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I'm the biggest hypocrite I know

by Jennifer Graf Groneberg (Subscribe to Jennifer Graf Groneberg's posts)
May 3rd 2007 11:00AM

22Comments

Avery is sick and even as I realize it's more than an allergy or an upset tummy or simple growing pains, my heart begins to sink and I say the prayer every mother knows: Let me be the one, let my child be healthy. Let me take it away.

But I can't make it all better, so I do what I can. I try to keep Avery comfortable. I surround him with books and crayons and an endless supply of white paper. I cook chicken soup with extra salt. I alternate doses of ibuprofen and acetaminophen. But Avery's throat is sore, so he won't swallow. Instead, he gags and chokes, and I add a new worry to my list--aspiration. To complicate matters, although Avery is almost 4 years old, he is mostly nonverbal. Instead of words, he speaks using sign language. Hurt, mouth, he signs, bringing his two index fingers together, then pointing to his mouth. Hurt, tummy. Then he makes a circle over his heart, I'm sorry.

Our medical options are limited. The doctor who's cared for Avery since birth recently moved away. We transferred to a new doctor, and I meant to get in to see him, but like so many things in my life, I haven't gotten around to it yet. And now, it feels as if we are adrift. No one knows us. No one knows that Avery's been the healthiest of the three boys. No one knows that he hasn't had an ear infection in his life, or that even though he doesn't speak, he understands exactly what you're saying. No one else is sick, and Avery isn't getting better.

If I take him to the emergency room, I'll have to explain that yes, Avery's eyes are glazed, but it's not because he has Down syndrome, it's something else. His skin is mottled; not because he's low tone, it's a rash. Yes, Avery's tongue is sticking out. No, it's not Down syndrome, it's because his throat is swollen and he can't breathe. I prepare myself for the worst and call ahead to the ER. I do it for Avery, who signs, I'm sorry, I'm sorry mama. My sweet, sweet boy.

We arrive at the hospital and I see the doctor in his green scrubs that match his green eyes, a stethoscope looped casually around his neck. To me, he looks like every doctor I've ever disliked: a bit arrogant, a little smug. He reminds me of the doctor in the Neonatal Intensive Care Unit (NICU) who rolled his eyes every time I tried to ask a question; he's the neonatologist who first examined Avery; he's the pediatrician who told me Avery's diagnosis meant my heart will break and break and break again.

I say what I know about the fever, about the rash, the stomach ache, the raggedy breathing. I say that Avery is usually the last person at our house to catch a cold, and that I'm worried. This illness is different. And I ask, "Please explain to Avery what you're going to do before you do it, so he won't be scared."

Avery signs, Hurt, I'm sorry, over and over. I sign back, Me too, I'm sorry too. Avery points to the pain chart on the wall, the frowny-face with tears. "I know," I say. "Yes," I say, "yes."

The doctor watches all this then begins speaking to Avery. He tells Avery he's going to listen to his heart. He asks Avery if it's okay to look in his ears. He explains to Avery that he's going to touch his throat two times with a swab. Then the doctor tells me he has a 3-year-old son at home.

When the rapid strep test results come back positive, the doctor writes out a prescription for Amoxicillin. He tells me to finish out the full 10 days of medication and to call if there's any trouble. "Goodbye, Avery," he says.

All I want is for people to see Avery as he is. To look past the Down syndrome, to see the person there. It's a simple wish, and a complicated one too. I ask for it again and again in a hundred ways. But I see now that if anyone is guilty, it's me.

Avery signs thank you--a hand touching the mouth, then moving away. The doctor asks what Avery's saying. I explain, and the doctor signs thank you back to Avery. Then he tousles Avery's hair and says, "You're a good boy, aren't you?"

Not all doctors are unkind. Not all doctors have trouble recognizing the child Avery is. All doctors are not the same. And me, of all people, should know better. Let me learn to see the person first, always. Let it begin with me.

Tags: a-little-more, Down syndrome, T21, Avery, childhood illnesses, emergency room,, DownSyndrome,T21,Avery,ChildhoodIllnesses,EmergencyRoom,Er,Strep

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