Posts tagged ‘life heart tears ‘




“It breaks my heart to feel her move.”


I was completely alone in my pregnancy, other than the broken hearted baby girl growing in my tummy, obviously.  I had the weight of the world on my shoulders, and the rest of the world just stepped out.  No one knew what to say to me.  First, I was pregnant at 18, and everyone knows when you get pregnant at a young age it’s contagious.  So, I lost a lot of my friends.  Then, I found out that I had a baby with a birth defect, and anyone who had been within earshot of me took another leap backwards.

Of course I had Ben, but either I didn’t feel like talking or I didn’t feel like listening.  We were never on the same page.  When we found out, and we knew that there was a possibility that this baby would not live, we didn’t know what to do.  He kept asking me, “Are you going to stay with me even if something goes terribly wrong?”  Something had already gone terribly wrong, and to be completely honest, I didn’t know if I was going to stay with him.  I didn’t know if I could bear to look at him all day everyday if the daughter we created together was not with us.  I know that is a time where you should be even closer to that person, but I didn’t know how I would go on if we didn’t have Ava to keep us going.

Friends called now and then, but when the topic came up, they suddenly “had to go.”  I remember about an hour after I found out, I made the first phone call to one of my friends.  Here’s a re-cap of our conversation:

“Hey, what’s up?”

“Something’s wrong with the baby’s heart.”

“What do you mean?”

“She has a heart defect…it’s pretty serious.”

“Oh, are you okay?”

“No.”

“Oh, well…. I’m sorry… I have to go.”

I didn’t even know what to do.  There I was sitting in the food court of the mall telling my best friend that my kid had a serious birth defect and I didn’t know whether she was going to live or die, and this person couldn’t take 5 minutes out of their day to listen to me cry? 

And I remember lying in bed with Ben shortly after we found out, and Ben went to touch my stomach and I pushed his hand off.  He of course pulled back and asked me why I did that.  This is all I could say, “It breaks my heart every time I feel her move.” 

I remember maybe a month after we found out, and after we got the results of my amniocentesis (on my 19th birthday I might add—some birthday present, huh?! Although, it was kind of a present, we found out that there was nothing genetically wrong, that this was a fluke and that there were no other identifiable health problems.)  My mother in law was searching the internet for “how to care for a child with a congenital heart defect.”  She handed us a few papers that briefly (and in no way accurately) described how much “extra” care we would need to provide.  After we had read over the article she says, “Are you sure you don’t want to put her up for placement?” 

When I was 8 months pregnant, a friend threw me a baby shower.  (Don’t get me wrong—it was a BEAUTIFUL shower, and we received so many gifts and so many prayers and we were completely surrounded by love.)  But, at the time it was not appreciated.  I was about to give birth to a baby that had the #1 birth defect related killer.  I didn’t know if she was going to live.  The thought of having to pack up all of this beautiful stuff killed me.  I didn’t let myself set up her crib until about 2 weeks before I was to be induced.  I didn’t want to look at all the cute stuff and imagine her wearing the outfits, or swinging in the new baby swing.  I didn’t want those thoughts to be taken away from me with something so final as death.  I didn’t want more stuff for me to dread packing away.  My mom pleaded people to buy something for ME and not for baby. 

I can’t even go into how all of these things made me feel at the time.  I can’t begin to explain the pain I felt, and the pain I still feel from some of these comments and occurrences. 

I spent the remainder of my pregnancy in bed, with bottles of water and tissues.  I’d cry for hours, I’d sleep for hours.  I’d wake up and eat something and go back to crying until I felt tired enough to sleep again.  It was an endless cycle of daytime t.v. and nick @ nite.  I am glad to say that I don’t really remember many of my thoughts from this time, but I do remember feeling guilty.  I remember thinking how could I, as a women, not be able to make a healthy baby?  How could my body mess up such a task…people have healthy children everyday all around me, so why couldn’t I make a healthy child?

P.S.

I wish I had known about the wonderful CHD community I have found online then.  I don’t go a day without thinking of many of the parents/CHDers/grandparents, etc. that I have met.  I have so much support and love there.  ❤ Heart hugs to all of you!

I have to add that my mother let me call her ANY time of the day or night and cry, or talk, or both.  Whatever I needed to do, she’d let me.  She’d listen, or she’d cry with me, or she’d talk, or she’d be quiet.  The only person in the world I could say anything I needed to was my mother, and it’s only now that I can truly understand a mother’s love.

16 comments July 17, 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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