Posts tagged ‘fear life strong ‘




How DO you do it?


I get asked that question a lot.  There’s no reasonable answer besides, I do it, I do everything because my child depends on me and needs me to do it.

If there’s one comment I can’t stand it’s, “I don’t know how you do it?  I could never do that!”  Yes, you could, should you have been presented with the obstacle yourself.  I had never heard this until I found out I was pregnant with a heart baby, but I absolutely love it!  “God never gives you more than you can handle.”  At first, I found that impossible to trust in.  How in the world am I supposed to be okay with knowing my child has a condition that she is forever going to have to live with?  How would I handle her dying?  How am I supposed to watch her go through (the scheduled) three open heart surgeries?!

I just do it.  Because I have to.  When your child needs their diaper changed, you just do it right?  Well, Ava just needs me to give her medicine twice a day.  She just needs me to hold her hands while waiting for surgery and while recovering.  She just needs to me give hugs and extra kisses for make her boo-boos all better.

“How do you do this, how can you be so strong?”  Last time I checked, I wasn’t really given a choice.  There’s really nothing else to do but embrace everything.  Realize my child is sick, and will always need medical attention.  Realize she is going to need surgeries, and be there when they take her in, and be there when they bring her back.  It’s not to say I don’t have my days of crying and grieving and feeling guilty.  Yes, I said grieving.  Even though my child is here with me (and doing excellent!) I still have to grieve the fact that she is not well.  She’ll never have a life without periodic cardiology appointments and medication.  I have to grieve the fact that things are not so “perfect,” although in my eyes they are.

It struck me weird the first time I was called an “opportunist.”  I almost felt like I was doing something wrong.  This word can be used in both good and bad ways.  I soon learned I was the good kind of opportunist.  I embraced the fact that my child has a CHD, and realized I could either sit back and watch it go by or be an active part of it.  I chose to raise my voice a bit and make some noise on the issue!  I have written to the Today Show, I am organizing a fundraiser through The Children’s Heart Foundation, I have reached out to many other people in my situation, and I have many more ideas on how to spread some awareness and get this disease noticed! 

I believe that something good always comes of something “bad.”  Everything has to happen for a reason.  Although I would never wish this condition on any other family, each of them have been chosen for a reason.  I do not think that we are “cursed” with Ava’s CHD.  We are blessed.  I’ve met some of the most amazing people, I have a career goal, and I have a beautiful little girl who has taught me so much about life!

I don’t do it because I want to, I do it because I have to.  I’m so strong because my daughter has given me the strength to be that way.  How do I do it?  I’m glad the choice was never mine to begin with.

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2 comments July 21, 2010

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness

Congenital Heart Defect Awareness Congenital Heart Defects Life with a CHD Tricuspid Atresia Uncategorized

Life with a CHD

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