Monthly Archives: November 2014

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!

Thankfulness pt. 1: Levine Children’s Hospital

We’re coming up on Thanksgiving and I like to use this time to reflect on the things I’m thankful for.  I’m trying really hard not to re-write the last Thanksgiving post I did.  So what I’ve decided to do is break up the things I’m thankful for into a series of posts (as of this writing, I haven’t decided how many).

Today I want to express for an important place in our lives: Levine Children’s Hospital.

LCH

I often joke with people that LCH is our home away from home, at least it was during Nolan’s first year of life, between 2 surgeries and the occasional admission.  Lately I’ve been reflecting a lot on LCH and how much it’s meant to us.  If you ever go there, it’s actually a pretty cool place: it’s bright, cheery and colorful with chairs in the lobby that look like bacon and lots of fun art throughout the building.  The staff is friendly and there’s even a radio station in the lobby where lots of well-known recording artists come to visit.  It’s a cool place, even though no one really wants to be there as a patient/family member.

We had so many staff members there who treated us and Nolan was so much dignity and kindness.  I will never forget nurses going above and beyond to ensure Nolan was so well cared-for: not just medically, but as a human being.  They would give us meal tickets daily to make sure we could get something to eat, they would stamp our parking passes so we didn’t have to pay for parking, the doctors would include us in daily rounds.  They answered my phone calls and my questions, whenever they were asked.  They held conversations when appropriate, and turned down the lights and let me sit quietly with Nolan on those evenings when I was just plain exhausted.  It is a special place and I can’t speak more highly about Levine Children’s Hospital.

I’m lucky now that I can work next door to LCH, so I’m in an out of there whenever I can, and I help them with whichever program I can.  I do that because I’m proud to be affiliated in any capacity with Levine Children’s Hospital, but I do it moreso because of all they did for us and for Nolan.  It’s my way to give back.  In fact, this Halloween I had the opportunity to participate in a Halloween Carnival at LCH where the patients and their families can come trick or treat right there in the hospital.  I was so on that, because I know what it’s like to be in the hospital during holidays (Christmas and New Years, in our case) and I know how surreal it makes things.  And I really appreciate how hard the LCH staff works to bring some normalcy to kids’ lives.  But I needed a costume because, I mean come on, it’s a kids hospital…you HAVE to dress up.  Then it occurred to me: I am going to dress up as Dr. Peeler, Nolan’s heart surgeon!  I got a picture, made a mask, got some surgical scrubs, and even had some help from a Nurse Practitioner in borrowing Dr. Peeler’s actual lab coat:

Peeler Costume

Yeah it was funny and a lot of the LCH staff were really tripped out by the Peeler look-alike.  It was fun, and I participated in the event for the kids and their families.  The costume was a silly way for me to thank Dr. Peeler for everything he does for heart kids and our Nolan in particular.  We are so dependent on his skills.  Again, thank you Dr. Peeler!

We’ve been really blessed to have seen Nolan making some really wonderful strides during the 2nd half of this year: walking, eating more by mouth, being more vocal, even starting preschool one day a week.  These are some major steps he’s taken to becoming all Nolan can be. When I lay Nolan down to sleep at night, I always try to take a moment to just watch him and take a moment to admire how far he’s come.  I just want to use this post to say thank you to the staff of Levine Children’s Hospital…keep on being the best.  Because every night I get to lay Nolan down for bed means one more day I got to spend with my wonderful son.  And we get that time with Nolan because of your work.  I know sometimes you get really tired and stressed and it can be emotionally taxing…but from the bottom of my heart I appreciate your work to give my son his life and to give us an opportunity to see him thrive.  That means so much to me and if I could I would walk the whole building to personally thank everyone who has worked with us for their smiles, empathy, professionalism…heck, even for the chocolate milk in the nourishment rooms (SO good).  Every moment we make with our son is because of the hard work the LCH staff put into him.

So this Thanksgiving…each and every day…whenever I lay this sweet boy to bed, I want to thank you…

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2014 Heart Walk & Changes for AHA?

This post is WAY after the fact, but I still wanted to write about it anyway.  In September we got to participate in the American Heart Association Heart Walk.  It was the third one I’ve participated in since we found out Nolan would be born with HLHS and the event holds a special place in my heart.  Nolan was definitely ready to walk:

HeartWalk2

 

And big brother Hudson was supporting his little guy:

HeartWalk3

Before the start of the walk we were approached by a woman (I will never remember her name) who asked us about Nolan and said her daughter was born with a single ventricle and was now living in her 20’s.  That was so refreshing and uplifting to hear: I love every glimmer of hope we can get that there is a successful life ahead for our CHD babies.

Then the walk started, and the start of the Heart Walk is – for me – so very emotional.  They start the countdown from 10 and it just brings me back to that time where it was just me, walking for my unborn son, facing a whole lot of unknown ahead.  Now we get to walk with Nolan and it’s all kinds of awesome.  My mom joined us for this walk and I was really proud of Hudson, who walked the entire route.

HeartWalk1

This time, though, the walk was just a little different.  I remember 2 years ago there were tons of volunteers along the route: they would cheer us on with pom poms and all that.  There were several water stations.  This year there was one water station and the few volunteers along the route just kinda stood there staring at us.  It was weird and ended up giving the walk a little bit of a “meh” atmosphere.

Most importantly, though, I feel there’s something I need to admit: this year I didn’t do any fundraising for the Heart Walk.  Didn’t even attempt.  I know that sounds pretty messed up, but here’s my reasoning: while the American Heart Association uses CHD all throughout their website and advertising, they only use 1% of the funds they raise towards CHD causes.  ONE…PERCENT.  That’s horrible.   I will continue to do the Heart Walk ever year, if possible, because it will always hold a sentimental value for me…but until this paltry support of CHDs by the AHA continues, I will not fundraise for them.  American Heart Association…you need to do better.

There is, though, a glimmer of hope in this regard.  On October 31st, the Children’s Heart Foundation announced a partnership with the American Heart Association to further CHD research.  According to the press release (http://childrensheartfoundation.org/sites/default/files/AHA%20CHF%20Partnership%20Release.pdf) they will hope to provide $2.5 million in grants over the next 2 years to support CHD research.  Good.

It’s put up or shut up time for you, American Heart Association, and I really appreciate this start.  Keep it up and put your might behind our heart kids…so they can grow up to be thriving adults and one day we will live in a world with no CHDs.

The Club No One Wants To Join

There is a really amazing writer out there named Jon Acuff.  You may have heard of him: he wrote a blog called Stuff Christians Like (still writes it) and it eventually became a book which led to several other great books.  I love reading Jon’s stuff because it’s always hilarious and he’s a guy to admire because he’s smart and driven and loves his family to death.  Recently while out at speaking engagements, Jon has been holding free mini meet-ups in those cities.  I would see pictures of them popping up on facebook and I was all like “Oh snap, I would love it if he would come to Charlotte.”   Then LO AND BEHOLD!  He announced he was coming to Charlotte….well, not Charlotte exactly, but rather to Gastonia.  Gastonia is a city outside of Charlotte and a good 45 minutes from my house…on a good day.  And, to top it all off it started at 7:15…AM.  While I did sign up for it, it started the battle of “YOLO Chris” vs “Lazy Chris”…but still I dragged my butt outta bed at 5am and drove out to the church in Gastonia.  First of all, I was TOTALLY geeked to meet Jon, especially since I’ve been reading his blog since like 2007:

Acuff

But Jon also had some really great things to say.  You see, Jon is all about encouraging people who are “dreamers”…encouraging them to hustle their way to the life/career they were meant to have.  And this was what the meetup was about.  He spoke about how doing this takes bravery…but where I’m really headed here surrounds his discussion of transitions in life.  He drew this like 4 quadrants: Voluntary-Negative, Involuntary-Negative, Voluntary-Positive, and Involuntary-Positive.  Each of these transitions requires a “career investment” in order to navigate through it successfully.  I had the opportunity to speak about this blog and why I write it, and Jon mentioned how it was a clear example of the Involuntary-Negative transition.

As heart parents you know that none of us chose to have this happen…none of us wanted this to happen…and none of the early stages of the CHD journey are overwhelmingly positive or happy.  When these transitions happen, Jon says, you need relationships to make it through.  Man, how true is that?!  It’s the reason I started this blog: to help people and to connect with people, because those relationships with fellow heart parents is what offers the most support, in my opinion.  In fact, it’s often the first bit of advice I give to people who find out they’re having a child with a CHD: connect with other heart families for that support.  It’s invaluable.

Being a heart parent is like being part of a club that you don’t ever want to join.  But once you’re in it, you meet some really amazing people and I’m forever grateful for them.  To all the people who read this blog and offer support and comments, I really thank you guys!  It means the world to me that you come and visit my wacky ramblings and find some sort of help.  As long as you keep reading, I’ll keep writing: because there will always be a heart dad here who has got your back.  Thanks to all our local heart families, who work together to keep one another grounded so we don’t lose our ever loving minds.  We celebrate together, we grieve together, and I can’t imagine sharing this journey with a better group of people.  And to Camp Luck: thank you for keeping us connected.

Relationships are how we get through this crazy journey.  So I encourage you to please continue to reach out to other heart parents…and me as well: you know where to find me!  Please remember to share this blog if you feel like it can help someone.