CHD Awareness Week

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Apr 3, 2015
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Sorry, no Fiddleback photos in this post :) This week our household celebrates CHD (Congenital Heart Defect) Awareness Week and our little warrior Madden. Unbelievably, as many as 1 in 100 children are born with some degree of CHD. It took a long time to be able to share any personal experiences regarding Madden's and our family's journey, but I am proud to say it will be 5 years in April since his heart reconstruction surgery and he is thriving. I want to share this to bring comfort and awareness to anyone who may have a loved one or friend who may currently be experiencing a similar situation. There is happiness and hope with this never ending issue.

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Justen:

Children are a blessing and with Madden you & your family have been blessed twice over with his overcoming his CHD. Thoughts & prayers that he continues to grow & develop into a fine young Fiddleback Fanatic like his father.

Peter
 
Peter said it so well, I can only echo his words for you and your family. I believe I met Madden at last years Blade Show and can attest to his vigor.
 
Sorry, no Fiddleback photos in this post :) This week our household celebrates CHD (Congenital Heart Defect) Awareness Week and our little warrior Madden. Unbelievably, as many as 1 in 100 children are born with some degree of CHD. It took a long time to be able to share any personal experiences regarding Madden's and our family's journey, but I am proud to say it will be 5 years in April since his heart reconstruction surgery and he is thriving. I want to share this to bring comfort and awareness to anyone who may have a loved one or friend who may currently be experiencing a similar situation. There is happiness and hope with this never ending issue.

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Wow. What a great post. I'm glad you posted. Honored you posted. Your story with Madden is touching and I remember you mentioning it. Is there any way to donate a knife to some charity you support wrt CHD awareness week for them to raffle off? Is there someone you work with locally?
 
Thanks all! We really appreciate the support. Rick, that was Madden who you met at Blade last year, which he still talks about. Andy, thanks so much for the generous offer! We work with Children's Healthcare of Atlanta and Sibley Heart and they regularly have auctions or I could organize a sale for a donation on behalf of Fiddleback. I'll check into it and get back to you.
 
What an awesome kid Justen, he looks to be doing amazing. Childbirth is a stressful time all by itself; I cannot begin to imagine the added stressors from any complications during or after delivery. Please send him my best.

I hope you let him pick up a souvenir or three at Blade...you can't horde them all
 
Gent,
What a great story. Pretty soon you'll be trying to keep up with him on your hikes. I hope you celebrate with a new Fiddleback in April. Thanks for sharing.
 
My own little guy has battled a nearly fatal brain tumor. We are blessed as well that he is recovering and thriving also, and I know the struggle of watching your kid on this journey. It surely refocuses one on what is really important in life. Love them up! I do every day!!! Lots of hugs and laughter and pumpkin pie and ice cream. So grateful to read your story and know that your little guy is happy!

Mine is now 14. Now if only I can get him to stop claiming every single Fiddleback that arrives in the mail as his own! "That one is mine"...and away it goes!

T
 
Glad to hear all is going well for Madden Justen. He may be too young to drink, but later today I will raise a glass to Madden the young warrior, may he continue to thrive!
 
I am very sensitive to children suffering. Its because i don't think I am strong enough to have handled this with my own kids. I really respect the strength it takes to have survived such a devastating thing happening to your child. Much respect to y'all that have done so. You're most assuredly stronger in the soul than I am.
 
I am very sensitive to children suffering. Its because i don't think I am strong enough to have handled this with my own kids. I really respect the strength it takes to have survived such a devastating thing happening to your child. Much respect to y'all that have done so. You're most assuredly stronger in the soul than I am.

You are far stronger than you know. I'm quite sure Southern Gent will attest to it. You find the strength. You find whatever you need for your kids. Somehow somewhere you find a way. What often astounded me was that my child was consistently far stronger than I was through the entire process! Just looking at Madden...I see the same thing.
 
You are far stronger than you know. I'm quite sure Southern Gent will attest to it. You find the strength. You find whatever you need for your kids. Somehow somewhere you find a way. What often astounded me was that my child was consistently far stronger than I was through the entire process! Just looking at Madden...I see the same thing.

Very true words spoken here. While the experience as a whole is still very surreal to me, it never ceases to amaze me to look back in bewilderment that Madden went home from the hospital only 5 days after his surgery on nothing more than Tylenol. While he will have certain restrictions in this life and we continuously monitor his condition for any changes that may require more surgeries, we as a family have forged a strength of bond that no obstacles can break. I must also say that our experiences have given me a much different perspective on most everything I encounter in life and I find myself thinking trivial what I may have otherwise thought a great hardship or insurmountable odds. Stand firm, be fair and resolute in your decisions and thrive. Inner strength is within us all. It is our actions that determine if it will flourish or perish.
 
Thank you for sharing your story Justen. Glad that Madden has overcome such great hardship, and that everyone involved have been strengthened by the experience.
 
Thanks all! We really appreciate the support. Rick, that was Madden who you met at Blade last year, which he still talks about. Andy, thanks so much for the generous offer! We work with Children's Healthcare of Atlanta and Sibley Heart and they regularly have auctions or I could organize a sale for a donation on behalf of Fiddleback. I'll check into it and get back to you.

Very true words spoken here. While the experience as a whole is still very surreal to me, it never ceases to amaze me to look back in bewilderment that Madden went home from the hospital only 5 days after his surgery on nothing more than Tylenol. While he will have certain restrictions in this life and we continuously monitor his condition for any changes that may require more surgeries, we as a family have forged a strength of bond that no obstacles can break. I must also say that our experiences have given me a much different perspective on most everything I encounter in life and I find myself thinking trivial what I may have otherwise thought a great hardship or insurmountable odds. Stand firm, be fair and resolute in your decisions and thrive. Inner strength is within us all. It is our actions that determine if it will flourish or perish.

This is the strength I'm talking about.
 
It's been that week again where we get to celebrate our heart Warrior Madden and since this post was last done he has had a second heart reconstruction and is flourishing. For any of you who have had the opportunity to meet him you know exactly what I mean. So, Children's Healthcare of Atlanta contacted my wife after seeing her posts about Madden and they wanted to use some of his pictures on their social media accounts as well as some for their ads for Sibley Heart.

The first picture went up last night on both their FB page and Instagram. Both have almost more likes and comments then the last 5-6 pictures posted combined in a matter of hours! We're so proud of how he has gotten where he is today along the path he has traveled. In support of him and the millions of children out there with congenital heart defects please go check him out. Here are the links:

https://www.instagram.com/childrensatl/

https://m.facebook.com/ChildrensHealthcareofAtlanta/

You can also go to my Facebook page where I have posted both the links with pictures.


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Cheers!

Justen
 
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