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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:

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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:

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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!)

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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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When Being Thankful Looks Different

I know this far I’ve been chronicling our journey with Nolan, and I really thank you all for taking the time to read this blog.  I hope that it’s given some of you heart dads an insight into the roller coaster ride that is being a heart parent.  Hopefully for those who have gone through it, this blog shows that you’re not alone. 

I wanted to take a small break in telling Nolan’s story to talk about being thankful, since tomorrow is Thanksgiving.  Yes, it’s going to be a day where we eat ourselves into a coma, watch football, maybe put up a Christmas tree, maybe line up for Black Friday, etc.  But as I look back on the last year with Nolan, I really have a lot to be thankful for: and when you really think about it, sometimes the thanks can seem a bit unusual.

While finding out early about Nolan’s condition was bordering on soul-crushing, I’m thankful it happened when it did.  In some way I was able to educate myself and try my best to prepare (even though there’s no complete way to be prepared).  There are a lot of babies that are born with congenital heart defects who aren’t so lucky.  They’re born, look normal – just like Nolan – except they go home within a couple days.  And that’s where the trouble starts and before you know it you end up back in the hospital…that is, if you’re so lucky.  Many hospitals aren’t equipped to deal with CHD babies, much less recognize them.  Heck, the hospital where we originally planned to have the twins doesn’t even have a NICU!  So yes, I’m thankful we found out early: thank God for a ultrasound tech with good eyes and a cardiology team that is AMAZING. 

I’m thankful for Levine Children’s Hospital: for the kindness showed to us by all the staff.  For the bright colors and cheerful decor.  Trust me, when you spend 2 months daily in a place, you notice that kinda stuff.  I’m thankful for their volunteers, the doctors, the nurses, the CNAs.  I’m thankful for the window washers who dressed up as superheros and rappelled down the building the brighten the kids’ day.  A Children’s Hospital is definitely not a place you want to be by choice.  We had to be there, and I honestly believe LCH is one of the best around. 

I’m thankful for my wife, who often juggled so many schedules, complete with multiple pickups and drop-offs, just so we can go see Nolan at the hospital.  She continues to be a rock and an amazing mom and wife.  When I told people about this blog I heard a few stories about dads who abandoned their families once they found out about a CHD diagnosis.  Those guys are cowards and they’re weak.  Nothing less.  I cannot imagine being a single parent going through this, so I’m grateful that I get to take this journey with my wife by my side.

Now for the crazy part.  In some weird way I’m thankful for the fear, the rough emotions, the waiting, the meds, the sleepless nights, the nightmares, the anguish, the worry, the anger, the impatience, the doubt, the exhaustion, the crying….because it reminds me that there’s so much more to life than me and my comfort.  I have a job to do and that’s to be a great husband and an awesome dad.  Yes, I’m tired…and yes, sometimes I whine about it…but it’s all about perspective.  Nolan is surviving and thriving and I thank God every day for it!  There are kids and families that are worse off, that are going through tremendous struggles: they don’t know where their next meal will come from or where to call home.  Perspective.  It’s a powerful thing, and I’m thankful for it.  I tell everyone that ever since Nolan was born, my life changed.  I have to speak out for Nolan and other HLHS babies because that’s the life I’ve inherited and the life my son will live.  And you have to learn to be thankful for every smile, every laugh, every breath, and every waking morning…because it’s the hard stuff that leads you to the great stuff.

Happy Thanksgiving Everyone!