It's Not About Me

When we first found out about Elodie's hydrocephalus, and what they thought was holoprosencephaly, I went into some pretty heavy grief really fast. I had what are probably fairly common thoughts of "why me?" and "what did we do to deserve this?" I even asked my mom this question one day. I considered that maybe we joked about our friend's kids too much, or maybe I was being punished for gossiping with my coworkers about some of the kids we work with. Obviously I was just a bad person and this was my sentence.

After Elodie was born, and as time has gone on, I have realized these thoughts were incredibly flawed for two big reasons. First and foremost, Elodie is not a punishment. At all. In fact, she is the greatest gift I have ever received. I look at her and thank my lucky stars every day that I get to be her mother. If you have followed the story of Baby Shane at all, who was born and passed away yesterday from anencephaly, then you too are probably inspired by his parents who carried him to term knowing he wouldn't survive. I definitely counted my blessings a few times yesterday. Will we have some challenging moments? Yes, of course. But that's just part of life. We are never guaranteed our health, and God forbid, I would never love Noah any less if something were to happen to him.

But the second big reason my thinking was so flawed is the thing I can't stop thinking about. Elodie's hydrocephalus and other issues aren't happening to me. They are happening to her. She does not deserve any of this, and it's incredibly unfair to her that she is going to have to live with this condition her whole life. She is the one who had to have brain surgery at two days old, and will most likely have several additional surgeries in the future. She is the one who suffers the pain of having her catheter changed every 5 days. She is the one who has twice daily Lovenox injections which sting her poor little thighs. She is the one who screamed in pain after she had to have three veins poked on Monday in order to get one vial of blood to check her Lovenox level. Yes, these things are hard on me too, but it's she who really suffers. It's not fair, for her. And my sweet baby definitely hasn't done anything to deserve this.

The lump in the back of her head is her shunt.

The evil catheter that makes her scream, and what we inject the Lovenox through.