There is a difference between complaining, and expressing distress. There is a line between empathy and sympathy that separates more than the two words – rather, it divides the special-needs sub-culture in half. I am GRIEVING. I am not feeling cheated, or wronged, or even (this could be shocking) chosen. I am feeling deep, emotional upset.
Some days I feel selfish and ungrateful for the secret feelings that sometimes well up, and out. I find myself counting every child’s fingers, staring at their perfectly round heads, their symmetrical faces. I do not wish to trade my sweet girl in for one with a round head and ten fingers – but I do wish she had been born without this syndrome – for her – for her suffering.
I mourn the child I thought I was having. The child that would stay, from the moment of birth, nestled against my bare chest. No need to ever be whisked away, poked, pictured, tested, splayed open, reconstructed. The child that looked like every other child we have ever seen – and why? Because we do not look at difference. We hide from it. We avert our eyes. We do not stare. We do not ask questions. Perhaps from fear, or uncertainty, or even disgust – we have learned our whole lives to look away.
As she grows out of her baby fat cheeks, toothless smile, sweet booty scooting, and kiss blowing – what then? Will the pillowy soft safety net of being a baby fall through? Will strangers stop waving bye-bye and telling her she is beautiful?
My heart is a mess.
Now, away from internal grief and on toward life, logistically :
I made eleven phone calls today. Doctors, surgeons, insurance carriers, social security workers, the senators office… My spirit is tired. Every line leads to another line, another apathetic voice, another “no” another “can’t.”
I am still in the appeal process for Poppy’s SSI and in the meantime trying to find creative ways to keep the lights on and little mouths fed. I am so thankful that somehow I have managed to keep afloat amidst the anchors falling…
Poppy and I took a break from papers and scheduling and phone calls to step out in the sunshine. We (I) blew bubbles, we (she) tasted dirt, and we planted flowers and food. She was so happy to have my full attention, and I was so happy to give it. I love her so much my eyes sting. My throat swells. If I could cry, I would.