TGINF

Thank Goodness It's Not Friday...anymore.

Here's the whole story. A few months ago, Hadley came home with a paper from school announcing the school musical, "Cinderella". She wanted to try out. I might have cried later on, thinking of my child trying out for the musical. She is deaf. She inherited those genes from both of her parents. She is tone deaf. She got that one from her dad. It is completely unrelated to her deafness. Also, like her dad, she loves to sing. She makes up her own words and her own tune and really enjoys herself. I love it when she sings but I was really nervous about those tryouts. On the big day, I went with her. I explained quietly to the woman running the tryouts that Hadley is deaf. She does so well that people don't always realize. Maybe I shouldn't do that. Maybe I should just let her be Hadley and let people come to their own conclusions about her. I'm not there yet, though.

She was cast (with all other applicants) as a member of the 1st and 2nd grade chorus, singing a few numbers at the beginning of the show. There were many practices, dress rehearsals, etc. and the big show finally arrived. Hadley wanted her hair in curls and I gladly obliged. She looked darling and had a great time. On Friday night, while curling her hair for the 3rd night of performances, I noticed a goopy matted spot on the back of her head. When I tried to look closer, she yelled at me to leave it alone. She never complains of pain. She is one of the toughest people I know. I was really worried all weekend long and called the doctor's personal scheduler (oh, yeah, I have that number!) on Sunday night so that she would hear my message early Monday morning. I had my suspicions about what was going on back there. Worst case scenario, her cochlear implant was infected. Best case scenario....I couldn't think of one.

On Monday, we went to the University of Utah Hospital to meet with one of Dr. Shelton's residents. By the way, if you want to know of a job that seems to be only slightly more glamorous than being a garbage collector or a professional toilet cleaner, check out a day in the life of a resident. It's almost funny. They DO pay for becoming official doctors, don't they? Anynow, the resident was concerned, left the room and called "THE DOCTOR", the head honcho, the surgeon, the main man. He called back and immediately said that he needed to see Hadley on the following day. Tuesday came and we made another trek to the University of Utah Hospital. I had to buy a Webkinz to convince Hadley to let them clean the wound and cut away the dead skin and there, poking out of her head, was the edge of her cochlear implant. "Let's take a closer look at her under the microscope," head honcho says. Residents crowd around for a look at something the surgeon has never seen before. If he's never seen it, it must be rare and exciting. Rare and exciting is code for "You do not want this to happen to your child" as far as I can tell. Rare and exciting is what got Hadley published in the Journal of Neurotology and Otology last month for the trauma she went through in 2007. Since I don't currently subscribe to aforementioned journal, THE DOCTOR gave me a copy of the article. Hadley is "Case 3" for those of you who are rushing out to buy your copy of the journal.

As I detailed Hadley's cochlear implant ups and downs, Stewart noticed THE DOCTOR patiently listening. He was sure that THE DOCTOR knew all about Hadley's case since she was one of his most rare and exciting patients. Yay! Go Hadley! But he listened anyway and then gave me worst case scenario news. Surgery. Friday. Big Head Shave. Already on his schedule. Surgical scheduler will give you pre-op instructions. I'm sure you remember them from last time. See you on Friday.

Hadley didn't tell anyone about her upcoming surgery. I asked her to tell her teacher at school. She said it would be too hard to explain. She pretended like it wasn't happening. On Thursday night, she got to choose dinner. She picked Cafe Rio. Over quesadillas and rice and beans, sweet Maddox told her he was scared about her surgery. Here's how the conversation went:

M: "Hadley, I'm a little nervous for tomorrow."

H: "It's okay, Maddox. This is my sixth surgery. You don't need to be scared."

Wow.

Thursday after Cafe Rio, we decided to have a late night, complete with popcorn, chocolate chip cookies and Star Wars movies. I fell asleep on the couch; Hadley made it through the movie. I thought that would help her to stay up late. Maybe she could sleep in on Friday. We didn't have to check in for her surgery until 11:00; she couldn't eat after midnight. Of course, she must have had some surgery related nerves because she woke up at 6:58 am. I convinced her to go back to sleep and then Lincoln woke up. I tried to keep him quiet. He dialed 9-1-1-1-1-1-1-1-1...which apparently still works. They called back. "We're fine. Sorry." (We'll be at the hospital soon enough, I almost told them.) The house sprang to life after the phone call and the big surgery day began. Round Six for Hadley.

There's something about watching your incredibly brave and mature seven year old go into surgery. She was happy and sweet, kind to the nurses, friendly to the other patients and parents. When the anesthesiologist came to talk to her, she requested a new flavor of anesthesia that she'd never tried before: Blueberry! He said nobody had ever asked for blueberry before but he was sure he could find some. She held his hand and bounced down the hall with him, explaining to him that she was missing Friday Fun at school. He told the nurses later that she had the prettiest eyes he'd ever seen. He was smitten. So am I. I cried as she walked away, remembering surgeries 1 through 5 and hoping that number six would be okay.

Waiting, waiting, waiting. I left my winter coat on the entire day in the hospital. I couldn't get warm.

Finally, THE DOCTOR came to talk to us. "She did really well," he told us. "Things were more infected than we thought they would be. We irrigated and put antibiotics in there." I asked a few questions. No, they don't know why this happened. No, they've never seen it before. No, there's nothing we can do to prevent it happening to the other side.

Hadley is slow to wake up from anesthesia. She wakes up angry at me. For some reason, this makes me feel guilty. She also wakes up sick. We stay in recovery for the rest of the day. Most of the patients have left. Hadley can't drink anything. Many doses of anti-nausea, no pain meds. She's still as tough as nails.

Finally, they tell us we should stay overnight because she can't keep anything down. "I want to go home," Hadley says. They call the doctor who recommends a lot of IV fluid and some medication to make her retain it. After 600ml, we get to leave the hospital with instructions to return in the morning if she isn't doing better.

Home. What a long day. Family, toys, a hot meal are waiting for us. Thank you. I don't know how we would get through life with Hadley without a lot of help. Thank you, thank you to all of the helpers. And now, it's over. I hope we can go a few more years without a surgery. Somehow, Hadley still hasn't noticed that over 1/4 of her head has been shaved. That will be another bad day. But here's to a few good days in between.

Musings on the Mustard Bomb...

The year was 2001. There was a little girl bun in the oven. We were living at "Grandpa's House", young and poor, still sort of newlywed. Pregnant me, too tired after a long day teaching Junior High Hoodlums, collapsed on the couch. Stewart came home from work, took one look at me, and decided to call Zubs -- Springville's finest sandwiches. In my oh-so-complicated way, I ordered my sandwich the way I like it. No mayo, put mustard on instead. (Hot subs with mayo make me gag. Quizno's makes me gag. Pregnancy makes me gag.) The Zub's employee on the phone was a boy I remembered from one of our many fine establishment visits. Memorable because he had two hearing aids and his speech was...well..."deaf sounding". I dozed off on the couch while Stewart went to pick up dinner. He came home, set the table, and woke up his cranky, pregnant wife who took one look at her sandwich and began to cry. Yes, I cried. There was mayonaise on my sandwich and NO MUSTARD. If you have never been pregnant, you may not understand why I cried over a sandwich. If you have, you know why and you have probably cried over a sandwich or two yourself. Angry, pregnant, awful, embarrassing me said, "Why on earth do they let the deaf kid take phone orders?" I know. Awful. Humiliating. One of the worst things I've ever said. I would later remember uttering that and cry again, certain that karma had dealt me a deaf child to pay me back for my lack of tolerance. Although I'm not sure which obstinate and disobedient person angered me and dealt me my Maddox. Or, for that matter, which parent I judged for not letting their child "cry it out" and sleep through the night. Meet Lincoln. He woke up twice last night. He's 15 months old, for crying out loud. No pun intended. But it's easier to give the kid a bottle and make him stop crying. I know, I know, let him cry for a few nights and it will stop. Whatever. Anyhow, if it holds true that your children are sent to teach you specific lessons in life, I can see where mine came from.

So now you are wondering what the Mustard Bomb title means. Well, that's where the sandwich story is disputed. In my mind, it goes something like this. I looked in the fridge for some mustard while Stewart patiently scraped the mayonaise off of my sandwich. He shouldn't complain. He's the king of "ketchup only" and really is quite fun to travel with internationally. I fall in love all over again listening to him try to explain to the Moscow McDonald's that his BEEG MAK should not have any cheese. Only ketchup. Also funny in French. Oooh, and in German. Really. Since there was no more mustard in the fridge, I had to open a new bottle. I hate all of that plastic safety seal packaging. I'm sure it's good because people are always in grocery stores trying to poison innocent mustard eaters, right? But at the moment, in utter frustration, as I wrestled with the safety seal, that mustard just slipped out of my fingers, hit the floor with great force, and exploded in all directions. Months later, when I was cleaning the kitchen, I found bits of mustard that I had missed in the Great Mustard Bomb of '01 cleanup. At the moment, though, I think I just cried.

Stewart didn't quite see the same thing as how I remember it. He remembers me behaving like a defensive lineman who has just intercepted a pass, run 99 yards and scored his first career touchdown. He enters the endzone and spikes that mustard...er...ball. He spikes it for everything he's worth because he's not sure if he will ever get to spike another mustard, ball, whatever. Yeah, there's no way that is right. Pregnant people just don't go around throwing mustard, do they?

You can judge the two versions of this story and probably come to your own conclusions. I, however, prefer my version of the memory. And since I've been pregnant a few times, I think I know.

Last night, all of my kids were in bed and I decided that my life was just not exciting enough so I just gave it all a light dusting of chocolate. The world is a beautiful place through rose-colored glasses, so why not covered in chocolate dust? What actually happened was that when attempting to reach my Stephen's hot chocolate mix to make one of my last cups of hot chocolate of the season (yay, yay, yay! It's getting warm!), the huge Costco-sized container slipped from my grasp and hot chocolate floated as if in slow motion through the air and across my kitchen. As I was cleaning it up from the tops of drawers, the backsplash and the floor, I started laughing because I remembered the Mustard Bomb. And, in case you're wondering, it's much more pleasant to wipe up a light dusting of dry hot chocolate mix than it is to clean up mustard.

Shoes

It is so hard to relate to somebody until you have walked a mile in their shoes. As a fan of shoes, you'd think I wouldn't mind walking around in other peoples' shoes. Not so. Setting aside the fact that I have a real foot fetish and don't like my feet being where other peoples' feet are, I can honestly say that I have become quite comfortable in my own shoes.

In my shoes, you'd know what it means to have a deaf child. See...most of you probably don't want to put these shoes on. They are cute shoes but they can be a bit uncomfortable at times.

I really am not complaining. I am so grateful for Hadley and for all that she has taught me. She is a shining light. Her spirit radiates and everyone who knows her absolutely falls in love with her. But...

We were driving home the other day and Hadley and Maddox were both in the back seat. Somehow, it came up that the earth is not actually a circle but a sphere. Hadley tried at least five times to say the word "sphere" but was really having a hard time with it. (Note: Misha, call the speech therapist and ask her to put that on our trouble word list.) After her failed attempts, Maddox clearly says, "No, Hadley, it's SPHERE." I felt my heart drop and I think I could hear Hadley's drop in the back seat.

I know how lucky I am that Hadley can sit in the back seat and even talk about what shape the earth is. I do understand that. I also know that this spherical earth is full of people who say awful things. It's full of awful words and awful thoughts and sometimes, Hadley's deafness spares her from some of the ugliness. Man, it's hard, though. You try to give your children everything. I WOULD give her my ears if I could. I really would. I have these moments when I wonder about what Hadley has in her future.

Last Sunday, Hadley's cochlear implant battery died during church. There were only about 15 minutes left and she asked her teacher if she could come find me to get a new battery. He told her she had to wait. Really? Can you really make that kind of a decision for someone. No, I'm sorry, you don't get to hear for the rest of church. I wasn't mad at him. He really didn't understand. He's never been in Hadley's shoes. We did have a few seconds of awkward tension after church when I asked him why he didn't let her come find me and change her battery. It has just been weighing on my mind, though. See, I understand fully what it's like in my own shoes. I have come to terms with being a parent of a deaf child. I am still not so sure what things are like for Hadley. What would it feel like to not be able to hear sometimes? To have technical difficulties in the middle of birthday parties, church classes, school, movies...that completely turn off the sound.

I know that it's my job as a mom to worry about my kids. I know it's my job to make sure that they have lots of comfortable shoes & stylish shoes; rain boots and snow boots; flip flops and tennis shoes. Hadley....has...a...lot...of...shoes. Literally. But figuratively, back to this whole metaphor of walking in someone else's shoes -- I think she's okay. I think so. She seems to take it all in stride. She seems to wear her shoes well. Could I?

Who gets me?

I have a friend...a really great friend. She gets me. We can say things to each other and not hurt one another's feelings. Things like...tonight....she says, "Do you know that the first time we hung out, after listening to you and Stewart, I said to B, those two will NEVER make it." Ha ha.

Who else has said that to me? Um, let's see...my mom, my sisters, my dad, EVERYONE!

But let me let you all in on a little secret. We're making it. We really are. Want to know why? 'Cause Stew gets me. He really, really gets me. He knows when to push me and when to let me withdraw. He know when to hug me and hold me and when to leave me alone. We lie in bed together lots of nights and talk about how lucky we are. We have each other. Life gets hard sometimes. It really does. But we are lucky.

2008 was a special year for the Peay family. It was the first year, since Hadley was born in 2001, that we did not MAX OUT our medical benefits. Yes, you heard me right. Shoulder surgery, Miscarriage, premature baby, cochlear implant surgery, cochlear implant surgery extraction and replacement, cochlear implant surgery #3, speech therapy, lazy eye, premature baby #2. I could go on. I won't.

The important thing....I have people who get me. I wish I could say that about MORE people in the world but I'm happy to say that the MOST IMPORTANT people in the world get me. My husband gets me. He has me. He's got me.

So...thanks to friend who gets me, too, who makes me smile, makes me laugh, and tells me that she never thought my marriage would make it. Now that she gets me, she knows what all of that verbal sparring between Stewart and I really is....flirting. Yeah, whatever works. And, mostly, thanks to my man of eleven years. Thanks for getting me.

I'm trying here, People!

Thanks, Mara. I know...when you look up these days (see last post), all you can see is white. Hello, Utah Winter. Hello, Inversion. Hello, my own personal purgatory. Can I just say one more time...I hate Utah winter!

Don't forget to look up

The other day in church, the speaker was talking about living in Utah and how a friend, while visiting, asked him if he went outside every morning and stared in awe at the beauty of the mountains. I sat there, overwhelmed with guilt, because just that morning I had been thinking about how much I HATE Utah in the winter. I am a Florida girl. I like going to the beach on Christmas vacation. I don't like dirty snow. I don't like to shovel my walkway. I don't like drying out my kids' snow clothes five times a day or making endless mugs of hot chocolate. Oh, sure, it all sounds so romantic. Sitting by a fire, coming in from the snow. But, when it comes down to being SCARED to drive your kids someplace because the snow drift in front of your driveway is five feet tall, believe me, there's NOTHING romantic about it. Here's what it really looks like....

Until you look up....
Maddox and I were driving home the other evening just as the sun was setting over the snow capped mountains. "Wow," he said. "I think Jesus painted that sky just for me."

Thanks, Maddox, for the reminder to look up instead of down. One of the many life lessons that you can learn from a day with a three year old.

I'm Getting Nothin' For Christmas!

Has Santa ever come and really left only a lump of coal? He's thinking about it at the Peay house. Somebody is on Santa's naughty list. Somebody has forgotten how to be nice. Somebody might be getting NOTHING for Christmas. And Somebody, when threatened with the lump of coal, said, "I can start a fire with that coal."

(But he's SO cute and he's so funny! What can you do?)