I'm the biggest hypocrite I know
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.
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Reader Comments (Page 1 of 2)
Alyssa 5-03-2007 @ 11:17AM
Jennifer, I was touched by this entry. I don't know you or Avery, but I feel for you, and I hope Avery is better soon. This made me think of the church song "Let There Be Peace on Earth", if you don't know it, the next verse is "and let it begin with me". Sometimes we judge others too quickly, but you caught yourself- glad the doctore was a good one and that Avery will be fine.
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the SmockLady 5-03-2007 @ 11:39AM
Jennifer, thank you for this. What you wrote stands out very strongly for me. I am the mother of six children. One of my daughters has some developmental delays, she was not born with an extra chromosome, but has many hurdles to overcome in her life. She, like Avery, can understand what is said to her, but has a great deal of trouble getting out to others what she wants to say in a manner they can understand. While I am just like you in this situation of hypocrytical thinking (because I've been there with the doctor stuff too), I find myself second guessing others and their intentions all the time. It's what I call the mamabear syndrome. I often find my mamabear syndrome comes out much more strongly, more often, and more quickly with my Lottie's needs than with my other children. I think she needs me more.
I don't write about our situation with Lottie and I've been throwing around the idea in my head, but after reading some posts by you and visiting your blog I have come further to the conclusion that I need to. I have hesitated because I, we, our family is so much more than her hemiplegia and hypotonia. I don't want my blog to become a blog about her or her difficulties. I need to begin writing about our journey with her. I need to begin the journey of healing. I need to put some guilt behind me and journey forth with joy instead of with pain and worry. I hope to begin this very soon. I've many posts stuck in the draft mode on my blog and it's time to refine and spell check and begin a new journey. I am so glad you have joined the parentdish site. Thank you for your honesty.
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Tricia 5-03-2007 @ 12:06PM
I understand your fears completely. In our case, my Olivia has complex heart defects. What they expect after reading her diagnosis is NOT what they get when they meet her.
When we meet new people, new doctors, whoever - I'm always on the defense. I feel like they're better meeting Olivia as the "bubbly, outgoing, smartie pants" almost 3 year old Olivia first and THEN knowing about her condition. Because it's not what defines her, it's just part of her.
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Groovymarlin 5-03-2007 @ 1:02PM
Your post brought tears to my eyes. I hope Avery feels better. Thank you for the reminder to always look beyond the superficial.
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Nicola 5-03-2007 @ 1:19PM
What a brave little man. You brought big tears to my eyes with his story, his pain, and most of all, his bravery. He must be the most gorgeous son in all the world. I hope that he's had a very speedy recovery.
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Cheryl 5-03-2007 @ 1:40PM
Wow. Made me cry.
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Ginny 5-03-2007 @ 1:58PM
Oh no, I am sitting at work in tears. What a beautiful post. Avery IS a good boy, isn't he? So sweet. I sure hope he is feeling better. Yay for that wonderful doctor and YAY for you for being a wonderful mom.
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Jessica 5-03-2007 @ 1:59PM
What a beautiful piece. Your love and pain and yearning are all so clear; it made me bawl. The introspection and subsequent life lesson touched me.
I hope Avery gets better soon. Thank you for sharing.
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Amy 5-03-2007 @ 2:04PM
We recently had an experiance with a wonderful doctor, too. I hope alot of doctors read this, and know what it means to parents to have a caring doctor. This story made me cry, too! I hope Avery feels better soon.
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Jill 5-03-2007 @ 2:32PM
I was a special education teacher of preschool children with all sorts of disabilities. I moved into an apartment in the attic of a house, the owner of which was a man with cerebral palsy. I thought I was so accepting and non-judgmental as I chatted with him daily. Then one day he asked me to go to a movie with him. On a busy Friday night at the theater I had to ask for help getting seated and put up with stares at his wheel chair and awkward body. I wanted to sink into a hole and hide, or at least distance myself from him so the stares wouldn't include me. I realized how hypocritical I was being; my preschoolers weren't assumed to be my own children, but that night David was assumed to be my date and I wasn't ready to be that accepting.
I think we all have issues to deal with still--no matter how far we've come.
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jen 5-03-2007 @ 3:16PM
Awwww-- I think you are being too hard on yourself. You were having anxiety based on prior experiences, but you didn't let those preconceived fears color your view of the doctor once he went into action. I think others have trouble seeing the person even once they have met them. And that is what concerns me.
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melodyspins 5-03-2007 @ 4:31PM
I'll admit to tearing up for Avery, but also for my sons and, in honesty, for myself. Touching, real post. Thank you.
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Vicki Forman 5-03-2007 @ 4:54PM
It's always the challenge, isn't it, to see the person first. Bless that doctor and his willingness to show you the way.
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Michelle 5-03-2007 @ 5:31PM
Great post and a great reminder to all of us to see the person first.
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Keri 5-03-2007 @ 6:56PM
I've been reading your personal blog for some time now and am really glad that you are blogging here. A while ago, I asked (then) Blogging Baby to hire bloggers who face challenges in their lives or have children who face challenges but I never heard back from anyone. My point is, people who face challenges or have children who face challenges usually have quite a different perspective from other people. That includes me as a Deaf person. This beautifully-written post is a perfect example of what I wanted to see here on Blogging Baby, now ParentDish. So, Jennifer, thank you for being here.
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Susan E 5-03-2007 @ 9:26PM
Yeah, me too, crying at work. We just went through the croup and I had such a similar feeling of dread about the whole ER experience. But WE got the doctor YOU were expecting :-) I hope Avery is on the mend, and you too, Jen.
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Michelle Adams 5-03-2007 @ 10:30PM
Geez, you made me cry again today, LOL! I so understand! :) Hugs and I hope that Avery is feeling better! :)
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kyra anderson 5-03-2007 @ 10:31PM
oh! i'm SO glad the doctor was kind and present and that he sent you home with what you needed for avery to get well.
yes. let it begin with me. dave and i saw a therapist once who said, the hardest and most important thing to do is to practice curiosity. to ask onself, i wonder what she means? i wonder what he's like? i wonder why i'm feeling this? i wonder, over and over, rather than 'i know'.
you aren't the biggest hypocrite but a long shot, but you do seem to have the biggest heart.
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Kristin 5-04-2007 @ 12:12AM
Keri, just so you know -- I remember your request, and though I don't have the capacity to get back to everyone directly...it was taken into consideration when I asked Jennifer if she would write for us. Your opinions matter a lot.
I am so glad Jennifer is here, too.
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Stephanie 5-04-2007 @ 6:29AM
What a beautiful post. Thank you so much for sharing your story. I did cry -- a lot. :)
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