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A little background: When Paula takes a bath, I place my big bar of ultra-natural soap on the corner of the tub, and she scrapes off pieces with her fingernail, wipes the pieces on her belly and looks at me proudly. She is washing herself. Occasionally she brings her soapy fingernail to her mouth instead of her belly, and grins a huge grin at me. She knows what I'm going to do.
I wrinkle my nose, purse my lips, raise my hand to my chin, then turn it out, my palm down, making the ASL sign for "bad." "Bad! Yucky! It's not food," I say, as Paula chuckles with a devilish gleam in her eye.
Last night at dinner I served Paula a few pieces of very dry pot roast with cooked carrots and celery. She happily stuffed carrots into her mouth, then tried the meat. I knew it was very dry and I didn't expect her to like or eat it. But why not give it a shot... Right?
She tasted the meat and held it away from her face. She looked at me with that same devilish gleam, wrinkled her nose, turned her palm away. She laughed, knowing her message had gotten through.
A list of this week's accomplishments:
1. You signed "daddy" three times, huge grin on your face, looking right at the man in question.
2. You took my bowl from where I had been eating tapioca pudding on the sofa and unceremoniously deposited it on the kitchen counter.
3. You pulled up your own pants for the first time when getting up off the potty.
4. You signed "baby," then spent about 20 minutes talking to, playing with and nursing the doll your cousin Ashley gave you.
5. You practiced kicking your legs at swim class, in between bewitching everyone there with your beautiful smile and excited screeching.
6. You said "arms up!" and put your arms up, a propos of nothing at all.
7. You helped put away your play food and silverware, and stowed some of the groceries WHERE THEY BELONG on that spinny shelf under the counter.
8. Washed your own bum in the bath!
9. You went to sleep nicely TWO TIMES. From now on you're going to bed with me at nine, kiddo.
This morning I indulged in some vindictiveness. I wasn't sure it was the right thing to do, but I was awake at 4:30 with thoughts of things I couldn't let go of circling around my head. With no one else to talk to about it, I posted to my blog.
I got a couple of emails today about that blog that made me re-think what I had written, not just this morning but earlier this month, too. It's been a rough time.
Most people who criticise me on what I write do so more or less anonymously: they include no information about themselves, and so just seem to be spouting their own judgmental crap. But today I heard from a mother who lived through the death of her child and courageously told me about it, and also from another mother. The mother of all mothers - my mother.
Both pointed out that the resentment I bear towards Paula for not being the child I hoped to commune with is out of place. That in addition to simply being alive, she has so many wonderful qualities. It's true, and although I enjoy those qualities of hers on a daily basis, I needed the reminder.
My friend Lucie, the one who moved to Oregon, wrote Paula a wonderful postcard after they moved, and I keep it in the folder with all of her medical, insurance and Early Intervention stuff. I read it to remind myself that Paula is more, to me and to the world, than what those papers say about her.
This is what it says:
Hello, Paula dear! How are you? How are you enjoying the summer? I would love to ask you these questions in person, just to see your face light up with that most bright of spontaneous smiles you give (and what a gift!), and then see you shy away a little and snuggle up to your mama. I miss you, Paula. You have so much life and love in you. You are only 16 months, yet you radiate more joy than most people. A big joy that fills a room, a park... and no doubt all the family you've seen recently. Lucky them. Lucky you for having their attention. ... Lots of love, Lucie
I haven't gotten it out to read lately, but it highlights all the qualities that I need to be focusing on. I think lately I have been feeling so much grief over her diagnosis but trying to hold that in, stay positive. Well, the grief has been leaking out in other, much more negative ways. I realize I need to find a way to release that and simply enjoy my daughter.
My parents left this morning to drive back to Atlanta. Sigh. It was great having them here, especially considering Paula spent more time screaming in the last few days than most people spend sleeping in the course of a year. Mom and Dad saved my sanity by being here.
On Friday Paula was so intensely clingy and just generally freaked out that any time I put her down or took a step away from her she erupted into an earsplitting protest. Finally, at my mother's urging, I just left the house to take a walk. I was so close to getting angry, but at the same time wanted to comfort her and stop the crying. Just hellish. After I left my dad took Paula and sat with her in the glider. She kept crying for a while, then finally fell asleep.
I returned from my walk to find the occupational therapist (she was evaluating Paula for sensory integration issues - Paula's got a lot of them) talking with my parents as Paula slept, mouth open, on my dad.
After that my dad kept telling me that I should use the glider more to help Paula calm down or go to sleep. I was skeptical. I still think the main reason it worked then was that she was truly and irresistibly exhausted. But I agreed I would put it into rotation.
Part of the reason for my dad's preoccupation with my putting-Paula-to-bed toolkit is that she hasn't been taking many naps lately. She wakes up cheerful in the morning, but once she's gotten tired and then staunchly resisted my efforts to soothe her to sleep, she becomes less and less fun to be around. It's a big stressor for me, and probably for her, too.
At least while my parents were here I had someone to help out when she and I both got so tired and cranky that we really didn't know what to do with each other.
So after they left this morning, when I knew Paula was tired, I did the only thing I could think of to do to get her to sleep. Drive.
It wasn't a sure bet. Anyone who knows her knows she is no great fan of the car seat. But it was worth a shot, and I had a whole quarter-tank of precious, precious gas, so I could live it up.
I got down to 79th and Harlem before I knew my plan would fail. I made the left onto 79th and started heading home. Miracle of miracles, she fell asleep soon after.
So I pulled into Burger King and commemorated my success and my parents' departure with food I could only eat when sad: a Whopper (TM), fries and a milkshake. Not very satisfying, but somehow the right thing for the occasion.
When I got home I parked in the shade across the street from our house and ate my food, sucking mightily at my shake to get a little taste. That is one thick shake. Anyway, when I got Paula out to come inside, she started waking up and I thought I had blown it. But no, Dad's wisdom came back to me, like in the movies when the person's face floats above you and speaks sage advice at just the right time.
So I sat down in the glider with Paula, and what do you know? She stretched out, relaxed those long lashes over her cheeks and sank back into unconsciousness. Amazing.
My final thought about this whole thing is that having a hard-of-hearing daughter with sensory integration disorder is not only challenging, it's expensive. Between cranio-sacral therapy sessions, wheat-free cereals and pasta, sign-language DVDs, books and flash cards and the gas money to drive her around till she falls asleep, this thing could put us in the poorhouse. All I ask is that the poorhouse have a glider.
Oh, dear Paula, what a tremendous child you are. Happy one moment, screaming the next. A friend who I just told about your hearing status joked that maybe you did it to yourself with all that shrieking. I'm sure my hearing has been affected by it.
Today you have a cold and have been basically very cranky from about 5:30 this morning. Until the last hour or so you had spent almost all day either crying or having something done so you would stop. And it's not sad crying, either. It's angry screaming. The kind of angry screams that make me open the yellow pages to the page marked "Children, Black Market for." I peruse the listings, dog-ear the page, close the book.
Twice today I have simply sat your apoplectic self in front of the TV and walked away, children's programming blaring so loud that people on the next block considered calling the cops about it instead of your only-slightly-less-deafening screaming. This worked briefly until I reentered, then left, your field of vision, and the screaming began again.
And then, in the midst of this hailstorm of infantile displeasure, as I attempted to feed you chicken meat while you loudly insisted that bone was all you wanted, bone that made you gag and cough, you made one of the new signs I've been teaching you. All done! With a big sweep of your arm.
You've done it again, my sweet girl. Two seconds more and I would have opened the phone book, picked up the phone and dialed Babies Really 'R' Us.
But you reeled me back again with that sweet smile and a sweep of your arm. A moment of communication that gave me hope, once again, that someday our relationship will be powered by something more than hugs and screams.
So I got you down from your clip chair as you had indicated you wanted me to. Unfortunately this wasn't quite what you wanted, and started another round of howling. I'm glad this isn't every day. Maybe tomorrow will be different.
I just got back from my nephew Javier Emilio's birthday party. He's three! I basically got there with Paula and sat in the den either feeding her or myself the whole time. She was very tired and not in the best mood.
On the way there I stopped at Target to get JE's gift and bought the sugar-free chocolate as well as a yogurt smoothie (the kind they sell in a bottle) and some snacks for Paula. When we got on the road I opened the smoothie and took a drink just after I had merged into traffic. What did I find? Chunks.
There are not supposed to be chunks in a smoothie. Hence the name: smooth-ie.
Needless to say I imagined Bad Things. I spat the whole purple thing out onto my white shirt. That was what I was wearing when I arrived at the party.
The weird part of the day was that even though we just found out this huge thing about Paula, Joel really didn't want me to say anything to his family just yet about it. It would have detracted from JE's birthday, was his opinion. I'm really not looking forward to telling them, but it was weird not to be able to talk about it.
Every time I called Paula's name - and got no response - I kept wondering how it could fail to be completely obvious to anyone that she can't hear. How could they not notice?
Add to that the news that Marylu's youngest, 11 mo Neenah, is now walking, shaking her head and spontaneously signing. I hate precocious kids. Precocious doesn't equal smart, you know. It just equals early.
But really I love Neenah and I'm glad she's doing so well. She's holding her own very well for a third child: eating everything in sight, getting mad at doors that pinch her fingers, giving everyone these serious, penetrating stares. She's a great kid.
Well, Paula fell asleep in the car on the way home, relieving me of my anxiety about how to get her to sleep without Joel's help. So I'm enjoying this quiet hour when no one is talking cheerfully in a loud voice, no one is screeching and no music is turned up loud enough for Paula to hear. It's nice.
We found out today that, hopes and illusions notwithstanding, Paula does have moderate hearing loss and will need hearing aids.
Lately Joel and I had gotten comfortable with the idea that Paula was improving and could probably hear us. It just goes to show that you see what you want to see, hear what you want to hear. If you can hear, that is.
So in all likelihood she will not get an auditory brainstem response test, which is good, because it would require her to be sedated. I am generally opposed to being sedated or having anyone in my family sedated. Just on general principle.
And Paula will get fitted for hearing aids sooner rather than having to wait forever for the ABR to be scheduled. This is also good.
And once the hearing aids are here and in and working... Who knows? It's fair to expect that she'll start figuring out what all those noises we make while we move our lips are. And start making more of them herself. This will be great.
What is this all going to mean? We will stick with speech therapy (which started yesterday), get her fitted for hearing aids, and probably start finding out how to get her and us into a good American Sign Language program. I want her to have all avenues open to her.
See my new sister-in-law, Desiree, on the University of Georgia Web site. Look in the lower, right-hand corner for the Amazing Student link, or skip to the chase and read all about her here.
Dear Sir or Madam,
I recently purchased a box of your Very Berry Crunch granola at a local health food store. My 19-month-old daughter is wheat intolerant, so I am always looking for nutritious and good-tasting foods she can eat.
When we got the box of granola home, I thought I would try it. I opened the package, reached in and pulled out a chunk of granola approximately 1.5 inches in diameter. When I bit into it, I wondered if I had accidentally purchased a box of dried fox droppings.
Needless to say, the box of granola faded into the dim recesses of memory as other, more palatable cereals edged it to the back of the refrigerator top. Until something made me see it in a whole new way.
My daughter is one of those toddlers who put everything in their mouths. I'm sure you've seen them at the park, gnawing on a stick, or in the mall, chewing the life out of a discarded french-fry container before their mothers grab it and look around in hopes that no one noticed.
I was telling someone about my daughter's oral fixation lately, and she recommended I try to supply Paula with actual food items that resemble the sticks, dirt, rocks, sand and egg shells she crams into her mouth whenever I'm not looking.
Brilliant! That was when I remembered that lonely box of tasteless, jaw-breaking granola on top of my fridge. I knew it had a special role to play.
Now my daughter eats Enjoy Life's gluten-free Very Berry Crunch granola every day. She loves it. Sometimes when I serve it to her, she gives me a look that says, "Why is it okay for me to eat this, but not the stuff I find on the ground outside?" Someday, honey, you'll understand.
So thank you, THANK YOU! Thank you for giving my daughter and me a wholesome, healthy alternative to dirt, sticks, rocks, sand and egg shells.
Sincerely,
It's just so sad. So very sad.
It's been almost 72 hours since I last nursed Paula. When I think about it that way it's a little sad, but mostly I feel great about it.
I spent all of Tuesday and yesterday totally engorged. I never had rocks like that on my chest when Paula was a newborn, but then I was NURSING then. Today when Marylu loaned me her booby ice-packs, I wanted to kiss her. Aaaah. Booby ice packs.
Paula's doing fine, still very attached to me, and learning about letting herself go to sleep without nursing. The evenings are hard for her, but naps are getting easier. At night she wants to cuddle with me, holds out as long as she can, then asks to nurse with her usual tongue click. Then Joel takes over and walks her back to sleep. God bless him.
I'm definitely going through a mental weaning process myself, too. I catch myself thinking that if Paula doesn't take her vitamins she'll just get it through my milk. No... she won't. She's no longer part of me - nor I of her - in that way.
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