Posts tagged ‘life with a chd life struggles ‘




Can anyone hear me?


Sometimes I wish there was a designated area for heart families to live, where we could feel at home surrounded by people who truly “get it.”  I have to admit, it is very hard to carry on in society with people who you rarely feel connected to.  You can never seem to explain just what’s going on.  You can’t make them see what you have to see.  There are no words to explain what you feel.  There’s just no way.  It makes me feel inhuman in ways.  I’m not just a mom.  That would be easier to deal with.  I’m a mom who has to take my daughter to the hospital and watch her be put to sleep with general anesthesia so a surgeon can tinker with the very fragile anatomy of her heart. 

It’s hard to be a person when you have such a weight on you.  And still, I lost Megan anyways.  I don’t know what I would like to do if I had a day to do.  Because I don’t.  I have a special needs child, and that has become the only part of my life that is definable.  It’s how I’m known.  And that’s really okay, except it’s really hard to be a person after you have the title of “heart mom.”  It’s truly hard to connect with anyone who isn’t a heart mom, because it changes every aspect of your life.  Its constant worry, constant anxiety, fear, hate, anger. 

It’s so easy for anyone to say “enjoy the time you have with your child.”  I shouldn’t have to worry about the day that my daughter is going to die.  She should bury me, the way life should work, but it is a very, very real possibility that I will be the one planning her funeral.  I don’t get why people can’t see that.  CHD is real, it’s your HEART, it’s what pumps blood through your body and makes you live, and our kids heart just don’t want to do that sometimes.  It’s hard to enjoy your time when your constantly planning for the next appointment, the next blood draw, the next procedure or surgery.  We live our lives around these dates and times.  Some days I can’t bring myself to touch Ava.  I hate it, but I just want to cry, and I wish I could hold her, but I don’t want to scare her.  Sometimes I just want to hide and blame myself. 

I remember when I was pregnant, and all I could do was hate myself for making a broken baby.  I still have days where that’s all I can do.  Plenty of women have healthy kids all the time, why me, why her?!  I don’t get why a “God” could punish you like this.  And I do see the blessing through all of it, I really do.  I have met amazing people, I have witnessed everyday miracles…but I just shouldn’t have had to be put in those positions.  It’s not fair.  It’s never going to be fair.  There’s just no way that I could look at this situation and see it as okay.  Ever.

I wish there words I could say, or scream, just to make one person who is not in my shoes understand.  I feel like it’s not possible.  I feel like the world is so against me having normal relationships with people who are not in my position.  And the weirdest thing is, although my husband has been right here through it all, I don’t even think he understands.  I just don’t see him struggling like I am, and I get angry when he can’t see why I’m struggling as I am.  Even my mom, who has been my hearing ears through all of this can never really get it.  I’m her mom, the closest person to her in this world, and I broke her heart before she was born.  It’s just so hard to make anyone understand.  I can’t stop trying, because I so desperately want someone to hear my words, and I want them to feel my pain.  It’s selfish, but it’s the only way I won’t feel so alone.

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7 comments November 15, 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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