CHD – Hebrews 12:1

One in one hundred

On May 18, 2017

By now, you’ve probably seen Jimmy Kimmel’s emotional monologue where he talks about the recent birth of his son Billy. Within hours of his birth Billy was diagnosed with a severe congenital heart defect (CHD) known as Tetralogy of Fallot with Pulmonary Artresia. At three days old doctors at Children’s Hospital of Los Angeles performed open heart surgery on Billy to repair one of the defects in his heart. Some time in the next six months Billy will face another open heart surgery and then later in his teens he’ll need another less invasive procedure to further repair his heart.

I was glad to hear Jimmy share the story about his son’s CHD. It gave CHDs a moment in the spotlight. For a few days everyone was talking about CHDs and writing about CHDs. I’m sure it prompted a surge in contributions to CHD related charities. But the thing is… CHDs have been and continue to be the #1 form of birth defects – affecting 1 in every 100 babies born. It continues to be the #1 cause of infant deaths in the U.S. Every year 100-200 children die due to undiagnosed heart defects. There currently is no cure for CHDs – only palliative surgeries and treatments. CHDs need more than just a moment in the spotlight. The CHD community needs your support in an ongoing way – with a dogged determination to change this picture. They need you to help spread awareness. They need you to donate to organizations that support CHD research, funding, and legislation. They need you to know that for every story that hits the national spotlight there are 1,000 other children fighting CHDs that need your help.

So here is what I’m asking you to do today. First, share this blog post. Share it on your social media. Share it in conversation with friends. Share it so that everyone understands the fight that is being waged against CHD. Second, I need you to give. This Sunday, Tony Alger, Max Fort, and I will be racing in the Ironman Chattanooga 70.3 triathlon. And then in September we’ll be racing Ironman Wisconsin together. We race because we enjoy the challenge. We race to honor warriors battling CHDs and angels whose fight is over. And we race to raise awareness and money for oganizations like the Pediatric Congental Heart Association (PCHA) – an organization that supports CHD education, research, and advocacy. Our goal is raise a total of $2,000 for PCHA between now and September and would like to hit $1,000 before our race on Sunday. Right now we’re $475 short of our goal for Sunday. Please join us in this fight with a tax deductible contribution to PCHA.

Racing for CHD Awareness and Funding

Took a wrong turn in Fly

By Norm

On April 18, 2016

In Faith

This past Saturday I set out on an ambitious 50-mile solo training ride. I had ridden 45 miles two weeks ago so it wasn’t the distance that concerned me. Well it did have me a little worried – I had some severe leg cramps in the last two miles of that ride. But what really concerned me was my back. After six weeks of relief from my bulging disc, I had really messed my back up last weekend and was still trying get over that. I took three days off from training this week and had eased back into it with a swim and ride on Thursday and a run on Friday and thought that I would at least try to ride on Saturday. I thought if my back starts hurting I’ll just turn around.

Happy Birthday to Witt

By Norm

On April 6, 2016

In WittsWarriors

WittYankees

This little guy turns six today! Many of you know his story. You know what he’s fought through to reach this milestone. You know how miraculous it is that we are able to celebrate this day. Hopefully you know how his birth and his life have changed the trajectory of my life and led me to faith in Jesus Christ as my lord and savior. You know how his courage has motivated me to do things I never dreamed possible. God has used this little boy to teach me so much in these last six years. I know from conversations with lots of people over the last six years that his story has touched many lives. If Witt has touched your life would you help me in wishing him Happy Birthday?

Your praise will ever be on my lips

By Norm

On March 7, 2016

In Faith

6531

This morning I’m standing here in the doorway of Witt’s room at Vanderbilt Children’s Hospital waiting on the coffee to finish brewing across the hall. As I stand here I realize that just down this hallway is room 6531. And in the background I hear Aaron Shust’s Ever Be playing in the background and I was brought to tears.

Faithful You have been and faithful You will be
You pledge Yourself to me and it’s why I sing

Your praise will ever be on my lips, ever be on my lips
Your praise will ever be on my lips, ever be on my lips

…

You will be praised You will be praised
With angels and saints we sing worthy are You Lord
You will be praised You will be praised
With angels and saints we sing worthy are You Lord

You see five years ago when Witt was just a baby he was in room 6531. He was two months old and the cardiologists had recently discovered that not only was his aortic valve not working properly but his mitral and pulmonary valves were leaking severely. The doctors were optimistic that they could improve the function of his heart with medications until he was a little older and then they would surgically repair them. We had been in the hospital for about five days and things seemed to be looking up. In fact, the doctors told us on rounds one morning that they would work on getting us home soon.

But then a few hours later as Alison was trying to wake Witt up for a feeding she began to scream “HE’S TURNING BLUE!”. At first I didn’t believe her but then I saw it too. Our nurse wasn’t in the room so I ran out of the room and down the hall trying to find someone to help. I grabbed the first nurse I could find and she and I ran back to room 6531. She needed help so I grabbed the oxygen and did everything I could as she instructed me. We dialed 1-1111 – the Rapid Response line and continued to try and stabilize Witt. Before we knew it the Rapid Response Team descended upon Witt’s room and took over. They ushered us out into the hallway where a wonderful nurse – Heidi Bean – calmly explained what was happening and what they were doing for Witt. She explained that they would be transporting Witt to the ICU where they could better care for Witt. In that moment I was completely overwhelmed with fear.

But as I stand here, in this doorway looking down that hallway at room 6531, thinking back to that day I remember how the fear gripped me. And I thought to myself “What if in that moment I could see my life now? What if I could see how God would bless me and bless Witt over the years that would follow?”. Of course I couldn’t see that and as I stand here I can’t see what the next five years will bring but that’s ok. Because standing here now I realize that God is always great and HE knows the plans that he has for me and for Witt and HE knows that those plans are for a future and a hope. And for that praise will ever be on my lips.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Jeremiah 29:11

I don’t wanna go through the motions

By Norm

On February 25, 2016

In WittsWarriors

If you had told me four years ago as I stood at the finish line of the first Witt’s Warriors challenge – a 5k mud run – that I would go on to do a marathon or a triathlon I probably would have said that you were crazy. Not surprisingly when my buddy, Tony Alger, approached me back in 2013 and said “I’m gonna do an Ironman next year and you should do it with me” I think my response was something along the lines of “Heck No! Are you out of your mind?”.

I Tri for Heart Kids

By Norm

On February 14, 2016

In WittsWarriors

The 2016 Witt’s Warriors challenge is still seven months away but it has been in my sights since June. I’ve read five books trying to understand what it will take to reach this goal and meet this challenge. I’ve been training for nine months already. I’ve logged 2,400 miles of swimming, running, and cycling just to reach the fitness threshold I need to begin a training plan. In the months ahead I’ll be training 10-15 hours each week. Sounds crazy right?

Well as I said in my last post, Witt’s Warriors is about challenging myself far beyond anything I’ve ever done. This year’s challenge will certainly do that. It will be tougher than any physical challenge I’ve ever faced. On September 25th I’ll be competing in my first Ironman Triathlon – a 2.4 mile swim, 112 mile bike ride, and a 26.2 mile run. I’ll be racing Ironman Chattanooga to raise awareness of Congenital Heart Defects – the leading cause of birth defect associated illness and death in infants. I’ll also be raising money for Mended Little Hearts of Nashville. Mended Little Hearts is a national volunteer led non-profit dedicated to providing hope, help, and healing to heart patients and their families. If you would like to support me in reaching my fund raising goals you can make a tax deductible donation through my fund raising page.

Honestly, this challenge scares me. But over these last four years I’ve learned that we’re capable of doing far more than we think we can. I’ve learned that we let fear keep us from doing the great things that we dream of. I’ve learned that motivation and inspiration can help you overcome your fears. And I’ve learned that when you overcome your fears and you do something great that it changes you forever.

Witt’s Warriors

By Norm

On February 9, 2016

In WittsWarriors

Four years ago, I had just hit forty and was sitting on the couch growing more and more frustrated with my inactive lifestyle and growing waistline. I looked everywhere for motivation but came up empty everywhere I turned. Then one day I saw an advertisement for a Warrior Dash race. For those that aren’t familiar, the Warrior Dash is a 5k (3.1 mile) muddy run through an obstacle course. It looked like a lot of fun but for someone that couldn’t even run to the mailbox I thought that the race might be too challenging for me. But that’s when I saw that the race coincided with the 2nd Anniversary of Witt’s life saving heart transplant. Remembering the fight he had been through and how he courageously fought that battle I knew that I couldn’t back down from the challenge of the Warrior Dash. So I registered for the race, recruited some good friends to join me, started a Couch to 5k training program and Witt’s Warriors was officially born.

WittsWarriors

Hebrews 12:1

"Let us run with endurance the race God has set before us"

Tag: CHD

One in one hundred

Took a wrong turn in Fly

Happy Birthday to Witt

Your praise will ever be on my lips

I don’t wanna go through the motions

I Tri for Heart Kids

Witt’s Warriors

Witt’s Warriors

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