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Manhood often feels like navigating through uncharted territory, but you don't have to walk alone. Join us as we guide a conversation about how to live intentionally so that we can join God in reclaiming the masculine restorative presence he designed us to live out. Laugh, cry, and wonder with us as we explore the ins and outs of manhood together.
Fathering A Child With A Disability with Robin Erkkila
00:00
Hey guys, welcome to another episode of the podcast by Restoration Project. My name is Jesse French and excited and grateful to be your host here today and really excited because I get to have a conversation with a dear friend, Robin Erkkila. Robin, thanks for joining us today. Well, thanks for having me, Jesse. This is quite the treat. Yeah, this is really fun. Robin, just give us a little sense of kind of who you are. Some of the...
00:27
Yeah, where you find yourself some demographics for listeners that are tuning in today. Yeah, perfect. So, I am husband of 27 years now. We've got three kids, live in lovely Colorado. Yes, sir. I have a phenomenal job that I get to work at. But first and foremost, I think of myself as a dad and a husband first. And so I've got, like I said, a great wife of 27 years. I like to call her the best wife ever. And we'll get into some of the reasons why I say that.
00:56
Three beautiful kids, they range in age from just about to turn 21 to 17. And so, you know, have lived here in Colorado for just about 20 years and have bounced around the country before that. So yeah, that's the quick background. Yeah. Thanks, man. Robin, would love to start our conversation today with hearing more of what it's like to be a father specifically of your son, Drew.
01:24
And I've had the joy of meeting Drew. And so just, yeah, maybe we can start there. Tell us about Drew. Yeah, we'll start there. Yeah, absolutely. So Drew is our middle child. Drew is 19 now. Drew is incredibly disabled for lack of a better term, right? So a very unique situation where we realized early on in Drew's life, about six months when he was six months old, that things weren't developing quite like we thought. And so when, when in
01:53
to the hospital, saw neurologists and a whole team of doctors. And I'll start with the long story short here real quick, which is that we still don't really know what Drew has in terms of his diagnosis. Best thing, I'll throw some really fun terms out there. The best thing we have right now is he has a Andy Walker variant, okay? Which is just a catch-all diagnosis because the best thing they've been able to determine is that he
02:23
mutations, genetic mutations, which have resulted in him not having a fully developed neurological system. So he has a partial brainstem. The brain is just not fully developed. And so at 19, he operates, he's nonverbal, gets around mostly in a wheelchair, operates at about that one year level, but he knows his family. He knows what he likes. He can't express some of that, but he's going to be with us for forever. And so it's been quite the rollercoaster
02:53
almost 20 years of his life now, having started out with, you know, you think you're going to have this, you know, he was our second born. We thought, oh, this is going to be fantastic. We're going to have two boys that are just going to be nuts and it's going to be a lot of fun. And it turns out that was absolutely not the case. So it's been an absolutely roller coaster ride from that perspective, roller coaster ride from many different perspectives, including just the physical aspect of things. We've gone through periods of time where he's been
03:21
very healthy and then periods of time where he's not so healthy. And we spend weeks and weeks in the hospital. Emotionally, spiritually, I mean, I've been through periods of my life where I've been incredibly angry at God thinking, why God would you make a kid like this? Why would this happen? So there's a lot going on there, but we still love him. I mean, he's a great kid. We think we'll have him forever. And yeah, so there's a lot to dig in here on quite frankly.
03:47
Yeah, for sure. And I want to get to that here in a second. But maybe even before then, just take us into maybe what a normal day looks like both for Drew and for you guys. And I say that knowing like normal is kind of this vague term. But what is a typical day look like in Drew's life? And then also for you guys, for your family. Yeah. So a typical day for Drew is we get him up as quick as we can for school. He's still.
04:13
does transitions program at school and so on and so forth. So we get him up. He is in a position today where he has to be fed through a G-tube, through a tube into his stomach. So that's one of the first things we do. We get him up, get him changed, get him ready to go and get him in front of some of his favorite videos and then hook up a G-tube and get him feeding, right? So we do that. Four days of the week, we get to send him off to his transitions program with the school district. And so get him on a bus and he goes off and he does his thing.
04:43
which is absolutely fantastic. And then eventually he'll make his way home and we will typically get him in, get him feeding again. He has to feed four times a day, just the nature of the situation. So he'll feed once in the morning, once while at school or at home, whatever program he's going through, we have that going. And then we'll feed him as soon as he gets home and then we'll feed him right as he goes down for bed. So the feedings, there's a lot that centers around that, just maintaining health and so forth.
05:09
With each feeding comes a lot of drug administration. So a lot of medical medicine administration. So we're doing that as well. And then quite frankly, the rest of the time we're trying to figure out how to just be with Drew, do some entertaining, try and do things with him. And it varies constantly as to exactly what we're doing. It varies a lot of, sometimes there's some music. Sometimes we can go to the pool and do some swimming. Sometimes it's just playing with a, he got a new computer recently,
05:39
talker, kind of an eye gaze talking computer. So we'll play with that. Just, yeah, things like that. But it takes 24-7 care, quite frankly. Of which your wife is a primary piece. You guys, apart from when he's at school that you talked about, like you guys are the primary caregivers. We are the primary caregivers right now. Yeah, yeah, exactly. We've navigated through several programs where we actually get paid to help take care of him. So yeah, there's some great programs out there for special needs.
06:09
And that's the thing, you know, special needs community is one thing I didn't even know existed until we had Drew. And now that I, you know, now that we've had Drew, there's a whole world of special needs parents and families and so forth that you get exposed to and resources for what do I do with my kid in the evening when there's nothing else to do. Yeah. Robin, I'm nodding as you're talking about this. There's a familiarity that as you're describing this normal day.
06:35
You and I have talked about, I had a younger sister who had kind of similar disabilities to Drew. And so then you talk about feeding four or five times a day through her G tube and keeping her comfortable. All those things are incredibly familiar to me. And so there's just a sweetness to hearing the way that you talk about your son. But within that too, I would love to just ask, like, you know, you just rattled off this typical day for Drew that you are incredibly familiar with. I'm sure you and...
07:00
in your family are kind of a well-oiled machine. Like you know your son really well and that's normal. And I just wonder like, you use the phrase, it's been a roller coaster, as I'm sure it makes so much sense. How has it felt being a father to a son who has that level of needs? Because you just described that in a space that requires so much. And I'm sure there's a range, but what has that felt like to be a dad of a son with those needs? There's a lot of feelings that go along with that. And like I said, it's a roller coaster,
07:30
periods of time where like recently I took Drew, we went over to a buddy's house and not that he really helped, but it was something we could do. He helped me rotate the tires on the van, right? And so there's times where that and he'll very surprise me with something as we do that, you know, some reaction or some laugh or something. And so there's really great times when we have that going on.
07:56
but there's also periods of incredible sadness and anger. And from just perspectives of, like I mentioned a little bit before, why would this happen? I would much rather be out throwing a ball with him or going camping with Drew or following the manmaker process with Drew or something like that. I would love to do that. We just simply can't. So there is some aspects of that that become very angry and sad and so forth.
08:25
And then we've got the medical situations where a little over a year ago in September, he spent nearly six weeks in the hospital with sepsis and all kinds of things and we almost lost him. And you go through that process and it's just heartbreaking to go through the process where you spend just all your time in the hospital. And because of the situation we were in at the time, Michelle spent, my wife spent the whole time in the hospital, every night with him in the hospital, she didn't leave his side. And that's one of the things.
08:54
We have just, you know, as we've navigated this, we've come up with different rules that a lot of families don't have. Like one rule is, one of us will always be with Drew in the hospital. One of us will always, you know, as long as we want to protect him as much as we can. But at the same time, we also need him to grow as well. So it's an interesting balance to strike. Yeah.
09:17
How over the years, Robin, have you learned to navigate that range of emotion? As you're talking about it, I'm sure it is that full spectrum that you just described. How have you learned to step into that? It's not easy. I'll just begin with that. I'll say that there's no one thing that helps me get through all this. It's a combination of factors. Like I said, I think I've got the best wife ever.
09:47
for taking care of Drew and taking care of the family. And like when I travel for business, she's on her own. And so just the fact that I have her and we're able to be there for each other in this situation, I don't understand how there are dads out there that abandon their kids with special needs and leave them with, you know, you look at the special needs community, there's a lot of single moms out there with these kids with special needs. And I don't know how that...
10:16
happens because I don't know how you would function in that scenario. Whether you're a single mom or a single dad with a kid with special needs, I don't know how you'd function in that mentally, spiritually, physically. I don't know. So my wife and I lean on each other significantly. I also have some really great brothers that I get to lean on. I mean, you know, people like you, Jesse and other RP brothers that I can lean on significantly.
10:44
2 a.m. calls or whatever it takes, you know, whatever it takes to go, look, I've got these problems. I need some help praying for Drew. I need some help praying for me. Things like that. I've got a significant surrounding of good men that I'm linking arms with and they helped me through this. And then there is the special needs community as well that helps. We've made some great friends in the special needs community that we wouldn't have made otherwise, right? If we didn't go do some of these events with Drew over the years, we would not get to know some of these people.
11:13
And they're great resources as well. And so some of us dads will get together. And just the other night, I got together with two other dads who have kids with special needs and we get to talk about things that other dads don't talk about. I don't, I don't want to get to talk about with some of my other brothers. You know, we're talking about things and, and if you overhear some of those conversations, one time we were having dinner with a group and the waitress overheard our conversation and she was just amazed and actually almost scared to death about some of the things we were talking about.
11:43
Yeah, but there's, there's a level of knowing I'm sure in that community, right? That is only, only known by walking through that. Right. And so, yeah. And each kid has their own unique aspects, right? I mean, like I can relate to your parents, Jesse, with your sister, but they had a completely different path to walk down than we did. Yeah. Robin, I'm, I'm curious. One of the things that
12:10
that we wonder about with the people who come on is how we have been shaped and how we have been forged by what our life has given us. We try to be real clear around some of that language of that implies an ongoing process. That implies a beautiful but also really challenging process too. Our hope is that we would honestly and soberly use that metaphor, right? That it's not just this really neat and tidy process and it's one that's ongoing.
12:40
So with all that said, and I don't ask you to have something just perfectly rattled off, but how has this process or what has this forged within you? Or maybe a better way, what is this forging within you? Yeah, I think, oh gosh, it's a big part of our life, my life, you know, our family's life. It's a big part of our life. And it has, for lack of a better term, forced me to confront several things about my life.
13:09
and hopefully grow in aspects of being kind and so forth. I mean, before we had Drew, I looked at people in a certain way and when you go out in the public and you'd see other special needs kids or whatever, I looked at them through a different lens than I do today. Yeah. You know, I've been forged over the last 19 years of Drew's life to look at things differently. And one of the things is embrace the moment, right? Try and be present and really embrace the moment.
13:39
I've had a problem with that all my life. And I think that's one thing. And it's an ongoing battle. And I think a lot of us men have that same problem. We have an ongoing battle with that. And I find myself with Drew, you know, trying to say yes and trying to embrace the moment and what can we do? And case in point, we're building a house right now that is going to be very tailored towards accommodating Drew. And there's a lot of aspects of this house that are not normal.
14:08
Um, or not typical, I should say. And the situation we find ourselves in and building this house is not a typical situation. I don't know. There's not a lot of people that go out and build a custom house like this or do what we're doing. And I think it's one of those things where for years and years and years, we're like, we just got to do this. We got to do this. We got to do this. And there was a lot of obstacles, but it was, you know, we've got to seize the day and do it anyway. And it's been.
14:35
It'll be rewarding, I know. And it's gonna be an ongoing challenge no matter what. Yeah. Yeah, I love what you said about the invitation to be present and in the moment. When you're with Drew, does he invite you to be present in a way that other people don't? Yes. The short answer is yes, of course. Yeah. Because a lot of times, being present with Drew is exactly that. It's just him and I sitting there, not doing anything else.
15:05
Yeah. Just being present. And I think a lot of times when we talk about being present, it's, all right, I'm going to be present in this conversation. I'm going to be present in this activity. I'm going to be present doing all these different things, you know, but I'm going to be focused. I'm going to be not only present, but focused on an individual. With Drew sometimes, being present is just simply that, being present. And, you know, because I can't carry on a conversation with him. Yeah. Yeah.
15:35
in a game of catch or a session of catch or throw a football around or anything like that. Sometimes it's just, we were present in the living room or we're driving around and we're just present, hey, Drew, check this out. Let's go drive around a little bit. In my opinion, it's the true definition of being present. It's just with nothing else, just the two of us, that's it.
16:01
Robin, I don't want to put words in your mouth, but is that kind of quality of presence a gift for you to receive? Even the contrast that you give of present not to like, Hey, I'm focused on a task or I am with just one other person one-on-one, but it's, it's even more than that of no, I'm with my son and he's not requiring anything of me, but I can simply be with him in a way that is, that is generous to you. Yes, yes. That's an aspect of we're. I don't think we fool.
16:30
My wife and I fully understand, and we may not see every way Drew has an impact in this world today, but that is absolutely one way he does have an impact. With me, with some of his teachers, some of his cohorts in school and so forth, yeah, there is something about people saying, it's not just me, but it's a lot of people saying, you know, it's just sometimes it's fun to just be around Drew. Yeah. And yes, it's a gift. It's an absolute gift. And sometimes it makes me slow down.
17:00
Yeah. Yep. Thanks for saying that the time that I've little bit of time that I've spent with Drew, that seems incredibly true to who he is and Robin you you've been around restoration project long enough that you know, one of the phrases that we use is we're fairly honest around some of the pitfalls of giving other people advice and we talk about how often advice is kind of this short circuiting of, of actual conversation and connection.
17:27
But I want to break our own rule here for a second and just be real practical. I just would love to ask your words of, what words do you give other folks as they think about families that they know with children with special needs, as they think of other of their own friends that may have special needs or just that community? Because I think it, as you have said this conversation, there is such challenge for the families going through that. And yet there is also such goodness in the distinct ways that I'd say.
17:54
the people with special needs bear God's image and teach us in just wonderfully needed ways and unique ways. What words might you say to someone who's listening as you think about their potential involvement with the special needs community? So, I think I'm going to borrow from RP as well here and I'm not going to break the rule. I'm going to follow the rule and say, ACK, awareness, curiosity, and kindness. Just being aware.
18:22
of adopting a posture of awareness with these families and hopefully leading to curiosity and ultimately leading to kindness. I mean, adopting a posture of kindness around these kids and these families is the ultimate thing. Case in point, one story I like to tell about the difference between niceness and kindness is we take Drew out in the public and you get a lot of stares. You get a lot of...
18:50
not very niceness and not very kindness, but we get a lot of niceness, right? We get a lot of people, you know, mom saying, hey, Johnny, don't stare, you know, stuff like that. Niceness. Occasionally, I come across some really good kindness. Like, you know, years ago, I had taken him to the grocery store at that time, it was before we have the van we have today. And so you'd have to manhandle him in and out of the car and then put his wheelchair in the back. And so I was in the process of doing that.
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And this nice man, kind man approached and said, hey, can I help you? Can I help you get Drew in the car? And can I help you load up the groceries and so forth and go through that process? And it was just, it was very, very kind when something like that, you know, there was no, oh, I'm just gonna shun it. I'm not gonna be nice and just smile and say, oh, you must be a great dad for doing what you're doing. It was a very kind gesture. And so,
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He was aware, he was curious, he said, can I help you? And he said, yeah, I'm gonna be kind and I'm gonna help you do this. And so I think that's my best advice for anybody as you see this is try and remember to be aware, be curious and be kind in approaching these families and these kids. We've had nothing but success with that over the years, quite frankly, because after in the last 19 years, that's the approach we typically take. We'll go on vacation by ourselves, maybe Michelle and I have done that several times.
20:18
without the kids, right? For maybe an anniversary vacation or something like that. And we'll come across a family or kids in the airport or somewhere with special needs. And we try and do that. And it's just a different, you know, the families crave it. They crave normal attention. That's right. That's right. There's a dignity to that, that is sought after and so honoring to receive. Yep. Robin, thank you. Thank you for your willingness to jump on the podcast and even more so just your willingness to share some more about your family and your journey.
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deeply grateful for your wisdom and your willingness to share. Anytime, Jesse. I appreciate it. Thanks for the opportunity. You bet, man. Have a good one. All right.