Living with CHD...What does it mean to you?

Natalie on Christmas Eve

I was trying to find something to write about today when I came across a friends blog. The Synder family has been a huge source of information for us and an inspiration. Kaston, their son is 8 years old and lives in Amarillo. He has the same heart condition as Natalie. They had different surgeons but have the same doctor in Dallas at Children's, Dr. Zellers. Jamie, Kaston's mother has been amazing, because I have asked her all sorts of questions about things happening now or even things to look out for in Natalie's future. Thank you Synder Family for all your help.

Jamie posted this on her blog a while back. The post is written by another CHD (Congential Heart Defect) Warrior and Heart Mom. This gives you some sort of perspective of what it is like to live with CHD from an adult standpoint.

From their prespective:

It's always wondering "why me?"

It's looking at othes who are just like you, seeing they are worse, but still feeling bad.

It's no one ever understanding, you look good,, you look fine and healthy and when people see you they don't even know your sick.

It's them wondering why you're sitting out.

It's them wondering why you never do the normal things people your age do.

It's them thinking you are lazy.

It's them thinking you're cranky and need to get over it.

It's them knowing that you're sick and still wondering why the hell you're sitting down all day.

It's them thinking you're faking.

It's them not believing.

It's feeling so tired, and so bad, but you can't express the feeling to anyone, not even yourself sometimes.

It's worrying.

It's knowing that every day you could be getting worse.

It's never knowing when something will go wrong.

It's that feeling inside that something is wrong and fear of what now.

It's never knowing if the cough will turn into full blown pneumonia.

It's the scar, knowing you should love it, know it's there and it saved your life, and it's loving it. But wishing sometime that you could have just one picture without it.

It's the medicine you take every day.

It's the life style you have to learn because of it.

It's the side effects of the medicine, the bruises, the need to pee, and even the headaches and nausea.

It's the pain.

It's the rapid heart beats that just come out of no where.

It's the sitting still, breathing, trying to wait it out.

It's taking deep breaths that hurt.

It's the having to do breathing treatments.

It's the cost of the medicine and the cost of the doctors.

It's fear.

It's the emotions you feel watching your loved ones having to go through these emtions with you.

It's the fact that you see how hard your spouse, parents, siblings, children want to help but can't.

It's the upcoming years of knowing the long term affects from it.

It's the depression that no one understands.

It's the days you spend in bed because you're so exhausted for no reason.

Its the sadness you feel when you see others doing all the things you want to do, but are told no from your Dr.

It's the love you get from strangers.

It's the stares, the looks the ignorance from people who see you scar and try to figure out what the heck??

From a parent's prespective:

It's the "always there in the back of your mind."

It's celebrating the small victories and letting things go that don't really matter in the end.

It's the constant test of strenght mentally and emotionally.

It's trying to balance being overly catious with not catious enough.

It's the constant Praises to God for giving us a chance to love a little girl, He allowed us to keep on Earth.

It's the "I'm so sorry" look from strangers that see the scar and having to put it all in in a positive light, always.

It's the out of nowhere blood pressure drops that cuase your little one to fall to the floor.

It's the fear of the unknown future, yet rejoicing in the present.

Its the biggest challenge we have ever faced.

Its the biggest blessing we have ever received.