August 2012: Cause Warrior Donnie Wilson

I’m excited to do an early release on this month’s August Heart Warrior, Donnie Wilson. Donnie is a heart dad and a creative type who is using his gifts to help advance the cause of CHD.  Up front, I want to promote a concert Donnie is giving this Friday.

If you live in Massachusetts, please attend his Donnie’s concert on Friday, August 3rd. Proceeds benefit Boston Children’s Hospital.

http://howtohelp.childrenshospital.org/events/pfp/pfp.asp?profileid=wd0032&eventname=rockthefightagainstchd

If you live too far away, please watch it streamed from here: www.lifeofdad.com
And you can make a donation to benefit Mended Little Hearts in support of the concert.

Now, please enjoy Donnie’s interview and follow him on Facebook and keep track of what he’s doing as a Cause Warrior for CHD kids and adults!

Amanda: As a writer/artistic type, I wrote *Heart Warriors* as a way to share my artistic gift with my Heartland community. Can you please discuss how as a musician you decide to share your artistic gift and what that means to you that is altered or different from your life as an artist before you became a Heart Dad?

Donnie:  I performed full time in the 1990’s as part of an acoustic duo and also as a soloist.  I played mostly in bars, but also toured colleges around New England.  It became a great way to help pay for college and graduate school.  After receiving my MBA from Bryant University in 1994, I started giving it a run with my original material with a band.  The reality became clear that I was a pop/rock singer living in a ‘grunge’ world, and without media outlets like Youtube, Facebook, American Idol, etc. I had to put the stuff in the car and drive to NYC.  That was not for me, so I hung it up, and got a job as a mortgage professional in 1997.  Not long after that I got married and subsequently started having kids.  Before this point, I just wanted to be a rock star!  I really thought I had what it took to play on the big stage, but I was never in the right place at the right time.  No regrets!!  I love my wife and my family, and music will always be part of my life.

It wasn’t until close to when Jacob was born that I started wanting to play and record again beyond playing Wiggles songs for my daughters (which was fun too).  When Jacob was diagnosed with CHD, seven months into the pregnancy, I was frightened like never before.  I was afraid for him.  I was afraid for my wife.  I was afraid for his sisters.  I was worried about our future as a family with this new challenge.  As we experienced the birth and then surgery the night he was born, I literally observed these amazing heroes as they saved the life of my son.

There was a HUGE shift in my mindset from one of FEAR to one of acceptance, faith, and determination.  Once I started to hear the stats behind CHD and the lack of awareness and funding, I immediately thought of using my new song, “Super Hero Fantasy” to help with the cause.  I never imagined that one song would transpire into an album, a yearly concert event, a seat on the National Awareness Committee for Mended Little Hearts, 1300 Facebook friends, working with Tom Riles across the US, and being asked regularly to tell my story and perform the song at fundraising events.

Now, it’s not about me.  Now, it’s about the cause of CHD and also about the message of how the human spirit can step up to help in a time of need.   It is clear that I was never meant to be a rock star.  I was meant to use my music for CHD.

Amanda: Your album is titled “Sedated Echo.” As a heart mom, I know what that phrase means in a clinical sense. To those who’ve never encountered those two words in the way heart parents have, can you explain the relationship between the title and the actual music?

Donnie: When I decided to make a 7 song album which included the single, “Super Hero Fantasy” I wanted to stick with the theme of CHD awareness.  I wrote all the music except for the lyrics to one of the tracks, and I recorded everything with a wonderful producer and musician named Alex Krepkikh.  Many of the songs were just ideas I’d had over a few years that I jotted down.  I hired a drummer to play those tracks, but we basically created a huge rock band sound with just two guys.  I played acoustic guitar and performed all the vocals, while Alex performed everything else.

Because of the big sound we create, it felt like I should have a band name on the front along with Jacob’s 3 D echocardiogram image on the front. Around the time I was creating the album, I was sharing Jacob’s latest “Sedated Echo” results with a good friend of mine.  He said, “that should be the name of your band.”  That’s all it took to call the album “Sedated Echo” even though I’m really a solo artist.  I need to credit my buddy for the idea.

Mostly all infants with CHD will need one or more echocardiograms and they need to be sedated to keep still enough.  I wanted my CHD friends out there to know where MY heart was with the music.  The songs are pretty positive in nature with some of them hitting tones of life’s challenges and the ability to over come.  I can’t say that all the songs relate directly to CHD and the title, but the message is positive.  I think I just wanted people to keep CHD top of mind. If they liked the songs and kept listening, every time they picked up the CD in their hands to put it in the player… there’s my son in the womb on the day of his diagnosis and the title, “Sedated Echo.”  I hope it keeps them engaged in the cause, especially those who have never heard of CHD.

Amanda: As an artistic type, I sought ways to bring my gifts to bear on my advocacy and you have too. Not everyone is artistic, but many people are passionate about a cause. As a Cause Warrior, what kind of insights can you give people who aren’t writers, photographers, musicians, etc. but have want to find their gift in order to share it? What vehicles do you know of that might help them get where they want to be to make a difference?

Donnie:  In my opinion, awareness and advocacy for CHD will always be a grass roots effort.  It starts with one person’s individual experience, and that person’s ability and willingness to share their story.  If you have a child with CHD your journey IS your story.  Can you tell your story?  Can you tell it in 60 seconds or less?  How about a 5 minute version of your story?   Due to the nature of my mortgage career being all referral driven, I’ve had to learn the art of networking over the years.  Most successful networkers are able to communicate their product or service in 60 seconds or less and then they follow up.  Follow up is the piece that’s not taught in college, and it’s probably the #1 thing that business people struggle with.  If you can commit to your follow up, you’ll succeed.  It’s that simple.

For those who aren’t writers, photographers, artists, or musicians, you can simply become great at telling your story.  As CHD parents, we cling to each other in times of need for support, guidance, friendship, and even love.  We need that!  However, when it comes to awareness, we need to get our collective stories in front of people who still have never heard of CHD.  Once you tell your story, and you follow up, you’re able to invite them into your world.   You’ve created awareness!  There are plenty of outstanding CHD awareness/support groups out there to get involved with like Mended Little Hearts of which I am member.  I would say to join a networking group by searching online.  Beyond CHD groups, you can also use vehicles like Business Network International, Rotary Club, women’s groups, etc. to better hone your networking skills.  Again, bringing others into our world is the key.

Amanda: What has been the most rewarding part of being a Cause Warrior and how do you maintain your energy?

Donnie: As a musician who always wanted people to request one of my own songs, it’s tremendously rewarding that people want to hear “Super Hero Fantasy.”   It is truly humbling how my son has brought music back into my life in a very profound way.  It means so much to me!  However, beyond the music and the traction we’ve created for awareness, there’s nothing more rewarding than meeting another CHD child and giving them a smile.  I recently visited a young lady who I met through Facebook as well as her mom working with MLH.  She is also a singer who is trying to make a difference with CHD awareness as she gets older.  She had to come to Boston Children’s Hospital for a procedure and evaluation, and they were basically up here all alone with no support other than the doctors and nurses.  I went up to visit her on a Saturday, and the 45 minutes we shared gave us BOTH comfort, encouragement, and hope.  I drove home saying to myself, “that is what it’s all about!”

As far as my energy goes, my wife and I work hard to stay healthy.  We have three children with tons of activities, and with our demanding careers, we rely heavily on organization and communication.  Our family always comes first, but CHD has become our mission as well.  You need to know when to walk away a bit from it.  CHD can’t rule our lives.  However, we work hard to arrange our time so we CAN make a difference.  Sometimes, we just need to rest, and that’s ok too.  Sometimes, I can’t make it to visit someone in the hospital.  The balance is delicate, but it can be done.  In the book, “The Secret” it talks about taking care of yourself to better take care of others.  Don’t put taking care of yourself in the back seat.

Amanda:  Is there anything else you would like to share with our readers about what you’re doing or opportunities for them to learn more?

On Friday, August 3rd, we’ll be having our third annual, “ROCK The Fight Against CHD” show in Massachusetts.   I’m performing with my uncle, Ed Violette for the first time in MANY years, and for those who have never seen us play, I think they will enjoy hearing the tunes they know done up our way.   I would like your readers to know that this year the show will be streaming LIVE on www.LifeofDad.com, a site started by comedian Tom Riles, who warms up the studio audience for Ellen DeGeneres.  He is truly a Heart Warrior as he’s done a ton for CHD awareness after he and his wife Lucy had their daughter Barbara who was born with CHD in 2010.  We’ve been working together for quite some time now from across the country.  We have big plans!

So, for those who can’t be there in person, they can still see the show and donate via a link to the National Awareness Fund for Mended Little Hearts.   I post most of what I’m doing on my own website, www.sedatedecho.com and you can also friend me on Facebook by searching for Donnie Wilson.

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Many thanks to Donnie for taking time away from his busy schedule to share his Cause Warrior story.  I hope you will watch his concert on the website this Friday!  I also love Mended Little Hearts.  They’re doing great things here in Colorado and are a wonderful resource for heart families who need a community of like-minded friends who know all about CHD from personal experieince.


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