note, meals are super appreciated. But what I found with meals is that if you have someone willing to bring you a couple of freezer meals, having a freezer meal ready to go is also super helpful. Yes, I am a huge fan of freezer meals as you know, because yes, it’s gonna happen that you go, “tomorrow is going to be really busy” or even that morning you realize it’s going to be busy and being able to just pull it out of the freezer, and either stick it in the crock pot or the oven, or whatever it is, it’s done and it’s ready. So coordinating the day doesn’t matter as much because it’s already there.

Leah 33:20
Right? And people weren’t doing as many of the freezer meal things, like it hadn’t been a big thing yet.

Ellen 33:27
No, it’s my thing.

Leah 33:30
The other thing was, a friend tried to set up a meal train that was semi successful. The problem was people were signing up on it but not putting down what they were bringing. So we might have five days in a row of spaghetti. The other thing was we’re a big family, and a lot of times there wasn’t enough food. True, people brought a meal and they saw our three little ones, younger ones who were physically really small and they expected Well, they’re, you know, they’ve got these three little kids and then a couple older kids — I wasn’t really eating much, but our little kids were. They were recovering still, they ate like normal kids their age, not like the preschoolers that they looked like. So there were a couple times where we didn’t have enough food. And I had to say, “You guys, I so appreciate the fact that you brought food. Please don’t take I’m not appreciative but we need about double to get through dinner.” And I think that that’s just part of that as people are just not used to cooking for or buying for a giant, large family. You know, we weren’t giant at the time.

Ellen
You have good eaters.

Leah
We do have really good eaters. Yes.

Ellen 34:53
So that’s a reality. That’s a good point to bring up that maybe for those of us who have a friend maybe going through crisis, when we’re offering those meals, it’s a good idea to say “Do you need one pan of lasagna or do you need two pans of lasagna?

Leah 35:09
How many people do I need to feed? Like, people looked at our, you know, five kids and three of them were little so they planned on like, you know, feeding three kids, and no, we were feeding pre-teens.

Ellen 35:23
Yes. Who like to eat! You talked about how cancer or illness, really any crisis, it doesn’t just affect the person that it’s happening to. It affects everybody in the family.

Leah 35:36
It does. It affects everyone, the whole energy in the household changes. And when we were waiting for that final diagnosis, and I hadn’t told Angela yet, if you think that your kids don’t know, if you think that you’re hiding your tears and you’re going in the bathroom to cry and your kids are not noticing, you are wrong. They notice the change in the energy level in the household, they notice that anxiety, they’re very intuitive little people and they know these things. And they know, they know their mom walks around with puffy, puffy eyes because she’s been crying. They are aware of the hush whispers happening between you and your significant other. While you think you’re in the kitchen, quietly making dinner and discussing, you know, the events of the day, the kids are aware of all of it. It changed. It’s stressful, your body, your whole psyche is under extreme stress and your kids know. Granted, should you just jump in and tell them everything right then? No, you gotta wait till you have the right information to tell them the right whatever they need at that time. Or you know, you can say, you know, we found out some things today from the doctor and I’m waiting to find out more. Yes, I’m really upset. And the doctor just gave me some information today that was very unsettling and you know, next week, we’ll know more or whatever, you know?

Ellen 37:05
And I think it’s good to point out that you have kids who are nonverbal that I think a lot of people, they don’t recognize that nonverbal doesn’t mean not aware, right?

Leah 37:18
Yeah.

Ellen 37:21
Because Axel is nonverbal but he took very good care of you.

Leah 37:26
He was a nurse, between him and Angela, even Abel, who’s nonverbal. Abel’s favorite thing to do was put lotion on my head. And Abel, who didn’t like physical touch, liked to put lotion on my head and he did it in a very caring manner. I mean, he was very gentle, is the most gentle we’ve ever seen him. Axel was very concerned about my forte. When I got my board in. Mom, anytime I had a surgery. It was very wanted to know about the surgery. He would give me blanket and, and it’s really important to let your kids take care of you because they’re doing something they feel… they need to feel needed. When you think of your friends, who want to do something for you when you’re sick, or when there’s a crisis like that, because having a diagnosis like that isn’t just about you and it’s not even just about your family that lives in your house. It’s about the people around you. People will say, “What can I do for you,” because they feel helpless and they want to do something, and allowing them to do something, allowing them to bring me a meal or allowing them to come and help you with laundry is a way of taking care of them too, because they need to feel helpful, because they don’t know what else to do because they can’t fix it for you. They can’t make the cancer go away, they can’t make your terminal illness go away. They want to help you. Allowing them to help is ministry, you minister to them as well. And the same for your kids, allowing your kids to help you is caring for them. Because they need to feel needed. They need to feel like they can help you.

Ellen 39:20
What a powerful thing as a parent. I’m trying not to cry Leah!

Leah 39:25
I know know. I’m sorry.

Ellen 39:29
But I think, we care for our kids all the time, what a powerful experience as a parent when you recognize your kid is taking care of you. And your kid can take care of you in some ways, right? And allowing them to do that, like you said, what a what a gift for the kid to know, “I can do something to make life a little bit easier for mom.”

Leah 39:57
He’d get me a drink of water. And he’d go, “Do you want water mom?” He could say water, or he’d go give me tissues and he’d give me a blanket and give me my slippers and pretty soon I’m all bundled up on my recliner, and he’s bringing me more stuff. He was so caring and loving in that gesture, you know?

Ellen 40:20
And what a vulnerable position for you to be in, because you’re not the type of person who ever sits down.

Leah 40:27
Oh, gosh. I’m sitting still now!

Ellen 40:31
Yeah. Can I just tell them that we drove together yesterday and I was driving, and I came home and I told my husband, “I think that’s the last time I drive, Leah is going to drive from now on.”

Leah 40:44
Are you saying I’m a control freak?

Ellen 40:48
I’m just saying I’m fine if you drive.

Leah 40:50
No one will drive in my giant beast of a van.

Ellen 40:54
Yes, that everybody moves out of the way. So… meals are very helpful.

Leah 41:00
Yes, meals are very helpful,

Ellen 41:02
And an awesome laundry system, and all our patrons will get a copy of your system. So that’s really exciting. But you talked about having a chemo day routine.

Leah 41:15
Yeah, you know, it was weird. We had a chemo day routine and a surgery day routine. A mom’s in the hospital surgery day routine, which was bizarre, who needs to have that?

Ellen 41:24
Again, you know, the workshop that I teach, the online course, it’s all about routines. And about basically having a list of chores, I guess you could say organized, and I tell people you organize your laundry, like Monday is what day, Tuesday is what day — and some people like to do it just all in one day — but even the chores that you have every day in the family. And every person in my family has a bedtime routine. Every single one of them. Every single person has a wake up routine, a coming home from school routine. And for my mom or my sister, or anybody who comes over, they just look at the routines and they know what needs to happen. But you had that chemo day routine.

Leah 42:11
Yes. Which was helpful. Yes. And we had surgery day routine because I had a lot of surgeries. I’ve lost count but they were in the 20s. Well, my last surgery — which was indirectly related to cancer — was hernia repair that I had last spring, I think that was in March. Granted I was already in the hospital, so our routine was a little bit different but we’re kind of in a different place in life right now. Dean’s home full-time so the home routine really didn’t change much. You know, I have had friends who have been in the hospital for something and they get a little whiny if somebody doesn’t come and visit them or, “Where are the people?” Dean was feeling terrible because I’m in the hospital and I’m going to go have surgery and he’s not there. And I’m like, “Yeah, well, so there’s a house full of kids at home and we can’t just have somebody walk in and help with the kids, right? Just do that. I’m fine. I’m going to go have my really special nap because I really like those drugs a lot. So you just do your thing. And I’m going to do my thing over here.”

Ellen 43:28
And it works.

Leah
Yeah, yes.

Ellen 43:29
So I know that there’s probably going to be a parent listening to this. And maybe they were just diagnosed with cancer or maybe a chronic condition, or maybe they’re going through a pretty intense crisis right now. What would be your words of encouragement for that mom or dad?

Leah 43:53
You need to just breathe when you feel that anxiety, climbing, you feel it and all of a sudden you feel the panic taking over you just a little bit — I don’t have panic attacks or things like that, but it was my own level of anxiety, climbing. If you go to my blog and you keyword search, “breathe,” during that period of time in my blog, I bet I said it 700 times, just breathe in and breathe out. And then you can think a little more clearly, you know, and I am also a praying person. I have a strong belief in God, and Jesus Christ is my Savior. And I would say, “OK, God, what do I need to do right now? Like, I can’t see clearly. There’s 700 things pulling me and one of them is the fact I’m sick and I don’t know what to do right now.” And God reminded me every time just breathe. It seems too simple, right? But wait, but the hospital is calling about this and the doctors are calling about that. And then maybe the nursing home is calling about your aging parents or you know, there’s all these things. You have to breathe. You have to take an hour and not feel guilty about saying, “You know what, I need to walk away from this for a little bit. I’m going to go get myself a cup of coffee. I’m going to go stand in the public bathroom and lock myself in the stall and cry.” Because we need to cry, that’s healing for us. I’m in releasing all those endorphins and you need to be able to do that and not be ashamed or think that you can’t even take the time for that because you have to, you really have to.

Ellen 45:45
Well, Leah, thank you so much for joining us.

Leah 45:49
You’re welcome. Thank you for having me. It’s my pleasure.

Ellen 45:52
And I would like to have you back at some point to talk about having kids with disabilities who are no longer little kids but they’re young adults.

Leah 46:04
Yes, that’s fun!

Ellen 46:09
So thank you and have a good day.

Leah
Thank you. You too. Bye bye.

Ellen 46:13
Thank you for joining us on today’s episode. Just as a reminder for all the Patreon supporters, I will be sending a link to the blog post where she shared her amazing laundry system. And also a reminder that, as well, I am doing a video sharing all the routines that have helped my family during a crisis. Now I’m going to be super honest, we don’t follow them every day. We probably should. But when a crisis comes, it’s so much easier to get back up. So if you want to be a supporter and you want to have access to this, just go to ellenstumbo.com, click on the supporter tab, or you can go to patreon directly, patron.com/ellenstumbo. Thank you, and see you in two weeks.