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How to be a Great Sidekick (A Father’s Day Post)

Hello out there, fellow Heart Dads! As we roll into Father’s Day weekend I didn’t want to let time fly by without dropping a post specifically for all the amazing Heart Dads out there.  You’re the reason for this blog and the reason it stays going!

We all know by now that our Heart Warriors are amazing: brave, courageous, fearless, strong, tough, etc.  They’re nothing short of superheroes:

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I don’t know about you, but Nolan inspires me on the regular with what he’s been able to accomplish in spite of all the challenges he’s had to face.  He’s a generally happy kid (when he’s getting his way), he’s extremely loving (like, face-crushingly loving), and he’s super smart.  But you know what they say: every good superhero needs a good sidekick.

Think about it…Batman had Robin:

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Sherlock Holmes (ok, ok, he’s more protagonist than superhero but whatevs) had Watson:

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And who can’t forget my fav sidekick Chewbacca?

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So then, who plays sidekick to the Heart Warriors? Guess what: it’s YOU, Heart Dad!  So how can you be an epic-level sidekick? Let’s check it out:

Be Brave

Let’s face it – and you know this by now – the Heart Dad’s job is not for the weak or the cowardly.  Is it hard?  Absolutely…really, really hard.  But you know what else is hard? Being on the receiving end of all those surgeries.  I can’t imagine what it’s like for our kiddos…they go through so much and a lot of times the best thing we can do for them is to just summon every ounce of bravery we have and be strong for them.  Tell them it’s going to be ok, tell them you’re there.  Being brave doesn’t mean a lack of fear, it’s facing the fear and pressing forward.  Yes, being brave is hard…but if your kid can do it, so can you: let them be your inspiration.  Being brave doesn’t mean to have a lack of emotion, rather I think it’s more brave to admit that you’re afraid or to admit when things are difficult, so don’t be ashamed!  The bravery you need is right there inside of you!

Be Strong

The famous sidekicks we all know and love are strong in a variety of ways: some are physically strong, some are smart, etc.  The strength I’m talking about here has nothing to do with how much you can bench press.  Rather, I’m talking about being strong in mind: take care of yourself during this long, difficult journey.  Know when you’re struggling.  Practice mindfulness and don’t be afraid to seek help…please take the time to read my post on mental health to find out how to take care of your mind as a heart parent.  You also need to be strong in spirit. I don’t think this is necessarily a religious thing, though I do recognize that faith and spirituality are very important to many of your and is important to being strong in spirit.  But I would also encourage you to be empathetic: put yourself in others’ shoes, or reach out to help those who are where you have already been.  Practice kindness: it’s so impactful to do something for others when you’re going through a tough time yourself.  Be grateful: when times get tough, write down the things you’re grateful for.  Find something you love to do, whether it’s writing, playing music, cooking, fishing, whatever.  Let that feed your spirit.

And, ok, yes…sometimes you do need to be physically strong too:

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Have a Catchphrase

You know which sidekick we’re talking about here, right?  Robin, the boy wonder. Dude was totally known for his catchphrases back in the day: “Holy ______, Batman!” Can you believe there’s an entire wikipedia article entitled “List of Exclamations by Robin”?!  Hilarious stuff, read it here on your own.  My favorite? “Holy unrefillable prescriptions, Batman!” Ah…so relate-able.

But no, I’m not saying you actually have to have a catchphrase (though I don’t discourage it). What I’m saying here is that to be a good sidekick for your superhero, you’ll need to speak up whenever it’s necessary.  Got questions when you’re in the hospital? Ask. Something doesn’t feel/look/seem right? Say something.  Think your kid’s doctor isn’t cutting it? Ask for another one. The voice of a Heart Parent is a powerful one, because while the clinicians are the expert in care, you’re the expert in your own child.  You do have a say.

Do you want to see CHDs eradicated in the future? Speak up – be an advocate?  Don’t know how? Visit the Pediatric Congenital Heart Association to learn how: while you can visit DC and speak with your representatives, calls and emails/letters are just as powerful.  If you’re one of my readers and you live in the U.S., you know that healthcare coverage is a massive issue right now, and no matter what you believe politically, you know that you have a critically-ill child that needs good coverage, not coverage that will be dropped due to a pre-existing condition.  If you want to fight for that, then speak up!  Use your powerful, Heart Dad voice to support your Heart Warrior!

Always Be There

A superhero isn’t gonna drag along a sidekick if they’re a burden.  They keep them on the team because they’re dependable, strong, and always willing to help.  That’s exactly what you need to be.  Yes, the journey is long and tough and it’s filled with bouts of confusion and anger and frustration, but at the end of the day your hero cannot fight this fight alone.  He or she needs their sidekick…they need you.  And they don’t just need you at the hospital or in the doctor’s office…they need you at home.  Get on the floor and play, eat dinner together, give lots and lots of hugs and positive affirmation.  They need you at school: read to/with them, be invested in their education, go to the freakin’ school plays…ALL OF THEM.  They need you out in the world: take them to see the world, do stuff with them, smile and run and laugh, make memories!

At the end of the day, when your Heart Warrior grows up, you’re not going to want them to look at you and say, “You know what Dad, you were a great {insert job title here}”….what I want to hear is, “You know what Dad…you’re always there for me.  You’re a great sidekick.”

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I want to wish all the Heart Dads out there a very happy Father’s Day!  I hope you have a really special day with your families, with lots of hugs and love.

Guest Blogs for Father’s Day Weekend

This is the 4th entry in my series on Fatherhood this month.  Enjoy!

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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

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”:

http://themighty.com/2015/06/to-the-stressed-dad-worried-about-his-childs-health1/

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”:

http://conqueringchd.org/5-things-you-shouldnt-say-to-a-heart-dad/

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Have a great Father’s Day!

Fatherhood in Fragility

This is the 2nd entry in my series on Fatherhood this month.  Enjoy!

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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:

Humanity

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!

Joy

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.

Resilience

 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.

Time

This sums it up:

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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.

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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.  

A Day in the Life of the HLHS Dad

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.

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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…

Tuesday

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:

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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:

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6am: Before I go, I need my coffee and a drinkable breakfast, aka the Mean Green Smoothie:

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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:

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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:

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I especially liked spending some quality time with my love:

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and, of course, we had time for more funny faces:

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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:

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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:

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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:

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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:

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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:

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Ohhhh yeaaaaah.

And for the next 20 minutes or so I allowed myself the time to sip some coffee, relax, and watch some Yankees baseball:

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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:

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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!

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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!

Be Our Guest

Hey friends!  This post is to update you on some really exciting news.  I was asked by the Pediatric Congenital Heart Association to volunteer as a guest blogger!  I hope they know what they’re getting into….just kidding.  It’s a great honor for me to join in the great work PCHA is doing.  My goal is to try and guest blog on their site once a month and I will link to their posts here on the blog.  This is a fantastic organization that can empower you to get more involved in the heart community.  So without further ado, please visit my guest post on the PCHA website and stick around to read some other content and blog posts, you won’t regret it!

http://conqueringchd.org/can-you-hear-me-now/

 

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Hey You, Don’t Forget About You

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.

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:

Healing Touch

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.

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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.

Aromatherapy

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.

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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.

Just…Breathe

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.

Breathing

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.

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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.

Coffee Roasting

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.

 

 

 

2014: A Year in Review

Can you believe 2014 is aaaaalmost over?  Goodness, it seemed to go by so quickly.  I have to say, this was one heck of a year for Nolan: he achieved so much and made so many great strides.  As a way of wrapping up Nolan’s year, I decided to make a little video capturing some of the highlights and fun moments:

A big thanks goes out to everyone who has read this blog, supported Nolan, kept us in your prayers & good thoughts…you played a big part in making 2014 an amazing year!  I think 2015 is going to bring even more exciting things!  On behalf of our family, have a very happy New Year!

Sometimes You Just Need a Laugh

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!

HeartParentBingo

 

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?