Brooke's Stories, Parenting

Being a Heart Mom

Being a heart mom is hard.

There are days when you feel all alone on this journey with your child- when their diagnosis is unique or when you have to explain to someone what Tetraology of Fallot is- or ignore the autocorrect, when it thinks that “tetraology” and “fallot” are grammatical errors.

Then, there are days when you feel overwhelmed by all of the other heart babies out there. Days when you hear about another heart baby dying; about seizures and g-tubes and 2nd, 3rd, and 4th surgeries.

There are days of gratefulness to still have your child here, followed by, days of anger for what your child has been through.

Days when you feel guilty that your child survived, and someone else’s didn’t.

Days where you celebrate medicine and research and advanced technology.

Days where you could scream at the lack of research and funding and answers.

Days and weeks where you grieve for a stranger’s child.

 

Being a heart mom means making sacrifices and learning more about your child’s condition than WebMD or your local health professionals could ever tell you.

It means, leaving your job- your career- to care for your sick baby.

It means piling the medical bills up for another day.

Being a heart mom is about sleeping upright in hospital chairs; eating cafeteria food for weeks and celebrating O2 readings and heart rates.

It’s about multiple phone calls to hospital’s and doctor’s and insurance companies.

It’s about second opinions and hours of research and tearful prayers.

It’s about realizing that there is an a la carte menu of diganosis’ that accompany the main diagnosis and not one heart babies condition is the same as another’s.

It’s about fighting for research funding and proper surveillance of CHD.

It’s about questioning God one day, then praising Him the next.

It challenges your faith, your marriage, your finances, your parenting.

 

Being a heart mom forever changes you.

It is humbling.

It is terrifying.

It is exhausting.

And just as your heart warriors battle is indefinite, so is your battle, momma. You will find strength when you thought there was none left; you will find courage when you really want to cower and you will find hope in the shadows of darkness.

You were given this child for a reason.

Your child was given you for a reason.

 

You are an advocate; a nurse; a caretaker; a lifelong learner.

You are strong and humbled and courageous.

You are a heart mom.

 

strength verse

 

For more information on CHD: www.conqueringchd.com

For more information on Miles (the sour patch kid and my heart warrior), check out his page: www.facebook.com/teammileschd

 

 

 

2 thoughts on “Being a Heart Mom

  1. It’s so hard. I do cry for all the other stories. The losses bring me to my knees. I love my heart warrior, and apparently others too. A lot. It’s a little weird even. It magnifies my sorrow, but I just can’t leave them to stand alone in the fight.

  2. I saw one of your videos shared on Facebook today, I enjoyed it so much I decided to check out your blog. I am also a heart mama of a sweet 8 month old girl with Truncus Arteriosus. It’s so encouraging to find parents who have traveled a similar path with their child in the most unexpected places. Thanks for raising awareness and encouraging other heart moms. You are an inspiration.

    B.

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