Tuesday, June 23, 2015

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



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 out of 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 cliche responses from people looking on 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 always 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 unbelievable false. I do think certain things happen to us with purpose, despite how awful they might be. I also believe in random events and evil that is out there. 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 how I'm feeling in the NOW can be off putting and make some people want to turn away and I don't blame them.

I'm struggling.

But please, take a backseat to the advice 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.

If there is one thing that I have gained from all of this, which I'm sure there isn't only one, it's that I am more reserved with my emotions than I used to be. My husband actually thinks I don't cry enough... even as a hormonal pregnant woman.

I think I have this anger bottled up because I don't think people really understand what it's like to have a child with a congenital heart defect. How could they, really?

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



Holding her sister's hand and 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 get a little shaky and insecure.

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 comes back later.

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 outlive us.

8) This never gets easier to deal with. We live with the constant knowledge of could be.

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 brave so our kids can be too.

11) We get angry. We get angry that we are at a fight with CHD and it can be ruthless 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!!! Follow along on Instagram!

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