209 – Shayne Gaffney of Windham, NH Father of Two, Including A Daughter with CytoMegaloVirus

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast. Working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at horizontherapeutics.com.

Shayne Gaffney: I think it was Eisenhower. I don’t remember though. But comparison is the thief of joy. Who said that? It was president. You know who it was? I’ll think of it later, but comparison’s a thief of joy. I always go back to that statement and it’s very true. Once I stopped comparing Grace to normal abled children, that’s when I was able to really accept it and move on and be where I’m at right now.

Before then, I was always mad, angry, upset, sad, all those emotions you express. Because I always wanted her to be something that she was never going to be, and it’s not really fair to her for me to think that she would ever be anything else. So once I accepted her for who she is, that’s when I became a special needs father.

David Hirsch: Hi, and thanks for listening to The Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. To find out more, go to 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help, or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad.

I’m thrilled to be talking today with Shayne Gaffney of Windham, New Hampshire, the father of two, a cycling and running coach, as well as a licensed physical therapy assistant. Shayne, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Shayne Gaffney: Thank you. Pleasure to be here.

David Hirsch: You and your wife, Megan, have been married for eight years, and are the proud parents of two children, Finn, five, and Grace, three, who was diagnosed with Cytomegalovirus or CMV, a common virus. But when a baby is born with congenital CMV infection, it can result in severe long-term health problems.

Let’s start with some background. Where did you grow up? Tell me something about your family. Sure.

Shayne Gaffney: So I grew up in Wilmington, Massachusetts. It’s a town about 20 miles north, no, that’s probably too far, maybe 15 miles north of Boston. Relatively small town when I lived there. We had one flashing red light when I moved there, back in the early nineties, and now it’s a pretty hustling, bustling suburb of Boston. So it’s interesting how things have changed over a pretty short period of time in this area.

David Hirsch: Excellent. So my recollection was your parents were super young when you were born.

Shayne Gaffney: Yeah, super young. So my mom and dad were 17 when they had me, and I slept on bunk beds with my mom until I was above five years old. I was on the top bunk and she was on the bottom bunk in my grandmother’s house. So it’s a pretty interesting dynamic there for sure. But yeah, they were very young when they had me.

David Hirsch: Okay. And I also remember that you mentioned you had some half-brothers and half-sisters.

Shayne Gaffney: I do. So my mother married my stepfather, geez, probably 20 years ago now, I want to say, 27 years ago, somewhere in that range. And yes, they had two more boys who are my half-brothers. And my dad got remarried about the same time. And they had two girls, so my half-sisters. So I have two and two.

David Hirsch: Excellent. And you’re the oldest, obviously.

Shayne Gaffney: I am the oldest, by about 10 years.

David Hirsch: Okay. So, I’m sort of curious to know, when you were growing up, did you have a more of a relationship with your dad or your stepdad?

Shayne Gaffney: It’s interesting. I didn’t really have a relationship with either. Strangely enough, I spent weeks with my grandmother. My grandmother was the one that really raised me, I would say. So I spent weeks with my grandmother and my mom, and then I spent weekends with my dad. So I saw my dad, you know, twice a week, once a week-ish.

And then my stepfather, I saw him more frequently, but that relationship was never strong with either. It’s gotten better recently, but it was a real struggle when I was growing up under that roof for sure.

David Hirsch: Yeah, it seems like it was a less traditional upbringing, if I could refer to it as such.

Shayne Gaffney: Yeah. I felt like I was in the middle of two families and just kind of cycling between the two. That’s how I’ve always felt. I don’t feel like that anymore because I’m older with my own family. But yeah, when I was growing up, I always felt like I wasn’t really a part of either. I was just kind of in between the two, bouncing back and forth from house to house.

David Hirsch: Yeah. Well, I understand what you’re saying, and I can relate just a little bit, in that my parents divorced when I was six. My younger brother was five. And I spent a lot more time with my mom and my maternal grandparents as a result. And, you know, it’s not good or bad, it’s just the reality of the situation.

And sometimes somebody steps in. I was very fortunate to have my maternal grandfather step in and become that father figure in my life. And, you know, everybody’s situation’s a little bit different. The whole reason we started the 21st Century Dad’s Foundation was to address this issue of father absence, and more specifically, for dads raising kids with special needs. So, thanks for sharing.

So I’m sort of curious to know what. What did your dad do for a living?

Shayne Gaffney: My dad is an interesting cat. He worked developing molds for teeth, so it’s very hard to explain. But he would get a picture of somebody’s mouth from the dentist and then he would turn that picture, back in the day, into plaster, and then he would pour resin over the plaster to make a negative. And then they would form whatever, a bridge, or a gold tooth in some cases over that bridge.

And now he services wheelchairs and special needs equipment for people in wheelchairs or those kinds of needs, which is kind of interesting too. So he’s kind of been a little bit of a jack of all trades.

David Hirsch: Very interesting. Thank you. And I know you’ve made reference to your dad a little bit, but how would you characterize your relationship with him, maybe reflecting on what it was and then how it’s evolved?

Shayne Gaffney: It was weekends mostly. And recently, since I’ve had kids, I would say the bond between us has gotten a lot stronger, because he’s a proud grandfather of my two kids. So yeah, it’s definitely gotten stronger and our relationship has improved as a result of that.

But historically, it was kind of like we would see each other occasionally, every few months or so. Especially when I was working, when I had a car, it was a pretty rare instance when we saw each other. And then obviously holidays and maybe occasional phone call or text here and there. But nothing too strong, I would say.

David Hirsch: Yeah. Well, thanks for being so open and authentic about it. And I know that grandchildren do have an effect on people. As a young grandfather myself, all of a sudden the people that were most important on the planet, your children, become sort of like the second most important people on the planet. And then all of a sudden these grandchildren take center stage, if you will. So it is a beautiful thing, and I’m hoping that, as a result, your relationship with your dad will continue to strengthen, and that he’ll play a meaningful role in your children’s lives as well.

Shayne Gaffney: Yeah, same here. I wish that too.

David Hirsch: Speaking of grandparents, I’m wondering what, if any role your grandfathers played, first on your dad’s side and then on your mom’s.

Shayne Gaffney: So my mom’s parents are also divorced too, so it’s another interesting dynamic there. So, I saw him occasionally. He had a pool, so I remember going to his pool a lot in the summers and spending time with him then. But otherwise, that’s pretty much it. I don’t have a lot of memories with him. And they went through in a strange period for, geez, probably five or ten years. So he kind of fell out of the picture for that case.

And then my dad’s dad, his parents are married and they have a great relationship. I would see him a lot more frequent than my mom’s dad, especially on Christmas or Thanksgiving or Easter, those holidays they would always host. So I have a lot of good memories with that house with them for sure.

David Hirsch: Thanks for sharing. So, switching to education, my recollection was you got a BA in health science and professional development and advanced patient care from Grand Canyon University. And I’m wondering, once you got your degree, where did you feel like your career was pointing?

Shayne Gaffney: Well, I got an associates degree in physical therapy from North Shore. That was my first degree. And then I started to work as a PT assistant, and I wanted to go in for my master’s and eventually my doctorate in physical therapy. So it’s a BS in health science, and the BS was the next step in there. If I back up a little bit, I was a pretty decent track athlete, and I got into UMass Lowell on a scholarship.

But I needed a signature from one of my parents to get the loan to pay for schooling, and they wouldn’t sign it for me. And that was really, I would say, when everything hit the fan and blew up over that relationship at that point, because I had worked really hard to get in shape, but also get into school, get money off, all that kind of stuff. And they just wouldn’t sign a loan for me for whatever reason.

So then I moved out, and then I lived in the dorm room of my girlfriend at the time, who is my wife now, for about a year. People thought I went to school there, but I didn’t. I was just crashing in her dorm room every night. And I worked at Market Basket at the time and I put myself through school at a community college.

So I went to PTA for North Shore because it was cheap and I could pay for it on my own accord. I worked nights and weekends to do that and school during the day. And then Grand Canyon University was my next step in the BS in health science. Because that was also weekends and nights, I could work full-time days as a PTA, make decent money, and then pay for school nights and weekends at Grand Canyon University.

Then I started to coach, which I’ll probably get to at some point too, and it kind of fell off my radar at that point. Also, schooling is, as you know, extremely expensive. And the juice has to be worth the squeeze in a way. And I felt like if I went to school for another three years, I would spend $80,000 and only make $20,000 more a year. So the juice wasn’t really worth the squeeze in my case, I think.

David Hirsch: Yeah. Well thanks for sharing that. So, you’re athletic, right? That’s what I heard you say. And I know that you’ve gone into the coaching business, coaching cyclists and runners. So, how has that transitioned?

Shayne Gaffney: Great. Honestly, I’ve always felt a strong urge to help people, whether that’s from a rehab perspective or goal setting, reaching their goals, improving them as a human. You know, I think it’s important for me to do. Because I started running track just to get out of my house and deal with my own problems with my family, right?

So I’ve always felt like endurance especially was a form of this active meditation, what I would call it. Because you have to be present in what you’re doing, and you can’t have any extrinsic noise. And I really appreciated it and I craved that. The first time I did a 5k, I remember like that was the most painful and hard thing I’ve ever done, but I’ve also never felt as good in my entire life after doing a 5K for the first time.

So that kind of grew and blossomed from there. So coaching was a perfect mixture of my background and knowledge in healthcare, in physiology, biology, blah, blah, blah, with the marriage of psychology, helping people work through their problems, improve as athletes, improve as people, and I fell in love with it head over heels. I’ve been fortunate to be a full-time coach. This is my fifth year now as a full-time coach. So I’ve been fortunate to do that for sure.

David Hirsch: So triathletes, runners, what type of people are you coaching?

Shayne Gaffney: Mostly cyclists, actually. I would say mostly masters age, which is like 40 plus, post kids, pre grandkids. They have some money to burn on a coach, and they have some time to burn on a coach. That tends to be my bread and butter. Some juniors, but not too many. And, yeah, I have the occasional triathlete, but I work with the bike leg for the triathletes and I work with swimming typically, aside from like form work or whatever. And then runners, yeah, very rarely. Mostly cyclists. That’s kind of my bread and butter.

David Hirsch: Okay. Well thanks for sharing. I consider myself a triathlete, but not like an athlete, it’s more like I’m athletic. I enjoy the workouts, and I like the variety of swimming, biking, and running. And I think it was about six years ago, after our fifth child, our baby, went off to college, I felt like God was talking to me. What I heard was, “You should do a cross country bicycle ride.” And I’m like, “Oh no, you’ve got the wrong guy. I don’t even own a bike.” And I can count on one hand with four fingers left over the number of times I rode a hundred miles in one day. You know, a century ride is like a bucket list for some people.

Shayne Gaffney: For sure.

David Hirsch: And, you know, I couldn’t shake the idea. So I started talking to people that I knew were cyclists and got some advice. Do this, don’t do that. And then one thing led to the next, I ended up buying a bike, put a training schedule together, put a crew together. I’ve put a schedule together for all 21 days, which it turned out to be, riding from Santa Monica to Chicago and averaging 112 miles a day for 21 days in a row. And I love to tell the story. And I was 54 years old at the time.

So what you were talking about with masters, that’s a very friendly phrase for people that are, if not over the hill, getting to the hill. And like you said, if you’ve raised your kids, you don’t have the expense of tuition and things like that, you’ve got a little extra disposable income. So you might be able to afford somebody to assist you with your training and help you focus on things that you might not be a totally up to speed on or blind spot or something like that.

And the most important thing that I learned along the way is that you want to stay healthy and injury free. Right? So that you can do what you’ve set out to do. A lot of people get sidelined from an injury, or if they get sick, they get off their training schedule, and they’re just not able to be at the fitness level that they need to be, come race day, if you will.

And I’ve never really thought of myself as a person who’s competitive when it comes to doing running or cycling or swimming. But you’re really competing with yourself, to be the best person you can be. And if you’ve set a goal, it doesn’t have to be riding 2,300 plus miles in three weeks like I did, but whatever your goal is

It could be just to be in better shape. Or like you said, do a 5k, do a 10k, do a half marathon, marathon, ride a certain distance that you weren’t capable of doing when you first set out to do something. And there’s a sense of satisfaction, a sense of accomplishment. You develop some confidence in yourself in one area of your life, which hopefully carries over to other aspects of your life.

So I totally get what you’re referring to, and it’s so inspiring, right? To be able to help somebody attain a goal that they thought was way out of line with what their ability would be, and the sense of satisfaction they get. And then now they can set some new goals. They can go on to do bigger and better things, if you will.

Shayne Gaffney: For sure. Yeah. I love it. And even going back to the days where I was practicing, like teaching somebody how to walk again after a stroke, or somebody breaks their arm and they’re a pitcher, getting them to throw a ball again, just doing those things, they were so inspirational. They were also very grounding for me too, where it gave me a lot of respect for what my body can do and what others might not be able to do, not under their own accord.

So it gave me a good appreciation for my life and all the things that I can do and I’ve worked hard for. So it’s a really good thing to have that. The word escapes me. It’s a really big word. But when you see what you can do, because somebody else can’t…I can’t remember the word right now, unfortunately. But you know what I mean,

David Hirsch: You’re living vicariously.

Shayne Gaffney: Maybe vicariously, that might be the word. Yeah, that’s a pretty big word for me.

David Hirsch: So, I’m sort of curious to know, how did you and Megan meet?

Shayne Gaffney: We met at the Wilmington 4th of July carnival. The big, huge to-do for any school age child in Wilmington, Massachusetts, at least back in my day, back in the early to mid nineties. Yeah, so we met at the carnival in eighth grade. It sounds super cliche, super cheesy, but you know, I knew that she was the girl for me as soon as I saw her. And I was fortunate to be pretty stubborn and pretty, I don’t want to say harassing. But she definitely was like, “Okay, I think you’ve talked to me enough. Let’s see if this could work.” And fortunately it did. And we got married in 2012, have two beautiful kids, and it’s been great ever since then.

David Hirsch: That’s awesome. Thanks for sharing. Well, let’s talk about special needs, first on a personal basis and then beyond. So I’m sort of curious to know, before Grace’s diagnosis, did you or Megan have any real exposure to the world of special needs?

Shayne Gaffney: I did through my patients I worked with, but that was on a professional level, not on a personal level. We were fortunate to not have anybody in my family or even extended family with any special needs.

David Hirsch: Okay. So what is Grace’s diagnosis, and how did that diagnosis come about?

Shayne Gaffney: Grace’s diagnosis…well, she has many diagnoses, but her primary diagnosis is CMV or cytomegalovirus, which is a big honking word, which is why we call it CMV and not cytomegalovirus. We found out that she was CMV positive at day three of life. So we were very fortunate to be at Winchester Hospital in right outside of Boston. The Boston’s Children’s Hospital staff were there working in the labor and delivery room, and they were able to recognize the signs and symptoms of CMV as soon as Grace came out, which are, you know, microcephaly or also called small head.

She was covered in this like blueberry rash, or it’s called petechiae, which is another sign. Then they ran some tests with revealed she had jaundice and just really high liver values. So with those three initial diagnoses, they tested her urine for CMV, which came back positive. And then they did a PCR test following that, which also came back positive. So we found out day three that she was CMV positive.

David Hirsch: So my understanding is that this is a very common virus that affects nearly 50% of the population. But it’s something that they come in contact with throughout their life as opposed to something that’s congenital. And what I think I’ve heard you describe is she was born with this, right?

Shayne Gaffney: Right.

David Hirsch: And that’s where the challenge comes, when somebody has congenital CMV. So do you have any sense for what the incidence of that is in society? You know, one out of whatever number of babies that are born?

Shayne Gaffney: One in 200 babies are born with congenital CMV. And then of those babies, one in five will have long-term health problems as a result of it.

David Hirsch: Wow. So surprising that it’s so common. The virus itself is so common, and while it doesn’t seem like a lot of babies, one out of 200, you know, that’s still a pretty consequential number of babies that are born with a condition.

And it does not seem that well known, at least by my understanding, as somebody who’s been immersed in the world of special needs, not just the typical special needs like autism, Down syndrome, cerebral palsy, but many of the 7,000 plus rare genetic disorders. And I’m wondering, why do you think that is?

Shayne Gaffney: That’s a great question, and I don’t really know honestly why that is the case, but there’s definitely a dichotomy between awareness and actual cases. So the statistic I always think back on is like 91% of women don’t know about CMV. There’s a huge number. And like I said, it’s one in 200 babies, and one in five have long-term health problems. It’s the number one cause of non-genetic hearing loss in the world right now. And also the main symptom that comes out of CMV is hearing loss.

But I mean, we never heard about CMV in our prenatal appointments from OB’s or from anybody. And I’ve interviewed a few OB’s, and I always hear the same thing. Like we don’t educate our patients on it, because there’s no modality we can do for CMV.

So I think an ounce of prevention is worth the pound of cure. And I think if the OB’s and those primary people that take care of pregnant women, if they educated them on CMV, I think that would be a really huge benefit. Because I mean, they educate you on the cat litter thing. I can’t remember what it’s called, but that’s such a rare thing. And like Zika virus, same thing. Like we hear about Zika, that’s such a rare thing, but we don’t hear anything about CMV. So it’s interesting how they educate on some pretty rare viruses and diseases, but don’t educate on literally the most common virus that you can get if you’re pregnant.

David Hirsch: Yeah, that’s interesting. Is it the type of thing that could be tested in vitro, like one of those battery of tests that they do to identify some of the more common challenges that might take place in a pregnancy?

Shayne Gaffney: They can test for it in vitro, but I don’t believe the accuracy is recognized fully. So they can test for it, but I don’t think it’s a typical course of action that they would do.

David Hirsch: Okay. So you get this diagnosis within just a first week of Grace’s birth. What were the symptoms? What were some of the things that were being diagnosed early o?

Shayne Gaffney: Super early on was obviously jaundice. So we had a big issue with jaundice. She had extremely low blood platelets, so we actually had to have two blood transfusions conducted because her platelet count was so low. So it was pretty touch and go for the first couple weeks when we were in the NICU.

And then after that she had an MRI done on her brain, which revealed pretty significant brain damage, a lack of formation in a lot of structures, especially on her visual cortex, which is the back of her brain. And from there we did hearing, and she failed her hearing tests in the labor and delivery room.

And then we had a follow up called an AB test, or it’s basically if the brain stem will conduct nerve impulses, and she failed that as well. So that revealed that she is profoundly deaf bilaterally.

And then we went to the eye doctor, and she had esotropia, which is actually fairly common. That’s just that she has a lazy eye on one side, but because of her brain damage, they thought that she wouldn’t be able to…actually, she could see, but what she actually perceived may not be a hundred percent accurate, just because that’s where the brain perceives what you’re seeing.

Cerebral palsy was diagnosed soon after that. And yeah, that was in the first two months. So that was a pretty heavy two months.

David Hirsch: I can only imagine.

Shayne Gaffney: We had like 25 visits or something in the first two months. It was a lot.

David Hirsch: Well, it’s not lost on me that you have an older child, right? So you are young parents, Finn is two-ish, while all this is coming down. It just seems like all of a sudden you’re scrambling. You went from having your second child, “Oh, we’ve got a boy, we’ve got a girl.” There’s a lot of good things going on. And then you get thrown this dramatic curve ball that how could you possibly be prepared for?

And I’m wondering, if you can reflect back to that first six months or so, what were some of the fears that you and Megan could remember?

Shayne Gaffney: Well, I think the main one was, would Grace live through the night? That was a pretty common fear, and it’s a pretty heavy thing to say even now, but it’s true. She was very, very sick and just very frail for the first six months to a year.

And like you said, we had a two year old who was crazy. He still is a little crazy, but we love him. No, just kidding. I think the interesting thing, which you kind of brought up, was we weren’t prepared for it. So you go in, everybody’s telling you, “Oh, everything is going great. She’s going to be a healthy girl. You should be excited, blah, blah, blah.”

And you know, it’s the absolute 180 from when Finn was born, which is everything is balloons, everything is congratulatory, everything is, “What’s he going to do for a living when he grows up?” Everything is like hope, right?

Grace is born, everything is, “We have to get this test done, and we have to do this blood draw. We have to do A, B, and C and D. Is she going to live through the day?” We didn’t really know what her level of function was going to look like. So that hopeful balloon was popped as soon as she was born.

And it’s just an interesting thing. You walk by other patient rooms to get to the NICU, and there are healthy babies, balloons, clapping, celebratory, everything is like happy hunky dory, right? And then you walk into the NICU and everybody is crying. There are buzzers going off. It’s just this insane environment. And then you walk out of the NICU insane thing, and everything is hunky dory. Everybody’s happy again.

So I really struggled with that. Especially the first six months, it’s like, “Nobody understands what I’m going through.” And CMV is such a rare thing and nobody talks about it, so “Who can I talk to about this? Who can I go to for answers, and who can I confide in about this?” So it was a really interesting six months time period for sure.

David Hirsch: Yeah. Well, what I think I heard you saying is that your expectations are super high and elevated going into the delivery, and then all of a sudden, like the way you described it, that balloon of hope gets popped and all of a sudden you’re in a surreal experience.

A lot of families around are celebratory, and everything is going as expected. And then there’s the small percentage of the families that end up in the NICU, with super preemies or the one-off type experiences. Which you’re aware of, I guess generally. But you think, “Well, the probability is so small, you know, it’s not likely,” and all of a sudden you’re there. And then it’s an uncharted territory, like you were describing.

Shayne Gaffney: Right.

David Hirsch: So I’m wondering if there was some meaningful advice that you got early on that you can identify that helped you and Megan sort of put this in perspective and started to chart the path that you find yourself on now?

Shayne Gaffney: Oh boy, that’s a good question. I can’t say we got any real positive news or advice those first six months, honestly. It was basically meeting new people and hearing more bad news about Grace’s diagnosis, or Grace’s overall outlook, or what she’s going to be able to do. Like, she’s not going to be able to walk, not going to be able to talk, she’ll be a vegetable, blah, blah, blah. All those things you don’t want to hear as a parent.

And I would say for me, I’ve always felt, I guess, empowered by, I don’t want to say disparity, but I guess it is disparity. You got dealt a really crummy hand. So what can you do to get yourself out of it? And how can you self-motivate? I hate words like pull yourself up by your bootstraps, those cliche sayings, but it’s kind of true. Like, “What can I do now to help me get out of my hole, but also bring my family with me?” That kind of a thing.

So I remember I actually signed up for the New York City Marathon, which was on day five in the NICU. I signed up for the New York City Marathon because the National CMV Foundation had a team going there. So I was like, “Well, there’s my outlet to start to kind of pull myself out of my funk, I guess.”  

I didn’t answer your question, but I guess that’s kind of how I did it. I didn’t really get advice. I just pulled myself up and went for it, and I’m still doing that today, obviously.

David Hirsch: Yeah. Well, if I can paraphrase what you’ve said, nothing comes to mind as far as getting specific advice, but it sounds like you were already getting plugged into the CMV community. You were aware that the CMV community existed, so you signed up for the New York City Marathon because they had a team.

Shayne Gaffney: Right.

David Hirsch: And maybe there wasn’t any specific advice, but what I hear you saying is that there’s this group of people that was drawing attention to doing something they like to do, which is running. And obviously you could relate to that as somebody who’s a coach, helping other people accomplish their own goals.

You found yourself trying to chart your own path, right? Maybe it wasn’t specific advice, but you’re getting plugged into a group of like-minded people, people that were what you’ve become, which is an advocate for CMV, as the time has gone by.

Were there some important decisions that you and Megan made, as young parents finding yourself immersed in this CMV world, that you can look back on and say, “Oh yeah, those were good decisions”? You know, those sort of turning points, if you want to call it that.

Shayne Gaffney: If anything, the best decision was to do everything as a team and really just stick together. These kinds of things can drive families apart just as much as they can bring people closer together. And I think that was a decision I made very early on. I knew this was going to be really, really challenging and really stressful and a lot of hard work, but I wanted to keep everybody together and keep them as close as possible.

So that was a really hard decision I made in the beginning, but it’s one of the best decisions I’ve made. And even today, we’re going into her school because she’s going to start preschool soon. So we’re going into school today to do her first IEP meeting, in two hours actually. We’ve been through this since day one together, so we know exactly what each other would say. We’ve been to all her appointments, all of her surgeries. So it’s been a nice team approach to dealing with her diagnosis.

David Hirsch: That’s fabulous. Well, I think it probably has something to do with your own upbringing, the fractured nature of your own upbringing, and wanting to maintain some stability and chart a different path for your family. At least that seems clear to me, right?

Shayne Gaffney: Yes.

David Hirsch: Because I think that’s one of the things we have in common, which is I don’t want that for my kids. That was just such an unstable, unpredictable environment. And if there’s anything I can do to be the leader in my family and do whatever it takes to pull it together—that’s what I hear you saying.

There’s one of the other dads in the network—well, there’s a lot of other dads in the network—but one that comes to mind, and his name is Warren Rustand. And he is like a leader amongst leaders. So I’m going to deputize you to listen to his podcast interview #143.

Shayne Gaffney: Great!

David Hirsch: And one of the favorite phrases I’ve heard him say often, referring to his family, is, “We do hard things.” And accepting that life is not easy. It’s not meant to be easy, and it’s those hard things, those more challenging circumstances, that really shape who you are, shape your character when you look back on it.

It’s like what you do from a coaching standpoint, right? You’re helping people deal with hard things, physically painful things, and mentally challenging situations. And you’re showing them ways to deal with that, putting the pain into perspective, and what is it you can do from a mental perspective to get a couple steps further, get the next mile, get to the finish line.

And these are metaphors for life, you know, what you do for a living. And if you can apply some of those same principles to your own situation, you’re going to be better off. This is not rocket science, right? We’re not sending a man to the moon, for God’s sake. It’s basic day-to-day stuff. We all have challenges, and it does take some physical fitness so you can bring your A game every day.

And it takes mental fitness so that you don’t get fatigued, so that you don’t get down or get distracted or start to have a pity party for yourself. What does that do? All that time and energy is not well spent. So, I agree. Anyway, I really admire you and Megan for charting the path that you have.

And at the risk of focusing on the negative, I’m wondering what some of the bigger challenges that you’ve faced have been.

Shayne Gaffney: One really big one comes to mind, which is Grace’s hearing loss. So she was born profoundly deaf, as I covered before. So we had two choices. We could either focus on sign language with the use of hearing aids, which we tried, or we could do cochlear implants. But the problem is cochlear implants basically sever the auditory nerve, so she’s never going to hear ever again, aside from cochlear implants. And she did have some hearing with hearing aids.

So it was probably the biggest challenge and the biggest decision we made was to do cochlear implants, and we made that decision simply because she has pretty bad cerebral palsy. She can’t use her hands well because they’re always in that kind like a claw formation, so she really couldn’t ever sign well enough to communicate with people externally from her family. So we decided to do the route of cochlear implants and try to focus on hearing and auditory input. And then maybe she could use a tablet for external speaking, or even talk someday, who knows, right? So probably the hardest decision we had to make was that one.

David Hirsch: And at what age was that?

Shayne Gaffney: It was interesting. Covid came and pushed it up six months. So it was supposed to be at about one year, like 14 months or so. She was scheduled for April of 2020, and we all know what happened in April of 2020. So she got pushed to August of 2020. So she was about two when she had them done.

David Hirsch: Okay. And has it been successful?

Shayne Gaffney: Procedure was great. The mapping went well for the implants. Our struggle now is her wear time is pretty low, because the magnets have to stay in contact with the back of her head. And she has pretty poor head control from her cerebral palsy, and she’s always sitting or laying down. So she’s always rubbing her head against the surface she’s on, and they just always pop off.

So we kind of solved one major problem and created another one at the same time. But we’re working through that. It’s sort of like, “What can we do to keep her cochlear implants on?” So if your audience has any suggestions, please write to me, because I don’t know what else I can do at this point to keep them on her head.

David Hirsch: Okay. I’ll make a note of that. So I’m sort of curious to know what impact Grace’s situation’s had on her older brother Finn, your marriage or your extended family, for that matter.

Shayne Gaffney: Yeah, I would say, honestly, it sounds strange, but it’s been a positive impact I would say. Finn is five. So Finn is just now starting to understand his sister is different, but not in a bad way. I think different in a good way. And it’ll give him great perspective and great awareness, and hopefully just real life education, that some people don’t get dealt the best hand. But we can always improve and do what we can with those hands.

And as far as marriage, our marriage has become stronger and it’s brought us closer together. And you know, like I said from the beginning of the interview, it’s improved my relationship with my dad, with my mom, which is obviously a blessing as well. And I would say, because Grace is so special and she does require a lot of work, it takes a village. That’s another saying. I’ve said a lot of sayings, but it does take a village, and I think my village has become larger and also stronger as a result of that. So I would say it’s been a very positive thing.

David Hirsch: Yeah. Well I’m so pleased to hear that. And nobody gets to where they are on their own. We like to think we have accomplished something, you know, by ourselves, but we’re all product of the experiences, including the people, that have played roles in our lives.

And there’s a lot of role models. That’s what I think of. We think of the good role models, right? The ones we emulate, the ones we want to be more like. But you know, we also learn from role models that we’re trying to do things differently from, and optimally learn vicariously through those role models, so that we’re not making some of the same mistakes that others made. And we’re hopefully in a better position as a result of that as well.

Shayne Gaffney: For sure.

David Hirsch: Thinking about that, I’m wondering what organizations come to mind that have played an important role in your family’s life the last couple of years.

Shayne Gaffney: I would say Easter Seals has probably been the number one organization, and that’s who Grace gets all her services through. So her occupational therapy, her physical therapy, her hearing therapy, all those really, really important EI stuff. She gets all those from Easter Seals. So that’s probably the number one organization for her.

And for me it’s probably been the National CMV Foundation. That was where I found my community. That was where I found people I could resonate with and just learn from, from parents who have been in my shoes before. So I’d say those two are probably the most important organizations I found.

David Hirsch: So, I think of you as a CMV advocate. I don’t know if that is on a business card that you have, but you know, you’ve become an advocate as a result of your own life experience. And I’m wondering, do you see yourself as an advocate? And if so, what do you see your role as?

Shayne Gaffney: Yeah, I would say I’m happy to be an advocate for CMV, and I think I have a few roles. Obviously, the most important one is being a dad to a CMV affected child. Also being hopefully a member of the community to help other parents in their journeys and be a sounding board for other dads.

And then I’m also working with companies like Moderna and Dr. Panther. And then we also actually have a bill in Massachusetts, which is in the public health committee now, which is going to ideally mandate prenatal education and universal screening for newborns in Massachusetts.

So I’m trying to do everything I possibly can to get the word out, as well as help reduce infection rates and prepare parents if they do have a baby with CMV in the future, just so people don’t have to go through what I went through with Grace and my family.

So yeah, I would say I have a pretty long business card at this point. But I love everything I do for this community and for this virus. Honestly, I wouldn’t change it. I wouldn’t change a thing.

David Hirsch: Yeah. Well, what I really admire about you, Shayne, is what you’ve just expressed, and in the order that you expressed it. You said, “I’m a dad first. That’s my primary responsibility.” You emphasize what you do professionally. What comes to mind as an advocate is that you want to help other parents, even though this has just been an experience that you’ve had over the last few years. And that part of that is aligning with companies like Moderna and helping advance, if it’s meant to be, finding a vaccine.

And then the broader message, which is, “Hey, there’s something we could or should be doing in the medical community so that better testing takes place,” so people are on top of things at a earlier point in time, that they don’t get blindsided perhaps, like you and Megan did.

And I’m hoping that as a result of the life that Grace is leading, which is one that you had anticipated before her birth, what you’re doing as an advocate is a testimony. It’s part of Grace’s legacy. And I hope that you’ll find as she gets older, that she’s going to impact the world in a more profound way perhaps than she would have if she was just another typical kid.

Shayne Gaffney: She already has, honestly. I’m here talking to you because she was born, right? If she wasn’t born, I would be typing on a computer, looking at a screen, or at my day job. I wouldn’t be doing this really, really super important work. So she already has, and I think she’ll continue to, honestly.

And honestly right back at you too, like what you do for the podcasts, for the foundation, what you’ve done to kind of bring a voice to dads and bringing the community of dads together is super profound and I think super important. So thank you for what you do as well.

David Hirsch: Yeah. Well, thank you. So in our world, in the world of the Special Fathers Network, we have over 500 dads who’ve agreed to be mentor fathers to the younger dads. And, you know, here you’re talking like a mentor father, right? And your oldest child is five. And with all due respect, you do have a lot to share.

Is there any specific advice, other than how to keep these cochlear implants from getting rubbed off? Any advice that you can think of that you, or you and Megan would be looking for at this point in time?

Shayne Gaffney: We’re at the precipice of school. Like I said, we’re literally two hours away from her first IEP meeting at the school. So that’s a gigantic milestone we haven’t even crossed yet. So yeah, that’s kind of where we’re at, I would say. For us, it’s like, how can we navigate the IEP process? How can we navigate schools? Like what does that even look like? We have no idea what that is. So that’s in the front of my mind right now, for sure.

And otherwise, yeah, more like just not letting the demons win, I guess. Staying positive, staying focused. I always go back to the quote, I think it was Eisenhower. I don’t remember though. But comparison is the thief of joy. Who said that? It was a president. You don’t know who it was? I’ll think of it later, but comparison’s a thief of joy. I always go back to that statement and it’s very true. Once I stopped comparing Grace to normal abled children, that’s when I was able to really accept it and move on and be where I’m at right now.

Before then, I was always mad, angry, upset, sad, all those emotions you express. Because I always wanted her to be something that she was never going to be, and it’s not really fair to her for me to think that she would ever be anything else. So once I accepted her for who she is, that’s when I became a special needs father. Because Grace was always who I wanted her to be and who she was going to be. It just took me a little bit to accept her for who she was.

David Hirsch: Yeah, well, very well stated. And like you underscored, once you’ve accepted her for who she is, then everything else transpires from there, right?

Shayne Gaffney: Yep.

David Hirsch: And I think the frustration and the anger and the anxiety all come from trying to reconcile where I anticipated being and where I find myself, and it’s not a straight line. It’s a slippery slope for many people, and I dare say that some people just never get there. They just cannot put their minds around it for whatever reason. I think you are uniquely qualified to be the parents that you are, and Grace is the primary beneficiary. Actually the world’s going to be a beneficiary of your experience as well.

So any specific advice that you can offer another parent, now not receiving, but giving or offering advice to another parent that finds himself in this surreal world that you’ve described?

Shayne Gaffney: Yeah, I think I just gave it. Comparison is the thief of joy, I would say. And I would say try to accept, which obviously is so easy to say, and it’s so hard to do—if not impossible to do with some people. But accept your kids for who they are. That’s the most important thing I think you could do as a parent. Even if they’re normally abled or special needs, just accept them for who they are. That’s what people want to do.

David Hirsch: Excellent. So why is it that you’ve agreed to be part of the Special Fathers Network?

Shayne Gaffney: I think because the mission is important to me and I resonate with it, which is helping others through hard times, educating, being a mentor, being a mentee, whatever you want to call it. Being a human, I think that’s what’s really important to me. So it was a pretty simple no-brainer decision.

David Hirsch: Well, we’re thrilled to have you. Thank you for being involved.

Let’s give a special shout out to Leanne and our other friends at New Line Media for helping connect us.

Shayne Gaffney: Yes.

David Hirsch: If somebody wants to learn more about CMV or to contact you, how would they go about doing that?

Shayne Gaffney: They can connect with me…actually, personal email is fine. So it is my last name, period, and then my first name at gmail.com. And then they can learn more by visiting, nowiknowcmv.com, as well as the National CMV Foundation. Those are two great websites to visit.

David Hirsch: We’ll be sure to include that in the show notes. That’ll make it as easy as possible for people to follow up. Shayne, thank you for taking the time and many insights. As a reminder, Shayne is just one of the individuals who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.

Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501(c)3 not-for-profit organization, which means we need your help to keep our content free for all concerned. Would you please consider making a tax deductible contribution? I would really appreciate your support.

Shayne, thanks again.

Shayne Gaffney: Thank you for your time.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help, or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad. Also, please be sure to register for the Special Fathers Network biweekly Zoom calls held on the first and third Tuesdays of every month. Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to david@21stcenturydads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch. Thanks again to Horizon Therapeutics, who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.