Fatherhood in Fragility
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.
Posted on June 10, 2015, in family and tagged CHD, congenital heart defect, Father's Day, fatherhood, HLHS, HLHS Dad, HLHSdad, hypoplastic left heart syndrome, parenting. Bookmark the permalink. Leave a comment.