Langer Loksh

Nothing But the Truth

A mom on my Yahoo! group recently posted the following anecdote:

"My best friend has a very inquisitive 4-year old daughter.  When she
noticed [my child's] missing ear at his first birthday party, she started
asking why. I told her angels took it before he was born and they
left a little tag so they know where to return it later. But the
debut of my favorite answer so far apparently didn't satisfy her. So
later she asked her mom, who replied without thinking, 'his ear is
turned to the inside so he can hear himself think.'  Not long after
that they were in a noisy environment and her daughter
complained, 'Mom, it's too noisy in here, I can't hear myself think.
How can I turn MY ear inside?'"

Other people posted messages about how cute they thought this was, and how they were going to use the same explanation if little kids asked them questions.

There's also a poem posted to the files section of the group:

I'm Special

On my way from Heaven,

God delayed my trip that day.

He said that I was special,

and then sent me on my way.

But not before he kissed me,

Right upon my ear.

He left his blessed mark

to carry with me here.

He whispered in my ear right then,

that He loved me without doubt,

and then He closed my ear up tight,

so the whisper won't get out.

He told me both my legs were strong

and would help me stand up tall.

He told me both my arms would work

to catch me if  I fall.

My eyes would catch my memories

to store within the pages of my mind,

My heart would fill with all the things I would love,

so many things, I would find.

He told me I could fall asleep

to my Daddy's bedtime tales,

and listen while my Mother sings

of seas and boats with sails.

One ear, He told me, could hear the sounds

that little birdies make.

The other ear was his gift to me,

a blessing for my sake.

For when I'm feeling sad, he said,

my other ear would hear,

His whispered words of eternal love,

left waiting for me there.

I'm special.

I like the part about hearing the birdies, but the poem is just for people with unilateral microtia and no other problems, and that's pretty limiting. Plus the whole concept of "I'm special" kind of makes me want to barf.

The other day a member posted the following:

"Hi all,
As a parent of children with many many different
medical issues as well as being a deaf adult myself I
do find this answer a little unnerving about angels
and the ear being inside out and all that. Although
yes it is a cute story for a toddler it is not the
truth... Explaining that all people are different is the best way to go. Some
people are short, tall, have blue eyes or brown...
some people have no ears, some have one, and some have
two. Our differences are what make us unique and what
we should be proud of instead of being made to feel
that we need to make up stories about how or why we
are this way."

She's right!

Slumming in EI

I've been going to this hearing-impaired-baby parenting group at our Early Intervention office for a few months now. Charlie's hearing impairment, which is moderate and only on one side, is not as disruptive as those of the other children. One baby has a weird kind of intermittent deafness that comes in and out throughout the day and you never know when he's hearing or not; others have impairments like Charlie's but in both ears; others are totally deaf and have cochlear implants. We spend a lot of time talking about things that our family will, fortunately, never have to deal with.

Still, I get something out of the group each week. Like today there was a guest, a woman from a preschool program for hearing-impaired kids. As she talked about her program, which Charlie would probably not even qualify for because there are so many kids who need it more than he does, I was thinking about the ways I could use her ideas with Summer. The woman talked about a method called Handwriting Without Tears, which teaches kids how to make letters with shaving cream or play dough before they're physically ready to sit down with a pencil and paper.

The other thing I come away with is a sense of how good I have it. This parenting group--and the playgroup that happens at the same time, with a one-to-one ratio of speech pathologists and babies--is very unusual, so people come from far away to attend. "Far away" includes cities that are not fancy like the suburbs in this EI district. When we take turns talking about how we're doing, I hear one mother talk about how her older son is threatening to drop out of school. I hear another talk about how her child's father is not showing up to watch his daughter when he says he will. And then of course there are the kids--the different kids with their different disabilities. One week we had a panel of kids who had "graduated" from Early Intervention and were now in elementary schools. They were all doing great, and everyone was glad to see that. But it made Henry's mom cry, because Henry's hearing impairment is the least of his problems. He's two and a half and he can't walk.

Sometimes I feel like I'm slumming. It makes me feel less afraid, less alone, less sorry for myself and for Charlie, when these other families remind me how good we have it. I certainly take no pleasure from anyone else's problems. I always try to give the other parents moral support, even though I'm not going through the exact same things they are. It's not as though I'm taking up a spot that someone else needs, and I do feel that the other parents appreciate the comments that I contribute. But I wonder if what I'm doing is OK, or if using the group in part to make myself feel less bad about our family's situation is selfish and wrong.

Grandma's Stairs

This weekend Charlie taught himself how to climb up stairs--at Grandma's house, just like Summer did. There's something about Grandma's stairs!

The New Me

I road-tested my new attitude this weekend. Allison had a first birthday party for her Lucas. It was so nice to see her family doing so well, and her other friends who I like so much. It was also a relief for me to just enjoy a party, and enjoy Charlie enjoying the party, without wondering what other people were thinking about Charlie.

"How old is he?" asked Allison's neighbor. I told her 11 months, and she was surprised. Charlie's bigger, and closer to walking, than her 14-month-old. It was such a textbook baby-comparison moment, and it didn't seem to matter to the neighbor that her kid has twice as many ears as Charlie.

I told Allison's friends about my blog, and they asked me what it was about. "Well Charlie was born with some birth defects, obviously," I said, and I felt myself start to blush. They nodded; I kept going. "I started writing it to help me deal with all the confusing information from the doctor visits and stuff like that." They asked for the URL, and then we went on talking about work/life balance, how much babies hate to have their noses wiped, and other blissfully typical topics for parents of babies.

Except for that extremely brief moment when my face got hot, I felt peaceful and proud of Charlie and just glad to be there for Lucas and Allison and Jonathan, glad to be celebrating the truly momentous occasion of Lucas's first year of life and my beautiful friend's first year as a mother.

Obit

Button the African dwarf frog, beloved companion of Summer, died peacefully at home today after a heroic battle with dropsy. Button brought joy to those who knew him by swimming around, not making any noise, and being preposterously easy to care for, until the end, when it got a little bit involved.

In addition to Summer, Button is survived by his fellow pet Bonita the cat, who never once tried to eat him; Charlie, who was probably unaware of his existence; Jeff, who has been a really good sport about this whole thing, from the time he took us to Rockingham Park just to buy the frog, to helping administer antibiotics this week; and Jill, who spent way too much money trying to save him. Funeral services will be held tomorrow in the back yard. Button was two years old.

Queer Eye for Langer Loksh

My brother recently sent me an email that described some family friends of ours as "good peops." I loved his spelling of "peops" so much that I was going to change my "peeps" list to "peops." But then I was in the book store looking at a book that Carson Kressley has written for children about how it's really super to be different. (Jumbos, say it with me: "I'm different, you're different... we're all OK!") In his acknowledgements, the Queer Eye fashion guy thanks the "peeps" at his publishing house. Clearly, we have to go with the maven on this one.

The Continuing Frog Bloat Drama

Jeff and I have been dutifully administering antibiotics to our little frog Button each evening. I wear the latex gloves, he wields the net. Perhaps we were meant to be involved in animal husbandry on a professional level. We should take one of those caretaker vacations, where you get to live on some gorgeous remote island for a week as long as you make sure the sheep are fed.

Today the bloat looked serious so I called the vet and got an appointment this afternoon. It was a different vet at the same office, one not apparently as experienced with the amphibian clients. She punctured Buttinski but did not drain as much as Dr. Rittle had. Button still looked like a teeny Hindenburg. "I could stick him again, but he might die," she said. "NO!" Summer shouted. They charged me $50.00 and I left surly.

On the way home I stopped at The Fish Nook pet shop to see about buying Button a whole new tank and gravel, one that would not be contaminated with whatever was making him look so much like Senator Kennedy. The super awesome dude at the Fish Nook took a quick sample of Button's water and told me the pH was way too high. He recommended I remove the seashell decorations. He did not, though it would have improved his bottom line as I seem to know no limits when it comes to saving this pet, recommend the purchase of any new gravel or tank equipment. I think he thought Button would appreciate the stability of his own familiar aqua-colored gravel and minimalist clear box. We chose a sunken treasure chest decoration to replace the seashells.

And now we wait. I don't want to have him drained again--what I mean is, I don't want to spend another fifty bucks. But I sort of have in my head that I would do it one more time. At this point it's a biology experiment. Too bad I don't have grant funding.

MJHS

My page hits have dropped precipitously. Is that because I'm boring? Or because I am a repugnant human train wreck? Does reading this blog make you feel squirmy? Lately, writing it makes me feel squirmy.

Ever since I wrote this post about the way I was feeling about Charlie, I have felt ashamed. Why do I care so much what other people think anyway? This blog is called Langer Loksh because of my physique, which is what people made fun of in junior high. Some older girl named Tracy Williams called me Big Bird because I was tall and scrawny and had big yellow hair. Samantha Howley called me Q-tip. Someone else spread rumors that I was anorexic. Then as now, I was not the type to laugh it off. It sounds silly, but it hurt.

It's time for me to graduate from junior high. I love Charlie like a momma grizzly. I wouldn't want any other baby, and I wouldn't want Charlie to be any different--he wouldn't be Charlie. I am so, so proud of my son. He brings me so much joy every day. He's so steady on his feet, I think he's going to walk before one. He lights up for his sister, his dad, his Jim, or the cat. He doesn't like baby food. He laughs out loud on the swings. When I'm with him, everything is reduced to its core. Yummy. Hot. Smelly. Windy. Funny. Peaceful.

I think I'm ready to just feel peaceful about Charlie's birth defects.

It may have been uncomfortable for you to read about all this. But I think blogging about it has helped me get here faster. So thank you for reading it. And please keep reading it.

If Spring Skiing Means You Don't Have to Wear a Jacket...

Summer skiing means holy snowplow, how did she get so big? Here is Summer on her first ever day skiing. At the beginning she was a limp noodle but by the end she was zipping along on her own. Even falling down was fun.

Speaking of Unhealthy Mental Activities...

In a desperate last-ditch effort to toilet train Summer, I told her she could have a certain Ariel bathtub doll that our friends the Zielinskis have. (I had to buy it off EBay--I guess it was an older model.) All she had to do was wear underpants and use the potty for a week. Once she got the doll, the Pull-Up habit was broken, and we have not looked back.

I had forgotten about this effective strategy--call it "bribery," if you will, but I prefer "motivation with positive rewards as opposed to negative consequences." Then I was talking to my therapist lady about one of my biggest sources of volcano anger: the morning routine. Summer wakes up and asks me what we're going to do that day. I tell her she's going to school. "Aw, man!" she groans, and proceeds to whine for an hour and a half while she eats breakfast, watches PBS Kids, gets dressed, and drags her sorry butt out the door.

I told the therapist that this song and dance routine makes me feel evil for sending her to preschool, which is INSANE because at preschool they have art projects and music and dress-up and a sand table and like twenty thousand other things we don't have at home, and if it were up to adults, we would all go back to preschool and hang on monkey bars and eat snacks and take naps on mats. But I don't want to deny her her feelings. She's a little person with legitimate emotions.

The therapist--let's call her Kathy, since that's her name--suggested I tell Summer she can complain two times, and then after that, no more complaining. So I said, "What happens if she complains again, do I take away a TV show?" And then I remembered the Ariel doll toilet training success.

There was a Beanie Baby teddy bear in a ballet outfit that Summer had seen and loved at the stationery store. I told Summer that for one whole week, she could complain twice each day about going to school and then not anymore, and if she succeeded, she could have that Beanie Baby.

It was like the invasion of the preschool snatchers. She woke up in the morning and asked me what we were going to do. I told her, "You're going to school." She sat straight up in bed. "School? YEAH! I'm going to learn new things!" she cried, punching the air with her arms and leaping up to get dressed. She didn't even take advantage of her two free complaints. I heard nothing negative for an entire week. It set an totally different tone for our days. On Friday, I gave her the bear, and she has been carrying it around ever since. At the grocery store, she saw a paperback book she liked and asked for it. "Maybe we could do another Complaining Challenge for next week," I said. "OK!" she said cheerfully.

Seriously, who are you, and where has my daughter gone? Wait--don't tell me. Whoever you are, I like you a lot better.