Posts tagged #congenital heart disease

What a Parent of a Congenital Heart Warrior Wants You to Know

I wrote this blog post about 2 years ago but in honor of CDH awareness I thought it would be a good repost.

For the most part I try to be optimistic, but I can only be that way for so long until something breaks inside of me and I am just pissed. I get angry when people say the wrong things even though it's with the best intentions and love.

We recently discovered our soon to be third little girl has a heart condition just like her older sister. I got through the crying and depressive stage pretty fast but the anger side of grief is not ready to pass. I am tired of the responses from people looking from the outside in. I just really don't want to talk about the situation but people want to push and say things like "it will all work out" or "you've been through this before so you've got this" and "what doesn't kill you makes you stronger". These all seem like uplifting things to help a grieving parent but they don't help.

The killer one that really turns in my stomach is "God only gives us what he knows we can handle." As someone who has found Christ through my struggles, I find this statement to be false. I do think certain things happen to us with purpose, despite how awful they might be. Regardless, things happen that go beyond the laws of what we can handle and sometimes it does break us. It can break us in tragic ways where one takes their own life and it can break us in smaller ways, where one suffers deep down inside where no one else can see. This is not strength. This is change and not always for the better.

I know that how I'm feeling in the NOW can be off putting and make some people want to turn away. I don't blame them.

I'm struggling.

But please, put your advice aside and just be there when I'm ready to talk. Even if I am never ready to talk, that's okay because sometimes I can talk things out just on my own.

We recently raised funds for our annual Congenital Heart Walk in Chicago. This was the first year that Bella really understood what we were walking for and why. Yes, I walked at 38 weeks pregnant!

Holding her sister's hand as she proudly walked for herself!

What a Parent of a Congenital Heart Warrior Wants You to Know

1) Just because they've had corrective surgery does not mean they are cured.

2) The first time your child starts complaining of chest pain your world starts to feel like it's caving in.

3) We can be strong and make this look easy but deep inside we are screaming with anxiety.

4) As much as we try not to, we hoover. It's just something we do and we are always on the lookout for something so please don't judge.

5) We blame ourselves. Maybe just in the beginning. Maybe for years. We always question if there was something we could have done differently. Sometimes even after the guilt has gone away it starts to creep back.

6) This is a lifelong battle not just for our kids, but for us as a family and as parents.

7) We pray our children will out live us.

8) This never gets easier to deal with. We live with the constant awareness of the path ahead.

9) Strep throat and other illnesses are scary... Rheumatic fever can affect the heart even in patients that don't have any heart conditions. It can significantly complicate existing heart defects and conditions and all of this from the common strep throat.

10) We are fighters, too. We fight the feelings to cry, to freak out and rush to the ER when something goes wrong. We fight ourselves to stay calm and be brave so our kids can be.

11) We get angry. We get angry that we are up against CHD and it can be a ruthless fight and it impacts the quality of life in all members of the family.

12) It changes the family dynamic. It changes the way we are towards one child over another and everyone picks up on this. Everyone in the family feels this battle.

Thank you for listening and thank you for just being there:)

Baby number 3 is due in less than a week and I hope to have some cute baby pictures soon!!!

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Never Stop Praying

Do you ever just get that feeling in the pit of your stomach that the ball is about to drop? I do, a lot. Our family has had its share of stress. I can never just feel like things are right because at any time it can be taken away.

I get that feeling every year before Bella's cardiology visit. Each year I've been reassured that the world is functioning normal and it's just a symptom of my crazy anxiety.



This year it was not so reassuring. This visit, the annual visit is now increased to 6 months... that is never a good sign when the doctor wants to see you more often. I sat there listening to my husband's voice over the phone and the tears began to swell up. She wasn't doing so well anymore and the worst began to appear in my mind.

The loss of a child is the worst kind of loss out there and I can't begin to imagine the feeling. If this was only a fraction then it would probably kill me. Yes, I'm jumping to the extreme. Realization that this situation is getting worse, never to get better until a surgery, is frightening. The chest pains were not from a chest cold, they were a symptom of the worsening of her condition.

Sometimes you forget that you have a child with "special needs" like a heart condition. Sometimes you just think that they will grow up strong and healthy to an old age. You forget through all the normalcy and good times.

You take the normalcy for granted.


Sometimes I blame my lack of prayers in the past year and a half. There shouldn't be blame in this situation. I can't help but feel accountability. I forgot how life was precious and to ask for God's grace and healing. It's those little things we take for granted. We need to not only pray when we want or need but when we are grateful and fulfilled or when things are going just fine.