My little girl, Jillian, due Christmas Day has been diagnosed with Hypoplastic Left Heart Syndrome.
I feel like everything has caught up with me today. Emotionally and physically, I’m just worn out. I’ve tried to be strong for the last six weeks but… I feel like that’s slipping away.
I’m starting to realize that I need to be honest with myself: Yes, I’m optimistic. Yes, I’m hopeful. Yes, I believe we’re making the right decisions. But I’m also hurting. Deep down, this just hurts.
Through all of this, I’ve had amazing people come forward in support for us. I’ve met some people who have gone through this and other things parents shouldn’t have to go through, too. And while all of that makes me feel better, it can’t heal the hurt. It doesn’t get rid of the guilt I feel and it doesn’t ease the pain. It doesn’t make it go away and it doesn’t answer any questions. I’d like to say that my heart is broken, but I’ve been shown now, twice, what a truly broken heart is. I’d like to say that something positive has to come out of this, and honestly I do feel that way, but why does there have to be so much pain first?
I’ve asked myself a million times why this is happening? Why does this have to happen to my family? Why do all of my kids that have to go through this? Why does it have to be MY kids? Why does it have to be JR? And why does it have to be me?
It’s not like I’d wish this upon anyone else. But I wouldn’t wish it for myself, either. It all just seems so unfair. I hate to host my own pity party- truly I have tried my best not to- but really? Two babies with heart conditions? Wasn’t one enough? And why three or more surgeries this time?
What did I do to deserve this? Was there something that I was supposed to learn after Ethan’s surgery that I didn’t? Some lesson that I was blind to; that maybe if I’d understood would have changed all of this? Did I want a little girl too much? Did I wish too hard for another baby to make my family complete when I should have been happy with what I had? Why do I have to excitedly yet apprehensively count down the weeks until she is born? Why do we have to try to put on a happy, brave face everyday when really we’re mad and scared and hurt inside?
Why do we have to face the fears that our baby might not come home with us?
I just don’t get it.
The rational side of me says that it’s just something in our DNA. One of those crazy things where you have to have two parents who carry a recessive trait and twice now that recessive trait has been expressed.
But then there’s the other side of me. The side that asks all these questions and wants answers that aren’t based in science. Who cares if it’s genetics? The fact still remains that this is happening to MY family. The truth is, it will be MY baby that I have to watch fighting for life- again. Something so many people take for granted. I don’t blame them. After all, that is how it’s supposed to be.
A newborn shouldn’t be required to fight for their life. Ever.