Strep Triggered Something Far Worse For Their Son

Welcome back to Hope for the Caregiver.

This is Peter Rosenberger. This is the program for you as a family caregiver, and he will give you strength for everything you go through. That is my wife, Gracie, from her CD Resilient. Go out to Hopeforthecaregiver.com to see more of what she offers and her music and everything else that has kept her resilient through all of these years. I get to meet interesting people along the way here, and I got a recent message from a listener, and somebody reached out to me and told me their story, and I really wanted to have them on and just listen to their heart as they share with you things they've learned along the way as caregivers, as a husband and wife caregiver with a special needs son. Shelly Snitko and her husband Chris join us.

We're glad to have you here, Shelly, and thank you for joining the show. I say special needs. That's not accurate. He's got some significant disability issues, but it's a different diagnosis. Is that correct?

That is correct, yes, a rare neuromuscular movement disorder. And that started about when? When he was how old? He was eight and a half. Both of the kids had gotten a strep infection, and his affected his central nervous system, and in the course of weeks, he lost the ability to walk, talk, use his hands, and had a lot of muscle spasms that were interfering with things.

So yeah, it was pretty sudden. And your other son had strep as well, but no residual impact from that. He just got strep and got better, but this one did not. Yeah, and this one did not. Did you ever get a good reason why not?

No, actually we never really did. They call it a secondary form of the disease, meaning it's not a genetic defect, but it was a secondary thing, meaning the strep actually for whatever reason was the catalyst that started this whole process going. Yeah, because he did have some trauma at birth where the cord was wrapped around his neck, and he had a little bit of oxygen deprivation, so I believe it may have been onset from there, and then when he turned eight and a half and got the strep throat, that just triggered that dystonia. That must have been a very, very difficult launch into this journey of caregiving that you guys had, because it's one thing to have something that you can wrap your mind around and say, okay, I understand. In my case, Gracie had a car wreck.

Okay, that makes sense. This is one of those things where it's like a conundrum. You're trying to figure out what happened, and then you get to a point, I guess, where you just stop worrying about what happened and just deal with what is. Is that a fair assessment?

It's very much a fair assessment. I know midway through, we spent six weeks at Children's Hospital back then. We were living in Colorado at the time, and I can specifically remember the night where I just kind of laid in bed kind of reaching out to God and crying out, because we had been asked a lot of the why questions, and at that point, we still didn't have an actual diagnosis. We knew what it wasn't. It wasn't a brain tumor, and he didn't have meningitis because all the spinal taps he had, but at that point, we still didn't know what, and we certainly didn't have a why, but I do recall specifically going, okay, God, we don't have to know the what or the why. We just have to know that you're in this with us and that no matter what, we're going to be okay. And that night, I had a lot of peace.

So yeah, I don't know. Chris, do you want to add anything to that? Well, I was going to say that prior to his dystonia kicking in, God kind of just resurrected our marriage. We were separated for eight months about a year prior to AJ's onset of his dystonia, and he reconciled our marriage and got us on a strong foundation prior to this occurring with our son. You know, that's extraordinary, Chris, because so many marriages crumble when there's a disability.

I think the figures are almost 90% of marriages when there's a disability in the family. And this particular journey brought you two back together, and that's an astonishing event that happened. But no, I was struggling with, I don't know why, I don't know why, I don't know why, and I became comfortable saying, okay, I don't know why, and it's okay. Now I think I'm becoming more comfortable saying, I can't know why. I just don't have it in me to be able to understand it, even if he told me. And I'm not dissuaded by that.

I mean, that doesn't cause me to kind of freak out or anything. You just realize, okay, God has a purpose and a plan in this, and I'm willing to trust him. You guys are obviously in the same position. You're willing to trust him with this. And what does that look like for both of you? I mean, Chris, let me start with you. What does that look like when you trust God in this?

What does that look like for you? It just frees you up, because if we knew since he's had this now for 26 years, if God at that time, when the onset came on, said, your son is going to be with this dystonia for the rest of his life, at that time, if we would have been told that, we would have been kind of devastated. But God is so grateful, because he only gives us enough to handle at the time. We had no idea anything about dystonia. We didn't know how long it was going to last. We didn't know if it was temporary.

We didn't know if it was permanent. But just putting our faith in him and trusting in him, it just gave us peace, because he only let us know enough that we could handle at that time. And that was special.

That was great. I think that's a sign of his mercy, that he doesn't just share these things with us, but he does assure us of his presence. One of the things a friend of mine told me a long time ago, that word is a lamp unto my feet. He said, it's not a searchlight. And I spent so much time trying to peer into the future, and I realized that this is where I am, right here, today.

This is it. And Scripture says that over and over, but I didn't want to take that. But there's something about disability that forces you into that place. Is that a fair assessment, Shelley, for you? Yeah, most definitely. I mean, yeah, you're forced into it. It's right.

It's an uninvited guest to the party called your life. And so certainly I am thankful, actually, that I had no idea what we were going to face. And quite honestly, nobody does.

Whether you deal with disability or you don't, none of us know what tomorrow holds. But what we do know is that God's grace is sufficient and sustaining to meet us exactly where we're at, and that has been the discovery we've had over and over and over again throughout this entire journey, is that is really where our peace comes from. And though it rocks our world, it doesn't rock his, and it didn't come as a surprise to him, even though, you know, through this we've been gut-punched quite a bit.

Nonetheless, because of his faithfulness, because of those early days, because of every step of the way leaning into him, it's why I think our marriage has been able to thrive, why our family is thriving and growing and maturing, and really why AJ is doing as well as he is. Well, you've been doing this now for over a quarter of a century, and there's something about the longevity and the relentlessness of this. It's not something that just kind of reached a plateau and, okay, we got it, we're good. No, it's a relentless journey of challenges.

But when you have that kind of longevity, it changes some things in you. And as you guys now are seeking to push out into other folks and help people along the way, you know, sometimes I think it was probably pretty lonely for you guys. I know in my early years, and for many of it, I was out there just kind of foraging, and there wasn't anybody really knew what to say. You guys are now being those people that know what to say and what to offer to other parents, particularly going through these things. The couples that are, their marriages are frayed and disintegrating even, and you can come alongside with gentleness and quietness and confidence. And tell me a little bit about what you're doing with that.

Shelly? Well, for me, one thing is, you know, we don't always do this, though we trust and rest in God's grace. Let's not kid ourselves. I have not been graceful in this journey as far as me managing all aspects of that, and what do I mean by that? You know, we live in a constant state of stress. You know, there's a lot of unknowns, a lot of things outside of our control.

We've had a lot of disappointment. A lot of things didn't work out the way we wanted them to, and as a result, we're humans. And so for me personally, that took its toll. I actually numbed and medicated my emotions, those difficult things that I really didn't want to deal with, because I was so busy caring for AJ and our family.

And I numbed it with and medicated it with food. And so over the course of time, what I once was able to control was outside of my control. So here I am, a strong woman of faith, resting in the Lord, virtually strong and physically extremely weak, because I was battling all the issues that go with carrying a lot of weight on my body. But most of that was emotional weight that just manifested itself with unhealthy eating habits. So for me, it was a journey, really a health journey of wholeness.

And I believe that all caregivers, at least my experience is with talking with people, is a lot of bad habits can develop over the course of time, simply from coping. You talked about enduring and persevering, and the way I did a lot of that was self-indulgent in food. And so for me, getting physically healthy was really the biggest part of this journey, and out of that has kind of birthed a ministry to other people.

Because I don't think people realize that physically, when we're not feeling our body properly, we don't have the bandwidth to show up to our day the way we want to. And that led itself to a lot of emotional frustration and bitterness, because like I said, I was numbing those difficult emotions and pushing them down. But what I wasn't realizing is as I was pushing down those difficult emotions and just pressing on right, doing what I needed to do to care for AJ, I was just surviving the day. And I was pushing down all the good stuff too.

You know, I get that. I mean, they call it comfort food for a reason. And the stress that we deal with as caregivers is screaming for relief. And so many caregivers gain weight. I mean, this is consistent with so many family caregivers. I mean, I got so big myself that I broke my family tree. Oh, I'm just kidding. My picture fell off the wall. We're going to talk some more, but we're talking with Chris and Shelly Snitko, and they are veteran caregivers. Been doing this for a long time, and they've got some wonderful things to say.

We'll be right back. According to the latest figures from the CDC, approximately 1 million Americans are injured annually as a result of falling on ice and snow. I'm Peter Rosenberg, and as a caregiver for my wife for more than 35 years, I understand the importance of helping someone with a mobility impairment get in and out of the home safely, particularly in inclement weather. And that's why this winter I'm using Heat Track. They're snow and ice melting mats that you just plug in and they provide you a safe walkway to your garage, to your mailbox, to your deck, to your business. Whatever the need, Heat Track has a mat that will fit that need and make sure that you can get in safely during snow and ice.

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Go to HeatTrack.com. Welcome back to Hope for the Caregiver. This is Peter Rosenberg and this is the program for you as a family caregiver. That is Gracie and Russ Taft from Gracie's CD. I love that song. The joy of the Lord is our strength. And here is a couple that we're talking with today that really gets this. And they've had to walk through these painful things. And I don't know that you can really embrace the joy of the Lord unless you've abandoned the things that you thought would bring you joy and grasp onto Him. And that usually is a pretty painful process. And a lot of times, God uses suffering and disability and all these other things to carve out the false joys that we think we can have. And before we went to the break, Shelly was talking about how she was medicating with food. So many of us have been in that snare and there's no shortage of medications out there, whether it's food, whether it's sex, whether it's alcohol, drugs, whatever. We're going to find something to fill that hole, to ease that pain, to numb us so that we don't have to ache anymore. It is counterintuitive to do what we're talking about today. But there comes to that, we come to that place where we finally just fall on our knees and recognize that all of our efforts have been in vain.

And we start seeing the promises and the provision of God in ways that we've never saw before. And this is where this couple is today. So Shelly, I appreciate you being vulnerable and sharing about that.

A lot of people feel a lot of shame about things, whether it's, whatever, it doesn't matter what the comfort is. They don't want to, they want to just kind of deal with it in isolation and you come along and say, you know what, here's what I did. Here's what I'm doing. Here's where I'm going.

And you can go there too. And that's, that's incredibly inspiring to other people to let them know that they don't have to figure this out by themselves. There are other people that are walking down this journey who'd be glad to give them a hand to do that. And that's what you're doing. If people want to find out more about what you're trying to do and engage with you on this, what is the best way for that?

Well, one of the best ways is we have a Facebook group that we started that birth from my journey. It's called Caring for Me Too. Because that's one of the biggest things that I think happens is a lot of times we buy into the thought that to care for us is a selfish thing and what I learned is it's a necessary thing.

It wasn't a luxury for me. And so Caring for Me Too is kind of birthed from that. So that's one way that people can reach me. I'm also a health coach. Basically, again, just paying it forward from the journey that I was on. And so I have a website that you can reach me on. It's actually my Facebook page, Shelly Snitko. And you can kind of see what we're up to there as well.

Spill that out for folks. Yeah. Our last name is tricky, but it is very phonetic. It's S-N as in Nancy, I-T-K-O. And then my first name is Shelly, S-H-E-L-L-Y.

Well, from one person with a tricky last name to another. But I have that too. Chris, let me switch over to you a little bit. You're an engineer by trade. Is that correct? Yeah. Your engineering mind, which I always admire, I do not have one, but your engineering mind must have approached this thing from a much different perspective.

Is that a fair statement? Well, actually, it's kind of interesting because Shelly's degree, and she worked for it for quite a while before until after AJ got sick, was she's an occupational therapist and I'm an engineer. So the combination of those two trades and skills really helped us troubleshoot a lot of things for our son to try to figure out what's the best thing to rig things up for adaptives and physical needs and all those kind of things. That was a God thing right there that he put two people together with two different skills that are really needed to help our son the most.

That was awesome. Well, indeed. Because with Gracie and me, I'm a pianist and she's a singer, so none of those skills really apply to us. I mean, yeah, we could sing and play through the tears, but you guys had a very strong, complementary set of skills to deal with this. And that again goes back to God's provision in this.

I mean, none of that caught God by surprise. And I was just going to say, too, one thing that was interesting was the transformation that Shelly went through with getting her health back and stuff. For a long time, all she was just felt like it was just AJ's caregiver to AJ's caregiver. And then once she found the program to try to lose the weight and she was successful at that, and now she's trying to help other people. It's like, I've got my wife that I knew earlier on.

I've got my wife back. And it's such a beautiful thing because I see her shining again. I see her enthusiasm. She loves helping other people.

And so it was just great to see. So for years, she was kind of almost depressed in a way because all she knew was how to try to take her on. But now she can open it up because she's so much more healthy emotionally and physically. It's really interesting, though, that you were in a career as an occupational therapist, Shelly, that you wanted, you professionally wanted to help people. Then you were taking down this, what looked like a big diversion from your goals. And you ended up now in a situation where you're even more equipped, better focused to help people in an even more substantial way than you ever dreamed.

And I just think that's astonishing to watch how that works out. But somebody asked me the other day, would you do it all again? And I said, well, I have enough problems with reality.

I'm not going to take on the hypothetical. And that said, I like the way I write now. I like the way I speak. I like the way I play the piano.

I just hate how I got here. Does that resonate with you two at all? Oh, 100%. Like nobody would choose this and I certainly wouldn't wish it. But I tell everybody, even in our marriage struggle, if that's what it took to get us from point A to point B, to have that foundation that we currently have, I would do it all over again.

And it's the same thing with AJ. God doesn't... None of our suffering, none of it is purposeless, and none of it is for naught. And if this is... You know, obviously this is the path that's been allowed. I believe in a sovereign God who allowed it.

So would I walk through it all again to get to this place? Oh yeah, I like this person. This person isn't perfect.

This person has embraced her imperfection. But this person also... This is what God's using. This is what God's using to bring glory and honor to Him. And for that I have no regrets. I get that and that is beautifully said. And I heard a great quote from a friend of mine a long time ago and he said, he was a carpenter and he doesn't even waste the sawdust.

That just stuck with me. And another thing he used to say was, God is the greatest junk collector in the universe. And he collects things that we think are junk and discarded or whatever. And he makes something beautiful.

I like the old Bill Gaither tune, something beautiful, something good. All my confusion he understood. All I had to offer him was brokenness and strife that he made something beautiful in my life. And this is what is so apparent in the two of you all. What do you say... I'm going to put you on the spot a little bit. It's all right. You're tough.

You can handle it. What are some of the changes you've seen in Chris? Well, one, the leader that he has become. I mean, he's a godly man.

He has really stepped up to the plate. You know, I just see him, you know, I talk about moving from surviving to thriving, but what I see is the same thing in him, that he is thriving in so many ways. And he is loving us through this. And, you know, he didn't labor in all of my struggles and all of my emotions. He's always just kind of risen to that, never judged me for it, always supported me.

Yeah, I just have seen him become much more of a godly man, an empathetic godly man. That's a wonderful tribute for you guys, because, you know, I know a taste of what it's like to go through these painful places. And as a couple, you know, marriage is hard enough. You throw a relentless disability in there and it becomes excruciating. But excruciating is the Latin word that was invented to describe the pain of the cross. They had to invent a word.

The pain was so bad that they had to invent a word of it. And yet, this is what Christ asked us to do, is take up our cross and follow Him. And it is painful for these things to happen. And yet, I have found great comfort and solace and strength and endurance and fortitude.

And those are things that don't sell real well. Everybody wants to hear escape and feel better. But we veteran caregivers know that God's strength and endurance for us, His mercies are new every morning.

We know how to make every kind of mistake you can. And when you're the wily coyote of caregivers, like I am, you've had enough anvils dropped on your head. So, Chris, what's next for you?

And then we only got about a minute to the break here, but what's next for you? Well, I think it's interesting because both Shelly and I, over the last year or two, have been really learning each other's strengths. And we're learning how to tap into each one of those to help.

If you stop learning, then you just are dying. So we're learning each other's strengths, and I've come alongside her and started coaching others as well. And we're learning a brand new aspect of how do we do that together. And we're bouncing things off each other, and we're really learning even more and more about each other as we go into coaching others. That's wonderful.

That is wonderful. One more time, very quickly, on how people can reach you. Shelly? Yes, Shelly, Nick, go look me up on Facebook or my Caring for Me Too page.

Well, this has been a wonderful conversation with you two, and I thank you very much. This is Peter Rosenberger. This is Hope for the Caregiver.

Hopeforthecaregiver.com. We'll see you next time. Some of you know the remarkable story of Peter's wife, Gracie. And recently, Peter talked to Gracie about all the wonderful things that have emerged from her difficult journey. Take a listen. Gracie, when you envisioned doing a prosthetic limb outreach, did you ever think that inmates would help you do that?

Not in a million years. When you go to the facility run by CoreCivic and you see the faces of these inmates that are working on prosthetic limbs that you have helped collect from all over the country, that you put out the plea for, and they're disassembling, you see all these legs, like what you have, your own prosthetic legs. And arms, too.

And arms. When you see all this, what does that do to you? Makes me cry, because I see the smiles on their faces, and I know what it is to be locked someplace where you can't get out without somebody else allowing you to get out.

Of course, being in the hospital so much and so long. These men are so glad that they get to be doing, as one band said, something good finally with my hands. Did you know before you became an amputee that parts of prosthetic limbs could be recycled? No, I had no idea. I thought of peg leg, I thought of wooden legs. I never thought of titanium and carbon legs and flex feet and sea legs and all that.

I never thought about that. As you watch these inmates participate in something like this, knowing that they're helping other people now walk, they're providing the means for these supplies to get over there, what does that do to you, just on a heart level? I wish I could explain to the world what I see in there. And I wish that I could be able to go and say, this guy right here, he needs to go to Africa with us. I never not feel that way.

Every time, you know, you always make me have to leave. I don't want to leave them. I feel like I'm at home with them. And I feel like that we have a common bond that I would have never expected that only God could put together. Now that you've had an experience with it, what do you think of the faith based programs that CoreCivic offers? I think they're just absolutely awesome. And I think every prison out there should have faith based programs like this because the return rate of the men that are involved in this particular faith based program and other ones like it, but I know about this one, is just an amazingly low rate compared to those who don't have them. And I think that that says so much.

That doesn't have anything to do with me. It just has something to do with God using somebody broken to help other broken people. If people want to donate a used prosthetic limbs, whether from a loved one who passed away or, you know, somebody who outgrew them, you've donated some of your own for them to do. How do they do that?

Where do they find them? Please go to standingwithhope.com slash recycle, standingwithhope.com slash recycle. Thanks, Gracie. My hand, lean on me, we will stand.