Friday, June 17, 2011

May 8th, 2007

That was the day that our lives were changed forever. Natalie was only 17 days old and diagnosed with a severe congenital heart defect called, "Tricuspid Atresia". Being told that your tiny daughter has only half of a heart is something you never forget. It's something you will always replay in your head.. sometimes on random shuffle.. some weeks you won't think about it at all. But when someone asks you about that day, the feelings rush right back in.

There were some things that have come to my memory since then..things I don't think I ever really mentioned before because they seem so minute.. .so unimportant at the time. But these are things I can't ever forget. If anything, my memory of that day sitting in the cardiologist's office is more vivid than ever before.

I remember thinking that her diagnosis meant that she was dying. I was holding Natalie, maybe too tight, thinking that she was going to die any second. Because the diagnosis was said outloud. Like, a huge bomb exploding and it was all a huge jinx. I remember just wanting to go home. It's not that I didn't want to talk to the cardiologist (who ended up being my favorite ever).. but I just wanted to go home and cry.

I remember the doctor looking exactly like a younger Colin Powell.

I remember thinking "this must be a nightmare..this isn't true.. maybe I never woke up this morning". I mean, I was really tired and went to this appointment on only a few hours of broken sleep.

I remember putting 2+2 together.. that her diagnosis explains why her feet were always purple. It wasn't because she had fair skin.. a reason I always used for people who asked me why they were so purple.

I remember blaming myself for that one bottle of beer I drank when I was unknowingly 3 weeks pregnant with her. And that one cigarette I had 2 days before I found out I was carrying her (I was almost 4 weeks along). I still blame myself for that one bottle of beer and that one cigarette. I think I always will. Even though I know deep down that that's not why she has half of a heart.

I remember staring at Google every night after her diagnosis.. getting more and more confused as to what was actually wrong with her. The diagram the doctor drew for us seemed to turn into nothing. It meant nothing to me for a few days. I couldn't even figure out how a heart even worked. I felt so f'in stupid. I kept accidentally reading older online articles and the words death and life expectancy were too relevant but yet I couldn't look away.
But you have to look away. You can't really focus on the WHY'S and the HOW COME'S because the real truth of the matter is that many of us may never know those answers. You can run the gamut from genetics and predisposition to environmental factors and bad habits. But you may never know why this happens. But there are so many things that you can do... and it all starts with being positive and being open and honest with how you feel. You have to talk about your feelings and frustrations until you're sick of talking about it.

It's okay to say "I don't know" when loved ones ask you questions you don't really have a solid answer for. I always felt like I had to have an exact answer when Natalie was diagnosed. I still don't have those answers and it's been 4 years. Will she need a heart transplant? Will she need another open heart surgery when she's older such as her 30s or 40s? Will she live to be in her 30s and 40s? Will she be able to have children? Will she need more medications as she grows up?

I don't know. And that's okay for now. One day.. on week... one month....on year.... at a time. 

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