I lose control in the hospital. I am her only advocate. I am the only one who really knows her. 

Every new person to walk into her room has to come to their own conclusions about my daughter. Most of them have never cared for a child with Apert Syndrome. 

There. I said it. 

My daughter has a craniofacial disorder called Apert Syndrome. 

I wouldn’t google it if I were you. I still haven’t. The internet is a frightening place of worst-case-scenarios and far-end-of-the-spectrum photos. But it is still true.

She won’t look like you and I. And to quote a neurosurgeon (not hers) from England – “Right now. This is the best she will ever look.”

I see Poppy. I see my beautiful smiling girl. I don’t see her syndrome like I did for a few hours… a few days after she was born. She looks perfect to me. But does everyone else see it? I don’t know.

I’m afraid to ask, and frankly, I don’t think I really care to hear.

There are so many things that could be worse in this world. This though, sometimes seems ultimately cruel. 

Back to losing control… The hospital is a double-edged sword. I have to repeat myself ten times over. I have to listen to and retain the words coming from countless mouths. If I’m not careful, they will strip me of my rights as a mother.

All of this while functioning on zero sleep, an often-empty stomach, and complete separation from the comforts of home.

I am feeling the dread creep up ever-so-slowly. 

Yes. I have a beautiful daughter. Yes. I love her with every aching beat of my heart. Yes. This is the hardest time of my entire life. But I will make it look easy because that is who I am and what I do. 

But right now, nothing is easy.Image

2 responses to “dread.”

  1. Liviu Mary Gurau Avatar

    She IS BEAUTIFUL! WOW! ~Mary


  2. Lisa Bock Avatar

    please join our Apert USA group on Facebook and friend me.
    mom to Ashley Age Eight with Apert


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