CSquaredPlus3

He's Home

With his two younger brothers in tow, I made the 90-minute trip -- in closer to 60 -- and retrieved Oldest Boy from diabetes camp today.  He was hanging out by the swings with his cabin mates when we arrived.  As soon as he saw us approaching across the field his arm shot up in the air and he waved unabashedly at us.

Toddler Child reached him first...

Oldest Boy had a blast.  He shared stories of exciting and good things that happened at camp and a few stories that made my heart ache for him... but mostly good things.

When we arrived home, he was greeted by Mary, the dog, and Wren, the crazy parakeet, with the truest dog and bird love I've ever seen.  Because he's a boy after my own heart, he wanted a shower immediately after hugging and kissing the pets.  He took a long shower while Middle Boy sat outside the shower door listening to more stories, peppered with jokes, riddles and silly songs.  I could hear the laughter echoing in the bathroom, spilling down the stairs and over the balcony while I prepared dinner in the kitchen.  

After a show and tell session where Oldest Boy showed us all the various crafts, trinkets and treasures made and found at camp, we had dinner... a meal a little more special than usual to make Oldest Boy's homecoming as warm as possible.

The kitchen is clean, as are the three Ross boys.  They're in their pajamas in Oldest Boy's room, and he's still holding court.  I think I'll go join his admirers..

Camp

Oldest Boy is at diabetes camp this week.  We began attending family camp the summer of 2003, shortly after he was diagnosed with type 1.  He was five-years-old and camp helped us all realize there's life after diagnosis -- just make sure you have a glucometer, syringes, insulin and glucose tabs at all times. [Now it's infusion sites, reservoirs and IV prep pads for his insulin pump.]  We returned to family camp the next three summers.  Oldest Boy "graduated" from family camp the summer before he began third grade. He was officially old enough to attend future camps without his parents.  He was eight.

Oldest Boy is eleven now and this is the first year he chose to attend the six-day, five-night camp.  He went to a winter camp for diabetics when he was ten and didn't have the greatest experience.  Some of the counselors were a little rough around the edges, used foul language and discussed inappropriate topics in front of the young campers.  Oldest Boy said he asked them to stop, but it left a bad taste in his mouth.  I'm proud of him.

After discussions with the camp director resulted in promises of better counselor training, and a commitment from a school friend to join him, Oldest Boy was ready to give summer camp a try.  He's older now, equipped with a little more self confidence, and understands if goofy, teenage counselors choose to act stupid... he can tell someone and choose to walk away and do his own thing.  Ironically, it's not Oldest Boy's diabetes care and management that he, his father, and I have had concerns about regarding the decision to go to camp.  It's exposure to older kids who don't realize that you can't unring a bell in the mind of a child.

I left Oldest Boy at camp on Sunday.  He allowed me to help him carry his things to his cabin before we checked-in with the doctor, dietitian, and other people with clipboards.  His friend had arrived at camp before we did which was a huge relief to Oldest Boy.

I was conflicted as I left.  I knew he was in good hands and that experiences like this are important for him, but I worried about the insulin reaction he'd had the night prior [He came to our room sweaty and shaking in the middle of the night. His blood sugar was 35].  I worried he'd get homesick.  I worried the counselor with the stretched earlobes [gauging, I think it's called] and the five o'clock shadow would have porn under his mattress, as I simultaneously realized the clean-shaven, collared-shirt wearing counselor was just as likely to have porn... and blow.

I quit torturing myself, received my farewell hug and kiss from Oldest Boy and watched as he and his friend walked away, happy to simply be boys... at camp.

Snippets of Oldest Boy from Chris Ross on Vimeo.

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Blindside vs. Knowing... Both Hurt

Oldest Boy has type 1 diabetes.  He was diagnosed 03.03.03 in the ER of Primary Children's Hospital in Salt Lake City, Utah, at the age of five.  It was devastating, but we're thankful he's healthy and managing the disease responsibly.

Because of Oldest Boy's diagnosis it's not uncommon for me to check the blood sugar of Middle Boy, Toddler Child, Chris, me, and any other friend or family member.  Usually... all is well.

Middle Boy gave us a scare almost three years ago with a blood sugar near 200.  Normal is 80 to 120, roughly.  I assumed type 1 had hit him, but it had not.  Per a recommendation from Oldest Boy's  endocrinologist, we discussed with Middle Boy participating in a clinical trial for relatives of people with type 1 diabetes.  Middle Boy agreed to participate in a TrialNet Study [with our guidance, support, and input] after discovering his body is producing two of three autoantibodies that predict the onset of type 1 diabetes.  We know the freight train is heading his way.  It blindsided us with Oldest Boy.  This time we see it coming.  We can't change it's course, but we can brace emotionally for the impact.

Through the TrialNet Study, we've been monitoring Middle Boy's pancreas for two and a half years.  He consents to biannual tests requiring an IV, fasting, and a few hours of mild discomfort to see how his pancreas is performing.  We typically leave the hospital reminded that his pancreas is sputtering, but he remains diabetes free.  Stressful?  Yes.  Does it provide valuable information to researchers, ultimately helping the diabetic community?  Yes.  Does Middle Boy choose to do this?  Yes.  He receives $50 each time he participates - from the Study.  He also loves his brother and believes what he's doing will help people with diabetes and their future children and grandchildren.  Not written as a prideful mother - it's the truth.

Wednesday was a test day.  The preliminary results were bad.  We've known for some time now that Middle Boy was standing in the path of the freight train.  It's always seemed abstract - far away.  It's getting closer.  Faster.  It's painful and sad.

He does not have type 1 diabetes... today, but his blood sugars indicate it's very close.  Doctors have been wrong in the past.  We hope and pray that Middle Boy will be the exception... the miracle.  He has an appointment - as does his brother - with an endocrinologist in a couple of weeks.  One of the benefits of watching the disease approach is Middle Boy might be able to get by on a small, daily, dose of insulin to give his healthy cells a break.  It's possible he can avoid taking insulin with food for a longer period of time.  We'll see.

 

The doctor who oversees the study reviewed Wednesday's results and explained the implications.  We shared everything with Middle Boy, and called Chris who was home with Toddler Child.  Middle Boy cried.  His father and I cried.  BUT, we all reminded ourselves that he does NOT have type 1 diabetes on THIS day.

Let's go out for lunch, buy some clothes at Old Navy, gawk at the Apple Store, hit Toys-R-Us so you can spend your $50, and let's get a milkshake at Ben and Jerry's.  TODAY we don't have needles or insulin.  This is good!

While eating lunch at his favorite Asian restaurant, Middle Boy broke several moments of silence saying, "Mom, I thought about some of the things you've said.  I think you're right.  [About simply enjoying today.]  It's like what Helen Keller says about appreciating your senses.  She says, *'Smell a flower today, like you might not smell it tomorrow'.  That's what I'm going to do."

I said, "You're a bright boy... "

*NOTE:  He remembered the gist of what Helen Keller wrote at the end of her essay Three Days to See.

I who am blind can give one hint to those who see - one admonition to those who would make full use of the gift of sight: Use your eyes as if tomorrow you would be stricken blind. And the same method can be applied to other senses. Hear the music of voices, the song of a bird, the mighty strains of an orchestra, as if you would be stricken deaf to-morrow. Touch each object you want to touch as if tomorrow your tactile sense would fail. Smell the perfume of flowers, taste with relish each morsel, as if tomorrow you could never smell and taste again. Make the most of every sense; glory in all the facets of pleasure and beauty which the world reveals to you through the several means of contact which Nature provides. But of all the senses, I am sure that sight must be the most delightful.

Published in the Atlantic Monthly, January 1933.

The Justice League

Halloween is not one of my favorite holidays.  For many reasons.  I don't like how creepy it's gotten over the years.  I've seen toddlers wearing the Scream mask, and others with graphically drawn wounds on their faces.  What happened to clowns and old, fat farmers?  Gypsies, and little boys dressed like their dad, using their mother's eyebrow pencil to draw a mustache on their face?

It's also a problem at our house because of Oldest Boy's diabetes.  A little candy once in a while is fine, but to gluttonously "go for it" isn't good for him - any child really.  Middle Boy's allergic to wheat and dairy, so again,  presents a problem.  Now that they're older, 11 and 9, they understand the limitations of their individual bodies.  It was much more difficult a few years ago.

Without further ado...

I knew Toddler Child was going to be Batman, so I excitedly bought Mary (the dog) her Wonder Woman costume.  I begged Chris to be Robin... he wouldn't do it.  Middle Boy had a Superman costume from last year and I picked up The Flash for Oldest Boy on sale.

I confess that Oldest Boy and Middle Boy only wore these for the photos.  They said they'd be mortified to be seen in the neighborhood actually trick-or-treating in them.  I think they had fun once they were in them though...

 

After pictures, the two older boys changed into their real costumes and got on with the more important business of trick-or-treating.  [For Toddler Child, it was "twinkle-tweeting".]  Oldest Boy was a Jedi and Middle Boy was a CLONE trooper, not a stormtrooper.  They both made their costumes (except the helmet).

 

Once the kids were off, Mary had her own important business - guarding the Ross Cave and running upstairs to stare at the bird periodically.  You never know when a parakeet might attack.

 

We feel sooooo much safer with Wonder Mary on watch.  Her costume commands the respect she's always deserved and the Lasso of Truth concerns us all...

 

One small victory. Let's party.

A Captain from our local Fire Department called last week to tell me we were forgiven the balance of an ambulance charge that occurred in February.  We were billed almost $800, insurance covered over half, so the balance was $300-ish.  Nothing to sneeze at, so we were happy to not have to write a check...again.

We have what most people would consider good insurance, but it seems we're nickel and dimed to the tune of several thousand dollars by the end of a year.  I try to fight many things, but I get tired and end up writing the check.  I realize that's part of the strategy.

The ambulance?  Didn't save one of our lives, but it saved my sanity during a rough night...

February 13, 2008
3:15 P.M.
I picked up the two older boys from school, plus a boy who lives in our neighborhood.  I had Toddler Child with me too.  A winter storm hit about 15 minutes into our 30-minute drive home.  I called Neighbor Boy's mother and said I was stuck in bumper-to-bumper traffic so expect us to be late.  We were safe, just moving slowly.

4:00 P.M.
We turned off the freeway onto the State Road that leads to our small town. 

7:00 P.M.
Two miles, and 3 hours later we were informed by an officer that the road was closed and we couldn't travel further.  We'd already passed (slowly) at least 100 cars that were stranded.  The winds were 70 mph and we were in the middle of a ground blizzard.  Visibility was zero.

Prepared mother that I am, I had less than a quarter of a tank of gas, no water, no snacks, no diapers for my then 2-year old, and no insulin for my oldest son who happens to be a child with type 1 diabetes.  Oh, and we only had 3 test strips - what he uses to test his blood sugar.

Diabetes - Quick Lesson.  Oldest Boy has type 1 diabetes (not type 2) and at the time was on two types of insulin.  He received a shot of long-acting insulin once a day - in the evening - that remained in his system to maintain blood sugar for 24 hours.  He took shots of rapid-acting insulin when he ate food, specifically carbohydrates that exceeded 5 grams.  It's a carbohydrate based disease.

7:30 P.M.
Fortunately, where the officer stopped us was a gas station - the only business on the 5 1/2 mile stretch of road.  We joined about 200 people in the gas station also seeking shelter.  I gave Neighbor Boy and Middle Boy money so they could buy "food".  Oldest Boy couldn't eat, because we had no insulin.  Toddler Child ran around like a wild animal with me trotting behind him while holding the hood of his coat.

A police officer and three EMTs arrived via snow mobile with a woman 8 months pregnant, showing signs of early labor, and experiencing hypothermia.  They set up a treatment area in a supply closet.  Oldest Boy joined the pregnant woman in the closet so his blood sugars could be monitored.  I was out of test strips.  The EMTs had NO insulin.

Note:  High blood sugar is miserable for Oldest Boy to experience - he feels thirsty, urinates frequently, feels confused and aches.  It is NOT a life threatening situation for a short period of time.  I knew he would be fine, just wanted him to have some relief as soon as possible.

An ambulance was called for the pregnant woman.

10:15 P.M.
The ambulance arrived.  The pregnant woman was not experiencing active labor, and her core temperature was steadily rising.  She and unborn baby were doing well.

10:30 P.M.
No of us knew when the storm would pass.  Middle Boy, Neighbor Boy and Toddler Child were drunk on sugar and trans-fats.  Toddler Child was wearing a too small, pink diaper I'd bummed, that was taped at the hips, and no pants.  Oldest Boy felt miserable, and we were all tired.

I was asked if I wanted to get Oldest Boy to the hospital, and the rest of the kids out of there.  I felt a little sheepish because I didn't want to take an ambulance spot if someone else at our gas station or along the route needed it for a more serious condition - like a heart attack.  I was assured that wasn't the case.

I decided to take the ride.

11:15 P.M.
We pulled up to the hospital. Chris was standing there when the back of the ambulance doors opened.  The pregnant woman was on a stretcher in the middle of the ambulance.  Oldest Boy was sitting to the side of her on oxygen and an IV - crying.  Middle Boy was sitting on the other side of her, assisting one of the two EMTs at her feet - seriously.  Toddler Child was strapped into a jumpseat at the head of the pregnant woman holding an inflated latex glove, and I was perched on the edge of the jumpseat.  Neighbor Boy was riding shotgun with the driver.

Because I get motion sick, I retched the entire way to the hospital, apologizing between retches to the pregnant woman, who's head was inches away from my vomit container.

Middle Boy kept saying, "She's not gonna have this baby is she?" over, and over, and over.

Toddler Child sang - loudly - during the ride.  One of the EMT's looked up and said, "Is he singing Benny and the Jets?"

In between retches I said, "Yea.  I've been listening to Elton lately."

February 14, 2008
1:00 A.M.
We were all home.  Oldest Boy received insulin at the hospital and was released immediately.  The pregnant woman did not have her baby that night, but made the local news.  Neighbor Boy was thrilled to have ridden in the front seat of an ambulance during a blizzard.

8:00 A.M.
We told our boys they didn't have to go to school because of our late-night ordeal.  They insisted though.  After all... it was Valentine's Day... and they just couldn't miss the party.