Category Archives: life
By now I’m sure a lot of you have heard of that very popular essay called “Welcome to Holland.” If you haven’t, google it. Basically it was written by a mom as a way to describe what it’s like to have a child with a disability/illness. At its core, it’s a good essay…but I also felt like it just wasn’t enough. And the more I thought about it, the more I felt like it needed a good ol’ 2015 REEEEEEEEEEEEMIX! I thought a good place to test this out was back in February at the Camp LUCK Conference and I think it was pretty well-received and I had the opportunity to do it again this summer. Now I think it’s a good time to share my version of this with you (the countries have been changed, of course, because why not?) and I call it, “This is NOT the Trip I Planned For!” There’s a lot of stuff here, so I’m breaking it up into 3 posts. Please let me know what you think.
Imagine you’re going on the vacation you’ve always dreamed of…for our sake let’s say that’s Hawaii. And what types of things do you do to prepare for a trip to Hawaii? You buy stuff to swim in, pack some sunscreen, maybe a nice hat…maybe you take some surfing lessons and scope out restaurants and coffee shops (if you’re an addict like me). You get as prepared as you can, because as soon as your feet hit that sand, you’re off to some major fun.
Well the big day arrives and you’re on the plane in your shorts, flip flops, and flowery shirt. It’s a long flight so you doze off after a couple rounds of Fruit Ninja. Eventually the plane lands, you wake up, get off the plane and are greeted with “Welcome to Finland!”
And you’re like “What the heck?” or maybe, “FINLAND?!” But there you are…and to make things interesting: you can’t go back. How lovely! So there you are: in shorts and flip flops…and it’s freezing. And people speak a language you don’t understand. Oh shoot.
For most of us, this is what it was like to first find out you were going to have a baby – and all the planning that went around it – and then arriving at something completely different. Yes, you’re still on a trip…but it’s a little bit different. And you know what? While it isn’t what you planned, it can still be awesome. But first you need to know what the heck to do now that you’re in Finland:
1. Learn the Lay of the Land
So what’s the deal with this strange place? What’s out there? One thing to work on is getting your bearings before plowing ahead. Do a little bit of research on your child’s CHD, reach out to some support groups and get some questions answered, find a good group on facebook to join. Know what’s ahead. The other thing is that you’re going to keep coming back to this step because you will always be adjusting due to age or surgeries or weight gain or even some minor complications. Things change, so you’ll always have to adjust your map. A while back I wrote a post about a care map that I made for Nolan. I sat down and literally mapped out all the things that affect him or will affect him and our family in the future. And it looked something like this:
I made this probably a year ago and as I look at it I already see some things that need to be changed or even added to his map! This journey is always changing, so make your map and don’t get lost!
2. Learn the Local Language
When I first built out this presentation I did a lot of research on what it was like to move to another country. Obviously if you’re going to live in a country where your language isn’t their language, well…you better learn fast. And we all remember the day where we had our language lessons: “hy-po-plastic”…I don’t think I’d ever used so many syllables in one word before. And who is this Norwood guy anyway? But now those things are an everyday part of my vocabulary. Am I a medical expert? No way (you don’t want that anyway), but I am becoming more familiar and more comfortable with the language. I mean, come on, how many of you guys said “Tetralogy of fallot” before this journey?
3. Immerse Yourself in the Local Culture
The reality is, you can’t move to another country and just become a hermit. I mean, I guess you can, but that would be a waste of travel. Yes, there’s germs and the big bad flu bug, but you don’t have to stay locked up in the house all year long. Eventually you need to get out, meet people, and for the love of God get yourself some help! Research says when you move to a new country you need to shop where the locals shop and eat what the locals eat, and this is true for heart parents. Get out there and meet other heart parents: build a good support system. You’re going to find out they’re going through the same things you are and they’ve been in the same place…and even better, they want to help you! Once you get that support you can start to give that same support to others who have just gotten off the plane in Finland with that same bewildered look you used to have. And you can take them by the hand, say welcome, and let them know that Finland is actually a pretty awesome place and you’re there to help.
Keep an eye out for Part 2 of this series. And remember: keep your heads up – together we can do this! I love reading your comments so please share!
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.
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!
I don’t know if this happens to anyone else, or maybe it’s just me due to special circumstances, but there are occasional moments that bring back early memories of this heart journey. And not like those “Awwww” memories…it’s more of those “Remember how much that sucked? BLAHAHAHAAA.” You ever have those moments? Like something: a visual, a sound, a place; that takes you right back to a moment and just messes you right up. Yeah it happens to me sometimes.
I remember the first time I went back to visit the CVICU when it wasn’t for a patient-related need. I can’t remember the exact circumstance, but I think we were either dropping off gifts for the staff or care packages for the patients that my wife put together. Either way, things were just fine as we drove to the Children’s Hospital, got our visitor’s badges, rode the elevator up, got buzzed onto the unit and walked down the all-too-familiar hallway. We were greeted by all those nurses that had since become like family to us…and it was sweet. AND THEN. IT HAPPENED. In the distance…over the sound of everyone talking…over everything else, I heard it: the beeping of the pulse ox monitor. The faint ding…ding ding…DING DING DING, that I heard so many times. And suddenly I felt my temperature rise significantly and my palms got like this:
I wasn’t full-on Shawn Kemp sweating, but I was close. And for a brief moment it’s like time stood still while the memories came crashing back: being scared, being tired, being worried…all those days after days after days. It was very brief but it felt like forever…and I kinda remember going back to the car and commenting how crazy it was to hear all those familiar sounds. But after that, trips to visit the CVICU were just fine for me.
Last year I had the opportunity to visit the NICU for a purely work-related matter. There are safety checks that several of us on staff are assigned to do and I was covering someone’s assignment, which happened to be the NICU. I was like, “Yeah I’ll do it, no problem.” And I walked around with the Nurse Manager, looking at fire extinguishers and gas tanks and whatnot. Then the time came, and honestly I didn’t think anything of it: the Nurse Manager badged us in to the very nursery where both Grant and Nolan were. The door swung open to the dim light of the NICU and I immediately saw the spot where they both used to be, since they were right there in front of the doorway. While the NICU is very quiet, the sound of my heart beating was deafening. I remember that familiar feeling of sweaty palms and the thoughts that came rushing back…back to those moments where we didn’t know what would happen. The Nurse Manager was talking but all I heard were those Charlie Brown-style wah wah wahs. As before, it lasted a brief moment and I turned to the Nurse Manager and said, “You know it’s amazing being back here…my twins were right in this spot after they were born and I haven’t been back since then.” And we chatted about that briefly and I felt much better and we continued on with our work
The last instance of this was very recent: I was with my co-workers doing a very fun video project and we were going throughout the hospital filming staff doing fun stuff. We eventually made our way to the OR floor. As their Nurse Manager wrangled up some staff for our video, I saw it. Straight ahead of me was this little pre-op holding area…the very area where we made the long walk to bring Nolan before he went in for his Norwood procedure. That moment was seared into my mind because it was the most scared I’ve ever been in my life because I didn’t know if that kiss I planted on his little head would be the last. Being there was very intense for me because – let’s face it – I would’ve never in a million years thought I’d be hanging around the OR floor. I mean come on. But here I was, and the feels were real, man. I stood and stared, and stood and stared. Finally a co-worker came up to ask me a question, which I sorta half-answered. Then I turned to him and was like “Man, this is crazy being down here,” and I pointed to this little holding area and told him all about it. He thanked me for sharing the experience and said it’s a good one to share since it can help clinical staff understand the level of anxiety our patients and families go through. I was thankful for that and it honestly helped me feel better. From there I was fine, the video was awesome and the OR staff were hilarious.
I’ve written before on this blog how I do think Heart Parents suffer from PTSD. I firmly believe it. I also believe that it’s different for everyone: I’m sure some people have it in extreme forms and some people will just get these flashes of it. Either way, I’m sure as you’re reading this you’re remembering a moment where this has happened to you. And it’s ok, it doesn’t make you weird or defective. And it doesn’t necessarily mean you need to seek any kind of professional help (though I’m not the person who should help you decide that). In my experiences above the one thing that was a common thread in these “Raging Remembrances” was the act of calling out what I was experiencing and talking about it. I’ve found that if I say “Hey this reminds me of such-and-such” it allows me to acknowledge the feels are real and that I understand them.
I’m not saying you have to be all touchy-feely or whatnot…I’m saying I hope that you get comfortable with sharing your momentary Raging Remembrances…that at least brings someone into the ring to be on your side. Heck you don’t even have to share it with a fellow heart parent, just share. If you talk about it, you avoid packing it away. Sure you can get away with packing one or two or three of these memories…but over time you’re gonna run out of room…and when you try to stuff one more thing down it’s going to come bursting out and it’s gonna be U.G.L.Y.
While it does take some bravery to talk things out, remember that you don’t have to go into the WHOLE story. Just a dab will do you. Give it a try the next time something sets off your Raging Remembrance.
Hey friends! For those of you who follow this blog regularly, you’ll notice it’s been a bit since I’ve posted. I took a bit of a break and it felt nice to let life happen. But I missed you all so here’s an update on what’s been going on:
Nolan had a scheduled cardiology appointment, which went well. I don’t want to spoil the complete result of it, so I’m going to post a little bit more about that in the coming days.
I managed to sprain my back during a trip to Ikea. For the record, I was lifting with my legs until the box slipped and I tried to catch it. The result was some really intense pain…to the point where I couldn’t even pick up any of the kids. When I went to the doc, they prescribed me some steroids. Of course, since I have an overactive imagination, this is how I pictured my time being prescribed steroids:
Buuuuut…reality was more like this:
No joke, those things made me into some kinda crazy ravenous beast….I was always hungry. Luckily for me, it only lasted a week and my back feels 100% better. Goodness that was a brutal few days at first because I was like “ahhhh my back hurts but blaaaaaaargh I wanna eat EVERYTHINNNNNG!”
Looking ahead there’s lots of really cool stuff on the horizon. There’s another Pediatric Congenital Heart Association guest blog coming up soon and I also have the honor of speaking at a parent breakout session during Camp Luck’s Family Camp this month, so that’s really exciting. Hopefully I do a great job!
It’s good to be back, friends…let’s continue the fun and good conversation!
I’ve been where you are…the glazed look in your eyes, the nearly zombie-like foot shuffle, the Lord-knows-how-old crust on your t-shirt. You’re the dad who is on day 4 in the hospital after your child’s most recent heart surgery. I see you standing in the cafeteria, meal ticket in hand thinking, “If I eat another chicken salad sub, I’m gonna lose my freakin’ mind.” Dude, I’ve been you. Now that I work at a hospital, I see you guys all the time…I call these parents “ghosts upon the earth,” since you get to this crazy place where you exist but you kinda don’t…you’re just floating through the motions until you get to safely take your child home and it’s like someone gave your body back to you at the front door. Well guys, this post is for you…whether you’re shuffling through the hospital or doing it at home. I know this life is a challenging one but we have to remember to take care of ourselves! Obviously our little heart warriors get a lot of attention…they need that attention. There’s meds to be given, tube feeds to administer, appointments to attend, and futures to fret over. The reality, though, is we’re killing ourselves with stress.
There’s been a big shift in healthcare towards more holistic styles of healing – or integrative therapies, as they’re sometimes called. But before you write me off as some kind of hippie, please hear me out. Mainstream healthcare is slowly getting on board with the idea that some of these more non-traditional therapies can actually be very helpful in the big picture. To be honest with you, they weren’t anything I ever put much thought to until about the last year or so. My job has exposed me to several of these therapies and I have to say they’re a great thing for the healthcare system and for us as heart parents. So here’s a few:
Is it massage? Is it chiropractics? Is it weird? Nah. To be honest with you, I am far from being an expert in healing touch because I don’t completely understand it.
According to the Healing Touch Program website, “Healing Touch is an energy therapy in which practitioners consciously use their hands in a heart-centered and intentional way to support and facilitate physical, emotional, mental and spiritual health. Healing Touch is a biofield (magnetic field around the body) therapy that is an energy-based approach to health and healing.”
Now before you get all like “That’s some voodoo, bruh!” Hear me out. I’ve tried healing touch twice and whether or not the results were all in my head, I have to say it worked splendidly. We recently had some healing touch practitioners at work and I sat down for a 10-minute “centering exercise” as they called it. Basically I saw in a chair and the practitioner put her hands gently on my head, neck, and shoulders. All the while I was encouraged to breathe and listen to some soothing sounds on a radio. After 10 minutes I felt completely relaxed, completely focused, and very rested. Still can’t explain it, but I felt like a million bucks.
The good thing is a lot of hospital employees are going through classes to become healing touch practitioners, so ask around and see if someone can come to you and even do 10 minutes of healing touch. You will feel the stress melt away, I promise it’s worth the time. It’s non-invasive, you don’t have to take any meds, so the only thing you have to lose is a little time.
For a lot of people, “aromatherapy” means heading down to Bath & Body Works and buying a lotion that smells like a beach. Not true. I bet if you spent 45 seconds on your facebook timeline, you’ll find someone who is all about their essential oils. It’s like the next big thing. The reality, however, is that aromatherapy is nothing new.
Think about it, way back in the day before people were able to pop a tylenol or apply Head-On directly to the forehead, people used a lot of different ways to heal using what was readily available to them. Often this was plants and oils. Fast-forward to today and those same oils are becoming very popular as people seek ways to heal without medicine or invasive procedures.
I learned about aromatherapy about a year ago at an integrative therapy educational session at work and thought it was pretty awesome. It’s amazing how you can just basically put a cotton ball in a little cup, add a few drops of essential oils to it, put it next to you on your desk and really get your heal on. For example: stress got you feeling nauseated? Use some ginger essential oil, which settles the digestive system and stimulates appetite. Sound like bunk? One day I was feeling extremely sick to my stomach at work and needed to stick through it to work a particular event. I sat at my desk with some ginger essential oil and felt better in no time. It was pretty awesome.
There’s so many great uses for aromatherapy and I encourage you to research them more on your own. Look into things like Bergamot, which is an antidepressant, or Lavender, which – when mixed with vanilla – can help reduce fear and anxiety prior to medical procedures…hint hint.
When I was in college I took a lot of psychology classes and I’ll never forget one professor who taught us about breathing exercises to reduce stress. She said “If you’re waiting on that big job interview one day and you’re freaking out, just close your eyes, take a deep breath through your nose and release slowly through your mouth.” I’ll never forget it because it works. Taking a few moments to focus on your breathing can really help relax you and relieve some stress.
An exercise that I found works great is to breathe in slowly through your nose, counting to 4. Then hold it for 2 or 3 seconds and release slowly through your mouth for another count of 4. If you close your eyes and do this a couple times, you’ll be amazed how relaxed you can feel. The best thing is you can do breathing exercises wherever you are: in your office, at home, at the hospital, in the car (don’t close your eyes for this one). And again, no meds involved in helping you feel better.
There’s lots of great breathing exercises out there in a wide range of difficulties. If you want to take it to the next level, check out this list: http://healthland.time.com/2012/10/08/6-breathing-exercises-to-relax-in-10-minutes-or-less/
Rock it Out
Anyone who knows me knows that I am pretty obsessed with music. Gotta have music when I drive, sometimes I’ll put Pandora on and let the kids dance around, I love concerts. Music is a powerful thing.
Think about it: you listen to that one song that reminds you of a person or place in time and it’s like it brings you right back. There is music that can bring you happy thoughts and memories and there is music that can calm…I know everyone has that song or songs that can calm them down.
More recently a lot of work has been going into studying the effect of music on the human brain. I’m sure by now we’ve all seen the video of the old man in a nursing home who can’t even remember his own daughter, but when they play his favorite music, he sings and becomes far more responsive than he was. Music has been shown to unlock memories that sometimes we think have been lost, whether that’s through time or illness.
So I encourage you to take that time and let music set you free. If you’re going for a hospital stay, pack some music with you on an mp3 player. If you can’t do that, step away for a few minutes, lock yourself in your car, and listen to some music. It’ll be like a nice re-set for your mind.
Get a Hobby Already
Work work appointments work appointments clean up barf work work appointments laundry dishes cooking work work clean poop work. That’s life, right? We run ourselves into the ground doing things that – while important – are depleting our energy and we don’t make time for ourselves. Get…a…hobby. It’s not a selfish thing to do. It can be anything: play basketball, learn an instrument, collect stamps, learn to breakdance, master the unicycle. Whatever, just do it. If you know me, you also know that my addiction to coffee is right up there with my obsession with music. For the last few months I’ve begun roasting my own coffee beans at home using a popcorn popper. I order the beans raw from a supplier, and when I want some coffee, I take my popcorn popper outside, roast the beans, and the next morning I can grind up some super-fresh coffee. You just can’t get it any fresher! And it makes a world of difference…plus the roasting process makes your clothes smell AMAZING. I really enjoy the process of roasting coffee…it just makes me very happy, and when I drink a fresh cup and it tastes good, I feel very accomplished. And as weird as it sounds, I really enjoy just watching those beans spinning around in the popper, turning from green to brown. It’s a relaxing sight.
A hobby is a much better relaxing activity than sitting around binge-watching shows on Netflix (though that can be fun too) because it stimulates a level of creativity and provides a nice level of self-esteem. And I don’t know about you, but that sounds like a really great thing.
But Wait, There’s More
I could go on and on with all of these self-care ideas, but I don’t want to make you cross-eyed: so I encourage you to do some more research on the interwebs about things to help you relieve stress and relax. Look into things like mindfulness and guided imagery. Maybe acupuncture is for you. I know the life of a heart parent, heck ANY parent, is a stressful one. I’m not saying you shouldn’t be concerned about things. But for right now, you are your child’s best advocate and their companion along this long journey. The reality is, if you don’t stop and take care of yourself, you’re going to break down, you’re going to get sick, or worse. Don’t let your heart warrior go at it alone. Give yourself all the best shot of success by taking time out for you.
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:
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.
Ok so am I the only heart dad out there whose kid (feeding tube or not) is kinda like the Borg from Star Trek? Yes…I went there. Growing up I LOVED Star Trek the Next Generation…loved it. I watched it every night before bed and watched all the movies. For those of you who are all like “Oh Lord here he goes talking about space ships and lasers and chew-tabacca,” hear me out for a moment. So in Star Trek the Borg was this alien hive mind, so to speak, who would pretty much obliterate other alien peoples and assimilate them into their hive, implanting robot parts into their body. Sorta like Pimp My Ride but with aliens…and body parts.
So where am I going with this? In Star Trek the Borg were by far the most fearsome enemy because they had powerful weapons AND they would acclimate to any weapons you threw at them. Shoot em with a phaser? Yeah it will kill 3 or 4, but then they would all acclimate and it wouldn’t work anymore. So you had to keep changing things.
Yeah, that is SO Nolan when it comes to eating. He’s like a little 20-pound Borg without the robot parts. I remember when we started this tube wean journey, he was tearing up some Banana-Mixed Berry baby food. That purple gloppity goop was his favorite, and I could get him to relatively eat the mess out of it. It became my go-to food whenever he wasn’t cooperating with something new. But then Nolan went full Borg and was like “Pfft…that don’t work on me, pops!” Then it got to the point where he flat-out refused to eat anything we gave him, even if it was like chocolate pudding or cheesecake. I mean C’MON SON, you gotta want that stuff right? Nope.
So there was a time there where we fought with him and he shook his head for everything we tried to give him. It was kinda like Star Trek First Contact (great movie, BTW). It was a struggle and sometimes you just wanted to jump out of your chair and be like:
But then…THEN something shook loose, and I honestly can’t tell you what it was. Now he’s back to eating a little better and even trying new things like crackers, mashed potatoes, peanut butter cheesecake, etc. And he’s not taking in any PediaSure at all, which is a major win. So why the change? No idea. Am I afraid he’s gonna go full Borg again…absolutely.
So tell me, Heart Parents: do you struggle with this? If so, how do you hold back the Borg invasion?
Hey fellow heart parents! Listen, we all know that life is tough with juggling our heart warriors’ needs, work, play, school, etc. So this post isn’t meant at all to focus on those things…in fact, today’s post is to help us all remember to take a step back and smile and laugh a little bit in spite of some of the challenges in our life. So let’s take a minute and think about the first time people (whether family, friends, or strangers) met your heart baby. You know people are well-meaning but at times their responses are….well…a little interesting. With that in mind I took the time to create something that I hope will make heart parents laugh just a little….behold: Heart….Parent….BINGO!
Unless you’re uber-sensitive, I’m hoping this little game at least makes you crack a smile. Now don’t get me wrong, this isn’t meant to offend the well-meaning, friendly people in our lives: God knows they’re trying their best. But come on: we’ve all heard some of this stuff, right?
So as you go about your week and you run into people who tell you things like “Oh he’s better now, right?”, instead of sighing, you can think about your BINGO board and check one space off. I’m a big believer that in spite of our difficulties there’s always a bright side.
Alright Heart Parents…who will win BINGO first this week?