Written by a CHD warrior and a heart mom – this gives you some sort of perspective of what it is like to live with a CHD from an adults standpoint. I often wonder if Kaston thinks the same way.

From their perspective:

It’s always wondering “why me?”

It’s looking at others 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 the 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 headaches and nausea.

It’s the pain.

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

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

It’s taking deep breaths that hurt.

It’s having to do breathing treatments.

It’s the cost of the medicines, the cost of the doctors.

It’s fear.

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

It’s the fact that you see how hard your spouse, parents, siblings, children want to help but cant.

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

It’s the depression that no one understands.

Its’ the days you spend in bed because you’re so exhausted for no reason.

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

Its’ the love you get from strangers.

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

From a parents perspective:

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 strength mentally and emotionally.

It’s trying to balance being overly cautious with not cautious enough.

It’s the constant Praises to God for giving us a chance to love a little boy 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 a positive light, always.

It’s the out of nowhere blood pressure drops that cause 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.

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