Rayna Neises: 0:00

Welcome.This is Rayna Neises your host with A Season of Caring Podcast,where we share stories of hope for family caregivers breaking through the busyness and loneliness of caregiving to see God even in this season of caring.Today,I’m excited to introduce you to Shelly Virtue.She grew up as a pastor’s kid,graduated from Bible college and homeschooled her four children.She’s a full-time caregiver to her disabled adult son.And was the vice president of a youth center.She lives in Minnesota.I know crazy.With her husband who is probably just as crazy.That’s what I hear.Is that right?

Shelli Virtue: 0:36

He,he is a handful.

Rayna Neises: 0:39

Her deep desire is to encourage women to be the best possible woman,wife and mother they can be.Possibly through her thought-provoking Bible studies.She isn’t afraid to ask the difficult questions and be open to creative ways of thinking in her approach to better her relationships.Shelly,thanks so much for joining us today.

Shelli Virtue: 0:59

Thank you for having me.This is fun.

Rayna Neises: 1:01

It’s so fun to share different experiences with people because,you know,most of us are caregivers in different ways throughout our life.But you’ve had the opportunity to take care of your son.So tell us a little bit about him and what that caregiving looks like.

Shelli Virtue: 1:16

Sure.My husband and I take care of our son full-time.When he was an infant,like maybe between four and six months old,he started having what was called infantile spasms,which is a form of epilepsy.And the majority of children who have that,they outgrow it,usually about the age of two,but most of them will develop what is known as Linox Syndrome,which is what our son has,it’s one of the most debilitating forms of seizures that there are.So he is non-verbal.He is delayed in every way,physically,mentally.So we do everything for him,and that’s kind of what we’ve known for a long time now since he’s just about30years old.

Rayna Neises: 2:00

Wow.

Shelli Virtue: 2:01

Yep.

Rayna Neises: 2:02

So definitely a lifestyle for you with caregiving and so I’m sure when I ask you this question,but are,share a story about what it’s like in your caregiving world.

Shelli Virtue: 2:14

Oh my goodness it is.It’s a lot of work,but also since we’ve been doing it for so long,I think most of the time it’s automatic.I don’t necessarily think about it.One thing that I really enjoy as far as our son goes are the times that he laughs because since he’s non-verbal,we really don’t get a lot of input commun.We’ve never really heard him speak,you know,to never hear a child say mom or dad or anything,that can be really difficult.So our fun moments are when he laughs.We used to joke when he was a little baby,practically and,and a toddler really.There would be times in the middle of the night where we would wake up hearing him just laughing in his crib.We would have no idea and we would just,you know,say it must be the angels entertaining him.Even now,today at a30year old,he’s got this deep voice and when he laughs it is just,it brings a smile to your face.It is so fun to hear,and because it happens so infrequently,we often grab our phone and we have to get a video recording of it,and then on some of the bad days,we kind of play those videos back for him and ourselves.And that’s really what brings us the most joy in our caregiving of him.

Rayna Neises: 3:30

That’s fun and I think laughter is something we can miss or just take for granted.So I love that that’s such a special thing and that you really are embracing it.Is there something in particular that you can do that makes him laugh or is it just kind of random?You don’t really,you

Shelli Virtue: 3:45

No,it really,for the most part is it’s random.He will just all of a sudden start laughing.There were times when he was little where loud noises would make him laugh.So like if a chair fell over or something dropped there was one stage in his life where he would purposely tip over chairs.Because he loved the crashing sound,and then he would just sit and laugh.We have a lot of busted dining room table or dining room chairs,but it was still,you just,you couldn’t get upset about it because it’s just,it’s so amazing to hear him laugh.

Rayna Neises: 4:19

Mm-hmm.It was his little entertainment,so that’s fun.

Shelli Virtue: 4:24

yes.

Rayna Neises: 4:24

So what’s one thing that surprised you about caregiving?

Shelli Virtue: 4:29

I think I have been the most surprised by how each generation is now looking at disabilities in such a different way.I don’t know about you,but like when I grew up,like in high school,the special ed department was usually down one of those untraveled hallways and they rarely interacted.It was just really awkward if you happen to see them in the hallway.We weren’t really taught how to interact with,you know,other kids that had disabilities or differences than we did.So then to now have a child with disabilities,it just gives you a whole different perspective.And then I remember like one time it was probably not long after our son had gotten the full diagnosis of having l G S.He was probably about two at the time we were visiting one of his great grandparents.And she asked us,are you gonna put him in a state hospital?And we were just,we were just floored at that.Like,here,he’s only a few years old,but you know,really that generation if a child wasn’t gonna be able to contribute to the household,most were probably farmers and if their children couldn’t help with farm work and chores,they did not have the finances to help that child.And just that whole thought,it was just an automatic,are you gonna put’em in a state hospital?And then.You know,I think the next time something really hit me,our son was probably maybe about six years old or something at the time.That’s when we were homeschooling all of our kids.So on Fridays we would usually,as a fun thing,at the end of the week,we would take them to this indoor playground area where they had all these,ball pits and the little nets where you could crawl up above and,and everything.Well,our son could not do all that,that the other kids did.So I would usually take him into the toddler area and he was just sitting kind of in a corner on his own,playing with some stuff there,and this little boy comes over and just kicks him in the stomach for no reason.And it was just like,Wow.I was so stunned.I just,I stood there at first and the kid left the area and I was just attending my son,taking care of him.And the little boy came back and I was just like,you know,why did you do that?And he just kinda shrugged his shoulders,like he had no idea.And I think looking back on it now,I realize that it was just a fear.Of not having that kind of interaction,not knowing what to do,not understanding,and just a fear,you know.And then fast forward a few more years and our son is in school at that time.And just to see how even the public school system was then trying to integrate kids far more into the regular classrooms.And what a joy to just see other kids getting to interact with children with disabilities in an earlier age so they can begin to understand I think that’s just incredible what they have done.I guess I also forgot to mention,you know,back with,with the great grandparent,I,I never really faulted her because really we have so many more resources to take up on,you know that they did not have back then.And I am very,very grateful for the many ways that they do that.So then,so like our kids,we have four kids altogether,and so our three kids have obviously now grown up around someone with disabilities their whole lives,and it is just really fun to see how each one of them is pretty much now working in a realm that coincides with people with disabilities.So for instance,our daughter,She used to be a CNA working in a nursing home.She’s now transitioned to working with people with disabilities in their homes.And the amazing thing is that she’s in a community that is small enough that they allow her to bring her children with her to work.And it’s just an amazing opportunity,not only for the people she’s caring for,to have these little young boys coming to see them every day,but just the lessons they learn is just absolutely amazing.I am just,I’m astonished when I see my three-year-old grandson and the kind of compassion and love he already has.He often anticipates people’s needs before my daughter will even ask if he can go do something.He’ll anticipate a need and go take care of it for one of her clients.Just recently our son had an ambulatory e e g,and we kind of sent a picture over WhatsApp just for the family to see him when he was getting all hooked up to the E eeg.And he kind of had his head,you know,all bandaged and everything so that he wouldn’t pull out all the wires.And our grandson,his immediate response was,is Uncle Johnny okay?We need to call and make sure he’s okay.And it’s just this genuine compassion and love and understanding,and it’s just exciting to see each generation progressing in their knowledge and awareness of disabilities.

Rayna Neises: 9:50

Yeah,I think it’s really interesting because I do think education becomes a,a big piece of it.That exposure,like you said,it was hidden away for so long.The exposure makes such a big difference because it does allow you to see they’re a person and there’s differences,but they still have feelings and things like that.

Shelli Virtue: 10:08

Yes just last fall,we were at a wedding.And this little boy came up to me and was very inquisitive about our son,and I absolutely love that.I mean,I know that there were people that used to just say,just ignore it.Don’t ask questions.And so it was just so good to see young kids that weren’t afraid to come up and just ask questions.And I was happy to answer those questions because I would much rather they come and learn and understand rather than just point fingers and walk away or ignore.It’s just,I think that’s what has intrigued me the most over this whole journey is just seeing the growth in people and the understanding of of disabilities.

Rayna Neises: 10:54

Curiosity can get us a long way,can’t it?

Shelli Virtue: 10:57

It can,yes,indeed.

Rayna Neises: 10:59

And just asking those questions gives you the opportunity to really talk and also help them to understand,which then brings even more and understanding of others later.I know one of the things that was challenging for us as we were caring for my mom.With dementia,people often look fine.

Shelli Virtue: 11:19

Perfectly normal.

Rayna Neises: 11:21

And there’s a point,you know,in progression where there’s a hollowness in the appearance,but early stages they can have a lot of struggle,especially in different environments and with lots of choices.And I’ll never forget just how.Unkind servers were to our family because,and it was a little bit more,I think they were feeling defensive on my mom’s behalf,but they would put her on the spot and kind of just glare at you if you answered for her.And it was like,okay,you don’t get that she can’t,that you’re making her uncomfortable,you’re making this harder on her than if you just talk to me and let me have the conversation with you.So I love that.One of the things that I’ve found now is many caregivers are carrying a card that just says,my loved one has dementia.Please bear with us.Or just a little clue so that we don’t have to make a big deal in front of everyone,but at the same time to get us all on the same page.Most people don’t know,like your son,what,you know,what his disability is.They just know he has one.And so I think sometimes just even clueing in on,what abilities they have and,and allowing them to understand that.So it can be a tricky for sure.

Shelli Virtue: 12:32

it can.Yeah.

Rayna Neises: 12:33

but I love that you’re so open as a parent to wanna be able to have those conversations and I think that’s wonderful that children will ask because I do think there’s more curiosity in kids and as long as mom doesn’t rush them away like so many times probably they do.It’s good to be able to do that.So what would you say is an example of when God’s shown up for you guys in your caregiving?

Shelli Virtue: 13:00

I think overall we have grown so much in compassion and understanding.Just the strength and grace that we’ve been given to,to deal with this on a,on a daily basis.We’ve learned far more that we need to be the hands and feet and voice literally for our son.Think really that’s the,you know,the way that I experience at the deepest.

Rayna Neises: 13:31

It’s always beautiful when we can see how through where we are in life,how Christ did it as well.And so I think of just how compassionate he was to those that he was able to heal and how he noticed everyone.It wasn’t just the ones that were right in front of him,but he noticed all people.And I imagine that’s something that,really has grown that compassion is such an important piece for us to do that as well.

Shelli Virtue: 13:59

Yep.

Rayna Neises: 14:00

So what’s one thing that you feel like helps you to live content,love well,or care without regret?

Shelli Virtue: 14:09

For me,I have turned to writing.I’m at home.Pretty much every day,all day.We do get out on occasion with our son,but it’s a lot of work to do that.So I spend a lot of time at home.So I have really turned to writing.I write a lot about the things I’m learning in my own life.So that’s kind of how it all my writing stuff really grew out of me wanting to grow and mature in my own life.My very first study that I wrote was on relationships because I really feel like being at home all the time.I,I don’t have a lot of outside interactions,and I really kinda lacked in,that realm of developing relationships with people just because I,I don’t have the opportunity to be among a lot of people all the time.And so I really dug into that for myself,to stretch myself,to learn how to reach into other people’s worlds and not just isolate myself at home all the time.And so I think that’s really what I’ve just done for my self care is my writing.

Rayna Neises: 15:25

That’s amazing.And through that writing then you’ve been able to share what you’re experiencing in your growth and to really develop the those relationships in that way of being able to kind of mentor others by sharing your writing.So that’s amazing.

Shelli Virtue: 15:38

Yeah.

Rayna Neises: 15:40

As we wrap up,what would be one final nugget of wisdom you would offer to other caregivers that are listening today?

Shelli Virtue: 15:47

Well,I know this might be a hard one for some people,but I think that I have learned that not all prayers get answered.And just dealing with that hard reality.I think that this topic of our son and all that he’s been through has probably been the thing my husband and I and many other people have prayed for the most and the longest.We always,expected that like,you know,like how I said he had infantile spasms,at first we just pray,God,please let him be in that small minority that don’t develop L G S.But of course he did,and it’s just it.It’s really heart wrenching when the prayer that matters the most to you doesn’t get answered in the way that you want it to get answered.So in a lot of ways,you have to learn to become the answer to your own prayer.I mean,we show up for him every day,care for him,take care of him in every imagine a way a boy possible,feeding,bathing,grooming.Everything.And I think that is one reality I’ve had to learn is oftentimes we become the answer to our own prayers and that that’s a hard one to kind of stomach sometimes.You know,you just.You expect when,when your whole life,our,our whole life really has revolved around ministry and putting ourselves out there in every imaginable way,you know,for God and,and his work.And to then just your one main request,please God,please,and it just doesn’t happen.

Rayna Neises: 17:34

Yeah,it,that is such a hard truth.I appreciate you being honest about that.I know.I was so young when my mom was diagnosed,I was16and I was thankful that I had a really strong relationship with the Lord at that point.But it definitely was years of prayer for me.You know,don’t just heal her.Let’s,let’s not go down this path where she forgets who I am.And,

Shelli Virtue: 17:56

Mm-hmm.

Rayna Neises: 17:57

all of the things that come with just the difficulty of that illness.And,you know,it’s one of those things that it was a period of years of just really praying and everybody.I don’t know your experience.My experience,everybody was with me in that,let’s,let’s pray for healing.Let’s pray.You know?And it’s like,okay,but I learned too,I can’t have one specific thing because then if it doesn’t happen,if his answer is no,then I lose faith because he’s not faithful.Right?Whereas if I learn to pray with open hands and say,Lord,this is my heart,and then as Jesus did in the garden.But your will be done.You know?Then we,like you said,we have to move into what his will is,and we have to be open to then serving and learning what it is that he has for us.And definitely that journey is difficult and like you said,especially when those prayers are some of the most important things to your heart that I really,you know,desperately want this.So it can be hard to continue to hold onto that faith because of just that disappointment that can come through that.

Shelli Virtue: 19:02

And it’s especially hard,like we would often turn to the passage that talks about the little boy in the Bible that had most likely had seizures.It obviously,they probably didn’t have that word back then,but it talks about how he would throw himself into the fire and all the violent stuff.So it’s very likely he had seizures and to see that,you know,God is capable.Of healing this specific thing,

Rayna Neises: 19:26

Mm-hmm.

Shelli Virtue: 19:27

and yet why not?Why not?Why not me?Why not him?Really far more to think about all he is been through in his30years of life.Is really hard when,you know,as a parent you would do anything you could if you had the opportunity to take that away.And we have,we’ve tried,he’s been through multiple brain surgeries and just about every seizure medication there is and,and everything.And it just,we’re still here being the hands and feet and voice for our son.

Rayna Neises: 20:00

Yeah.Well,thank you for your vulnerability.I think that is exactly what we need.We need to hear other people are struggling because I think so many times,especially around prayer,it’s something we all just wanna have the bow on the top and be able to be able to move on to the next happy ending,right?And so sadly,the happy endings don’t happen all the time.

Shelli Virtue: 20:25

Not all the time.

Rayna Neises: 20:26

Yeah.And so,and you know,it is a process I think of for me then being able to go back and redeem the blessings that were through having my mom go through this journey.You know,there’s always blessings,but it’s hard when your heart is really set on an answer.

Shelli Virtue: 20:42

Mm-hmm.

Rayna Neises: 20:42

for sharing that with us,Shelli.Tell our listeners how they can connect with you and,receive your devotionals and just see more of your writing.

Shelli Virtue: 20:49

The main place to find me is on my website.That is Shelli with an i virtue.com,but I am also on Facebook and Instagram and Pinterest and all over the place.I’m sure you can find me.Somewhere.If you go to my website and click on Relationship Pit Stop,you’ll get a weekly devotional.That kind of stemmed from my very first writing on relationships as developing more intimate close relationships with people.So each week you kind of get a fun discussion question that you can talk about with your loved one to try to just grow your relationship deeper and stronger.And there’s some actual ideas of ways,to do that always correlate to whatever the topic is each week.So go there and sign up.That would be a great help.

Rayna Neises: 21:35

Great.Well,thank you again for sharing with us today

Shelli Virtue: 21:38

You’re welcome.Have a wonderful day.

Rayna Neises: 21:41

and our audience.You can also find Shelly’s story in the spring edition of Content Magazine.So be sure to check that out.Thank you for listening for Stories of Hope from Shelli And this episode has been brought to you by Content Magazine,a quarterly online magazine that gives you inspiration and hope during your caregiving season,helping you to find God right there in the midst of it all.You can find more at contentmagazine.online.Thanks again for joining us,and the Seasonal Caring Podcast has been created to share stories of hope for living content loving well and caring without regrets.If you have legal,financial,or medical questions,be sure to consult your local professionals and take heart in your season of caring.

*Transcript is an actual recount of the live conversation