Zipper Strong | CHD Awareness

February 13, 2017  •  4 Comments

 


I am the mommy of a child who is different.   All I ever want and need is for others to understand. To understand my family, to understand my son, to understand the hours of therapy, the meltdowns, and the uncertainty that we live with daily. To listen and not judge, not offer advice, and not extend pity, but to try understand us.


Two years ago, I had the privilege of meeting several families that have children with congenital heart defects.  Absently, I befriended them on Facebook and started to receive their updates.  That is when the raw truth of the struggles and the pain and the triumph and the heartbreak of these families was lain bare to me. Silently, I became intertwined in the lives and every update of several children born with broken hearts.  My own heart began to ache each time one of them caught a cold or had a complication, or turned blue from poor circulation. My own heart cried as I followed one family's anguish when the battle became too much for her 4 month old in the end.  Silently, I went with them to checkups, open heart surgeries, and ER visits.  I prayed through infections, replacements, strokes and codes.  But really, What can I do? what can I possibly do to make any tangible difference at all in these families' lives?  I'm sitting here on my computer with my two healthy kids with no comprehension of what it’s like to hand your child to a surgeon with nothing but percentages of success to comfort me. How could I possibly relate to a pregnant mother, with all the hopes of a new mom crashing down before her eyes, as doctors and nurses whisper in the hallway. What can I possibly do?

 

Then I realized, I can care.  Not just the pitiful kind of care where you shake your head and maybe shed a tear then move on to the next post. No, I can try to understand. I can listen. I can try to see these children how their parents see them--fragile and scarred, but brave and mighty. Broken, but perfect. I can attempt to put myself in their shoes to understand the hours in the hospital, the special directions, the last minute change of plans. I can listen and not judge, not offer advice, or extend pity, but just listen. Yes, I am an advocate and I fight for my child, but these parents are warriors that go to battle alongside their children as they wrestle monsters like fear, hopelessness, pain, and death with equal amounts of faith, hope, strength and love.They face decisions no parent should ever have to face, and they value every second of love and life because of it.  Their reality is different than ours, and this project is my humble and sincere attempt not only to understand the world of these families and children, but to give you a glimpse into their world, that you might seek to understand as well.  


This was the most difficult, but also the most rewarding project I've ever done.  Getting to know these kids and these families was absolutely priceless, and I am grateful that they allowed me into their lives so willingly. Please don't let their sacrifices of time and their brave transparency for this project go unnoticed! Please share this... share it on Facebook and Twitter, and Instagram and everywhere, and hashtag it #zipperstrong! If these stories and these images and these words resonate with you, even a little, please share this so that others can also hear and see their stories. Thank you.

SheRae Hunter

SL Hunter Photography

 

Click Here for Video Version

 


Maggie

2 Years Old

Loves animals, especially dogs

 

3 Congenital Heart Defects

 

“You can never prepare yourself… you feel so helpless  as a parent

because there is nothing you can do to change it. 

But then your child shows you how strong and brave 

they are…”

~Maggie’s Mommy

#zipperstrong 

 


 

Emilee

3 Years old

Loves cheeseburgers the best

 

Multiple Congenital Heart Defects and

9 Open Heart Surgeries

 

…After her last open heart {surgery} I looked at her big, beautiful lips and her cute toes, and I realized they were pink!  After 2 1/2 years, my daughter was finally pink! I’d never seen her with pink {skin} and at the moment I fell onto her bed crying tears of joy. I knew she was going to have a longer, happier life than the 3-5 years they gave us…”

 

~Emilee’s Mommy

​#zipperstrong  


Isaac

2 years old

Loves food. Quite a bit. 

 

 

Diagnosis: Hypoplastic Left Heart Syndrome. Feeding tube placed.

"When he cries, sometimes I smile because he was on a ventilator for so long, and he couldn't cry.  It's weird, I know, but I smile."

~Isaacs Mommy

 

 

 

 

Madeline

5 Years old

Loves to sing and loves to dance

 

3 surgical procedures, 2 of them, open heart surgeries  

“…How important God is as our foundation! And we are blessed beyond measure by having Madeline in our life”

~Madeline’s Mommy 

​#zipperstrong 


 

Colton

4 Years Old

Always smiling. Always

 

Diagnosis: Multiple Congenital Heart Defects 

 

“{we are} taking the good, no matter how

tiny, and the bad, no matter how big, as it comes. Have hope that {he} will 

overcome this…hope for a miracle”

~Colton’s Mommy (one year ago, during 

his toughest battle yet)

​#zipperstrong 


 

Caleb

6 years old

A fun-loving goofball always ready for a good adventure

 

3 Open Heart Surgeries,

countless additional procedures

 

“..our whole world changed, what we once thought of a certainty was long gone. We learned to appreciate every breath and moment..we value each other more”

 

~Caleb’s Mommy 

​#zipperstrong 

 


 

Kaylen

2 Years old

Treasures her poster signed buy the UVA football team

 

2 open heart surgeries,

the first at just 4 days old

 

“Handing our daughter off to medical staff…knowing they were

 going to stop her heart for the procedure..it’s the hardest 

thing we’ve ever had to do”

 

~Kaylen’s Mommy

​#zipperstrong 


 

Anthony

4 years old

Big fan of Micky Mouse

 

 

4 Congenital Heart Defects 

5 Open Heart Surgeries

“The best advice ever given to us? ‘You will have your own

normal, don’t worry about what other families do. You will establish your own normal…its okay to be a little different’ ’’

 

-Anthony’s Mommy

​#zipperstrong  

 


Emily

Age 7

 

Future Performer and Gymnast! 

Diagnosis: Atrioventricular Septal Defects &Hypoplastic left heart syndrome 

 

"CHD is the realization that our daughter is sick. It is the realization that we, as her parents may outlive her... [but] what makes me most proud is all the pride she has in being a heart hero"  

~Emily's Mommy (and Daddy)

​#zipperstrong  


Miguelangel 

Age 3

 

Always busy making sure EVERYONE has a smile on their face 

Diagnosis: Transposition of the Great Arteries 

"We are grateful for him, for each other, for family, and for our community. He is a reminder to be more compassionate towards everyone...we may not know what battles they may be facing"

 

~Miguelangel's Mommy and Daddy 

​#zipperstrong  


Daleigh 

Age 2

 LOVES chocolate. It's her favorite.

Diagnosis: Double Outlet Right Ventricle and VSD

 

"The hardest thing I've ever had to do was hand my 3 month old baby over for surgery." 

~Daleigh's Mommy

​#zipperstrong  


Nayleigh

6 months on Earth, forever an Angel Warrior. Her big brother and big sister pose beside her.  

 

 She was the sweetest, and could light up a room with her big beautiful eyes. She loved holding hands. She would sit there and hold your hand and as soon as you would walk away, she would start getting restless and crying for you to come back

Diagnosis: Hypoplastic Left Heart Syndrome

“What better way to keep her memory alive, but by always saying her name and hearing others do the same. We have many precious memories of her...We miss her so much every day” 

~Nayleigh's Mommy and Daddy

​#zipperstrong  


 

Finn

2 Years Old

Ask him to name 22 species of sharks. He will!

Diagnosis: Multiple Heart Defects

"CHD is a lifelong illness with no cure, surgery only helps [my son] survive. I avoid fear of the future by remembering that worrying does not solve tomorrow’s problems, but instead strips today of it’s strength."

~Finn's Mommy

​#zipperstrong  


Charlotte

2 Years old

 

Charlotte has a BIG family with 11 aunts and uncles!

Diagnosis: Ventricular and Atrial Septal Defect  

 

"Charlotte doesn’t have a zipper, and people assume that because she hasn’t had surgery, she isn’t that sick. Surgery is not a cure, and the struggles are still there with our without the zipper scar..."

~Charlotte's Mommy

​#zipperstrong  


Ava

5 years old

 

Ava is one determined little girl. And quite the little dancer!

Diagnosis: Tetralogy of Fallot w/Pulmonary Atresia

 

"When Ava started preschool they did not have an AED [Defibrillator]. That really stressed me out and my friends wanted to help. They collected half the cost of the AED and then shared a GoFundMe to finish collecting the money needed. It still makes me cry to think of their generosity"

~Ava's Mommy

​#zipperstrong  


Makayla

6 years Old

A happy, smiling little girl—that’s Makayla

Diagnosis: Hypoplastic Left Heart Syndrome 

 

"I don’t let little things get to me anymore knowing we have God’s protection over our Makayla…"

~Makayla’s Daddy

​#zipperstrong  


John

2 years old

 

Due to a rare condition, his heart is on the opposite side of his body!

Diagnosis: HLHS, DORV, Heterotaxy

 

"We appreciate every moment with him.  Literally every day John wakes up I greet him with a huge hug and I think ‘Yes! I get another day with my sweet John!’ He is perfect to us in every way, even with his special heart."  

~John's Mommy

​#zipperstrong  


Gwenyth

2 months on Earth, forever an Angel Warrior. Her little brother and big sister pose beside her.  

 

"We went to the Zoo with our 2 daughters when Gwen was 3 weeks old. She didn’t see anything because she was snuggled in her baby carrier,  but I know she heard a peacock! A peacock is a symbol of eternal life in Medieval paintings, so now whenever we see a peacock, we think of our Gwenyth."

Diagnosis: Truncus Arteriosus with Neonatal Alloimmune Neutropenia

 

"To cope with the loss of Gwen, I blogged …writing helped me to vent off some of the mess inside—finding words to detail the agony helped direct it outward instead of stirring it inside. It also always helps me to remind myself that I only feel this much pain because of how much love is there—ALWAYS there."

~Gwenyth's Mommy

​#zipperstrong  


Brayden

4 years old

 

Brayden is literally one of the coolest 4 year olds I've ever met

Diagnosis: Pulmonary Atresia, Dextrocardia, L-TGA and aVSD

 

"It was so hard to hand over my perfectly healthy looking baby for a procedure that I know will save his life, but make him much worse before it made him better.  To watch the Dr’s walk away with him in their arms almost broke me as a Mom.  The fear creeps in everyday, but if we’re having a good day I tell that to myself, ‘everything is ok right now’."

~Brayden's Mommy

​#zipperstrong  


 

Silas

9 years old

 

Future soccer player? or maybe an artist...or maybe both!

Diagnosis: Single ventricle left heart, L-TGA

 

During Silas ' second surgery , staph infection with MRSA was introduced under his sternum bone .. He became very ill... even to the point of death .. I had to literally open my hands next to his bed and tell God that He gave me Silas and He has the right to have him .. and that He would need to teach me to trust Him to live life without my precious Silas if He should chose to take him to heaven .. Silas was 6 months old.

~Silas' Mommy

​#zipperstrong  


André

2 months on Earth, forever an Angel Warrior. His best buddy poses with him. 

Andre’s eyes had an incredible depth to them - even as a newborn…like an old soul

Diagnosis: Hypoplastic Left Heart Syndrome 

"So many people are afraid to bring up our angels.  Its as though they think it will just make it more painful, or awkward, or remind us of our loss.  But it is such a GIFT when people bring him up.  I LOVE talking about Andre.  I LOVE hearing other people say his name. He's the best thing that ever happened to me.  I need other people to know that he's a part of me."

~André's mommy

​#zipperstrong  

 

 



 

 

Very Special thanks to the Shenandoah Valley Discovery Museum , Little Gym of Winchester and  Mended Little Hearts of the Shenandoah Valley. Without their help, this project would have been impossible. Thank you Megan Setzer, for the insight and the encouragement for this project, as well as the ideas. And last, but certainly not least, thank you to the families who participated in the project. I know it must have been difficult to share such intimate words with a stranger, and I know your time is precious.  Thank you, because you and your children are this project.  

#zipperstrong 

 

 

 

 

 

 

 

 

 

 

 


Comments

4.Lorraine(non-registered)
I cried as I read this. I have had two girls one with tetralogy of fallow who earnt her angel wings at nine months and one with double outlet right ventricle who turned 21 last month.
We always taught aehlish to be proud of her zipper(s) and last month her father walked her down the aisle wearing a beautiful off the shoulder wedding dress and five inches of her zippers were shown loud and proud. ( not to mention the scar on her back from her early shunt surgeries)
3.Beautiful just beautiful(non-registered)
My 7yo was born with HLHS has had 3 open heart surgeries and a pacemaker implantation.
2.Joe(non-registered)
Thanks for this! This is a message that needs to be told over and over again and you have presented in such a beautiful and real way that people will not forget. Even though I was once one of those CHD children they give me more inspiration than anything else in this world. Thank you for all your work on this project it mean so much to the CHD community.
1.Robyn(non-registered)
Great photos! As a kid with CHD, I get how hard this all is. It is great to see these kids happy and living their lives :)
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