Mom Wants A Diabetes Cure

Thursday, November 30, 2006

The Residents

Sandra's post about Joseph's eye exam and their experience with the Opthamologist Resident got me thinking about an experience with two Residents we had at the hospital when Brendon was first diagnosed.

When Brendon was admitted to Children's once they determined in the ER that he had diabetes, they did an EKG to make sure there was no damage done to his heart due to the dehydration he endured as he was DKA at the time.

The next day, the Endocrinologist came to the room with two Residents to discuss some information about Brendon's general condition and how we were coping with all that was being thrown at us.

The day after that, those two Residents came to the hospital room, knocked on the door, entered and just stood there. We smiled at them...they smiled back...and one of the Residents started rocking on their heels.

"Um, is there something you need to tell us?", I asked because they apparently weren't offering up the information.

"We're just waiting" said the Resident who took the intiative to be the spokesperson.

"Waiting for what?"

"For the results from Cardiology to come up."

"Oh really?? Is everything OK?"

"There was an anomaly on the printout."

"An anomaly? Why is there an anomaly?"

"We don't know. We haven't gotten word from Cardiology yet. That's why we're waiting".

Jeff stormed out of the room while the Residents nonchalantly stood there "waiting".

I of course became a wreck all over again...actually I was a wreck all along.....but, the difference this time was instead of being greatful to all of the wonderful doctors and nurses for their care, I was pissed as hell at these two idiots. Why did they have to wait in the room with us? Why didn't they have the information already in hand before coming to us? Why were they torturing us like this?

Jeff had the Endo paged and the Endo came soon after. We asked him about the anomaly.

"What anomaly?", the Endo asked.

"You don't know about it?", I asked.

"No"

Then he turned to the Residents to find out what the hell was going on and why would they know about this when he didn't.

The spokesperson Resident spoke up and said:

"Well, we wanted to be thorough and receive all test results. When we inquired about the EKG results, the Cardiologist said there was a problem on the read out, so we asked to have them delivered up here."

Once that was said, the Endo brought the two Residents out to the hallway to have a word with them and I never saw the two thoughtless goons again.

The Endo went to Cardiology to find out for himself what happened and came back with the news.....

"See these peaks? These are the heart beats and they should come to a straight point at the top. But, see this one here? This one has a very slight curve at the top. This is an indication that he has Wolf-Parkinson-White Syndrome. Cardiology wants Brendon to go through another EKG to confirm the results. We basically know he has it, but they want to see another set of results just as a backup since they consider the first test to be a baseline."

I was reeling from the news. He has diabetes and now a heart condition? How much more can this poor kid take?

In the end, Brendon with his toddler ways, refused to stay still for the EKG and they gave up. Cardiology did, though, send us home with a 24 heart monitor attached to him so that it could record his heart beats. I had to record every action he took, every hour, for 24 hours.

There were no anomalies on the readings. It doesn't mean he doesn't have the condition as it has a tendency to be elusive that way, but, to this day, he has to see a Cardiologist for annual checkups.

The Deadline

Well, tonight's the night. NaNoWriMo will be over at midnight and I'll send my manuscript with a grand total of ***** words.

Won't really know the number until tonight. Let's just say that they should really choose a month with no holidays.

Wednesday, November 29, 2006

A Change In Perspective

Did you ever drive somewhere, say for instance to work, and wonder how you made it there? The drive is so incorporated into your subconscious that you could drive without thinking and make it to your destination practically with your eyes closed.

I took pause tonight during dinner prep and observed the scene in the kitchen because something had caught my attention.....

It used to be so obvious and a part our heightened consciousness, and the most significant part of our lives....

Now, it was so subtle, so inconspicuous, but still so significant.....

Brendon came in the kitchen and sat down, then immediately popped up again and opened his kit to test himself. He didn't have to be reminded by me, and he didn't wait on me to do it.

I noticed this as I stood mid-motion at the food scale with Brendon's dinner plate on it. I then realized I barely remember placing the plate there.

Like eyes blinking or heart beating, it was an involuntary reflex for him to test himself just as it was for me to weigh his food.

This invader of my boy's body was right then and there a part of our lives without us giving it a second thought. We weren't motivated to do our respective tasks because we were afraid of the consequences of not doing it as I had been when he was first diagnosed and for years after. We did them because it's so imbedded in us that it's as though we don't have a conscious choice anymore.

Diabetes wasn't such an obvious outsider at that moment.

Diabetes just....was.

Just Had To Share....

Q&A with Jessica and Jacob:

Q: What does a rooster say?

Jessica's A: Cock-a-doodle-DOO!


Q: What does a chicken say?

Jacob's A: Chicken-doodle-DOO!

Tuesday, November 28, 2006

Christmas Spirit

The day after Halloween, a neighbor behind us put up Christmas lights....and lit them up!!

The day after Thanksgiving, the entire neighborhood had been ignited with Christmas lights.

I didn't have Christmas Spirit last year. I just didn't have it in me. It was a struggle to buy a tree, string the lights, decorate it. I put my Christmas knick knacks up and cut some greenery for the fireplace mantle, but it was so mechanical....I did it for the kids really.

This year though, I've got that Christmas Spirit....hot diggity dog.

One thing I refuse to do is buy Martha Stewart's Christmas issue magazine and follow her painstakingly detailed instructions on how to make ornaments and cookies and such.

One year she had an article about making sparkly animal ornaments. It seemed nice and on the cheap. I made templates and began tracing the animals.

But when it came to cutting them out....it took friggin FOREVER!! I decided to complete a few by dipping them in the white sparkles just to get the full effect of my efforts. I have to say that this project bit the big one! Not only were there sparkles everywhere and all over me, but there were so many little nooks and crannys to cut that I lost patience and by the 5th animal, threw everything out.

Another year, she had instructions on making ornaments out of old Christmas cards. We didn't really get that many....we had just moved here and I hadn't had a chance to send everyone our change of address. It wasn't worth making ornaments out of two measly cards....plus we didn't have a tree because we moved into the house on December 23rd.

This year will be different though. I'm going to splurge on buying evergreen swags to drape on the front porch banisters....I'll place greenery and candles on the mantle....and I'll spring for a nice tree topper.....finally, I'll buy some nice table centerpieces.

And then, I'll regret every last bit of what I've done because it'll have to be all cleaned up and packed away.

Ugh.....

Saturday, November 25, 2006

Scenes From A Wedding......(warning: Very Long)

Hello hello hello!! Anybody out there?

I'm such a dipwad, nerd, dork, geek....for getting my vacation dates wrong. But to start, let me just say that (as I said in my last last post) I'm back a week earlier than I indicated because I was looking at the wrong dates on the calendar...and I blame Jeff for the way he marked the dates! But I digress....

I'm just going to run through the highlights of the wedding in Florida. Thanksgiving was great....good food, good family, good times all around, Brendon did well with his numbers....so onward with the Florida fiasco/gossip inducing/disappointment of a trip. (And a picture of me in my little black dress....it fit!)

SCENE 1


We drove down to Jersey the night before our flight was to leave for Florida and on the way down, we stopped at a rest stop in Mass. which wasn't in and of itself an issue...or so it seemed. (The kids stayed with my mom in Jersey once we got there).

The next morning, Jeff called a car service to drive us to the airport for 10 a.m. so that we could make a 12 p.m. flight. We were running around getting things repacked for the trip when Jeff wanted to run out for some coffee and bagels.

"Where's my wallet?"

"I don't know. Isn't it in the van?"

"No."

We looked everywhere and it finally occured to him that he left it at the reststop in Massachusetts.

GREAT! We're leaving for a flight and he has no ID. Not only that, but he had to cancel his credit card which is attached to mine which was therefore canceled as well. I had an extra credit card solely in my name, but I left it at home because I never use it.

No ID + no credit cards=no trip=my little black dress is liver.

Luckily I had my debit card which could be used to rent the car we needed in FL as well as pay for anything else we needed without being loaded with a wad of cash.

But would Newark International Airport let a man without photo ID on an airplane? Hmm....

We took a chance and went to the airport anyway hoping that with some grace of divine intervention, security would let Jeff on the flight.

Step, by step, inch by inch we entered the airport, approached check in, got our tickets and explained to the clerk that Jeff's wallet was lost and that he didn't have photo ID, but would registration and insurance cards with his name on it suffice?

"Well, I don't think so. Security is pretty tight. Good luck."

We went upstairs and approached the guy who was checking ID.

"This will not do. You need someone from Continental to sign you in. Go downstairs and get someone."

Jeff ran down, got an employee of the airline and she was happy to sign in Jeff in lieu of proper ID. Being white, and married with a wife in tow has its advantages I suppose.

We were let on the flight!! Hallelujah!!


SCENE 2

The moment we stepped off of the plane and into the terminal, the first people we see are old people with oxygen tanks sitting in wheel chairs and lots of very tanned people. Yeah, we're in Florida....let the good times roll, baby!


SCENE 3


(Setting: There are 9 of us out to dinner and everyone is over 60 (with the exception of Jeff, me and his cousin) and the conversation at the restaurant consists of:

1. Cheating and being stupid enough to get caught.

2. The computer is good for two things...porn, and downloading pictures of grandchildren.

3. Whose house my mother-in-law's friend (who was in attendance) would spending the night at (for some sex) as she has numerous men that she spends time with now that she got rid of her cheating husband and is a free woman.

4. A question posed to L (a different person at the table entirely) about whether it was true that 50 years ago she caught her husband in bed with another man and was that the reason for their divorce so long ago.

5. Does anybody have an extra inhaler they can borrow.

Jeff, myself, and his cousin were not icluded in any part of the conversation, by the way.


SCENE 4:

The bride's parents held a party at their house the day before the wedding at their "house" in Boca Raton. Jeff and I see another of his cousins as she's greeting another couple walking up the driveway. Before we arrived, Jeff and I were discussing her "condition" and wondering how she was doing. I walk up to her, kiss her on the cheek, and say

"It's great to see you, S!! It's been so long!!"

"WWWWWblahblahblahwuhwuhwuhwuh......"

Hmm, her reply along with a makeup job that made Tammy Faye Baker look au natural and her curly/knotty/limp hair gave me the impression that her "condition" wasn't so good.

Jeff and I ventured into the courtyard where the party was held and said hello to people we knew, explained who we were to people we knew knew us, and while he headed for the bar, I headed for the buffet.

The bride's father took a bunch of us to see the other house they were building. It was like being on MTV Cribs. The house is about 15,000 square feet with lots of marble and granite and mahogany and fireplaces. That's right, fireplaces.


ARE YOU STILL WITH ME, PEOPLE?? SORRY FOR THE LENGTH!!


SCENE 5:

(The day of the wedding)

I rest for the day while Jeff drives to Miami to pick up his brother, our sister-in-law and their two kids from a cruise they were disembarking. I pamper myself, shave, paint, etc etc and Aunt Flo comes for a goddamned visit...EARLY! After she came during my anniversary weekend at Martha's Vineyard, I came armed for such a visit....so no issues this time!

When the time came, I did my hair, got dressed and went to my mother-in-law's room until the 8 other people we were driving with were ready.

Jeff's 60+ year old aunt pulls me into her hotel room and tells me to take a whiff.

"Yeah, I smell it. The Fabreeze isn't helping. Sorry", I reply.

Jeff's 60+ year old uncle had been hitting the ganja and the smell permeated the room.

Fast forward to the The Breakers.....

We drive into West Palm Beach and pull into The Breakers parking lot. I feel good, we all look great and we're excited!!

We get through the ceremony (it's Jewish and very short) and then lead the crowd to the cocktail hour. It was held outside in a courtyard (Floridians like their courtyards).

The cocktail hour consisted of a:

Sushi station
Chinese food station
Pasta station
Antipasto station
Roast beef and lamb chop station
Two bar stations

I hit all of them except for one.....I'm already in my dress, so why not go for broke.

After freezing outside....yes, it was cold in Florida that night.....we were directed to go into the reception room. There were tons of tables, people, and a 10 piece band with 5 singers!!

I got Jeff to "dance" to a fast song...the first time I've ever seen him dance in the 15 years I've known him!! We talked to relatives....I danced with my niece and nephew....we ate the first 2 parts of a 5 course meal and then I started feeling sick.....

It doubled me over and I couldn't make it another moment at the wedding.

So much for feeling glamorous, dancing and eating great food.

Jeff and I left around 9:30 (about an 1 1/2 hours into the wedding). Here's what we missed:

1. Sweet African Lobster Tail and Filet Mignon you could cut with a fork.

2. A chocolate fountain.

3. Big fat chocolate cupcakes with mounds of frosting and chunks of chocolate sticking out the top.

4. The band jumping off the stage and singing and playing amongst the dancing guests.

5. A party that went on until 1 a.m. when it was supposed to end at 11 p.m.

You win some, you lose some I guess.

Thursday, November 09, 2006

D-Blog Day...Ramblings

This morning Brendon came to me and said he slept in three different places.

First, his bed; second, the floor in my bedroom; and third, the couch.

He played musical beds because he wet all three. He told me this at 6 a.m. I checked his glucose because I had a niggling feeling he was high. He clocked in at a 329. Yup, that says it all.

The things we take for granted....going to bed, sleeping without incident, waking up, eating breakfast, running after a ball, eating popcorn at a movie.

The things my son needs to be tested during, and what I worry about for fear of him running too low or too high....going to bed, waking up, eating breakfast, sleeping without incident, running after a ball, eating popcorn at a movie.

I have my moments when I believe in God and moments when I don't.

So I can't blame God for giving my son a disease that renders him at the mercy of skull splitting headaches, crippling lethargy, humiliating bed wetting, patience unknown to kids without diabetes which is needed when having to be tested before eating when he's hungry.

Today I met with Brendon's teacher for a parent/teacher conference. She was all praise and was amazed at his intelligence and his gift for math as well as his higher level of reading compared to other classmates. He loves math, he loves to write stories, he loves to read and learn and absorb. Information is all but devoured by this boy.

She said: "Whatever you're doing at home, keep doing it."

I said: "It's mostly Brendon. He propels himself. He's extremely self motivating."

If today I believed in God, I would have to say that maybe he chose Brendon to have diabetes....and to make up for his unjust decision, gave him the gifts of incredible resilience and the ability to let the burden of diabetes slide off his back. Maybe God was so generous because he saw all that Brendon was to enjoy through what he was to endure.

Monday, November 06, 2006

We've Come A Long Way Baby....

This month marks the 4th anniversary of Brendon's diagnosis. I can't believe it's been 4 years already. He was 2 1/2 years old. Now he's a strapping 6 year old.

Thinking of how quickly 4 years has arrived, I am reminded of barely being able to get through the first week of his diagnosis when he was still in the hospital. I couldn't see past each day let alone what his life would turn into.

I can now say out loud "My son has diabetes". Back then when I'd begin to tell people what happened to my son, the word "diabetes" didn't have a fighting chance of leaving my mouth. I'd start crying before I could get the word out. About a year later, I said to someone, "Brendon has diabetes". I thought to myself, "I was able to say diabetes. Am I finally healing from the shock of his diagnosis?"

While in the hospital, I remember being shown the glucose meter we'd be using and how I saw it as a mass of meaningless parts that I was sure I'd have a hell of a time putting together. Now the code has been long cracked and I can put it together in my sleep....literally.

Forget about giving shots! I thought we'd have to take him to the doctor every time he needed a shot once we got home. When we were told that we'd be doing it ourselves, and how often we'd have to do it, my first thought was "Hey, I'm not a doctor, I'm not equipped to do this...are we even ALLOWED to give him shots?

And then I remember thinking of how big those shots would be because I pictured the type of needle used to take blood. "My poor baby will have to get shots with those big needles?" The nurse showed me what they looked like and I was relieved....those aren't so big, but damn, I don't know if I can handle poking him with it anyway.

I remember bringing him home and thinking "Oh shit, being a parent who changes diapers and feeds him and nurtures him is one thing....but being the person keeping him ALIVE AND PREVENTING COMPLICATIONS IS A WHOLE OTHER BALLGAME...I'M SCARED!"

Knowing my nature, I knew that the level of discomfort of learning a new way of life would fade as what I was learning would become second nature. I just couldn't wait for second nature to come and take over.

Then: He screamed his head off when he got his first injection and everytime for days after.
Now: "Mom, you did a great job. I didn't even feel that infusion set go in. You're getting better and better. Keep it up.", he says to me encouragingly.

Then: He held my face in his hands and said "Mommy I don't want you to get hurt" after I said I'd like to see what a finger prick felt like.
Now: "Mom, I'm an 86", he says after he tests himself. We'll even make up games to see who guesses the closest number. The only prize is to gloat over who came the closest...and that's good enough for him if he's the one who wins bragging rights.

Then: He'd sneak food and not tell me.
Now: "Mom, this apple weighs 5 oz.", he says after he plucks it off the scale.

Just as I was ecstatic over his first steps, or his first words, I was just as much so when he recognized a low on his own and informed me of it. Diabetes has been incorporated in our lives and in Brendon's as though it were the most natural thing in the world. It's become interchangeable with all the other development milestones in his life.

I give thanks every. single. day. that diabetes has not slowed Brendon down or held him back from all he pursues. Diabetes is a hard hard thing for him to live with, but the key is that he live with it.

It May Be Redundant, But Hey, It's 50,000 Words

I got absolutely no writing done this weekend. Part of this is because, well, I was just lazy. Another part is because I could think of absolutely nothing to write about. But I'm reminding myself that this NaNoWriMo is all about content.

So what's to stop me from turning Jack Nicholson from the Shining and write the same line over and over until I've gotten to 50,000 words? You know the famous line he typed out: "All work and no play makes Jack a very dull boy."

Shelley Duvall sees a pile of pages near the typewriter that Jack had been glued to throughout the movie and thinks "Wow, he got his novel completed...let's have a looksee." And then she starts flipping through the pages and sees that famous line I quoted above. She starts getting freaked out, Jack catches her looking at his manuscript, and then the chaos begins with Jack chasing the family around....

Maybe Jack was involved in the NanoWriMo and got fed up and just took the easy way by writing the same thing over and over.....

Minus insane psycho part, I think Jack was onto something....

Saturday, November 04, 2006

Generation Gap? There's No Such Thing

I love the way my kids bring out the kid in me. I get their humor. I get their fascination with simple things. I just get it.

Here are a few moments that illustrate my point:

Moment #1:

Jacob: "Boys have a peanuts and girls have 'ginas".

Me: "Hahaha, boys have a peanuts...that's funny."



Moment #2:

The kids are all in bed and I'm in my room changing into my pajamas. I hear a bedroom door open, and then pitterpatter of feet running down the stairs and across the floor in the kitchen.

I go down to the familyroom to see Jessica on the couch underneath the covers, watching a show on Nickelodeon that we never turned off.

Me: "Jessica, what are you doing down here."

Jessica: "I heard thumping in my room and then my bed started wiggling and then I got out of bed and looked underneath and I saw a monster."

Me: "Ooh, really?!! What did the monster look like?"

Jessica: "It was brown", she says distractedly, as she cranes her neck so that she could watch the show I'm standing in the way of.

I'm a little disappointed that she didn't get more descriptive because I'm always fascinated with what goes through their little brains....and then something strikes me about her story....

Me: "Hahaha, your bed was wiggling...that's funny."



Moment #3

Brendon: "Can you teach me how to blow a bubble?"

Me: "Yeah sure, go get some gum for us."

Brendon goes through the Halloween stash. Jessica and Jacob want in on the action. Here I am priming the gum while my students watch on:



Through all of the chaos and stress and demands that kids have the knack of putting me through each day, it's moments like these when I say to myself, "This is why I had kids". I'd go through the worst of the worst just to be given a chance to laugh at something funny they've said or participate in something they're curious about. Being a parent is pretty cool. Being a parent is a privilege.

Thursday, November 02, 2006

Update on The Novel

I got through my first day of the National Novel Writing Month.

Included in my story thus far is the worst pick up line EVER and a reference to Charles Lindburgh's transatlantic flight.

I have to remind myself that this project is all about quantity, not quality because I really don't know where the f*ck I'm going with this thing.....

Wednesday, November 01, 2006

What A Lovely Night To Get Lost

It was a balmy evening, 6 p.m., approximately 50-60-70 degrees (all I know is that we didn't need jackets unlike when I was a kid and it was always freezing and my mom would make my brother and me wear a friggin parka over our plastic Wonder Woman and He-Man cotumes and we would get pissed because we couldn't show them off) and the kids in the neighborhood began their trick-or-treating extravaganza (by the way, has anyone EVER had a trick played on them or played a trick on someone else instead of getting a treat?).

The kids and I walked to my neighbor's house and a crew of us started our way (make note that we were 7 adults and 9 children).

We went from house to house and we let the kids go to the doors by themselves while we adults stood at the curb chatting away. I did a head count of my 3 kids as we would continue to the next house.

Well, at some point I stopped counting and after a while, I decided to do a head count again.

"M, do you see Jessica up at the door?"

"No, I don't."

"Maybe she's in front of the older kids."

I shout to Brendon who's still at the door to ask if his sister is with him and he says no.

M and I don't see her with any of the kids walking back to the curb. My neighborhood has no street lights which makes it difficult to see anything. Plus, being that Jessica was dressed as a lady bug mostly in black, it made it that much more difficult to see her.

I thought maybe she was lagging behind at house we'd already been to or maybe got caught up in another group.

Jake didn't want me to leave him so I carried him, running down the street screaming Jessica's name.

M left Brendon and her 2 kids with the other adults in our group and started asking people if they saw a little girl dressed like a lady bug while I ran down the street screaming Jessica's name.

I didn't fear that someone abducted her, but I felt awful thinking about how scared she was that she couldn't find me.

M and I soon met up with each other and M told me someone told her that she saw Jessica walking with a woman and 2 young girls and that the woman said she knew Jessica.

We both realized it must've been E whose daughter babysits for us....or at least I'd hoped it was.

M told me to run home and get my car so that I could drive and find Jessica. When I reached my house, Jeff told me that E called and said she found Jessica in the middle of the road and that she was fine and would bring her home.

It was taking quite a while for them to get back to the house and I was a bit panicked only because of the fact that I lost my daughter and just wanted her with me.

I was relieved to know that E had Jessica, but I was anxious to get her home, so I ran up our street (can I tell you how tired I was with all of this running around) and saw Jessica, E, and her 2 girls coming from a house.

The reason why it took so long for E to get Jessica back home was because they Trick-or-Treated they're way back. E told me Jessica was so brave and wasn't crying when she found her. I was relieved to hear that and my girl looked quite proud of herself.

I soon gathered the boys once Jessica was in the house and everyone was home safely with a load of candy that I immediately dug through to get to a Reese's peanut butter cup to calm my nerves.

"Shannon, did you hear what Jessica said?"

"No, what did she say?"

"She said, 'I had a great time trick-or-treating with Mrs. W (E)'."

That girl is something else.