Category Archives: thankfulness

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.


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:




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:


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:


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 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.

Appreciating the Sacrifice

Lately the weather here in North Carolina has been – for lack of a better word – possessed.  One weekend it’s snowing and the van is encased in ice, and then a few days later it’s 70 degrees.  Go figure.  I’m not complaining, though, I appreciate some really mild weather this time of year; after all, I grew up in Connecticut, where the snow can get waist-deep, so this is much appreciated.  Anyways, we were recently taking advantage of a fairly nice evening outside with our fire pit.  It was a little cool outside, so we had some light jackets on and made some hot cocoa and just hung out before putting the kids to bed.  Grant loves the fire pit, referring to it as the “fire camp,” so he was excited to hear we were starting the fire.  Of course, our kids’ attention span lasted a whole 42.7 seconds and they were off playing with toys in the back yard, which is just fine.  At one point, Nolan was playing with a metal Tonka dump truck and was piling all sorts of stuff into the back: a football, a small skateboard, a bowling pin, a bucket.  And it was cute seeing him lost in the world of play.  My wife commented how “it’s nice to see him just doing little boy stuff.” And it’s true: you’ve been there too – where you look at your Heart Kid doing even the most “normal” things and you just appreciate it, because they’ve been through so very much.

As a dad, I live for all the moments and all the memories with my kids. Walking, first words, first days of school, piling on top of their poor old man:


School performances, Donuts with Dads, parent teacher conferences, etc.  I live for it and I will do everything possible not to miss those moments.  I’m so thankful for that chance.

Lately I’ve been really thinking about those types of moments and how fortunate I am to experience them.  My job is really flexible in letting me attend school stuff or appointments and it means a lot to me and the kids, too.  Even time at the park is a joy:

flswingsBut as a Heart Dad I really want to acknowledge that there’s a tremendous amount of sacrifice that goes into the opportunity to make those moments happen.

Every single day – rain or shine, snow or sleet – there are a group of people who leave their homes while it’s still dark, or leave home while most people are just getting home from work, and they park their cars, ride an elevator, badge in on a time clock, wash their hands, and get to work. Some of them walk into the room where I’ve sat, sleepless and helpless with my son on a vent, and say, “Hi, I’ll be your son’s nurse today.” Some of them load up a cart of cleaning supplies and work hard to keep things clean and avoid the spread of germs. Some lug a ladder down the hall to replace a burned-out light bulb so a nurse can see better when he or she is charting.  Some fire up the grill in the cafeteria to sling burgers and chicken sandwiches for hungry families and staff.  Some scrub in for a grueling surgery in an effort to safe a kid’s life.  Some land a helicopter on the roof, carrying a life that needs desperate help from the best team available.  These are the hospital workers…and they sacrifice so much for us.

I really want to use this post to acknowledge all the hospital workers – clinicians and non-clinicians – who give so much so that we can enjoy so much.  You have lives, you have families, and you have memories you want to make, too.  I just want you all to know that it’s not lost on me that sometimes you sacrifice a school performance, a bedtime story, a goodnight kiss, a good push on the swings…all for my son, and to give us the chance to enjoy him.  I know you put up with a lot: the demands, the long hours, the demands, the hours without peeing, the hours without eating, the sad stories.  I see you, and I thank you.  It’s your job, but I know your job comes with a steep price: you could do anything else in this world but you choose what you do, and I could never enjoy the memories I have without you.

So hospital workers – wherever you are, whatever you do – just know that you are loved, you are appreciated, and your sacrifices truly do pave the way for magical moments in a Heart Family’s life.  Your work is not in vain, your work is priceless.

The Intersection


Every hospital has The Intersection.  Every heart parent has stood at The Intersection.  This is the place where it all becomes real, where it’s go-time, where you whisper that last fervent prayer before letting go.  You woke up early to come to the hospital for a surgery date you’ve been dreading, you’re ushered up to a pre-op room where people come to get you to sign here, initial here.  Maybe you review some last-minute information and meet the surgery and anesthesia team.  But eventually the moment comes where you enter The Intersection.  At our hospital, you step out of the room and into the hall where it forms a T: this is the place where a group of people (and your child) turn right while you have to let go and turn left towards the waiting area.

The Intersection is a heavy, heavy place.  It’s the place where fear and doubt seem the strongest and where you muster every last bit of hope left in your body and try to project it on the people turning right.  For a brief moment all those thoughts cross through your mind: did I pray hard enough, have I been good enough, have I been a good parent, did I give enough hugs, was this the right choice, are you sure it couldn’t just be me instead of him?  It’s such a tough place because to turn right is handing your child over to certain fear and pain, which is necessary to live.  To turn right is to be filled with fear and tears.

I don’t write this to merely drum up our old fears, but rather I spell them out for a different reason: to thank a group that I think often goes overlooked.  A couple months ago I was asked to share Nolan’s story with our surgical services team at work.  This was a massive group of nearly 200 people all in their green scrubs and funny giant shower cap thingies.  They have their staff meetings at like 6am, which is bonkers, but I digress.  As I walked to the auditorium, I was thinking in my mind what to say and this idea of The Intersection hit me like a ton of bricks and I just had to share it.  So I shared Nolan’s story and at the very end I said to them, and I’m paraphrasing here:

“There’s a place I call The Intersection.  Where Nolan goes one way and I can’t follow, so I have to go the other.  This is a really tough place to be because I know where he goes there is pain, and where I go there are tears. But as I stand here in front of you I want to thank you, because when he makes that right turn I’m essentially handing him over to you…the people I don’t even see…to save his life.  And without you, there is no Nolan, so I thank you.”

I gotta tell you, it took everything in my power for me not to lose it there.  Not to mention it was 6am so I was already a wreck as it was.  But I meant it.  You see, while our amazing surgeons make the news and magazine covers and whatnot, there’s a whole team of people behind those operating room doors who we will never see or meet.  They keep things clean, keep things stocked, keep things moving smoothly and Lord knows what else they do.  They are so important to the success of these surgeries and I’m not sure they get the recognition they deserve.

So while I know it’s painful to think about The Intersection, remember that it’s Thanksgiving week: let’s channel those thoughts into some genuine thanks for the surgical services teams who have played such an under-the-radar role in the success of our kids.  I encourage you to share this post on social media, maybe write a card or note to the surgical services team at your local children’s hospital.  Whatever it is, just make sure you let them know how much you appreciate that they’re there on the other side of The Intersection.

If you’re reading this and you’re part of the team who wears the green scrubs and the funny shower caps: just know that our family thanks you for your hard work.  Let this recognition encourage you and your teammates to know you are loved and appreciated for your work…keep it up!

Great is your Gratefulness

So we’ve recently wrapped up the time of year where thankfulness is really something that’s front-and-center in most people’s lives.  There’s Thanksgiving, there’s Christmas, there’s the celebration of a new year…all great opportunities to reflect, and – of course – I encourage that.  Lately, though, I’ve been thinking a lot on the subject of being thankful…actually I’ve been thinking more about being grateful.  “Bruh, you cray-cray, they’re the same thing!” you might be thinking…but hear me out here.  To me, there’s a difference.

You see, to be thankful can often mean there’s someone to give that thanks and someone to receive it.  You read this crazy madness I call a blog, and I say thanks.  And I mean it.  Being grateful, to me, is just a little bit different…it’s deeper…it’s almost like a state of being.  You choose to BE grateful…and even if there’s no one around to admit it to, you can still be grateful and it can still be amazing.  And being in a state of gratitude encourages you to give thanks.  See?  They’re connected.

What does gratitude look like for me?  It looks like those things that have a deeply-rooted connection within me, and are often influenced by my personal experiences.  Take breathing, for example: we breathe without once thinking about it.  But I look at pictures of Nolan when he was on a ventilator and it stirs up this feeling deep within me: I need to understand the intricacy of this thing we call breathing and realize that I take it for granted.  And when I put it in those terms I can be overwhelmed by feeling that I’m SO very fortunate to breathe without machinery.  Or think about the very reason you and I are on this blog: the human heart.  Before you became a heart parent, did you ever stop once to think about the function of a human heart?  Some of you, maybe, but for most of us as long as we wake up the next day it’s all good, cuz the ol’ ticker is working just fine.  Now?  You are all about that heart, aren’t you?  If you’re like me, you think about your own much more than you used to.  But man, the heart is an amaaaaazing machine, yet there it lives in our chest without a second thought from us.  My heart works pretty well so far…and that’s an awesome thing because we’ve seen how bad it gets when it doesn’t.

And the gratitude list goes on and on: a place to live, freedom, clean drinking water, time with my family, etc.  I think true gratitude lives in the deep necessities of life.  So why on earth am I talking about gratitude?  Because existing in a state of gratitude is really important!

There is a Buddhist priest who is part of the spiritual care team at work and while I don’t run into him very often, I do enjoy chatting with him because 99% of the time our conversation – not prompted – always steers towards gratitude.  I remember once running into him and he said, “Tell me one thing you’re grateful for…quickly.”  I can’t remember what I told him, but he asked me if I kept a gratitude journal…I told him I didn’t, and he proceeded to tell me that keeping one is one of the healthiest things I could do for my body and mind.  Fascinating.  So I did some digging…

Forbes put out an article in 2014 about scientifically proven benefits of gratitude (read it here).  I encourage you to read the article yourself, but I did want to touch on some of the points that were meaningful to me and expand on them a little bit:

Gratitude Improves Psychological Health

Here’s a good one for all the heart parents out there.  Being grateful reduces depression and increases happiness.  Personally I think a lot of this stems from the perspective given from being grateful.  Once you realize what it takes for your heart to beat or your lungs to breathe, you realize that others don’t have it so easy…and therefore while your current situation might be challenging, you could potentially be far worse off.

Gratitude = More Empathy

Empathy is one lesson I think everyone living on this planet needs to learn.  Period.  You may not live through what someone else has been through, but that doesn’t mean you can’t put yourself in their shoes.  And when you can do that, magic happens…and that’s how we make the world a better place.  Now heart parents, we’ve been through some real nasty stuff, so there’s a tendency to have this “we’ve seen it, so we get it” attitude, but sometimes we can fall into more of a “we got through it, so you just get through it” attitude.  And that, friends, is not empathy.  I think we can all benefit from being more empathetic, and we grow that muscle through our gratitude.

Gratitude Increases Mental Strength

This is so crucial for us, isn’t it?  We’ve all been at the end of our rope so many times, but having mental strength has kept us from totally going bonkers.  But let’s be honest, guys, we could always use some more mental strength because we don’t know what CHDs – and life itself – will throw at us on any given day.  Existing in gratitude will make our minds stronger.


So guys I want to encourage everyone – myself included – to live more in a state of gratitude, because it’s a very powerful state of being.  Yes, it’s good to be thankful too…but never forget to be grateful.  Maybe you’ll keep a gratitude journal…honestly I keep telling myself to do that, but honestly the only practices I seem to do a good job of keeping are drinking coffee and looking up memes.  But maybe this will be my year, who knows?  The best thing about gratitude?  It has all those benefits and costs you nothing.  Now that’s the kinda infomercial I like.  Stay grateful, friends.


Happy New Year!

Wow, can you believe it’s already 2016?  Where the heck did 2015 go?  Anyways, I wanted to take a moment and wish all my friends out there a Happy New Year!  I hope 2016 brings you lots of joy, hope, and fun!

So what’s ahead for us?  Well I’ll obviously be posting more regularly on here as 2016 gets into full swing.  This is a big year for us, though, because we will be starting preparations for Nolan’s third (and hopefully final) surgery, the Fontan procedure.  To be honest, I’d be lying if I didn’t say I was nervous about it…but if there’s one thing Nolan has shown, it’s that he can persevere with the best of ’em.  I’m confident his medical team is going to do an amazing job.

But hey, I’m getting ahead of myself…he’ll have an echo and a cath first, so all that will happen over the next several months.  In the meantime, because Nolan is Nolan, he is currently struggling with a bit of the sickness: he’s got an ear infection (looks like his ear tubes finally fell out) and has been having a rough go of it for the last several days.  He’s taking his antibiotics, so hopefully he’ll be back to his regular self in no time.

As we work on getting him better, we plan to jump back into the new year full steam ahead with lots of laughs, love, and fun.

Have a great new year, everyone…and enjoy this, which I found hilarious:

Resolution Turns 2!

So I’m like 2 weeks late on this (sorry!), but it’s occurred to me that I started this blog in October of 2013.  WOW!  I absolutely cannot believe it’s been going this long…seriously.  When I first had the idea for this blog, I really didn’t think anyone would read it and that most people would think it was childish at best.

Well…it’s definitely childish, but it’s a labor of love for me and my readers have been absolutely awesome!  I’ve had nearly 20,000 unique visitors to this blog and that absolutely blows my mind…it really does.  I want to thank everyone who has taken the time to read this blog, to share this blog, and to comment on the articles.  It means a lot to me and I hope that I’ve been able to help someone along the way.  Here’s to many more years of fun and support!

And because the blog is officially a toddler, here’s a good old-fashioned tantrum:


2014: A Year in Review

Can you believe 2014 is aaaaalmost over?  Goodness, it seemed to go by so quickly.  I have to say, this was one heck of a year for Nolan: he achieved so much and made so many great strides.  As a way of wrapping up Nolan’s year, I decided to make a little video capturing some of the highlights and fun moments:

A big thanks goes out to everyone who has read this blog, supported Nolan, kept us in your prayers & good thoughts…you played a big part in making 2014 an amazing year!  I think 2015 is going to bring even more exciting things!  On behalf of our family, have a very happy New Year!

Happy Heart Day, Nolan!

On this day two years ago, Nolan went in for his first major surgery – the Norwood Procedure.  I remember the absolute terror I was in the day before and every hour the day of as we received updates in the surgical waiting room.  I remember seeing my little boy hooked up to all those machines and the nurses moving constantly to check him and give him meds.  It was surreal.  Looking back on it, it’s still pretty surreal.  His recovery was long and hard, with lots of ups and downs…and he fought like a champ.

He continues to fight like a champ, as you well know.  I mean look at him now:


There’s a whole lotta fight in that boy…he’s my hero!

I’m so glad to be able to share Nolan’s story on this blog…I’m a big believer that sharing our stories not only helps others but helps us continually heal.   I encourage you, Heart Parents, to share your story however you can.  Some of you will blog, some of you are on Facebook, some of you are part of awareness groups.  Some of you are uncomfortable sharing, and that’s ok…maybe get a notebook and just write it down.  You don’t have to share it with someone but yourself, and it will feel better to get it down on paper.

What a journey this has been and will continue to be…I can’t wait to continue on this adventure with you, big guy.  Happy heart day!!!