Inaugural Heart Walk

"Be strong and let your heart take courage,
All you who hope in the Lord."
Psalm 31:24

The Congenital Heart Walk is a national fundraising event series benefiting the Adult Congenital Hearts Association (ACHA) and The Children's Heart Foundation (CHF). The events are intended to honor and support those affected by congenital heart disease.

The FIRST EVER Nashville Congenital Heart Walk raised $54,055, which more than doubled the walk's original goal of $25,000. The Lionhearts were the top fundraising team and had five of its members inducted into the Golden Heart Club for raising more than $1000 individually. (Ayden was among those inducted for raising $1,591.) We had 38 people representing our team at the event and many others representing our team across the country. The Lionhearts' fundraising grand total was $11,131!!! YES!! AMAZING!

$1,591

$1,59We had 38 people representing our team at the event and many others representing our team across the country. The Lionhearts' fundraising grand total was $11,131!!! YES!! AMAZING!

We had a rainy day, but it was an awesome rainy day!

We cannot say enough how grateful we are to all of you for your support and encouragement! The past few months have been a beautiful adventure! TO GOD BE THE GLORY! HE DOES AWESOME THINGS!

Please keep spreading congenital heart defect awareness! Awareness creates funds for research, the kind of research used to help our children. Thank you!

Blake and Lauren with their grandmothers

Nashville Congenital Heart Walk Awards 2015
Most Money - Team: Lionhearts ($11,131)
Most Money - Individual: Tracy Armstrong
Most Spirited: Neyland's Pacemakers
Best T-Shirt: Team Isaac
Most Participants: Paul's Heart
Youngest Walker: Team Lawson

Ayden & Jude

Bryan spoke at the event. Below is his speech:

"The only guidance I was given is to 'bring home the mission' of the walk. I think the best way I can fulfill that task is to make a series of confessions.

First, I must confess my presence here before you representing the Lionhearts is in no way indicative of my level of contribution to the team. Our team represents three families who have been directly, and even tragically, affected by congenital heart defects. I am only one of six parents, not to mention grandparents, siblings, and other family members. I am not here to take credit for their efforts. And, what has been amazing and inspiring to me is that the success of our team is not solely due to three sets of families. What I find most encouraging are the efforts of the friends who have taken up our cause when they did not have to:

-The family of five that held a yard sale, and sold donuts, and established personal fundraising goals for themselves that they set out to meet.
-The online retailer that took it upon herself to set up and run an auction that raised almost $1000.
-The long list of friends who donated the items that were auctioned off.
-The young boy who decided he would get up early one cold February morning to stand outside and sell coffee to his neighbors. He raised over $300.

These dedicated families and loving friends who make up our team are why I am standing here. For those of you who are present, thank you.

I also want to confess I am a terrible story teller. I am prone to say too much, to give too much detail. I tend to be too focused on what I am saying, rather than how I say it. I could have tried to tell you the story of my son, Ayden, but I know I can’t do it justice. So, instead of a telling his story, I have a list I would like to read to you:

-1 cardiac ablation
-1 diaphragm plication
-2 electrophysiology studies
-2 ECMO connections
-3 cath procedures
-3 heart surgeries
-4 chest openings
-4 pacing studies
-4 swallow studies
-5 combined ED/unscheduled clinic visits
-6 SVT episodes
-At least 7 blood transfusions
-8 intubations
-11 chest tubes
-At least 30 NG feeding tubes
-At least 45 sticks for blood draws, IV lines, PICC lines, and other access lines (and this is probably way too low of an estimate)
-48 minutes of CPR
-70 hours of life support
-At least 150 days in the hospital
-countless ECHOs, ultrasounds, EKGs, blood pressures, lab tests, cultures, x-rays, etc.

All of that happened before he was 2.5 years old. In some ways, that list is Ayden’s story. Or, part of it, at least. Either way, his story isn’t over. Now he’s five. He goes to school. He runs. He jumps. He laughs. He cops an attitude. He tells people exactly what he is thinking. He plays baseball.

(He loves baseball, by the way. He tells us he’s going to be as good at baseball as Michael Jordan was at basketball.)

Unfortunately, the sad truth is there are too many children born with heart defects whose stories end all too soon. I know the very real and immediate fear of losing a child, because I have lived that fear. For me, that fear has not been realized. But for too many families, it has.

Which leads me to my last, and most troubling, confession.

Six years ago, I did not know congenital heart defects existed. How is that possible??? How could I have never heard of them? How could I have never heard of something that is more common than childhood cancer, and more deadly? How could I have never heard of the most common category of birth defect? How could I never have heard of the leading cause of infant deaths in the United States?

My blissful ignorance was shattered at a 20-week ultrasound 5.5 years ago. That ignorance, maybe more than anything else, is why I am standing here. There is not enough awareness. And because there is not enough awareness, there is not enough money for research. And because there is not enough money for research, too many children’s stories end too quickly.

So, I will end where I began. I am grateful for this opportunity to help increase awareness and funding. It is my very personal hope and prayer that this event, and others like it, do nothing but grow and grow, so that mortality rates go down and quality of life goes up.

Actually, I lied. I have one more confession. Even knowing all of the things I now know, and why I know, I wouldn’t change anything. Ayden is who he is. His story is his own. And it is inspiring. And miraculous. I can’t imagine him being anyone else.

Here’s to helping create more stories like his. Thank you."

 

 

 

 

 

 

 

 

  

 

 

 

 

Our Family with Dr. Markham

 

 

 

 

 

 

Lionhearts in NYC!

Lionhearts in Texas!

Lionhearts in other parts of Tennessee!

 

#thisismotherhood

I was blessed to be part of a photographer's project called #thisismotherhood. The photographer, Crystal Freemon, takes photos of local mothers and allows them to tell a short story or anecdote about their motherhood. The following was what I wrote for this very cool project:
"When I was pregnant with our first child, I envisioned motherhood to be precious giggling and gut wrenching crying, snuggles and tantrums, victories and struggles. I knew there would be late nights and early mornings, ear infections, scrapes and bruises, and poopy diapers. I knew there would be middle school angst, relationship drama, and many firsts.

When my husband and I went for the 20-week ultrasound, I was holding on to what I thought I knew and waiting to hear—Boy or girl? A boy? YES!! With half of a developed heart… Wait. What?

In that moment, I didn’t know… A WHOLE LOT.

I didn’t know our son’s smile would mean so much. I didn’t know I would bang my car steering wheel and cry out to the Lord for Strength and Peace. I didn’t know that we would have to be content with holding our son’s hand when we couldn’t cradle him in our arms, that we would watch him fight the nurses during a PICC dressing change, that I would cheer so loudly for a successful extubation,  that we would get up overnight to tube feed him, that we would see blood in his stool, that we would watch him crash to ECMO.

I also didn’t know that I would ever feel so much Hope. And with every passing day over the past five years, I am reminded daily of that Hope. I see Hope as our son runs the bases in baseball. I hear Hope when he sings “Amazing Grace” at bedtime. I marvel at Hope when he tries his first cheeseburger. I observe Hope as he makes tall Lego buildings with his younger brother. I feel Hope when our son wraps his arms around me and tells me, 'I love you, Mommy. I will never stop loving you.'

I still don’t know A WHOLE LOT, but I am forever changed by what I have experienced as a mother. I anticipate that the connection I feel to our two little boys will continue to mold me and craft me and teach me…  and most definitely ground me in Hope."