I just saw another mother posting on one of my special needs support group that her 19 month old daughter smiled today–for the first time. This is something that we, I won’t say take for granted, but perhaps that we can lose as a point of reference with Esmé. She smiles so much. She always has.
This is her at two weeks old. It was not “gas” or a fluke. Look at her eyes. She was smiling.
Now she smiles so big that her face can’t handle it. And she laughs. She laughed silently for months before, at around 11 months, a little giggle escaped. Now she cracks up at things we do and things she thinks and things she sees.
It is one of the great joys of having Ezzy in our lives. Regardless of her struggles, she remains happy, she keeps us smiling.
When she is not smiling, however, it is like the world darkens a little bit. The thing is Ezzy only stops smiling when something is wrong.
And I have noticed in these darker moments how intense my anger is, how deep-down it is, how unfocused and all-encompassing it is…how raw and unintelligent.
You see, I am not angry for any part of Ezzy. I think she is perfect. I would not change a hair on her head. But I am angry about her pain and her fear.
I am angry at the apparent bliss and simplicity of other women’s pregnant bellies and new babies.
I am angry that Ezzy’s peers can go and play and learn at daycare…while she can’t even make it through a kindermusik class, despite so clearly wanting to participate.
I am angry watching people stare or avert their eyes as I feed my child.
I am angry that I have to spend hours on the phone trying to get insurance to pay for one hospital visit or the next.
I am angry that I feel we have to rely so much on others.
Ezzy’s smile is never gone for long, even when she is struggling. And just as quickly as my anger swells up, her happiness reminds me what is beyond that anger: love and total happiness. Anger is such an awful emotion. It does nothing but eat away at person. Sure, it sometimes helps me be a fierce defender of Ez, but it is nothing I couldn’t do with acceptance and compassion, with less harm to myself.
I feel like the anger isn’t always there–Ezzy’s smile distracts me from it. But I think it may be just hiding. I’d like to think I am a big enough person to go smiling through life…and in many ways I am more that way than ever.
You see, I know that so many new babies and pregnant bellies come after months, years of disappointment, sadness, and loss. I know that many parents wish they didn’t need to leave their children at daycare, no matter how wonderful it is. I know that people stare sometimes because they don’t understand–just as I didn’t 18 months ago.
I know that insurance—well, no, there is no excuse there. They deserve my anger.
And I know it is a tremendous blessing that I can relax into the people I rely on…so many others don’t have such a luxury.
I don’t want to be angry. I know folks say that it is one of the stages of grief, but from what I have experienced it is part of every stage of grief. Denial (and anger). Loneliness (and anger). Acceptance, hope (and anger).
But I suppose that is why Ezzy is the child I have. A better person might not need her smiles to help them through.
But I do.