Monthly Archives: June 2015
This is the 4th entry in my series on Fatherhood this month. Enjoy!
Hey everyone! Father’s Day is almost here! I’ve had the great fortune of having two really wonderful groups reach out to me regarding guest blogging on their sites and I’ve really enjoyed the experience so far. I’ve featured both of these sites before and both have published a post of mine in time for Father’s Day and I wanted to share them with you:
The Mighty reached out to me again and wanted to publish one of my previously-written blogs from this site. Of course I agreed, hoping it would be able to provide some help to people. I encourage you to take the time and read it again and learn about some self-care techniques…and then share, of course! The article is titled “To the Stressed Dad Worrying About His Child’s Health”:
Pediatric Congenital Heart Association
I’ve had a blast working with PCHA as a blogger and an advocate for CHD research. They work so hard to push for more research and a better future for our kids and I really encourage you to get involved. Recently they published a guest blog post of mine that has shown to be extremely popular so far and I wanted to share it with you. It’s titled “5 Things You Shouldn’t Say to a Heart Dad”:
Have a great Father’s Day!
This is the third entry in my series on Fatherhood this month. Enjoy!
I’ve had the great honor of having a post I wrote featured on the website The Mighty (themighty.com). For those of you who are unfamiliar with the site, it’s a really fantastic website where powerful stories are shared about/by individuals or families facing disabilities, disorders, or chronic health conditions. It’s updated very regularly and I can’t say enough about how amazing these stories are. There are even several stories on there about CHDs, even before this knucklehead showed up.
To stick with the theme of Fatherhood this month, I wrote about how Nolan’s battle with HLHS has made me a better man. I would be really thankful if you took a moment to read it here (and share!):
As a man, as a husband, and as a father, I will forever be a work in progress…so by no means does this article mean I have it all figured out. Far from it. In fact, I would love it if a couple years down the line I would look back at this and think about how far I’ve come even since then. It’s a marathon, friends…let’s no forget it. But we’re running together and the goal of it is for all of us to win it…together.
This is the 2nd entry in my series on Fatherhood this month. Enjoy!
Becoming a dad is a really amazing time: there’s excitement, there’s a little bit of fear, and there’s a whole lot of hope for the future: I’ll have to scare all those boys away or he’ll be the starting center fielder for the Yankees, just watch! But then things change and instead of just Dad, you become Heart Dad. Those dreams of your little man roaming the outfield or breaking tackles begin to look like a distant fantasy. In the words of Kent Nerburn, “It is much easier to become a father than to be one.” Adding a CHD to the mix doesn’t make it any easier. Here are some ways that a fragile situation has helped me to continually work on becoming a better dad:
When Nolan was born I was working for a Hospice…and in that kind of atmosphere you do indeed start to think about life. But as Nolan fought through his Norwood recovery and worked so hard to crawl and to walk, the idea that life is precious is so incredibly strong. I’m pretty sure most healthy people don’t give a second thought to what their heart is up to this very moment…they take it for granted. In our world, though, the heart – though unseen – is front and center. But other things – breathing, walking, eating – are things to be so thankful for. And with that in mind, human touch becomes so important as well: holding a little hand, giving lots of hugs, snuggling up on the couch to watch the same Yo Gabba Gabba episode for the 40th time. Those are the moments that feel so great to me as a dad, not just from Nolan but all of my kids. I’m so thankful Nolan is with us that I appreciate every little moment I have with him and therefore every moment I have with all my kids – not just the big, celebratory moments – but every single moment. So hug your kids more, tell them you love them…and then take that love and share it with others so you can make the world a better place. There’s lots of people hurting out there – not just heart families – so turn your challenge into something good!
All of us – both moms and dads – lead some pretty hectic lives. The weeks are long, the weekends are too short, and there’s never enough sleep to go around. But sometimes we really have to stop ourselves in the midst of this madness and actually be happy about something, for Pete’s sake. I remember being happy when both Grant and Hudson crawled and eventually walked…those are really awesome moments for parents. But I also remember when Nolan crawled a whopping 3 feet on his own, all the while crying out because it was so difficult, I wanted to cry. I remembered this overwhelming sense of joy, not because Nolan is my favorite or anything like that, it’s because I saw all he had to fight through to get to this moment. Those are the easy moments to be joyful about…it’s finding joy in frustration that is the challenge. Maybe there hasn’t been significant weight gain…that’s frustrating…but it could be possible that weight is just slowly creeping upward. Be happy about that! There’s moments every day to practice joy, whether it’s through an accomplishment or even a smile or laugh. If you stay in the doldrums and act so hard on yourself, you’re just slowly rotting yourself from the inside, and I’m pretty sure your kids will notice too. Yes, your kids feed off your joy…be happy with them and be happy with life, even in the moments when it’s not 100% perfect. After all, living with half a heart is the only life my son knows…and I can tell you he greets every day with one heck of a smile…and I can learn to do the same.
Dads: fight for something that matters…and don’t give up. The life of a Heart Dad isn’t about cars or salary or houses or stuff. It’s about taking your kids’ hands and fighting through it all as a family. There are days where I feel pretty bone-tired, but Nolan still needs a late-night tube feed…or he throws up in the middle of the night and it needs to be cleaned. Usually those things occur on weeks where I have to be up at 5am for work. But Nolan needs me…so I push through. I do it for him. But one day I hope my kids realize that my wife and I have done everything we could for all of them, sick or healthy. And even more, I hope they learn to never quit because of the example we set. But don’t forget to tell them you’ve got their back…encourage your kids and tell them when they’re doing well at something. When my wife was pregnant with the twins I would talk to them all the time in her belly. To Nolan I would always say “Keep fighting!” and even when I did my first Heart Walk and wore a band-aid across my chest, it said “Keep fighting!” Encouragement from a father goes a very long way, I believe, so encourage your kids to be resilient and set that example for them too.
This sums it up:
Slow down. Don’t work so much. Before you know it your kids will be grown and may not like you so much because you weren’t there. Ouch…but it’s true. You know by now that life is precious…and time is precious. Don’t waste it…instead invest it in love, hugs, smiles, laughter, memories, etc. You can’t ever go back and fix it, so make it right the first time. I really enjoy my job, but when I envision my kids turning 18 and graduating from high school I would be sad if they were like, “You know, Dad…you were a really great Manager.” PFFT. I want to be a great dad….period. And for me that means taking a little PTO to be at Donuts with Dad at the kids’ preschool or attending an end-of-year Pre-K party. The work will be there when I get back. I remember those long days and nights in the hospital: hoping and praying that my son would get better and that he could go home. Now that he’s home I better not waste my time and make those hopes merely a fantasy.
Listen fellas, I’m not the perfect Dad…far from it. This is like a marathon where you’re training as you run it. I’m sure there are Dads out there with way better advice than mine (please share in the comments). But what I do know is that being a Heart Dad changes the way I parent. I’ve seen how fragile life can be…and I’m going to put everything I have into giving my kids – and my family – the very best of me. Dads, I hope that’s the same for you too…and don’t just say it…do it.
Hi friends! One of the highlights of June is Father’s Day. I wanted to make it a little bigger and celebrate Father’s Month on this blog by highlighting fatherhood-related topics. I hope you enjoy the first entry.
When people find out I have 3 kids, including twins and a heart kid, I often hear the same reaction: how do you guys do it? To be honest, I don’t know, I just do. But I wanted to take a glimpse into my wacky world and show you a day in my life…
5am: Oh alarm clock, you are the devil. I am not a morning person and to make matters worse I have to be up particularly early this day for a 7am meeting at work. So I’m up and looking thrilled:
Blerrrgh. Did I mention I’m not a morning person? But after a shower and some spiffing up, I’m ready to roll to my day:
6am: Before I go, I need my coffee and a drinkable breakfast, aka the Mean Green Smoothie:
I can hear the “ewwwww”s from here.
If there’s one good thing about leaving so early is that I beat the typical morning traffic. Charlotte’s traffic has been getting worse and worse and even though my commute is like a 17 mile drive it sometimes takes an hour or more depending on the – ahem – brain function of other people on the road. But today the roads were clear. I needed some jams to get me pumped up for the first important meeting of the day so I chose the album “Suburbia” by House of Heroes. If you don’t know them, they’re amazing, so check ’em out. Anyways, I got to work in like 30 minutes (amazing) and even managed to get to my office to check emails before going to the meeting.
7am-2:30pm: So we kicked it off with a 2 hour meeting followed by all sorts of busy stuff including more meetings, lots and lots of walking, tons of emails, long looks at data, and maybe a little lunch. A little. This was right after Memorial Day so everyone was ready to roll after the holiday and there was lots to do.
2:30-3:30pm: An early start means an early exit and I got to beat some more traffic headed home. In fact, I got home with enough time to go pick up my oldest from school, which always makes me happy. I love to drive up in the car line and see him in his backpack and smiley face. I can’t believe how big he’s gotten. When we got home we had enough time to make funny faces once we parked:
3:30-5:30: It was nice to be home during this time, since I’m usually either still working or on my way home from work around this time of day. My wife was in the backyard with the twins in our new little inflatable pool. They were having a ball and our oldest soon joined in:
I especially liked spending some quality time with my love:
and, of course, we had time for more funny faces:
We made some dinner, ate some noms, and then my lovely wife had to head off to work…so it was just me and three little knuckleheads.
5:30-8:00: This is when the house gets turnt. We played, we read books, we ate fishy crackers. The kids spilled stuff and I mopped:
Then we put on the AC/DC pandora station and had our own little rock n roll party. Nolan even joined in on the drums:
Finally it was bedtime for the twins. Fresh diapers, a juice for Grant, and lots of snuggles came next. Since Nolan has his struggles with eating, he depends upon tube feeds and this would be the first of the evening:
There’s always been a struggle to get Nolan to gain weight…I wish he could eat by mouth, and we’re working on it…but it’s a struggle. Sometimes we can put together a string of days where Nolan is gaining weight well and then he’ll either catch a cold or something will happen where he loses it again. What a roller coaster. This feed is the first of several tonight for our happy little monster:
Next it was time to time to get the oldest ready for bed. He helped me clean up the toys and the rest of the mess he and the twins made. Then – after a rousing couple games of Candyland – I read him a book and sent him to bed.
8:30: Now that the munchkins are in bed I can allow myself my little centering moment (which I wrote about two posts ago). Even though there was still a lot to do around the house, I took a moment to treat myself….to COFFEE:
And for the next 20 minutes or so I allowed myself the time to sip some coffee, relax, and watch some Yankees baseball:
Then it was time to kick it back into gear. I did a sinkful of dishes and wiped down the counter tops, swept the floor where my crazy orangutans that I call my twins threw a bunch of crackers. I even got some laundry done.
9:00: Time for another tube feed for Nolan. This one was heavy on the calories…gotta chunk him up!
After doing some more laundry and taking out some trash it was time to take a little break for guitar practice:
This is another hobby I’ve been doing that is good for the ol’ noggin. It’s really relaxing but makes me concentrate a lot as well. This particular night I was using my brand new capo, which opened the door to a lot of cool new songs for me.
11:30: Time for Nolan’s final tube feed of the night. All in all, we’d like him to get about 1000 calories a day and I think we got right there. The tube feeds are a little bit of a process because occasionally we will mix in some Duocal to add calories, and then you need to pump in his feeds nice and slow so he doesn’t throw up…because throwing up = weight loss. Usually it’s during this final feed when I take a moment to be thankful that our little boy is doing pretty well, all things considered. I watch him sleep, watch him breathe, and I am glad he can do both without a problem. He’s come a long way!
12:00am: My wife is done at work and gets home. It’s always really awesome to see her and by this point in the day we’re both super exhausted.
12:30-ish: SLEEEEEEEEEEEP….and do it again tomorrow!
So that’s a day for me, and it’s fairly typical for a workday. How do I do it? I just do. I have a family to help support and I have kids to help raise, and I need to do my best, no matter how tired I might be. While it might be a wacky life, I’m happy with it since I have my family and I love them. And I’ve learned so much on this journey, too.
Some of you might be reading this and your life might be different: it might actually be even more difficult. If that’s you, my heart goes out to you because I really can’t imagine how you do it. Some of you might have a heart kid on the way: I’m hoping this post doesn’t alarm or concern you: every heart kid is different…please keep that in mind. Nolan needs a little bit more than a lot of other heart kids and still there are kids who need a ton more than even Nolan does. Whatever this situation throws at you, I am living proof that parents can summon the energy to make it by…day in, and day out.
While I do stay pretty busy, it would be an epic fail if I didn’t recognize that my wife works 10x as hard as I do. I mean she gets kids outta bed and ready for the day, she does multiple school drop-offs and pick-ups. She takes Nolan to all his therapies and appointments. She handles naptimes and even cooks dinner a lot of the time. THEN she heads off to work at a bakery for several hours late into the night. I have no clue where she finds the strength, but there’s no one I’d rather have on my team but her. I’m very lucky!