Category Archives: thankfulness

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.

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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:

pileup

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

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.

gratitude

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

HLHSdad.com 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:

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:

NolanHeartDay2014

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!!!

Thankfulness pt. 3: My Heart Warrior

This is part 3 in a series about thankfulness.

My Dear Nolan,

This Thanksgiving, and as we approach your 2nd birthday, I can’t help but reflect constantly on how far you’ve come.  This year you’ve crawled for the first time, you walked for the first time, climbed for the first time, ate multiple feeds by mouth for the first time.  You are an amazing little boy!  I remember the fear that gripped me when we found out about your special heart and the even stronger fear when we left you in pre-op for your first heart surgery.  I worry about the struggle to get you off your g-tube, it saddens me that you can’t eat the snacks the other kids eat at church daycare, and it used to pain me to hear your screams and cries when we’d practice physical therapy just to get you walking.  I wish your life could be toys and games, not appointments and therapies.

I wish I could understand what it feels like to have a single ventricle…does it feel funny/weird?  Is it exhausting?  There have been many times that I thought – if I could – I’d give my right arm, I’d walk backwards everyday, I’d give up every Yankee game in existence, heck I’d even eat sauerkraut daily if it meant you could have a whole heart.

But you know what?  You wake up daily with a smile and joy that dwarfs those of us with complete hearts.  You survived two serious heart surgeries and everything involved with them.  You went from a kid who couldn’t even sit up to a little ball of energy who walks around the house and throws tupperware around.  Every day you wake up you beat the odds and show me what toughness and bravery really mean.  You teach me to look on the bright side, to find the important things…and to be joyful.  You’ve taught me not to say “Woe is me, this is too hard,” and instead say, “Look how far you’ve come!”  You have one heart surgery left, and I have no idea how I’m supposed to explain it to you, how I’m supposed to explain that it will hurt but will help you live a great life.  But you know what?  We’re gonna get there and get through it together…as a family.  There will be lots of questions that I may not be able to answer, but I promise I will work hard to find those answers.  You’re not at a disadvantage, rather you’ve been given the chance to be extraordinary!  I want you to grow up and just love people, and care just as much for those who are going through tough times.  Show them how you’ve kicked CHD’s butt and be an example for never giving up.

So now, instead, I think I’d give my right arm, I’d walk backwards everyday, I’d give up every Yankee game in existence, heck I’d even eat sauerkraut daily if it means you’re going to have the best life possible, in spite of your special heart.  I love being your dad…it’s an honor to be your dad.  It’s hard work, but your smiles, your laughs, and your gibberish make it all worth it!  Your mom and I will continue to fight to get you the best life, the best care, and all the love a little boy – CHD or not – could possibly get.

So this Thanksgiving season, I want to thank you – Nolan – for teaching your old man how to be brave, for teaching me how to fight for you, for teaching me never ever to give up.  Thank you for giving me real perspective on life.  Thank you for the opportunity to meet and help families just like ours.  Thank you for being – pound for pound – the toughest human being on earth.  I can’t wait to see the places you’re going to go!

Love,

Dad

UggaMugga

Ugga mugga!

Thankfulness pt. 2: My Family

This is the second entry in a series about thankfulness.

What would I do without my family?  We’re like a basketball team…but with only one tall player.  And I love them all.  Today’s post is a big thank-you to the rest of my family:

Hudson

CoolDude

Oh this kid.  My oldest and most hilarious.  I can’t believe how big he’s getting!  He’s figuring out this whole big brother thing, but he’s showing glimpses of absolutely adoring his brothers, even though he gets annoyed when they steal his stuff.  Such will be our life for MANY years to come.  I really enjoy watching him grow and all the things he’s learning.  And I just believe how hilarious he is, whether it’s his insanely imaginative imagination or him replacing “It’s Time to Dance” from Yo Gabba Gabba with “It’s Time to Fart.”  Hudson is also a wealth of safety advice like “Don’t stand next to a volcano.”  He’s so loving and smart and he taught me how to be a dad, and I just love him so much.

Grant

GrantPantsHead

Nolan’s twin brother and technically the youngest of the 3 boys (by 2 minutes!).  He is a funny little ball of craziness, who loves to dance and wear other people’s shoes around the house.  Since he’s been in preschool this year we’ve discovered that he really likes art…loves to paint and color…so maybe we have a little artist in the house?  I love to hear his “Hi Dada” when I get home from work and I laugh when he wants to roughhouse in the living room.  His laugh is just the best.  The one thing I absolutely love about Grant is that while a lot of the time he wants to steal Nolan’s toys or be a brute, he will always want to share with his twin brother.  If we give grant a cookie, for example, he will immediately go take it to Nolan then come back for one for himself.  If only the world were so giving.

My Wife

Married

This is the real MVP of our family and the love of my life.  She works hard wrangling three kids during the day, doing school pick up and drop-off, taking Nolan to appointments and therapies, and then works nights 4 nights a week.  She is the one who gets Nolan through all his therapies and encourages to do better, she’s the one who fights for Nolan to eat by mouth, she’s the one who keeps our household running smoothly.  Without her drive, Nolan would not have accomplished have the things he’s done so far in his life.  Plus she puts up with a household of crazy males!  I can’t imagine living this life without my amazing teammate, and I love every moment with her.  Thanks for being awesome, babe!

Man, I love my family…my little traveling circus…my band of crazies…I just love them all.  I love that they make me laugh and smile and keep me sane.  I’m so thankful for every one of them and for the joy they bring me every day!