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*


Repetition

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.

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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.

HungryDad

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!

DadJoke1


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:

Self Talk

Caring For Your Mental Health

Compassion Fatigue

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!

talking-to-self

Another Glorious Year

Hey friends, I hope all is well in your world and that you’ve enjoyed your holiday season! It’s really hard to believe that 2017 is almost over: the final bit of this year was really eventful so I wanted to give a bit of an update on what’s going on in our world.

Party Time, It’s Excellent

I’ve always enjoyed the month of December because it’s always had my favorite holiday in Christmas. Since the twins were born, though, it’s given us even more opportunity to celebrate! This year the twins turned 5 years old and I just love celebrating their birthday, especially now that they’re starting to get old enough to be more and more excited about it.  Not to mention that every birthday with Nolan is a really big one!  We went to each of their schools to celebrate their birthdays with their classmates.  Nolan didn’t want cupcakes for his class, however…in true Nolan fashion he wanted to share some Scrabble Cheese-Its with his class.  Remember, this kid is obsessed with the ABCs, so of course! It was so cute to see him in school interacting with his classmates. We got to feed him and see excited his little friends were to get their crackers.  It was really cute and it made Nolan happy.  We even asked him if he wanted us to take him home early and he said no thanks, he wanted to stay in school.  I’m so proud of him…he’s going to school from about 9:30am to 2pm and he’s totally rockin’ it! Grant, on the other hand, had his birthday celebration at school complete with cupcakes and it was so much fun to see him and his classmates with frosting-smeared faces.  Too cute! We followed it up with lots of other celebrations with family and friends and, of course, at home.  On their birthday I always want to just scoop them up and squeeze them…because I’ll never forget how absolutely insane their first day on this planet was.  And I’ll never forget how much they’ve both been through, and I’m eternally thankful.

Twins5th-1

Happy Heart Day, Nolan!

A very important day of remembrance for me is December 17th, which is when Nolan had his first heart surgery – the Norwood Procedure…now 5 years ago.  I always spend time on this day remembering how I felt: on one hand it’s kinda like punishment because I remember being so scared, to the point of paralysis…but to me it’s important to connect with that feeling from time to time.  I don’t wallow in it, but I do talk about it with people.  Most importantly I look upon that day as the start of Nolan’s heart journey, and I remember how much he’s been through and I look – with joy – on the strong little guy he is today.  And when you look at it that way, you can’t help but to be so happy to celebrate his heart day:

Nolan Heart Day 2017

Christmastime is Here!!!

Man, Christmas with 3 little boys is totally bonkers, and the craziness began like a week before the actual holiday, as we celebrated with other family and friends.  So the kids were definitely ramped up for the actual day! It was so fun watching them rush down the stairs and to be so excited by the gifts that Santa (and mom and dad) got for them. I love the smiles and the laughs and the hugs. And hey, we even got a decent pic with Santa:

Twins Santa 2017

And Lots of Other Good Stuff, Too

Lots of other good stuff happened in December too. We had another feeding appointment at UNC and it went really well: Nolan has really cut back on the vomiting (to nearly nothing, knock on wood) and is eating purees more regularly and eating things like Cheese-Its, Rice Krispies, and some mashed potatoes.  Definitely a huge move in the right direction!

Nolan also had a really great cardiology check-up: his doctor said his heart function looks really good and we won’t be back for another 6 months or so!

After Christmas we took the kids to a trampoline park to play with some friends.  As you know, Nolan looooooves trampolines and jumping, so he was very excited about this.  Shockingly, though, he spent the most of his time “going on an adventure,” as he calls it.  This meant he climbed up, through, and around this huge playground structure inside the trampoline park.  I mean look at this kid:

Nolan Climbing 2017

I was standing like 2 levels below him when I took this picture.  He proceeded to climb way up and go down the long, twisty slide all by himself.  Why is this significant? Well after Nolan’s Fontan Procedure, I noticed that he was developing some fears that he didn’t have before.  When we’d go to any playground, he no longer liked to climb up like he used to and he definitely didn’t like to go down slides. At his first parent-teacher conference at school, his teacher mentioned how much Nolan loved getting on the playground and going down the slide…and I was like “Hold up…are we talking about the same Nolan?” Apparently the Physical Therapist at school has been working with him on this, plus seeing his friends play has spurred Nolan to do the same.  And you should see this kid go! Off he went on his “Adventure” and he even told me I didn’t have to go with him.  Definitely a proud daddy moment for me…it really symbolized how much progress he’s made.  Keep climbing, big guy!


So to all my friends reading this, I hope this year was a really good one for you.  And if it wasn’t, I hope 2018 is a fantastic one for all of us.  May your new year be full of love, kindness, gratitude, victories (however big or small), empathy, and compassion. Don’t let the little moments pass you by without being thankful, don’t forget to take care of yourself, don’t forget that the work of your hands is sacred, and don’t forget to give lots of big hugs.

And finally, in case you need a random smile, and the days get a little rocky, you can always do what Nolan does – dress like an owl and dance to Laurie Berkner:

Twins5th-2

HAPPY NEW YEAR, EVERYONE!

Hands Out of the Sand

Well November is finally here: the time of year where the temperature starts to drop a bit, the Halloween decorations get put away, and kids start to develop the all-to-familiar tickle in the backs of their throats which send us Heart Parents into a small panic.  But most importantly, it’s the month where everyone makes an effort to stop and give thanks.  While I agree that we should be thankful all the time (in fact, I encourage it), I was hoping to share a story with you that’ll help you remember to be thankful this month and beyond.

So if you were to ever meet Nolan, you’ll learn that when he gets into something he really gets into something.  Whether it’s the alphabet (forwards and backwards), numbers (counting to 100 by 10s!) or the musical stylings of Laurie Berkner or They Might Be Giants, he can get kinda obsessed.  Well several months ago he was watching an episode of Paw Patrol, one of his fav shows, and this particular episode was about a family of owls.  Now this sounds like no big deal…but something about the owls struck a chord with Nolan and he went owl crazy!  But oh no no…this was not merely, “Hey Dad, can we watch the owl one again?” No, friends…this became Nolan calling himself an owl and hooting…

Oh sweet baby Jesus, the hooting…

When I came home from work: “Hey Nolan!”…”HOOOOOOT HOOOOOT!”

Going to bed: “Goodnight Nolan.”….”hoot”

And that became hooting along to music in the car, hooting to random people, and hooting to his teachers at school.

I thought that surely this was a phase, but in true Heart Warrior form, he was not lettin’ this one go.  And the hooting started to make me a little crazy, to be honest.  I tried all sorts of things: “Nolan, Daddy is not an owl”…”Nolan, Daddy doesn’t speak owl”….”Nolan, please STOOOOOP”.

Well….he still hoots haha but not as much.  And, as you can imagine, he wanted to be an owl for halloween.  My wife, being awesome like she is, made him some really awesome owl wings and we found him an owl hat and some cute fake glasses that he loved:

OwlNolan

Is that kid cute or what? And it also gave him an opportunity to hoot all he wanted while trick or treating…it was pretty awesome for everyone involved.  But it was something that happened after halloween that helped me be more accepting of the whole owl thing…

It was a Thursday evening and I was coming back from kickboxing class.  It was sparring night so I was feeling beat up (literally) and I had to stop by the grocery store before coming back home. Our house is on an alley and I parked in the back…instead of going through the yard I decided to go down the alley and go through the front door. As I reached the end of the alley, just around the corner of our house, I saw what I thought was a woman with long hair standing on the sidewalk in front of our house.  I stopped and peered around the corner to discover that I actually wasn’t a person…it was a massive, real-life owl sitting on our mailbox! WHOA.  So I crept up a little closer asking myself if I was really seeing an owl or if I took too many punches to the head.  Sure enough it’s big ol’ owl head swiveled around and looked at me and then it flew off to the neighbor’s mailbox.  I don’t know why, but my heart was pounding…I went inside and told my wife to come out quick to see the owl.  Shortly after it flew away into the night.  The crazy thing is our neighborhood doesn’t have any trees that are owl-friendly, so this guy had to come a bit out of his way to hang out on our mailbox.  Crazy!

This sounds corny, but in my heart it almost felt like that owl came by to visit his goofy little friend Nolan…or at least that’s how I liked to view it.  I was really excited about the owl…and then I became ok with Nolan wanting to be his own little funny owl self.  It really made me think of a fantastic quote by Charles Spurgeon:

“We are too prone to engrave our trials in marble and write our blessings in sand.”

In our life as heart parents there is a lot to be upset about, a lot to be frustrated about, a lot to lose hope about. And it’s ok to feel that way…but I do think we all too often choose to take those feelings and put them in a permanent place in our lives while all the good things, the small victories, the smiles, are written in sand, only to be washed away while the harsh feelings remain.

So yeah, the hooting can sometimes get to be too much…but honestly over time he’s doing it a little less and less.  And he makes a really cute owl…and you know what? Owls are kinda awesome. And if he wants to be an owl, Nolan can be an owl.  Know why? Because I need to learn to see the things I’m thankful for…the fact I can hold my little owl’s hand and take him trick or treating. It’s a reminder- as always – of how far he’s come…and a reminder that I need to engrave my blessings in marble…not just my trials.

I hope this brings you a little bit of encouragement this Thanksgiving season!


Also (and this is TOTALLY coincidence), our good friends at the Pediatric Congenital Heart Association have started a new campaign called Be #CHDWise, which features…you guessed it….an OWL named Echo:

SONY DSC

You can get your own Echo the Owl or a dope t-shirt, and read more about the campaign on their website.  Be sure to also follow the hash tag #CHDWise on social media so you can help people “Give a HOOT about CHD!”

(PCHA, you guys are awesome!)

The Best Kind of Handoff

Hey friends! It’s been awhile, I know…we closed out the summer having a lot of fun as a family before the fall rolled around.  This fall season, though, brings with it a very exciting time for Nolan: SCHOOL!

Yes, Nolan is finally getting back into school.  After his Fontan surgery last year, preschool was a struggle for Nolan: his recovery was fairly slow-going and it was tough for him and his teachers too – and I’m absolutely not speaking ill of them at all.  I think they wanted to do the best for Nolan and Nolan was trying his best, too, but we often got calls worried about Nolan looking too tired or too lethargic.  So in order to let him have a restful Fontan recovery, we decided to pull him out of preschool and let him do his thing at home.  Sure enough, things started to turn around for our little man and now he’s our jumping, silly little boy once again.

We decided to apply for an early-childhood preschool program through our local public school system.  Our oldest – Hudson – was in the same program when he was in pre-k and they did a fantastic job of preparing him for what school would be like when he started kindergarten, and we wanted the same experience for Nolan.  Nolan did get accepted to the program and we were super happy, but this was the easy part…the next part would by trying to work with the school to create the best atmosphere for Nolan: there are a few minor physical things they’d need to be aware of (taking time going up stairs, not going too hard on the playground) and medical things too (his g-tube and any oral feeding we’d like to have done at the school).

I have to admit, I was really nervous at first because I didn’t know whether the school system had the knowledge or capability or willingness to work with a kid like Nolan.  He’s not difficult by any stretch, but as you can imagine you always want your heart warrior looked-after in the best way possible.  This is where my wife showed her absolute awesomeness: she reached out to them and started the process going: they asked for all sorts of records and names of his care providers and sent him for several different evaluations, including PT/OT and neuro.  They were very thorough and held a call with their entire team present where they discussed how they evaluated Nolan, what they felt his needs were, and how they would be meeting those needs in school by developing an Individual Education Plan (IEP) for him.  I was so impressed…no lie…it was like they knew Nolan for his whole life and were completely confident that Nolan was going to get everything he needed in the school setting.  He’d get his PT and OT right there in the school and the staff will work on whatever feeding schedule we wanted him on.  WOW.  The next meeting was with the school nurse to go over his needs and care,  The school basically let us drive the ship, if you will…we could decide how long he could go to school, what he does and doesn’t do, etc.  I was really, really impressed.

So while the school day is something like 6 hours long, we decided to start him at 3 hours per day, Tuesday-Friday, just to see how he does.  All the while we were completely hyping up school to Nolan…he was getting really excited because , after all, his brothers go to school so why not him?  One day my wife took him to the school to go meet his teacher and while I couldn’t be there, it went in normal, hilarious Nolan fashion.  First they stopped in the office and apparently Nolan thought this was supposed to be the super-cool class we were talking about.  He had other thoughts.  He looked around and said to my wife, “Well this is disappointing.” LOL This kid!

His teacher was excited to meet him and was prepared to have him in the class, which consisted of about 13 kids, half of which were on some form of IEP like Nolan.  The teacher would also have an assistant in the classroom.  We took Nolan to open house and he was so happy to explore his room and to discover that the class had a coconut tree toy from Chicka Chicka Boom Boom, which is his favorite book of ALL TIME.  ]

So finally we were all ready to go: we had a feeding schedule down for the staff, the hours he’d be attending school, we already saw everyone there was to see….all we needed next was the first day of school…….UNTIL.  

Yes…in true Nolan fashion, he caught a cold the weekend before the start of school.  I was like:

Bruh really

So since colds last a really long time in Nolan’s world, he naturally missed his first days of school…and second…and third.  And then finally, the Friday of his first week of school….he was feeling way better and the big day arrived!

I took the morning off work so that I could be there for this special day (I always want to take all my kids to their first day of school)…and man it was just awesome:

NolanSchool1

Look at that happy little Whiz Kid! He was so happy to be going to “big boy school” and it was just such a special moment to pull up and walk him in with that ginormous backpack:

NolanSchool2

For me it was such a big, moving moment.  I was brought back to that time many years ago, where I’d walk into an ICU room and look at my little baby in the fight for his life.  And I would hope he’d make it….then I’d hope he’d sit up….then I’d hope he would walk…and now…here he was a strong 4 year old walking into pre-k like a big boy.  And I couldn’t be more proud of my superhero.

We walked him to the class and he greeted his teachers with a hug and was immediately enthralled with the goings-on in the room.  There was playing!  And he didn’t want to miss out, so he gave us a kind-of “go away now” wave and then he was off with his teacher to wash hands and go explore.

In this life we live, we’re used to all kinds of handoffs: handing your child over to the surgery team – multiple times – in order to save their lives, sitting awake at 7am as your night nurse hands off to the day nurse and you hope this one’s just as good as all the others.  This handoff, though, was special: handing him off to his teacher is one more accomplishment in his short life that has been marked by all the battles he’s had to fight.  This handoff signified that Nolan is beating the odds!

He’s been doing really well in school: he loves it and comes home singing all sorts of songs he learns there.  He’s also been more of a chatterbox since starting school, which I really like.  And – as always – Nolan is super silly!  We’re looking to lengthen his days there soon and I’m confident he will do an amazing job!


For those of you who are reading this and your kids are getting into school age, I definitely understand how nerve-wracking it can be.  Heck just thinking about kindergarten next year gets me a little nervous and he just started pre-k.  I’m not pretending to have all the answers (I never do), but all I can say is to explore all your options and know that what works best for other heart kids may not work for yours…and that’s ok!  They’re all different in their own awesome ways, so embrace it.  But what I will encourage you to remember is that you are your child’s #1 advocate! When it comes to all things – healthcare, education – you’re it…so do that until you feel completely satisfied.  Ask questions…LOTS of questions.  And then ask them again if you need to.  Get your child’s doctors involved.  Develop a good IEP plan with your child’s school so that you have all possible bases covered.  Finally, be excited for your heart warrior as he or she goes off to school…make it a celebration because it truly is something to celebrate!

The Space Between

If you ever meet Nolan and spend more than 15 minutes with him, you’ll know that there are things that he likes, and then there are things he is obsessed with.  Paw Patrol? Oh he likes Paw Patrol…sometimes a little, sometimes a lot.  ABCs? OH. MY. GOD. It’s his favorite thing on the entire planet earth.  He’ll watch alphabet videos on YouTube for hours, his favorite toys are alphabet-related, etc.  He’s crazy about it.  Then came numbers. Of course, we can’t forget his best friend Monkey.  Now there’s something else to add to it: jumping.  This kid loves to jump and it seems like lately that’s what he likes to do: he jumps on each letter of his alphabet mat (because of course), he jumps whenever I’m holding his hand and we’re walking somewhere, and he even jumps when he’s happy about something. Example: I’ll ask Nolan if he wants to watch Paw Patrol – he’ll squat down low and spring up into a jump saying “YES!” He especially loves jumping on trampolines:

NolanTrampolineLook at that kid catching some air!

I love it, though…he’s super cute when he jumps.  We recently found someone nearby who was giving away a 7-foot trampoline so I picked it up and put it in the back yard and it was like Christmas for Nolan.  He can jump on it all day (of course he goes through his alphabet forwards and backwards and counts to 100 while jumping)…and he won’t get out of it without a fight.

Now Nolan isn’t getting some kind of crazy vertical on his jumps, but watching him jump even a little bit off the ground really struck me as symbolic.  Maybe the space between his feet and the ground is only 6 inches or so, but that space speaks to years of hard work at physical and occupational therapy.

I remember the early days of Nolan struggling to sit up on his own, then trying to crawl.  The crawling was so hard: he’d cry and scream and it was so tough to see him that way, especially with all he’d been through.  But eventually he crawled, then he stood, then he walked.  Since then Nolan has progressed to going up and down stairs and, yes, jumping.  Lots and lots of jumping.

And when he jumps, the space between his feet and the ground brings a smile to my face. I like the space between: it’s a good reminder of a little boy who faced major odds and kicked some butt. I think sometimes we (myself included) as heart parents get caught up in the what might happen part of our journey. Will there be a transplant down the road? More surgeries? Will the liver be ok? And we worry ourselves sick.  Sometimes we need to hang out for awhile in the space between.  Or at least admire the space between and what it represents.

For you, the space between might be one less medication, it might be one less surgery, it might be a clean echo or cath, it might be your baby finally talking or walking…it might be a little boy jumping with all the joy in his heart.  Whatever it is, please take time to appreciate the space between.  I’m not saying don’t worry about anything…we’re always going to worry…but instead look for the little symbols of victory in your heart warrior’s life.  They can be so easy to miss, but so powerful once we see them for what they are. For your own sake and your own mental health, give yourself permission to see and celebrate the little wins.  And by all means, celebrate your warrior for his or her victory over that thing that’s trying to hold them back: tell them you’re proud and let them feel free to smile, or even…jump.

How to be a Great Sidekick (A Father’s Day Post)

Hello out there, fellow Heart Dads! As we roll into Father’s Day weekend I didn’t want to let time fly by without dropping a post specifically for all the amazing Heart Dads out there.  You’re the reason for this blog and the reason it stays going!

We all know by now that our Heart Warriors are amazing: brave, courageous, fearless, strong, tough, etc.  They’re nothing short of superheroes:

IMG_5277

I don’t know about you, but Nolan inspires me on the regular with what he’s been able to accomplish in spite of all the challenges he’s had to face.  He’s a generally happy kid (when he’s getting his way), he’s extremely loving (like, face-crushingly loving), and he’s super smart.  But you know what they say: every good superhero needs a good sidekick.

Think about it…Batman had Robin:

Robin

Sherlock Holmes (ok, ok, he’s more protagonist than superhero but whatevs) had Watson:

Watson

And who can’t forget my fav sidekick Chewbacca?

Chewbacca

So then, who plays sidekick to the Heart Warriors? Guess what: it’s YOU, Heart Dad!  So how can you be an epic-level sidekick? Let’s check it out:

Be Brave

Let’s face it – and you know this by now – the Heart Dad’s job is not for the weak or the cowardly.  Is it hard?  Absolutely…really, really hard.  But you know what else is hard? Being on the receiving end of all those surgeries.  I can’t imagine what it’s like for our kiddos…they go through so much and a lot of times the best thing we can do for them is to just summon every ounce of bravery we have and be strong for them.  Tell them it’s going to be ok, tell them you’re there.  Being brave doesn’t mean a lack of fear, it’s facing the fear and pressing forward.  Yes, being brave is hard…but if your kid can do it, so can you: let them be your inspiration.  Being brave doesn’t mean to have a lack of emotion, rather I think it’s more brave to admit that you’re afraid or to admit when things are difficult, so don’t be ashamed!  The bravery you need is right there inside of you!

Be Strong

The famous sidekicks we all know and love are strong in a variety of ways: some are physically strong, some are smart, etc.  The strength I’m talking about here has nothing to do with how much you can bench press.  Rather, I’m talking about being strong in mind: take care of yourself during this long, difficult journey.  Know when you’re struggling.  Practice mindfulness and don’t be afraid to seek help…please take the time to read my post on mental health to find out how to take care of your mind as a heart parent.  You also need to be strong in spirit. I don’t think this is necessarily a religious thing, though I do recognize that faith and spirituality are very important to many of your and is important to being strong in spirit.  But I would also encourage you to be empathetic: put yourself in others’ shoes, or reach out to help those who are where you have already been.  Practice kindness: it’s so impactful to do something for others when you’re going through a tough time yourself.  Be grateful: when times get tough, write down the things you’re grateful for.  Find something you love to do, whether it’s writing, playing music, cooking, fishing, whatever.  Let that feed your spirit.

And, ok, yes…sometimes you do need to be physically strong too:

2015HeartWalk4

Have a Catchphrase

You know which sidekick we’re talking about here, right?  Robin, the boy wonder. Dude was totally known for his catchphrases back in the day: “Holy ______, Batman!” Can you believe there’s an entire wikipedia article entitled “List of Exclamations by Robin”?!  Hilarious stuff, read it here on your own.  My favorite? “Holy unrefillable prescriptions, Batman!” Ah…so relate-able.

But no, I’m not saying you actually have to have a catchphrase (though I don’t discourage it). What I’m saying here is that to be a good sidekick for your superhero, you’ll need to speak up whenever it’s necessary.  Got questions when you’re in the hospital? Ask. Something doesn’t feel/look/seem right? Say something.  Think your kid’s doctor isn’t cutting it? Ask for another one. The voice of a Heart Parent is a powerful one, because while the clinicians are the expert in care, you’re the expert in your own child.  You do have a say.

Do you want to see CHDs eradicated in the future? Speak up – be an advocate?  Don’t know how? Visit the Pediatric Congenital Heart Association to learn how: while you can visit DC and speak with your representatives, calls and emails/letters are just as powerful.  If you’re one of my readers and you live in the U.S., you know that healthcare coverage is a massive issue right now, and no matter what you believe politically, you know that you have a critically-ill child that needs good coverage, not coverage that will be dropped due to a pre-existing condition.  If you want to fight for that, then speak up!  Use your powerful, Heart Dad voice to support your Heart Warrior!

Always Be There

A superhero isn’t gonna drag along a sidekick if they’re a burden.  They keep them on the team because they’re dependable, strong, and always willing to help.  That’s exactly what you need to be.  Yes, the journey is long and tough and it’s filled with bouts of confusion and anger and frustration, but at the end of the day your hero cannot fight this fight alone.  He or she needs their sidekick…they need you.  And they don’t just need you at the hospital or in the doctor’s office…they need you at home.  Get on the floor and play, eat dinner together, give lots and lots of hugs and positive affirmation.  They need you at school: read to/with them, be invested in their education, go to the freakin’ school plays…ALL OF THEM.  They need you out in the world: take them to see the world, do stuff with them, smile and run and laugh, make memories!

At the end of the day, when your Heart Warrior grows up, you’re not going to want them to look at you and say, “You know what Dad, you were a great {insert job title here}”….what I want to hear is, “You know what Dad…you’re always there for me.  You’re a great sidekick.”

Sidekick


I want to wish all the Heart Dads out there a very happy Father’s Day!  I hope you have a really special day with your families, with lots of hugs and love.

Team Nolan T-Shirt Fundraiser

Hey Friends,

This post is totally a shameless plug, but I guess it would be crazy of me not to put it on here.  A few years ago we did a fundraiser where we sold Team Nolan t-shirts: they were great quality and everyone loved them. From time to time people have asked when we would consider doing it again, and we felt now is a good time!

This is what it will look like:

TeamNolanShirt2017

The fundraiser will end on June 20th and all orders will print and ship once the sale ends.  Note: we do need to sell a minimum of 11 shirts in order for the company to print and ship them, so every bit of support helps!

We’ll be using the funds from these shirts to help with the little things that always seem to come up: syringes for medications, supplies for school, clothes/shoes, etc.  They don’t seem like much but as you know, sometimes those things pile up.

Here’s the link for where you can get your shirt: Team Nolan Shirt Fundraiser

As always, we are so thankful for your love and support!  You guys are awesome!

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.

MentalHealth

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!