Monthly Archives: June 2014
Ok heart parents: you know how this goes: there’s lots of well-meaning people in your life who just have no clue what it’s really like to have a heart child. It’s not a cold, it’s not a boo-boo…it doesn’t just go away, it won’t get better with cod liver oil or elderberry syrup. It’s a life change and it makes the life of a parent much different. And lots of well-meaning people just don’t get it. I wish people can understand that extreme heat or cold is very difficult for heart babies, so it makes summer beach trips and anything in the winter a challenge.
The other day I was participating in a webinar that discussed a patient-and-family-centered approach to patient safety and care. They brought up this really awesome example that a parent of a disabled boy created that showed all that it took to raise a disabled boy. It was an amazing “map” that highlighted all the things she had to deal with in order to care for her son. It was mind-blowing. I couldn’t get it out of my head so I took some time and made a Nolan Care Map:
And honestly, this is just scratching the surface. People want to know why our life is so crazy-busy? Take a look. Pretty overwhelming isn’t it? Nolan has a lot of stuff going on and there’s lots of things we keep track of and lots of things we need to be mindful of down the road. And trust me, I have the easy end of this deal: my wife is an absolute superhero. She gets 3 kids up and dressed and fed and goes off to multiple appointments throughout the week, sometimes with appointments daily. She works through physical and speech therapy with Nolan all while trying to keep two other kids occupied. She keeps the house in order and has been an amazing cook too. I love her and we couldn’t do any of this without her…in fact, there’s no one I’d rather do this crazy life with. Heck, I get the easy end of this deal with going to work.
I made the map in hopes that people could better understand what it’s like to raise a heart child. You should take some time and do one of your own…it puts things into an amazing perspective. I’m hoping that it helps people see that the life of a heart parent is busy, expensive, time-consuming, and stress-inducing. It’s not the normal life of a parent, not by a long shot. I’m not saying that parents of healthy kids don’t have a busy life or stressors, but it’s definitely apples and oranges, the way I see it, and I just want people to understand.
You guys know I can’t say enough about how awesome Nolan’s care was at Levine Children’s Hospital. They are a first-class hospital bursting at the seams with amazing staff. Well I am really excited to share some great news with you:
Yes, LCH was ranked as one of the best Children’s Hospitals by US News & World Report in 5 specialities, which includes Cardiology! Yeeeeeaaaaah buddy!
Last week we were invited to the announcement of the rankings at Levine Children’s Hospital, which is always an honor when they choose to think of us and include us in celebrations like this. It was great to see heart families we know, and even to meet new heart families.
I know that no one wants to have their child in a Children’s Hospital…it’s a really tough thing to go through…but Levine Children’s Hospital is the cream of the crop and we’re fortunate that they’re right in our back yard. There was a point during my lengthy unemployment where we briefly entertained the idea of moving if we found good job prospects, but it never happened and we stayed put. If we were to move away and THEN found out we’d have a child with HLHS, I’d dread to think that options would be available wherever we moved. There are lots of great Children’s Hospitals throughout the US, and thank God for that, but I’m glad we have an excellent one right here. They treat us like family and it’s a special feeling to know you’re not just a number. And – my goodness – their lobby has chairs shaped like bacon. LIKE…BACON. Win!
I’m proud to say my child received awesome care at Levine Children’s Hospital, and I’m confident telling people that it’s an awesome place to be should your child need care. So keep up the good work, LCH! We’re proud of you!
Read more about LCH and their recognition here: http://www.carolinashealthcare.org/usnews-lch
When I started this blog I wanted it to be a place where heart dads could come and get information from and connect with a fellow heart dad. Today, though, I want to actually step away from the “heart” piece and focus on the “dad” part. It’s Father’s Day and I wanted to wish a happy Father’s Day to all my readers! I hope it’s an awesome day for you and your families, and I know that with your experience, every holiday becomes a big one when you can spend more time with your heart child and they’re doing well.
I remember back in college whenever I’d be asked the typical “Where do you see yourself in x years?” question in a group setting, I’d often be the only one who would ever mention anything about having a family. I thought that was interesting. To be honest, I haven’t had a good relationship with my father and I think that fueled me towards becoming the best dad I could be one day. Since then, God’s blessed me with 3 awesome boys to help protect and mold into fine young men. And also to be honest, I haven’t the slightest idea how to do that. Not the foggiest. I don’t necessarily have an example to go by so I’m pretty much winging it and learning new things all the time. Am I the perfect dad? No. Will I ever be? Unfortunately not. What I will do, however, is try my very best with every bone in my body.
A dad’s life is an interesting one. TV and movies portray dads as typically dumb and lazy, Father’s Day sometimes gets the “meh” treatment (if you compare advertising and whatnot), and I remember all the weird looks I’d get when I was staying home with my oldest son and I’d take him grocery shopping during the day. Thus far, though, I can honestly say the most important part of being a dad is being there. No, I don’t mean “being there” as in “Hey, I’ve been on the couch all day everyday,” I mean it as really being there for your kids. Support them, make memories with them, take lots of pictures, act silly, laugh a lot…because even if they don’t remember it, you always will. It’s not enough to simply pay the bills and put food on the table, you need to invest in your kids. And that’s easy to forget, especially when I’m determined to wash a mountain of dishes but my oldest wants me to sit next to him and watch Backyardigans. Can the dishes wait 20 more minutes til he goes to bed? They always can. The world ain’t gonna explode over a little cleanup in the kitchen. But you know what, sometimes I have to stop and remind myself of that. And you know what else? I always feel relaxed and happy after watching Backyardigans with my 4 year old, as opposed to washing dishes, which can be exhausting sometimes. Why is this important? Lemme drop some knowledge on you: about 95% of the inmates in prison in the United States right now are males, and about 85% of those men had no father involved in their life. Yeah. Whoa. This is serious business.
I’ve started reading a book called “Father Fiction” by Donald Miller (I’ve mentioned him on this blog before, his books are great), which is about his growing up without a dad and learning what manhood and fatherhood really is. I think ALL guys should read this book (You’ll sometimes find it published as “To Own a Dragon”…same book).
One part that has struck me about this book is his discussion of Dwight D. Eisenhower’s book “At Ease: Stories I tell to Friends.” Eisenhower notes that through his childhood, his parents taught him that his very existence was important to their family and the the world as well. Discussing this, Donald Miller writes, “Eisenhower’s parents assumed, and taught their children, that if their children weren’t alive, their family couldn’t function…I mean, can you imagine growing up believing that if you didn’t exist, your family would fall apart? Can you imagine how different the world would be if all children were taught this idea? I found the sentiment striking, and I wondered what it would have been like if, as a kid, I had felt completely needed by my family. My mother needed me, it’s true, and she was certainly loving, but she was also burdened with paying bills, working late hours to pay those bills, and managing life as a single parent…She mothered herself into exhaustion…I knew, somehow, that my mother’s long working hours were because of my sister and me. But I never thought to ascribe my mother’s emotional and physical exhaustion to the lack of a husband and father; rather, I ascribed it to my existence. In other words, I grew up learning the exact opposite of what Eisenhower was taught. I learned that if I didn’t exist, the family would be better off. I grew up believing that if I had never been born, things would be easier for the people I lived. A thought like this can cripple a kid…If a kid grows up feeling he is burdening the people around him, he is going to operate as though the world doesn’t want him.”
Makes you think, doesn’t it?
Donald Miller has done an amazing job of opening himself up to people about his childhood and has even developed The Mentoring Project, which wants to equip faith communities to mentor fatherless boys. I really commend him for that and think it’s an awesome project.
So dads…will you join me in working harder to invest in our kids? Give them your time…their childhood won’t last forever. I love to tell my kids that I love being their dad…and it’s true. Yes, it can be exhausting and life can be hectic and busy. But in the end, I love those kids with every fiber of my being and I want to always show them that, whether it’s horseplay on the living room floor, being at every game, or telling them I love them. Let your kids know they’re crucial to you, your family, and the world.
Again, Happy Father’s Day to all the dads out there…keep being awesome, keep being involved! For those dads who may be in a hospital today with their heart child, I send especially warm wishes to you: keep fighting for your little one…never ever give up. Be strong…for them.
For those of you who don’t know, I’m a HUGE fan of the New York Yankees. I like to joke that “We only cheer for one team in our house.” The photo above is of the 1927 New York Yankees, often noted as the greatest team ever in the history of baseball. Why? They had a lineup delightfully called “Murderer’s Row”…they were an offensive juggernaut, headlined by a #3 hitter you may have heard of named Babe Ruth. Oh, and if you wanted to simply walk the Babe, the next hitter was Lou Gehrig. Yeah, you were pretty much screwed if you were an opposing pitcher. In my era, the 1998 Yankees were an absolute beast. They were a lot different than the ’27 team, though. They didn’t have a similar offensive force…they wore you down as a team full of patient hitters and great pitching. They won 116 games and pretty much dismantled everyone during the season, playoffs included.
So just before you start rolling your eyes thinking this is all about the Yankees, it’s not…I want to talk about another epic team that is like none other: my son’s heart team.
The Pediatric Heart Care team through Sanger Heart & Vascular and Levine Children’s Hospital is the BEST. Period. These folks work really hard to make sure that your child has the best care and that you feel informed and valued as a parent, and that’s pretty special. When you come in for appointments, you’re always welcomed warmly. When you have to see a cardiologist, any of them will be patient and informative. When your child is hospitalized, they go out of their way to be helpful and look out for the best interests of your child. Yes, I do wanna brag…Nolan’s team is the best around.
Want proof? Here’s your proof: take some time to read through the Congenital Heart Services and Outcomes book http://www.carolinashealthcare.org/documents/lch/LCH-Congenital-Heart-Center.pdf
Want numbers? In 2011, they performed 302 surgeries with a mortality rate of 2.4%, better than the national average of 3.2%. Better recognize.
They’re a great team and they work so well together, and it’s all for the benefit of the little ones who are under their care. I trust them and wouldn’t want any other team.
I could put a post daily on this blog thanking this team for all they’ve done for Nolan, and it would be enough, and it wouldn’t even come close to being enough to showing how awesome they are. So I want to thank you, Heart Team, for being who you are, for valuing our voice as parents, and for sharing in our excitement when our kids do well. Trust me, it means a lot to see you all involved in different events, because it shows that your care extends far beyond the hospital or doctor’s office. Having a CHD baby is like being in a club that no one necessarily wants to be in, but I’m thankful to have you all on our side. I’m proud to cheer you on as you cheer on my son. I don’t know where we’d be without you.
And finally I’ll leave you with a quote from the great philosopher Babe Ruth: “The way a team plays as a whole determines its success. You may have the greatest bunch of individual stars in the world, but if they don’t play together, the club won’t be worth a dime.”
This may start off as pretty off-topic, but trust me I will try to tie it all together. The other day I checked out the movie Gattaca on Netflix:
I’m not going to completely spoil the plot of this movie, for those of you who haven’t seen it yet, but the general idea of the movie is what I’d like to discuss. The movie occurs in the “not-too-distant-future”, where people are able to have improved, nearly perfect children through genetic manipulation at the time of inception. This means they could pick their child’s gender, eye color, hair color, etc. And they will even remove traits that cause anger, violence, etc. These children grow up to be highly-regarded in society and are called “Valids”. They get the really good jobs.
Then there are children who are conceived naturally, without any genetic manipulation. They’re called “In-Valids” and are relegated to menial jobs. There’s a scene where an “in-valid” baby is born and a nurse prints and reads off a list of probabilities that the baby will have something wrong…on it was something like “ADD, 50%….heart disease 91%…estimated life span 30.2 years…”
The parents of the natural child regret their decision and use genetic manipulation for their next child. They constantly remind the oldest son of his possible flaws, pointing out that his heart can’t handle things, even though there was no proof of a heart condition with him. Valids have high-status jobs, but are always subject to urine and blood testing to ensure they’re genetically superior, and they are who they say they are.
And I’ll stop there…you should watch the movie, it’s a good one.
My real point in discussing Gattaca is this idea of having the “perfect baby.” I remember attending a conference last year where one of the speakers was discussing the future of healthcare technology. She talked about physician holograms, mobile vitals collection, etc. But she also talked about the way future and the idea of “Designer Babies.” In essence, the same thing as Gattaca, and that the major issue for employers is how to balance the workplace when you have employees who are modified to be stronger, faster, smarter, etc., verses those who were born with basically the luck of the draw.
I’m sure the thought of having a 100% healthy baby appeals to pretty much everyone, right? I mean there’s a chance you’re on this blog because you’re experience is the opposite of that. The big question for me is this: let’s say we had this technology in place and we were able to have two completely healthy babies. What would that look like for me? No clue. Would it be easier? Yes. But I’ve said it a million times that I’ve been learning to turn this CHD thing into a meaningful thing. If everything was smooth sailing, would I be content with mindlessly coasting through life? Or would something else come up to give it meaning? Oh the crazy, crazy questions. What are your thoughts? Will we ever get to the world of “Designer Babies?” And will it spell the end for CHDs and other birth defects? Would we benefit from a “perfect” world?
The next thing that got me thinking is that if this technology suddenly comes to fruition in the very near future, that Nolan – and all my boys – would eventually have to compete in a world with genetically enhanced people. I’d hate to think my child would be marginalized merely because of his heart. Sometimes it’s our flaws that make us interesting, it’s our scars that share our stories.
Man, I love me some food. But therein lies my problem. I like to eat way too much of it…broiled, grilled, fried, bacon-wrapped, whatever…if I can nom it I’m gonna nom it. Earlier this year, though, my wife and I were talking about what Nolan’s diet will/should be like once he’s eating food by mouth. The reality is – as a society – we don’t do a good job of eating well to take care of our hearts. Myself included. And with a half heart, in essence, it would probably do Nolan a world of good to watch what he eats. But how is he going to learn that if I’m pulling a Kobayashi and eating everything in sight?
So we decided to change some things…we have put a ton of effort into caring for our heart baby, but now we need to start taking care of ourselves. I can’t help Nolan navigate his own heart issues if I develop heart issues of my own, right? So what we decided to start doing was pay more attention to what we were eating. We didn’t go all kinds of crazy, we just did more organic fruits and veggies, turned down the processed foods, etc. We also started doing some exercise too, using FitnessBlender, which has free full-length workout videos on YouTube.
Eventually, this started to fall by the wayside, unfortunately. I went back to eating whatever and I could start to feel the difference again. But then my wife decided to do something drastic and do the Daniel Fast for 10 Days. For those who aren’t familiar with it, you basically don’t eat meat, dairy, sugar, or caffeine. Basically just fruits and veggies. She was a trooper for her 10 days because I thought she was nuts. Plus I felt bad eating my normal stuff while she seemingly ate nothing. But she said she felt a whole lot better…and she inspired me to do the same as well.
I had my reservations because I had a new job that requires a ton of walking around all day and I was worried I’d be this belligerent, ravenous beast all day because all I had in my lunch bag was some carrot sticks. But I decided to do it anyway. The hardest part for me wasn’t giving up meat…it was giving up coffee. I love coffee…I’m not the type that has 8 cups a day, usually 1 or two, but I like it nonetheless. I decided to limit myself to green tea…while it still has caffeine, I felt like I needed a little something to help.
So the first 3 days are the worst as you basically detox all the crap food outta your system. I felt horrible and had terrible headaches. But then suddenly you have a lot of energy, you don’t miss the meat or coffee, and you get used to the diet…eventually I did the fast for about 15 days. Now I know this isn’t meant to be long-term, but the results were there: I ached less, slept better, focused more clearly…and I lost 10 pounds in 15 days. Pretty amazing right?
So now I’m at the stage where I am slowly incorporating things back into my life, like meat, cheeses, and coffee. But I have them pretty sparingly if I can. I’m hoping I can keep up this clean eating for a long, long time…because I want to be healthy and see all my kids grow up healthy too.
I’m not saying you have to go on any particular diet or do anything drastic, but maybe it’s time we as heart dads take some time to take care of our tickers too. It would be terrible to live so long with the worry of losing your child to their heart issue, but then your child loses you because of yours.
I’m apparently a little late to this party, but it just occurred to me that my previous post was my 100th post on this blog! Whaaaat? I can’t believe it’s already been 100, can you?
I remember when I got the thought about this blog, it came after a difficult night of sleeping where I couldn’t shake the feeling that in the following day there could possibly be a dad somewhere finding out his baby will be born with a congenital heart defect. Then once the initial shock wears off and he hits up google to find information, he won’t find anything quite for him. So I set out to write this blog and to be honest, in the beginning I didn’t think anyone would read it.
Since then, though, I’ve had some really good interaction with people through this blog…and even for those who merely read it but don’t comment, I hope this blog has been helpful. One time I met someone who read my blog and told me it was like meeting a celebrity. I was surprised…because I was glad someone actually reads this. I was happy that someone reads this. I was also a little embarrassed…cuz I’m no celebrity…but I was overall flattered nonetheless. You’ve put up with me writing about serious issues, frustrating issues, highs, lows, and everything in between…all punctuated by lots and lots of memes and funny pictures.
Sometimes I go week-to-week knowing exactly what I’m going to write about. Sometimes I have no clue. Either way I hope my blog has made a difference for someone out there…I know it’s been a great experience for me. So here’s to 100 more posts…and many, many more!