Category Archives: Mental Health
When You Can’t Be Vanilla Ice
You’re probably sitting there reading this and wondering why this post has a reference to the great philosopher Vanilla Ice. Now that I’ve got you hooked in, and before I explain myself, first allow me to set the stage a little bit:
Have you ever had a time – maybe late at night – where you’re giving a dosage of a med to your Heart Kid, or just doing the “are you still breathing” check, and you just get overwhelmed with a feeling of helplessness when it comes to your child’s heart defect? Every once in awhile it happens to me: I sit there and I watch Nolan sleep and it all looks and feels so peaceful. But then there’s all those surgeries he’s been through, and the pain, and the fear, and the monthly blood draws, and all the appointments…and I just get so upset….because I can’t be Vanilla Ice.
But why Vanilla Ice? Unless this is the first time you’ve been on the interweb – or in the world, for that matter – you should know about Vanilla Ice’s 1990 smash hit “Ice Ice Baby,” which features the following line:
All jokes aside, yeah it does get really frustrating that there are days where I look at my son and I feel helpless because there’s nothing that I can do to fix it. I’m not a surgeon, not a doctor, not a nurse. If I could snap my fingers to make the CHD go away, I would…heck, if I could trade places, I would. But this is not something that I – myself – can fix. And it’s a struggle, you guys, because as human beings we are fixers and problem-solvers. We hold problem-solvers in high regard! But this, this tends to bog us down. Do you ever feel that way?
So what do we do, then? Wallow? Nah. For me, I try to get a little bit reflective and look back on how far this kid has come.
Example: the other day I was in the kitchen making dinner and Nolan was looking for a particular book. He asked me where it was and I told him I thought I saw it on his bed, and he replied with, “Well I have to go get it!” and proceeded to run up the stairs. Ok so that doesn’t seem like much, but in that moment I’m reminded about the early days of weekly physical therapy, where he had to learn to sit, crawl, and eventually walk. And a big thing was getting him up and down the stairs safely. And he was so small that it seemed like such a struggle for him. Now he’s running up the stairs. Or climbing on trees at the beach. Definitely a moment to be thankful for.
Or there’s also the time where we were at a farm near our house and Nolan asked me to push him on the horse swing. The same kid who was cut open 3 times in an effort to give him a life to live, was now smiling, laughing, and screaming with joy. The same kid, who as a baby was on a vent and couldn’t even cry, was now shouting, “Push me higher, dad!”
Or those times where he asks me to make him “fly like an owl.” I can’t help for those moments of joy, love, and laughter.
So yeah…as a Heart Dad, I can’t fix his CHD. But what I can fix is my perspective. If I focus on what Nolan has overcome, and especially those wonderful, everyday moments, I can find myself not so down-in-the-dumps. And yeah, I know it’s not easy to do all the time; sometimes you need to link up with other heart parents to help you through…stop, collaborate, and listen, if you will. See? In a way, you can still be Vanilla Ice.
Let’s Do It Again!
Do you remember this joke (I use the term joke loosely) from your childhood?
Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?
Person 2: Re-Pete.
Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?
Person 2: Re-Pete.
Person 1: Pete and Re- Pete were in a boat. Pete jumped out. Who was left?
Person 2: *Mauls Person 1*
Bruh. I know some of you just read that and came to the crushing realization that this joke has become a lot like your life, because you have small children who – let’s face it – can’t listen to save their lives, or just the daily act of being a Heart Parent is a lot of the same stuff over and over and over again. Ah, repetition. Don’t we love it?
If you’re anything like me, repetition is a struggle. My grandparents, at points throughout their lives, worked at factories and sometimes I think about that and can’t imagine doing that kind of work – standing in one spot, doing a repetitive task over and over again until I can go home. I would lose my mind. But hey guess what…Heart Dad life can sometimes be like it too. My struggle is often with the pharmacy: I use the pharmacy here at work because of the convenience and since the cardiology office is right next door in case I need any questions answered. But eeeeeeeeeevery month it’s the same thing for one particular med, and it goes like this:
Me: Hi I’d like to call in a refill for my son’s medicine *gives name and birthdate*
Pharmacy: Ok, which med?
Me: Sildenafil
Pharmacy: Um…it says here you’ll need to use the mail order pharmacy for that.
Me: Yes, I know, but I’ve talked to them and they can’t do this med, so I need you guys to do it.
Pharmacy: Are you sure?
Me: Yes, I’m sure…been doing this same call for months.
Pharmacy: Well let me call them and find out and I’ll call you back.
Me: *screaming internally* ok
*15 minutes later*
Pharmacy: Ok, we’ll have it ready at 2.
Dude. Same thing. EVERY. SINGLE. MONTH. It really used to make me go guano as I have to repeat the same thing over and over every single month. Whenever I pick up the phone to call in this med, I know exactly what will happen. But repetition is everywhere: every month call in new feeding supplies, keep track of meds to call in refills in time since they’re closed on weekends, give meds at 6:30 then 2:30 then 10:30. On and on. Repetition is everywhere in our lives!
Why does repetition make us nuts? Well it’s because it can be monotonous, it’s the opposite of spontaneity and sometimes feels a bit confining. We want to spread our wings and do whatever, whenever…right? Right? But check it out: nature…the very universe itself…is repetitive, and no one freaks out. The sun rises, the sun sets, Earth turns, the seasons change, etc. And this repetition is important to us…if it didn’t happen, we’d freak out and it’d be pandemonium in the streets!
Let’s face it, friends…for a lot of us, the repetitive nature of being a Heart Parent won’t go away anytime soon. There will be meds to give, tube feeds to do, treatments to complete, appointments to go to, refills to call in. I think we can all make an effort to change the way we view these repetitive tasks:
Add Something Positive to the Experience: so if you gotta do it, make it purposeful and a win for everyone. When I give Nolan his feeds at night, it’s easy to see it as just part of the daily routine, but I’ve started using that time to just look at him and – even though he’s asleep – whisper to him that I’m proud of all he’s accomplished. For those couple minutes I can celebrate who he is, and that always makes me feel good, as opposed to “Lemme finish this so I can move on.” Or when I go pick up his meds from the pharmacy: I try to chat up the team if they don’t have a long line. A smile, a “hello,” and a “how’s everything going today?” goes a long way towards helping you not become the “here he comes again” guy.
Remember The “Why” Behind the “What”: as mind-numbing as this can sometimes be, it’s all for a purpose. Your kiddo needs the meds, needs the feeds, needs the appointments. It’s all part of the job of protecting them and giving them the best shot at a great life!
Pat Yourself on the Back Sometimes: don’t get a big head about it, but you know what? You’re doing a really good job…tell yourself that every now and then. You’re playing your part in making this happen and keeping your kiddo as healthy as possible, so give yourself a little bit of grace. You’ll always be ready to go back for more when you feel good about what you’re doing.
Embrace it, Don’t be Resigned to it: there’s a huge difference between “this is my life and I’m gonna learn to work with it” and “*sigh* I GUESS THIS IS MY LIFE NOW.” I get it, sometimes you can feel both, depending on the week or how much you’d have to deal with the kids smearing mystery goo all over the house. But if you can embrace the repetition more than you just get resigned to it, you’ll find it much less of an inconvenience. It’s the new normal, remember? I know it’s not easy, but just try!
Keep your head up, friends. I know sometimes the repetition gets crazy and I know it’s turned your life upside down. You can’t go out like you used to, can’t just get up and go, and your calendar is full of reminders about meds and dr appts and whatnot. I’m not trying to say “just deal,” that would be callous of me…we gotta work with what we got, but we also have to change the way we look at what we’ve got. You can do this.
A Dad’s Superpower
So I’ve been writing this blog for a few years now and in it I’ve talked about our journey with Nolan, the ups and downs of being a Heart Dad, I’ve offered encouragement and all that good stuff…but it’s occurred to me that I haven’t spoken once about a superpower that lives within all of us Heart Dads. Is it super strength? No. Super speed? God no, I run like a drunk sloth. Intelligence? My high school math teachers will tell you otherwise. No, the superpower we have is…
THE DAD JOKE.
Now that the kids are all relatively school-age, this power has begun to manifest itself in my household, in the car, in the grocery store…heck, wherever. Much to my joy and my kids’ chagrin. My oldest, Hudson, is usually on the receiving end of the Dad Joke(s) and the resulting cackling that follows them, often to the point where I’m coughing from laughing at my own joke. Sometimes I spend days focusing on a theme…lately it’s been pirates and it’s been like this:
Me: Hudson, where does a pirate grow his vegetables?
Hudson: I don’t know.
Me: In his gARRRRRRden! *laughs loudly*
Hudson: Ugh.
Me: Hey Hudson! Why does a pirate like reading magazines?
Hudson: For the articles.
Me: NO! For the ARRRRRRRRRRRRRRRticles! *laughs louder*
Hudson: Stop
Me: *singing loudly* In the naaaaame of looooove. Before you break my heAARRRRRRRRRRRt!
And on and on. I cracked up just typing it out. So what’s the deal with me writing about Dad Jokes?
May is Mental Health Month and while it’s coming to a close, I really wanted to write about it since mental health is so important for us as Heart Dads. And you know what? Laughter is actually really really good for your mental health:
It Makes You Happier: I mean, duh…I’ve never seen a cranky person cracking up laughing. It can instantly lighten your mood.
It Releases Good Hormones: when you laugh, you release dopamine and serotonin, which make you feel really good and helps battle things like depression.
It’s Good for You, Physically: laughter burns calories! Now hold up: don’t cancel your gym membership…it’s not a ton of calories, but it helps nonetheless. So laugh away!
It’s Good for YOUR Heart: listen, we spend a lot of time focusing on our kids’ hearts, which is of course very important, but we need to pay attention to our hearts too! Laughter helps with blood flow, which is really good for your ticker.
It Helps You Be More Social: laughing with someone or a group of people always makes you feel better and develops a special bond and relationship with is so helpful for our mental health. Whenever I get together with my best friends, we tell the same stories and laugh til our sides hurt, every single time. And I wouldn’t trade that feeling. It always makes me feel good and I love them for it.
So Dads, get out there and drop a corny joke, or three…laugh…make others laugh. Watch a funny movie, fire up Netflix and catch a standup comedy special. Anything. Just laugh. We deal with so much heavy and serious stuff that I think this is the first to fall off…don’t let it. There’s an appropriate time and place for jokes and laughter and I trust you to know when that time is…and when that time comes, don’t be afraid to use your superpower to make others – and yourself – laugh. Do it for you…because a better you is better for everyone else!
I also realize that not everyone who is reading this is in a place where laughter is possible or appropriate. You’re going through some difficult, heavy things and you’re just taking it day to day. Please know that I understand and that I support you and any of my friends who read this can reach out to me for a supportive ear. Please know that I have a lot of other posts on here regarding mental health that could help you:
Stay strong! You’re not alone.
Talking to Myself
I’m gonna share a story of a mistake I made. Maybe you’ve made the same one, maybe not, but here goes. There’s a particular medicine that Nolan takes around 4pm everyday and we’re really good at not missing it or anything like that. So sometime last year I came home from work and literally saw my wife giving Nolan that particular medicine. About 30 minutes later I had one of my patented Chris Perez brain farts. It suddenly occurred to me, “Hold up, we didn’t give Nolan his med!” So I drew some up and gave it to him. Bam! Go me! Right? Right? Nope. I told my wife, “Hey I gave him his 4:00” and she was like “Uh…I already gave it to him”…and then suddenly it felt like I was hit by a bus. OHHHHHHH NOOOO….what did I do? WHAT DID I DO?! Ohmygodohmygodohmygod he’s gonna get sick and it’s all my fault!
So I got on the phone and frantically called the cardiologist, all the while feeling incredibly guilty. He told me not to worry, just to skip his evening dose and – you know – don’t do that again. Crisis averted. Nolan was 100% fine. Me? Not so much. Because you know what happened, and maybe you’ve been there yourself: the self-talk begins. You big dummy. How can you let this happen? This is your kid, you could’ve killed him. Don’t be so stupid next time. And on and on. Yeah, you’ve been there too, I bet.
Self-talk is a really fascinating thing because we can often use it to encourage ourselves, drum up some bravery, and push ourselves to better places. But quite often our self-talk is just an effort to sabotage ourselves. Want to know the person who tries to cut you down the most? Look in the mirror. Harsh, I know…but you know it’s true. But I learned something that helped me think a little more about my self-talk, and it came from my job. So one of my responsibilities is to conduct orientation for all new hires at the hospital where I work. I actually kinda enjoy it and use the opportunity to tell Nolan’s story in an effort to teach teammates to use empathy more. One of the best parts of orientation, though, is when our Chaplain comes to speak to the group about Compassion Fatigue. You’ve read about it here on this blog (if you haven’t, read it here) and you know that I think it’s so important. Anyways, after this medicine mix-up happened, I was standing in the back of the auditorium listening to this portion of the orientation and the Chaplain said something that really helped me see things differently.
He was talking about self-talk and how harsh we can be on ourselves. He asked this question that really stopped me in my tracks: “If your best friend messes up or makes a mistake, would you talk to them the same way you talk to yourself when you mess up?” and I was like WHOA. This is incredibly true: I’d never talk to my best friend the same way…I’d try to be encouraging and supportive and give him a pep talk. Me? I’m the moron. If I talked to my best friend that way, he’d really dislike me. Big time.
So this really made me think about how I talk to myself. Because listen: you’re going to screw up…we’re not perfect people, we’re not perfect parents – and when you add a CHD into the mix, well…it just gets even more bonkers. So I think we owe it to ourselves to watch how we talk to ourselves. We owe it to ourselves – and our kiddos – to be the best version of us we can be, and that includes mentally. If we cut ourselves down for even the tiniest of mistakes, that only makes us feel worse about ourselves and in turn contributes further to our Compassion Fatigue. And before we know it, it’s a vicious cycle.
So before you start beating yourself up, stop for a second and think about whether you’d talk to your best friend – or even your own kid – that way. And consider changing the way you talk to the man in the mirror. It’s bound to be better for your mental health and I think you’ll find out you can accomplish way more when you encourage yourself!
Keep being strong, heart parents…you got this!
Caring For Your Mental Health
Hi friends: I have something really important that you all really should read – please don’t skip this post. It’s about your mental health as a Heart Parent. May is Mental Health Month and I feel like this is a great time to talk about this topic. I’m not a mental health professional by any stretch, so I had the great opportunity to sit down with a couple social workers at the hospital where Nolan has received his care, and we discussed the topic of mental health in Heart Parents. I wanted to thank them for making time to chat with me, since the bulk of the material in this post comes from their insights and experience.
It’s safe to say there’s not enough discussion about this topic in our community. And since this is a blog from a dad’s perspective, I can say there’s even less conversation about this among men. But if you really sit down and think about it – if you’re honest with yourself – you know this is something almost all of us will struggle with at some point throughout our journey. Call it what you will: depression, the blues, the doldrums, feeling down in the dumps, anxiety, stress, anger…we’ve been there. But a big problem in our society is that there is a stigma around mental health issues. The perception is if you’re struggling then the problem is surrounding something you did…or you tell yourself that you need to focus on your child and not yourself…or that mental health issues mean you’re crazy or something is wrong with you. This is not at all the case. There is nothing wrong with you. I won’t have all the answers…but I really hope this post starts some good conversation and really helps someone out there.
What We Feel
Do you remember when you received your child’s diagnosis? Do you remember what it was like when you received the news from a cath that was a total curveball? That, friends, was a form of grief. If you’re not familiar with the Kubler-Ross model of grief, there are stages: denial, bargaining, anger, depression, and acceptance. They don’t always go in that order, some stages last longer than others, and stages will often repeat themselves. The first time I heard this it made total sense! For example, we were looking forward (as much as you could) to Nolan’s most recent cath procedure because we were certain they would open up his pulmonary artery and it would lead to better post-Fontan oxygen saturations. When the procedure was done and the doctor came to see us, he said just what we expected: they stented the left pulmonary artery….and then came the BUT. Then he told us they found high lung pressures…pulmonary hypertension, and he’d have to go on additional medications and there was the possibility of him having to wear oxygen regularly. Outwardly I remained calm. Inside I was a freakin’ volcano of anger. I was PISSED. Why? I didn’t want this, but even worse I didn’t expect this. This wasn’t the plan. This wasn’t fair. Hasn’t my son been through enough? Didn’t I ask you, God, to look out for him this one time? What kinda jerk are you? And on and on…I’m not an angry person at all, but I couldn’t shake that feeling. I just wanted to grab a chair and throw it. Then maybe do it again. Even worse, I was upset with myself for being angry! Luckily on a walk down the hall shortly afterward I ran into the hospital chaplain…he didn’t know I was there that day, but he walked up and just gave me a hug…and it was exactly what I needed, because I sorta unloaded on him and it felt good to talk it out. From there I was ok with whatever it was going to take to help my son. In the end, no oxygen necessary, just a new med and regular check ins with the pulmonary hypertension team in the cardiology office. Have you ever been there, though? Angry? Did you feel bad about it afterward? It’s ok: it’s a natural part of the grief process…do not beat yourself up about it and don’t let someone tell you you’re wrong. Just don’t stay angry 100% of the time!
The loner you care for a child with a CHD, there is a degree of anxiety and depression that show up in some shape or form. Often the stigma about these things arise after the crisis has subsided. I remember when Nolan was in the long, 2-month recovery after his Norwood Procedure, I had to return to work because I was running out of PTO days. At the time I worked at a Hospice…yes, a place caring for dying people. It was rough. And it didn’t help that I was a total monster about it, too…God forbid someone else said they were tired. You don’t know what tired is! Or someone having oxygen saturations in the 80’s…boo hoo. Yeah, it was bad. Worse, I felt terrible about it…no, I’m not excusing being rude, what I’m saying is that we can’t expect ourselves to always be perfect when we’re carrying such a heavy burden on our brains. Instead of saying, “Man, I’m terrible…look at how I’m acting around people,” we can say “Hey I’m struggling, I need to talk to someone.”
Caring for a chronically ill child is very isolating, even if you know other people who have been through it before. Have you ever felt that way? The truth is, guys, Heart Parents often thing you have to be tough, push through, and do it all with very little help. I know, I’m one of them. But this is not a matter of strength or willpower…if you’re struggling, you’re not a failure for admitting it!
While it does indeed make you feel vulnerable, admitting that you’re grieving or feeling depressed or anxious is an extremely brave thing to do! Please, please, please don’t be afraid to be a little vulnerable…you will open yourself to some good, healing conversation.
Survivor Guilt
This one is a really tough one: the internet is a great thing because it keeps us all connected through social media, but sometimes – for me – it can also exacerbate Survivor Guilt. This happens when you find out another CHD child has passed away, and while you feel really awful for that family and that child, you also struggle with internal questions like why did my child survive and not this one? Did I do something to be so “lucky,” and if so can I do something to lose it? Is my child next?
Guys, this is also normal. Painful, but normal. It’s also more complex than just the term “guilt” because what happened isn’t your fault, but you still feel awful about it, particularly because your own child – while struggling – was spared that specific circumstance. Survivor Guilt triggers the fear of the same thing happening to your child: I know for me, Survivor Guilt is at its worst when things seem to be “fine.” Then you read about another child losing his or her battle with CHDs and then the reality of CHDs comes roaring back into your life like a hurricane. Let’s face it, though, the reality is always there…we know that…but it’s in these moments where it really hits us like a ton of bricks.
One of the social workers I spoke with put it perfectly: guilt exists in all parents under the surface and it kicks in the minute your kids are born, whether they’re healthy or not. And it’s true! Think about it: I remember vowing that my kids wouldn’t watch TV at a young age and blah blah blah. Now? I’m quick to throw on a DVD in the car merely to give myself even 15 minutes of mental quiet lol. You’ve been there, admit it! And you can easily say, “Man I SO failed there,” or you can just admit it is what it is and continue to work hard towards doing your very best and giving your kiddos an awesome life.
So What Can We Do?
First of all be honest with yourself. You know yourself better than anyone…so if you’re struggling with anxiety, depression, stress, anger, fear, etc., first admit it to yourself, then look for some help. You don’t need to shout it from the rooftops like, “HEY EVERYONE! I’M DEPRESSED!” No, just reach out to a support person who won’t judge you: this could be someone on your child’s medical team (nurse, social worker, physician, etc.)…you can tell them, they’ll help you. It can also be a fellow heart parent…we’re a great resource for one another! It can be someone who has a child with a different illness. Whoever it is, pick one person that you are comfortable being vulnerable with. Reach out to them and be honest.
Recognize that feeling this way does not make you a failure. Rather, it is ok to FEEL. We were not made to be robots…we are human beings with struggles and emotions: don’t let them get the best of you.
Sometimes you do need to see a professional about how you feel, be it a social worker or a therapist. Again, this is ok…they’re great people who are there to help. Don’t let the stigma stop you from getting help! You can start this conversation with a therapist and it’ll be a safe place to discuss and won’t always immediately lead to a diagnosis or medication. Sometimes you just need to talk or get some good tools to help you through those tough times.
Practice some self-care. This is really important because while we care for our heart warriors, we can sometimes let ourselves slip. Self care does not equal selfishness. Your self care depends on…you: everyone is different and has different things that could meet their needs, particularly while they’re in the hospital with their child. For some people, switching places with a spouse and going home for a couple hours is a powerful recharging method. For others it might be taking a walk through the hospital so you’re not very far away. It’s ok to take a moment here and there for yourself: for me, it was chocolate milk and coffee. I’d grab a chocolate milk from the nourishment room, then walk to the waiting room to make myself a cup of coffee. I was only down the hall, but I was away enough to feel like I could breath for a minute, if that makes sense. I’d sip my coffee and milk and look out the front windows of the hospital at the cars going by…and I’d just zone out. It was great. Another good tip is practicing mindfulness. According to mindful.org, mindfulness is the basic human ability to be fully present, aware of where we are and what we’re doing. There’s some great tips on their site, so check it out. Be there for yourself, too.
Look out for one another. Heart Dads. Heart Moms, Heart Siblings. Heart Friends. We are a community and we need to support one another: be sure to acknowledge and appreciate one another! It just feels so good to know someone is cheering you on, especially when it feels like you’re isolated. With that said, don’t be an island…seek help from friends, family, your child’s medical team, faith leaders, professionals, etc. If you want to talk, email me! From time to time I get readers who email me and I love chatting with you and learning about your kids and where you’re from, etc. I won’t judge you, I just want to help!
Also, I need to acknowledge that sometimes circumstances can seem much too difficult to bear. If you feel like you’re at the end of the rope or you’re struggling with suicidal thoughts, please contact the National Suicide Prevention Lifeline at 1-800-273-8255 any time of day or visit their site at Suicide Prevention Lifelife for resources and an online chat option. You’re not alone and people are there to help! If you’re an international reader (and I’m so thankful for you!) please visit this page for Suicide Prevention resources around the world: IASP.
Guys, this is a tough topic to discuss, but I hope you’ll agree that it is SO important. Ending the stigma of mental health in the Heart Parent community begins with us. We owe it to ourselves, and we owe it to our heart warriors to give them the best version of us we can! I hope that me sharing a few of my stories will help you realize that none of us are perfect and we all struggle throughout this journey…but we can make it through together.
Did this blog entry cover everything? Of course not. Please continue to talk to professionals for more information…there’s so much more out there.
*I did wish to pose a question to my readers. I’ve been thinking of holding a form of online meetup/chat that is an open, judgment-free place for Heart Parents to gather and just talk. You don’t need to spill your guts…you can just come and listen. But first I want to know if you’re interested and if it’ll be helpful at all. I still need to figure out the logistics of it all, but I’m posing the question here first and feel free to answer in the comments: if I hold an online chat where I and other Heart Parents are available to just talk about whatever, do you think it will be helpful and will you consider participating?*
Thanks!
Half Heart. Whole Life. 