Since August -- when we first heard the news -- I've tried very hard to put it out of my mind-- determined to follow Joseph's lead.
"Mom," he'd say, "I'm just not gonna think about it until I have to."
This week, he had to.
"It's not fair! It's just not fair!" Joseph cries, tears streaming down his cheeks. "This is worse than getting diabetes!
"I know, Bud... I know... "
That's all I can say, over and over.
Because I'm crying too.
"Why does he have to leave? WHY?! I wish it were anybody else but him. ANYBODY!"
"Me too, Honey... me, too."
I hold him tight -- standing in the middle of the kitchen, his head buried in my shoulder -- overwhelmed by the magnitude of the loss my son is about to experience.
That little boy with the brilliant red hair and freckles who means so very much to all of us-- who, for seven years, has lived across the street, two doors down.
The boy we met on the very day we moved in.
Zachary was only 2 1/2 back then-- and for a whole year I couldn't understand a word he said.
But it was obvious from the beginning that he worshiped Joseph-- and that that feeling was mutual.
In fact, within months of our arrival, when I made the mistake of referring to Zachary as Joseph's "friend," my son was quick to correct me.
"No, Mom-- he's my brother."
I'll never forget how Zachary beamed at these words.
And how from then on, they were inseparable.
Zack has slept at our house countless times over the years-- and has come over to play almost daily.
And whenever it was time for him to go home, he'd always leave things behind.
A special new hat, a sweatshirt, action figures, his Nintendo DS...
As if this were his second home.
And really, it was.
When Joseph was diagnosed with diabetes, Zachary was devastated.
At only six-years-old, he learned about it all right along with Joseph.
I never saw him drink regular soda again.
And just last week...
.... when the boys came in from building their snow fort because Joseph felt low, Zack (as usual) loaded the test strip while Joseph washed his hands.
Then, as Joseph was about to prick his finger, Zack put a hand on his and said:
"Dude, your hands are all wet-- go dry them off first."
Damn it! Why does he have to go?
Last night, Zachary came by with his mom and two sisters. We'd planned one last sleepover for the boys before he and his family leave Friday morning for their new home.
Over 400 miles away.
"Oh, Sandra-- I'm so sorry, but it's just too much," his mom tells me the moment they walk in. "We've got other people to see before we leave. I just can't let him do a sleepover tonight."
I look over at Joseph and Zachary-- neither makes a sound in protest, but their red-rimmed eyes say it all.
"Are you sure we can't do this?" I ask, not wanting to put more pressure on this woman-- but suddenly realizing that she might not fully understand what this means to these boys.
So we exchange Christmas gifts while the boys quietly make their way upstairs-- to Joseph's room.
Ten minutes later, I head up to tell them it's time.
Standing in the doorway, I look at the two boys sitting on the edge of Joseph's bed.
My son is crying-- while Zack just sits there open-mouthed, looking miserable.
I settle down between them, putting my arms around their shoulders.
"It's gonna be all right. You guys are gonna talk on the phone all the time. And we'll come visit, and you'll come back to visit, too."
Looking up, face drenched with tears, Joseph says quietly:
"It's not the same."
I rub his back, and then pull both boys in close-- no longer able to hold back my own tears.
"Zachary," I say, my voice catching, "you are like my other son... I love you... and I'm gonna miss you very much."
Then we all just hold onto each other.
A few minutes later, he's gone.
"What am I gonna do?" Joseph asks me.
"Honey, I know that no one will ever replace Zachary, but you've got a lot of other friends and- "
"I know, Mom. But they're not like him. We... we can just be together. We can be bored-- and it's okay. Because then we always find something, anything to do."
"I don't know what I'm gonna do without him."
"Mom, he's my little brother."
Thursday, December 20, 2007
Since August -- when we first heard the news -- I've tried very hard to put it out of my mind-- determined to follow Joseph's lead.
Sunday, December 16, 2007
Friday, December 07, 2007
"Hi-- is this Joseph's mom?" asks an unfamiliar voice.
"Yes," I say into the phone.
"Ms. Miller, this is Ms. G___ , Joseph's gym teacher."
His gym teacher?
Wait, Joseph called an hour ago -- right before gym. His blood sugar was only 140, and he had a ton of insulin on board, so I had him cancel the rest of his lunch bolus, and eat a bag of cheese crackers...
Suddenly I'm feeling very afraid.
"Is something wrong?"
"No, no- he's fine now.
"What do you mean? What happened?"
"Well, you see he came to class a little late-- because he had to check in at the nurse's office -- and then he went to the boys' locker room to change, and then came back out because he couldn't remember the combination to his lock. I gave it to him, and then he went back in."
"Well, the boys' locker room is on the other side of the gym, and we've had some problems with theft recently-- so we've been locking the door after classes start... "
And now I want to reach across the phone and pull the words right out of her throat.
"Well, I'm afraid that Joseph got locked in...
Still another pause.
For... uh... 20 minutes."
"You see," she continues, awkwardly, "the teacher from the other side of the gym must not have called in before locking the door-- but, it's all my fault. Joseph let me know he was here when he got to the gym, and then I forgot about him."
For about a second, I don't know what to say.
I just feel sick.
"His blood sugar was falling right before your class," I tell her. "This could have been really, really bad."
"Yes, I know," she says. "I'm so sorry."
"Yesterday, his blood sugar fell nearly a hundred points in less than 15 minutes... " I say, half to myself. "Wait- are you sure he's all right?"
"Oh yes-- he was laughing when we found him in there. I asked him why he didn't call out-- he said he did, and that he banged on the door, but no one heard. That locker room is on the other side of the gym. And well, shortly after he went in, I started videotaping my student teacher... and I just forgot about him."
For a few minutes, we talk about why this could have been very serious.
And about how the school will make sure it doesn't happen again.
Then I hang up the phone, turn and lean over the kitchen counter.
And very quietly, begin to cry.
Monday, November 26, 2007
"Hey, I call the wishbone!" Joseph announces-- before anyone takes their first bite of turkey.
And then a little more tentatively, "Is that okay?"
Everyone is smiling-- and no one objects.
"Sure," I tell him, "but only if I get a shot at it too."
"Mom," he says, eyes rolling, "you'll just wish for a cure for diabetes."
We all look at him.
"I can live with diabetes," he continues, laughing. "No. I'm wishing I have a good regionals on Saturday."
"Joseph-- a card tournament?"
"Oh, yeah," he says, beaming.
I pick up my wine glass, take a sip of Cabernet, and remember something that happened only two weeks before...
We'd just left his endo appointment-- our first in the new clinic building.
Though Joseph's A1c had gone down (from 8.1 to 8), I was really hoping it would have gone down further.
That we'd have gotten it below 8.
Standing in the elevator, I kept hearing his doctor's reassuring words:
"Yes, we want him in the 7s, but this is still good-- most kids we see in middle school move up into the 9s, sometimes higher. And Sandra, his growth is excellent."
His growth is excellent. His growth is excel-
"How about McDonald's?" Joseph broke in.
"Huh? For lunch? Ahhh... no."
For the next few minutes, we talked about food options while making our way down several long, shiny new corridors, on and off yet another elevator...
And that was when everything around us began to look less new-- and uncomfortably familiar.
We'd taken a wrong turn.
And just like that, we were standing in front of a fountain I hadn't seen in over three years.
A wall of large, rough-hewed stones-- water, pouring in ripples over the face of it.
And at its base-- a shallow pool, littered with coins.
We're back. In the hospital-- just outside the cafeteria.
The conversations with Ryan, the crying-- the desperate throwing of every piece of change I had into that pool.
It all came back in waves.
For a moment, all I could do was look at the thing.
And then -- stubbornly -- I walked forward, shoved a hand into my right coat pocket, pulled out two coins-- and handed one to Joseph.
"Here you go, Bud-- make a wish."
He paused, holding the quarter for about two seconds while looking thoughtfully at the falling water-- and then dropped his coin into the pool.
"Your turn, Mom."
Just as I was about to release mine, Joseph grabbed my arm.
"Wait! Mom- you're not gonna wish for a cure for diabetes, are you?"
"You bet I am."
"C'mon, Mom-- there are a lot worse things. What about AIDS? People are dying of AIDS. Or cancer?" he said, almost pleading. "This isn't so bad-- I can deal with this. Please, Mom - don't waste your wish."
I turned away from him, tossed my quarter, and watched it bounce off two stones before landing at the bottom.
"So what did you wish for?"
"What do you think?"
"Oh, Mom..." he said, shaking his head.
But then, he wrapped his arms around me.
And I'm not sure if he was thanking me or trying to make me feel better...
"So really, Mom-- what are you gonna wish for if you get the wishbone?
Wine glass still raised, I look meaningfully into my son's large brown eyes.
"What do you think?"
Tuesday, November 20, 2007
- Link to the person’s blog who tagged you.
- Post these rules on your blog.
- List seven random and/or weird facts about yourself
- Tag seven random people at the end of your post and include links to their blogs.
- Let each person know that they have been tagged by posting a comment on their blog.
Well, here we go...
#1. Recently, I made the rather shocking discovery that I am incapable of telling a joke.
Now, it's not that I'm not funny.
Oh, I'm funny.
I just can't tell a joke.
How do I know this?
Because my husband proved it to me after dinner one night last week when, despite much coaching on his part, I could not tell a simple joke.
It kept coming out like this:
"A guy walks into a bar with a duck on his head. Bartender says: 'Hey, what's that duck doing on your head?' Ughhhhh... Wait, wait-- let me try again. A guy walks into a bar with a duck on his head. Bartender says, 'Hey, why is that thing on your head?' GAH!"
And so on.
(Big-time kudos to whoever knows the name of the truly awesome movie this pathetically-rendered joke comes from.)
#2. I was a thumb sucker.
Until I was nearly 8-years old.
Always the right thumb.
When asked why not the other, I told people the left thumb tasted like pepper.
Two days after a perfectly normal (albeit long), intervention-free labor and birth-- I was admitted to the hospital with sepsis (an infection in the
weeks recovering at home before I could
finally take my boy outside for a walk.
Let's just say it's tricky.
#5. When I was very young, my mother's nickname for me was "Tilly Tippy Twinkle Toes."
#6. As kids, whenever my siblings and I watched the Wizard of Oz, we'd yell "I'm the ___!"-- and then call out the name of the character we wanted to "be" for the duration of the movie.
I always chose the Scarecrow.
#7. And finally, I will end this meme on a totally random note:
My 80s haircut.
Admittedly, not all that outrageous compared to some.
Ahhh-- but look at the inspiration:
And then, that inspiration fully (and finally) realized at an office Halloween party--
There you have it.
I realize that most folks have already been tagged, but I'm tagging nonetheless:
Tom, Scott Marvel, Val, Elizabeth, Jen, and Wil-- if you haven't shared your seven already and would like to join in the fun, consider yourself tagged!
Wednesday, November 14, 2007
He cried, saying that he didn't want to have diabetes.
"Mom, I'm scared."
We held each other, having absolutely no idea what this all meant.
I have such mixed feelings today.
Excitement-- about all of the attention WORLDWIDE that will be given the disease that invaded my son's body over three years ago.
And sadness-- over the fact that Joseph (and so many others) have to live with something that requires this much attention.
This is pretty damn amazing.
And really, really important.
Because think about it:
Every year approximately 70,000 children (nearly 200 a day) are diagnosed with type 1 diabetes-- a disease that, in the absence of insulin and careful monitoring every single day for the rest of their lives, would be a death sentence.
And even with insulin and careful monitoring, there is always the immediate danger of life threatening low-blood sugars; the specter of long-term complications.
Every. Single. Day.
Now, you might assume that most people have at least a basic understanding of this disease.
One that affects so many-- with such devastating consequences.
A disease for which there is no cure.
But, they don't.
In fact, according to a recent nationwide survey, "nearly 80% of the American public does not know the difference between type 1 and type 2 diabetes."
Worse, almost 70% believe a cure exists for type 1 diabetes.
So, people-- today is big.
Because today is all about awareness.
About education and understanding-- and hopefully, motivation to act.
Please take a moment and think about how you can take part.
Maybe it's as simple as taking a walk.
Or gathering with others to witness (and be inspired by) a symbol of hope.
Or maybe it's giving time or money to an organization that supports diabetes research, education, and advocacy; or one that gets diabetes supplies to those who don't have access to the medication and education they need to survive.
Whatever you decide, just please let it be something.
For my son.
For all of the children and adults living with this disease.
And for those of us who love them.
Friday, November 09, 2007
On an unseasonably warm afternoon, I agree to take Joseph and his two new friends (12-year old "G"and his 9-year old brother "R") to an outdoor skateboarding park about 20 minutes from our house.
Sure, I've got a boatload of laundry to do, a garden to clear, groceries to buy...
But man, it is one beautiful day.
So I head out to the backyard to tell Ryan the plan-- and to see if he's all right with it.
You see, he's been out there raking for almost half an hour, and I'm feeling a bit sheepish about taking off like this.
But once I tell him, Ryan leans on his rake, smiles and says:
"Bring some coffee, a book, and a chair-- it'll be fun. And don't forget your sunglasses."
"But what about Evan?"
"You don't want to be following her around while the boys are skating-- and besides," he says, grinning broadly and pointing at the massive pile of crisp, golden leaves in front of him, "she's gonna want to jump in these."
A few minutes later, I'm driving three loud, giddy boys to a skate park.
The whole way there, they talk enthusiastically about "kick flips," "pop shove-its" and "dropping in," while I half listen-- and at the same time, do some preemptive thinking.
Okay, so he had a late breakfast-- we'll just check his blood sugar before he starts skating, give him a snack, then go have lunch about an hour later.
His sugars were in a nice range this morning so we should be good.
Pulling into the parking lot, I see the skate park some distance away-- all concrete, peppered with several large ramps, platforms and metal rails, and surrounded by a chain link fence.
Immediately after I turn off the engine, Joseph and his buddies scramble out of the van, grab skateboards and helmets, and make for the park.
"Wait! Joseph, come here-- I want you to check your sugar before you skate."
R is already halfway to the park, but G rides his board back to the van with Joseph.
He watches carefully as Joseph pricks his finger, touches it to the end of a loaded test trip-- and then (as always) covers the meter's display with one hand until he hears the beep.
No insulin on board... he's gonna be pretty active...
"Bud, how 'bout you eat this chocolate chip-peanut butter granola bar?"
"Sure," he says grabbing the bar from my outstretched hand. Immediately, he tears the thing open and takes a huge bite.
"How about you, G-- would you like one, too?"
"Yeah-- thanks," he says, eyes lighting up.
Five minutes later, the boys are riding up and down ramps, doing tricks... and I'm settled in on my lawn chair just outside the park's open gate-- sun on my face; a thermos full of warm coffee in one hand, a book about XHTML (I kid you not) in the other.
Ten minutes later, Joseph falls.
"Bud, are you all right?" I call out, stifling a gasp.
"Yeah," he says, but he's slow to get up. He'd been coming down a high ramp when his board flew out from under him.
G skates over to him, but Joseph waves his friend off and is soon back on his board.
I close my book.
That was a tough one-- but he got right back up... awesome.
At that moment, while marveling at my son's resilience, I see him skate awkwardly over to another ramp, and then stumble off his board.
"Bud, are you- "
"I'm fine," he says.
But he's not. I know he's not.
And about 30 seconds later-- he knows it, too.
"Mom, I'm feeling kinda hungry," he says-- and then he walks slowly over to where I'm sitting, with G and his brother following right behind.
"Bud, you just had that granola bar, and I left the wipes in the car-- I'll be back in less than a minute, and then you can do a check." Turning away from him and his friends, I sprint toward the van.
But Joseph doesn't wait-- before I get far, he's calling me back.
"I'm 42!" he yells.
He was 125 less than 15 minutes ago... and he didn't even wash his hands...
I spin around, run back to where he's standing, and for about a second, am struck by how pale he looks.
How it happened so fast.
"Take five tabs, Bud."
Joseph shoves several large glucose tablets into his mouth, while his friends stand on either side of him-- both wearing the same concerned expression.
They haven't known him long -- maybe three weeks. And this is the first time they've seen him low.
After eating the tabs, Joseph insists on going back in the park with his friends-- and sitting at the top of a ramp several yards away while he waits for the glucose to start working.
"It'd be better if you stayed he- " I start to say, but the words fall away.
Full of fear, I watch him climb that ramp, and then I can only see his legs-- another platform obstructs my view.
It's hard, not going after him.
But he wants to be in there, with his friends-- even if he can only sit and wait.
A long 15 minutes later, he's back up to 89.
And after quickly eating a bag of cheese crackers, he's back up on his board.
That was a tough one-- but (thank God) he got right back up...
And again, I marvel at my son's resilience, as I watch him skate fast and sure over concrete-- to the top of yet another ramp.
Monday, November 05, 2007
Pulling away from the school, I check the rear view for cars-- and for a glimpse of Joseph's face.
He's looking out the window-- his expression, a blank.
"Honey, so you'll probably have to wear braces-- but it won't be forever. Maybe a year or two-- tops."
"I really don't want braces, Mom."
"I know, Bud-- but if you need them, we gotta do it. Hey-- remember how that orthodontist we saw a couple of years ago told us you had a 'subtle underbite'? He thought you'd need to wear head gear, and then braces."
"Yeah, I know," Joseph says in a resigned tone.
"Well, he also said we could wait a while-- so listen, I'm going to ask this guy about the timing for all of this. And if we can wait a year, then I think we'll probably do that... but Honey, if this orthodontist says we need to do something soon, then you'll likely get braces this year."
Though I really hope we can wait. It's a lot of money...
Twenty minutes later, Joseph is lying back in a fully-reclined exam chair-- his new orthodontist bending over him.
I take a seat several feet away, and watch gloved fingers move swiftly over my son's teeth and jaw.
"Hmmm... " the orthodontist says, fingers still moving, "the spaces between his top front teeth have kept those teeth out in front of the lower ones."
"You see, if we look at his profile, it's perfectly normal, nothing like, say, Jay Leno's-- but if we look at the rear molars, he definitely has an underbite. And a tricky one, at that."
Immediately, I'm out of my chair and peering into my son's mouth.
"Oh, yes-- have a look... right over here," the orthodontist says, pointing a gloved finger at Joseph's left rear molars.
"See how that second-to-the-last top molar is hitting the the last bottom molar? Well, it's not supposed to do that. And I'm afraid it's much more pronounced here than on the other side. This asymmetry is what makes it tricky."
"Let me show you with a model."
He walks over to his desk and picks up a pair of false teeth. Joseph climbs out of the exam chair and joins us, looking fascinated -- and a little nauseous -- as the orthodontist demonstrates how his bite is off, how his jaw is moving forward.
And how, over time, it will probably get a whole lot worse.
"All right then," I say, "what's the treatment plan-- and when can we start?"
"Now, Joseph is going to do a lot of growing over the next number of years, " the orthodontist begins slowly, "and because of this, we'll need to wait until he's done growing before trying to correct the issue."
"Excuse me?" I ask, staring at the man-- shocked.
"I'm sorry," he responds, an unmistakable note of sadness in his voice, "but you see, as Joseph grows, his lower jaw will likely continue to move forward... and well, trying to correct the misalignment before he's finished growing won't permanently correct the problem."
"And how do you correct the problem?"
"I'm afraid that he'll likely need surgery on his jaw-- at around age 20."
At first I don't say anything-- I can't.
Joseph steps away from the orthodontist's desk, goes to a corner of the room and sinks down onto several over-sized, stuffed animals lying there.
He leans back into soft fur, then turns his head away from us.
"Wait, wait- " I sputter, "the other orthodontist talked about head gear, about braces- I don't understand- "
"Head gear would be used to move the top jaw out-- Joseph doesn't have that issue. And braces won't affect the growth of his jaw. This is something that shows up in about 3 to 5 percent of the population
"Is there anything we can do now?"
"Well, we can take full x-rays to get a baseline-- so that we can monitor the issue- "
"But, is it possible that this won't be an issue-- that it won't get any worse?"
"Yes, that's possible," he responds, "but highly unlikely. It's more likely that the lower jaw will continue to grow forward-- more so when he goes through periods of rapid growth."
Before leaving, we set up an appointment for x-rays in a few weeks-- and a follow-up consultation in January.
"No rush," the orthodontist tells the young woman who sets up these appointments.
In the car, I tell Joseph that we'll do the follow-up, get a second opinion, and go from there.
"It's gonna be fine, Bud-- just fine."
After bringing him back to school, I try telling myself the same thing over and over.
But I'm furious.
Why does he have to worry about this, too?
I get home -- where Ryan is waiting -- and break down.
Then I go to the laptop, google "child with an underbite," and find out that this orthodontist's "wait-until-he's-done-growing-and-see" approach is the standard of care for this thing.
And then I see photos of older teens and adults who have waited and seen.
I also discover that the cost of the eventual corrective surgery is approximately $25,000-- and that insurance often doesn't cover it.
My son is dealt yet another blow-- and again, I'm helpless to stop it.
Wednesday, October 31, 2007
On November 14, 1991, the International Diabetes Federation (IDF) organized the very first World Diabetes Day.
Raise awareness about the disease, it's treatment-- and its potentially devastating consequences.
To further this cause, the United Nations passed a resolution last December recognizing World Diabetes Day-- making it a
"United Nations Day."
Every year, the IDF designates a theme for this very important day.
This year's theme:
Diabetes in Children and Adolescents.
Couldn't hit any closer to home, now could it?
I am often told that my son "doesn't look like he has diabetes."
That he "seems so healthy."
Many times, folks have wondered why I let Joseph eat "that cupcake" or "that piece of candy."
Or, in a maddeningly dismissive tone, others have said:
"So, I guess it's under control then."
As if the insulin he takes somehow "cures" his diabetes.
More people need to be educated about this disease. They need to understand that it isn't as simple as taking a pill or a shot.
If you're reading this blog, then you know a little something about how diabetes impacts the life of a child-- a child who has the support, education and tools to help him deal with this thing.
But even with all of these resources, it's hard.
The highs, the lows-- and the fear. They're all still there.
And what about those other kids?
The ones whose parents don't have access to the bare-bones tools needed to manage the disease.
Children who will likely suffer the worst complications of diabetes because their parents (and often, the communities in which they live) are without the money, education and support necessary to try to prevent them.
People need to know.
Please click on the banner to the right to learn more about World Diabetes Day-- and how you can get involved.
Thursday, October 25, 2007
The kids are finally in bed.
I sit down heavily on the couch, pick up the remote, and hit "rewind."
And then listen to the videotape spin loudly back to the beginning.
Joseph can just watch the tape tomorrow.
It's probably fine.
But I can't get that description out of my head-- the one I read earlier on the PBS website that started out sounding good:
This Teen Connection will include teens and expert guests who will discuss juvenile diabetes, its treatment and work that is being done to find a cure for the disease, and develop new therapies for people suffering from it.
But then, in the second paragraph:
Life expectancy for patients with the disease is often 15 years shorter than others. For patients, complications including blindness, heart disease, strokes and kidney failure are ever-present possibilities.
That was enough.
Now, don't misunderstand-- Joseph is well aware of the complications of this disease.
But still, he just turned twelve this month.
And recently, before going to bed he told me through tears that he's afraid of dying:
"I just want to be happy, and not think about it-- but sometimes when I go to bed at night, I'm scared."
Ryan joins me on the couch as I hit "play" on the remote.
A pretty young woman with dark hair welcomes us to the program-- and then tells us that:
"Every three minutes someone in the United States dies because of complications caused by diabetes."
"Tonight we're going to be talking with three teens who are living with Type 1 diabetes, and a doctor who specializes in treating the disease-- and we'll be taking calls from viewers."
She introduces her guests, and begins discussing their diagnoses, the symptoms of Type 1, and the differences between Type 1 and
Type 2. Then, a prerecorded video walks us through a detailed description of Type 1 diabetes.
And then the calls start coming in:
"I had a reading of 550," says an elderly male voice, "and I wasn't admitted to the hospital . . . should I have been admitted?"
"I have a son," says the voice of a worried mother, "and we have a lot of health issues in our family-- a lot of Type 2. [Should] parents be concerned?"
"I am in my mid-40's," another female caller says, "and I find myself every now and then craving something sweet . . . but as soon as I have it, I have an overwhelming need to lay down and take a nap and go to sleep-- is that a sign of possible diabetes?"
(Despite some of these questions, I start to wonder if I made the right decision-- if I should have just let Joseph watch this in real time so he could have participated in the dialogue.)
"Caller, go ahead with your question," says the perky, dark-haired host.
"I just wanted to say I have a comment," responds a young woman's voice. "I've been a diabetic for 21 years. I was diagnosed at the age of seven and I... um... had complications with my eyes... and now I'm completely blind at the age of 28."
I swallow hard, and stare at the screen-- at the three young people shifting uncomfortably on their stools.
In each of their frozen expressions, I see my son.
"I just recently got married," the caller continues, "and I had a baby. Blood sugars are in great control now . . . but from seven on up through 17, I was not in the best control."
Like me, Ryan sits there watching-- not saying anything for a few moments.
Just listening to this woman's story.
Willing it not to be our son's.
"Now I... um... you know -- without my vision -- can't see my baby's face, can't see my husband."
In response, the panel discusses how important it is to stay in good control-- and the wonderful statistics for those who do.
Even so, I keep hearing that voice-- long after we turn off the TV.
Saturday, October 20, 2007
To everyone who continues to come here -- even when I don't show up -- and to those of you who've commented or sent emails checking in.
We're all right.
Remember how, two posts back I mentioned that a ton was happening and that there were some things I couldn't talk about yet?
Well, I can now.
Ryan is changing jobs.
After teaching Java programming for over 10 years, he's burnt out -- has been for a while -- so much so that he wants to stop teaching altogether and return to software development.
As a result, he started looking-- and ended up interviewing for a development position with a very small (but growing) company.
He came home from that meeting more excited about work than I've seen him in a long time.
The people were great, the work sounded interesting-- and he could still ride his bike to the office (when it's not bitterly cold and snowy, that is).
Sounds perfect, right?
You see, Ryan hasn't done software development for a very long time-- so in order for him to make this change, he has to take a pay cut.
A big pay cut.
And then there's the health insurance.
For a while, we were unsure whether or not Ryan could even consider this job-- the benefits had to cover Joseph's pump and supplies.
We could never afford them otherwise.
Thankfully, after much research -- and much, much hand-wringing -- we discovered that while we'll have a deductible (ouch!), our copay will be less than our current one. And this new provider covers both the Animas and Medtronic pumps (but sadly, not the Cozmo).
So far, the only bad news about this new insurance is that Lifescan is not on their formulary-- thus our fleet of OneTouch meters will be useless to us.
(Any information folks could share about other meters would be much appreciated!)
Oh yes, and I'm still on the edge of my seat wondering if our new insurance will cover our 400 test strips a month.
We won't find this out until Ryan starts the new job in mid-November.
Now, in addition to stressing out about all of this -- and trying not to let the kids see me stressing -- I've been thinking about my own career.
I haven't had a paying job since teaching birthing classes nearly eight years ago.
(Man, I wish this job change were happening next fall-- when Evan will be in kindergarten full days -- right now, she's only in preschool a few days a week for 2 1/2 hours.)
I don't know.
I have a few ideas, but nothing really solid yet.
And nothing -- so far -- that will allow me to work around the kid's schedules.
Soooo... that's the big news.
There's more to talk about-- Evan's recent obsession, Joseph's first middle school dance, the end of the Fall Ball season, those dang Red Sox-- not to mention my non-paying, but really cool recent project.
But, if I'm gonna post something at all, I'd better stop here.
Saturday, September 29, 2007
"Mama, Mama, Mama... I want Mama."
I turn on the light, bend over, reach down and -- before my hand touches her skin -- feel the heat.
"Oh, Honey-- you're burning up," I whisper.
But she doesn't respond-- she just keeps rolling back and forth, eyes closed tight, moaning.
"It's all right, Sweetie-- Mama's right here, Mama's right here," I tell her, while gently stroking her forehead, cheeks, and belly-- my right hand pausing on her chest.
Beneath that hand, her heart beats frighteningly fast.
Jumping up quickly, I stumble over a sippy cup on my way to the medicine cabinet.
I grab the thermometer and a bottle of Children's Tylenol-- and then spend several long seconds searching frantically for a dose cup.
The cup, the cup... now where's that damn cup?
Moments later, I discover that Evan has a fever of 102.2.
It takes a while to coax her into drinking the thick cherry liquid-- something she normally doesn't mind doing.
But not tonight.
"I don't want to, Mama," she says, and then through tears, "I just... want... Mama. "
Early the next morning, we're sitting in an exam room at her pediatrician's office.
As the doctor listens intently to her back and chest, I hold Evan's hand-- inhaling and exhaling right along with her.
"I want to do a chest x-ray," the doctor tells me, "I don't like what I'm hearing on the right side-- she probably has pneumonia-- I just need to find out what kind so we can determine how to treat it."
Soon my little girl is standing on a low platform with her shirt off, shivering, while holding her arms high above her head-- a tiny lead apron wrapped around her hips.
Twenty minutes later we're standing next to Evan's doctor, looking at an image of my girl's lungs.
"Well, she definitely has pneumonia."
Noting my fearful expression, the doctor continues in a reassuring tone:
"But it's a kind that we can treat at home with antibiotics-- just make sure she rests. And keep giving her Tylenol for the fever-- it could take two to three days for the fever to resolve. She'll be fine... really."
Then, yet another fear begins to take hold.
"My 11-year old son has had a wet cough for a little over a week-- no fever, but he does have Type 1 diabetes, should I-"
"Contact his clinic and have him treated-- " the doc says quickly, "you don't want to take any chances with this. Oh- and how long have you had that cough?"
"Uh, well-- a little over two weeks, but- "
"It might be wise to go in yourself and get checked."
That was Thursday morning.
By Thursday night, Joseph and I had already taken our first dose of azithromycin.
In the meantime, Evan's fever has been relentless.
Friday at 5:30 AM-- when it spiked to 104.8.
We were this close to taking her to the ER, but then her fever broke two hours later...
Only to climb back up to 102 by lunch time.
And while Evan has had these insanely high fevers, Joseph has struggled with low blood sugars-- this morning, afternoon and evening, he was:
54, 49 and 67.
Monday, September 24, 2007
I'm almost giddy at the prospect.
So, why the long silence?
Well, there's been a ton going on-- some of it I can share now, some I can't talk about yet.
But I will soon.
Anyhow, a couple of weeks ago, Ryan -- who is almost never sick -- had a pretty bad case of "That Dreaded Vomiting Thing."
Thankfully, he recovered quickly (albeit seven pounds lighter)-- and (hurray!) neither the kids nor I came down with it.
But then -- right on the heels of said recovery -- I got "That Nasty Respiratory Thing."
Aches, pains, fever, wet cough-- you get the picture.
Still have the damn thing.
And now, Joseph.
Friday night, he was in the 300s and spilling ketones.
Same thing yesterday, while playing "fall ball."
So, what else has been going on?
Let's see, before all the illness hit there was lots -- and I mean LOTS -- of wrangling with the nurse at Joseph's new school (oh, the post that is coming... ) resulting in an ungodly amount of stress and:
Meetings with the nurse and Joseph's teachers, and an impromptu one-on-one with Joseph's endo;
Phone conversations with all of the above and the principal;
A number of insanely late nights on the laptop fleshing out the protocols for Joseph's care at school that were outlined in his 504 plan, but now apparently must be spelled out in ever more excruciating detail if I want my son to, say, NOT run in the 200s all day, every damn day of the school year.
Again-- oh, the post that is coming...
(No wonder I got sick.)
As August came to a close, we discovered the reason Evan no longer enjoyed bike rides...
She wanted to pedal, too.
(Thus, our Burley has been officially retired.)
Yet another highlight-- I mentioned that Joseph is playing fall baseball.
Well people, my boy's pitching is still something to see.
And finally, as we were driving home early last week, me hacking and sneezing away -- one hand on the wheel, the other groping desperately for a tissue -- Joseph called out from the back seat:
"Mom, I really hope I don't get sick."
"Why's that, Bud?"
"Because I don't want to miss one day."
"One day? One day of what?"
"Of school," he said, laughing and shaking his head-- as if the answer were just that obvious.
Doesn't want to miss a day.
Of middle school.
Now it's my turn to shake my head and laugh.
Tuesday, August 21, 2007
"Mom," Joseph calls out suddenly from the back seat, as we finally begin the long drive home from camp.
"I want to be more responsible for my diabetes care."
"What do you mean, Bud?"
"You know, like do my own set changes."
I catch a glimpse of his earnest expression in the rearview, and am struck with an odd mixture of pride and sadness.
"Really? Are you sure you want to do those yourself-- the insertion, too?"
"Yeah, I do-- not alone, though... I mean... I want you to guide me through it and just... you know... be there."
"Sounds good to me," I tell him, the words catching in my throat.
Soon after his quiet declaration, he's sound asleep....
And then - two nights later - it's time for a set change.
Sitting at the kitchen counter, I pull out his supplies: a new cartridge, infusion set, an alcohol pad, IV prep, IV 3000 tape-- and a small vial of insulin.
Just as I'm about to tear cellophane, Joseph walks into the kitchen.
"No, wait-- Mom, I really want to do this myself.
"Oh-- sorry, Bud."
He drops down into the seat next to mine, and I hand him the cartridge, still in it's wrapper.
And then I take a deep breath and watch-- literally having to sit on my hands in order not to jump in and help him.
"That's it, just smack the cartridge with a pen to get the air bubbles out and- you're doing great, but slow down... take your time."
"I know what I'm doing, Mom," he says calmly, while turning the filled cartridge between his finger tips, looking for bubbles. "I've seen you do this like a million times, and I even did it at camp. It's okay."
And he's right.
Within five minutes, he's done.
"Terrific job, Bud," I say smiling.
"Thanks," he responds with a grin. Then he stands and is about to leave the kitchen when he suddenly turns toward me, holding up his left hand.
I slap it with my right, and for a moment, the tops of his fingers hold onto mine.
And then he's gone.
That was over two weeks ago, and since that day Joseph hasn't looked back -- hasn't asked me to do a single set change-- even when he's been tired or has had a friend over.
He just does it.
I'm so dang proud of him.
But at the same time, sadder each time I sit and watch him do this.
Crazy, isn't it?
After all, this is what I want for him-- I want him to be able to do this stuff on his own.
The endless set changes, the monitoring, the trying to interpret the numbers-- trying to discover what his body is doing -- the supplies-- God, all those supplies -- keeping track, paying for them -- and always, always being prepared...
At some point, he's not going to need or want me to do any of it for him-- he'll carry this burden alone.
And to be honest, I'm having a hard time dealing with that fact.
Sunday, August 19, 2007
Thursday, August 16, 2007
For a moment, I look out across grass and trees and paths that lead to one-story camp buildings and cabins, and -- turning upward -- at a sky so perfectly blue that it doesn't seem real.
Then I walk forward and hand my "receipt" to the young blonde woman sitting at the check-in table just inside the campground.
"I'm here to pick-up my son," I say-- feeling both excited that I'm finally going to see him and nervous that something might have gone wrong.
"Terrific! Here you go," she says, handing back a piece of paper. "Just give this to his camp counselor, and you'll be all set."
I thank her, walk forward a few steps, and notice half a dozen tables set up in the grass just beyond the entrance.
Tables covered with swag.
Brightly-colored toys, bracelets, and bags; shiny-new One-Touch Mini glucose meters (in three new colors!), and stacks of white boxes containing Accu-Chek Multiclix lancet devices.
Without hesitation, I make a beeline to the Accu-Chek table and snag a free Multiclix before making my way to the far side of the camp-- to Joseph's cabin.
Strange... I don't see any other parents roaming around... hmmm... I know it said checkout was at 9am.
When I reach Joseph's cabin, I hear loud voices, whooping and laughter, but immediately after I open the door-- nothing.
"And the crowd... goes silent," I say with a grin, as I step into the room.
And then I notice the slightly disappointed look on my son's face.
"Ahh... hey, I can come back in a little while. I haven't even looked at the lake ye- "
"No, no, Mom-- that's okay, you can come in," Joseph tells me with a smile that says he's glad to see me.
"Yeah, yeah," say a number of boys, who are now smiling too, "c'mon in."
And then everyone is talking at once.
"We got the award for catching the most fish!" yells a dark-haired boy with large blue eyes, before dropping to the floor -- into a perfect lotus position -- and proceeding to "walk" around the cabin on his knee caps.
"Mom, I got the comedy award," Joseph says at the same time, "And I swam every day- oh, and you should have seen me in the mud pit-- I was completely covered in mud! And Tommy lost his shoes in there-- Mom, it was awesome!"
"Yeah, the mud pit was so cool," adds a tall, curly-haired boy, "I popped my knee caps like three times!"
Then several boys shout in unison: "Listen to this!"
Suddenly, I'm surrounded by eight adolescent boys -- my son included -- cracking knuckles, toes, elbows-- and God knows what else.
"Impressive..." I say, nodding and smiling at them all.
"Look- look at this," a boy with shaggy brown hair calls out, as he holds up his right hand and bends his finger tips so that they're perpendicular to his fingers.
"Ah yes, that is cool-- no doubt," I tell him, "but can you do this?"
And then I show them all my trick left thumb-- spinning and bending the thing at impossible angles.
"Wow... " they all cry, eyes wide.
"Excuse me," the boy's counselor interrupts -- my thumb in mid-spin -- "if you'd like to speak with the cabin nurse, she's ready for you in the common room."
I'd almost forgotten.
And so I return to the big comfy chair-- again sitting across from that kindly grandmother, her blue eyes bright and shining.
"Oh, Joseph had a wonderful week, just wonderful. And he was such a good friend to Tommy."
"Terrific. I'm so glad," I say.
Silently praying that his sugars were just as wonderful.
"Now, Joseph had some highs," the nurse begins, "and last night he was very high," she continues, sliding his log sheet across the table.
That's the first thing I see.
I swallow down hard, then look at the rest of it.
478 at 9pm, and 1.85 units of insulin; then HI at 11pm-- when he got a set change and 3 units of insulin via syringe.
Dang, that's a lot of insulin!
An hour later his blood sugar was 289.
He'd dropped over 300 points, and his 11 o'clock correction had not even peaked.
They didn't check him again until 8am.
No 2:30 check.
I quickly scan the rest of the log.
Not one check after midnight during the whole week.
And immediately I see the pattern-- meal boluses, snack boluses, corrections-- all stacking before bedtime.
Midnight blood sugars that alone seem fine, but if looked at alongside the highs at bedtime show a dramatic downward trend.
And then, morning highs-- rebound highs from overnight lows.
The Somogyi Effect.
"But why wasn't he checked at 2:30-- like we talked about on Sunday?"
"Oh dear--well, the camp doctor felt that it wasn't necessary-- and you see, Joseph did just fine."
Yes, he did, but my God-- what could have happened?
I keep it together-- resolving to speak with the camp doctor before next year.
To make this work.
And then I rejoin the boys.
Just in time to referee a game of "hot potato."
Sunday, July 29, 2007
We got home late Thursday night.
And as much as I'd love to tell you all about the road trip, I'm gonna have to save that for the next post (maybe the next two posts-- because really, it was that good).
In the meantime, we're back in the van, driving the two (relatively) short hours to diabetes camp-- Harry Potter and the Deathly Hallows wide open on my lap.
Still hoarse from reading aloud 524 pages during the long ride home from Massachusetts-- I'm back at it.
You see, we'd love to finish the book before Joseph gets to camp -- where someone is bound to have read it.
Probably several someones.
Who like to talk.
But there's just no way-- we've got over 200 pages to go.
Still, I keep reading. The book is awesome, and it helps keep my mind off of what happened last night...
Joseph goes to a birthday party.
He eats a burger, tater tots; cake and candy.
He gives himself three boluses of insulin in two hours.
Later, just after midnight, his blood sugar is 80.
Nothing scary there.
Except that he's dropped almost a hundred points in an hour.
Three glucose tablets.
And then, a little Potter while we wait for the sugar to stop the slide.
Only it doesn't.
Fifteen minutes later, we check again.
"Another three, Bud?"
"No-- four," he says.
Quickly, he crunches away at the large tabs.
Then, oblivious to the dusting of sugary powder on his lips and chin, he asks in a small voice:
"Mom, can I lay next to you?"
So I let him climb into bed between me and Ryan while I continue reading aloud. His head rests heavily on my shoulder. And I can't seem to get my mouth around the words in front of me.
I keep messing up.
After a few minutes, I stop reading altogether.
"Honey, do you feel like you're coming up?"
"No... not really... Mom, just keep reading."
What if he doesn't come up? What if...
But thankfully -- eventually -- he does.
Thirty-five minutes and seven glucose tabs after that first check, he bounces up to 118.
But that doesn't stop my mind from racing.
What if this happens at camp-- and, my God, what if they don't catch it?
So here I am the next morning, sitting in the van-- reading again.
Trying very hard to stay calm.
It helps that Joseph is so relaxed, so happy to be returning to camp for the third time.
I keep this in mind when later I'm seated in a large, comfortable chair opposite Joseph's cabin nurse-- a kind-looking, older woman with snowy white hair and brilliant blue eyes.
She tells me her grandson has type 1.
"Is he here-- at camp?" I ask.
"Yes," she says, eyes sparkling, "oh- but he's in another cabin."
Then we talk about Joseph-- I explain that he needs to be checked overnight, showing her the letter from his doctor.
"Well, actually, the camp director thought that checking him at midnight would be enough- "
"No," I say quickly, "that won't be enough-- he's got to be checked at least twice. Joseph can go to bed with a stable sugar-- even a high sugar -- and crash in the middle of the night. And he never feels it when he's sleeping. Never. And if he goes high, someone needs to get him up to use the bathroom."
I try to keep my voice steady-- not to panic.
"I see... well... " and then she lowers her voice, continuing in an almost conspiratorial tone, "Joseph's nurse from last year spoke with me about him this morning, and well, she thought it best we check him at midnight, then just come around and check him again at 2:30-- do you think that would be all right?"
"Yes- yes-- that would be great," I tell her, not even attempting to hide my relief.
"I understand," she says, giving my hand several pats. "He'll be fine. Just fine."
And for a few minutes, I'm sure she's right-- but then I remember what we were told at check in: that all of Joseph's cabin mates from the previous two summers were assigned to a different cabin.
He would be starting fresh-- meeting his bunk mates for the first time.
Well, all except one.
Standing in the doorway, I see that he's chosen the bunk next his friend's-- the boy he'd encouraged to come to camp for the very first time.
"Hey, I brought a ton of clothes-- probably overpacked," Tommy calls to Joseph-- as he hoists a large, bulging duffel bag onto his bunk.
"Me too," says Joseph with a reassuring smile, while struggling to unzip his own tightly packed duffel.
Moments later, the two boys head down to the lake.
"Do they have basketball here?" Tommy asks.
"Nah, but they have a mud pit," Joseph tells him.
They walk on -- away from me and Ryan and Evan.
The whole time, talking and laughing.
About what, I can only guess.
Wednesday, July 11, 2007
While gearing up for our trip back east-- to my home state of Massachusetts -- we hit a couple of snags that could delay our departure.
(More on these "snags" in another post).
We're still coming, of course-- just might arrive a day or so later than expected.
In the meantime, I'd like to set up a plan to rally with some d-bloggers (and any readers who would like to join us) in the New England area.
I was thinking that, because my boy is dying to see a baseball game while we're out there, combining a d-blogger get-together with a trip to the ball park might be fun.
Now, Joseph would go insane if we could see the Red Sox-- but I'm sure those are hard-to-get, very expensive tickets.
A really cool (and much cheaper) alternative would be to take in some Triple-A ball.
I just bought tickets tonight.
We're going to the Monday, July 23rd game. And there are still many seats available around the ones we got.
But they're selling fast.
So if you'd like to join us, comment or send me an email and I'll tell you exactly where we'll be sitting.
Game time is 7:05, but if folks arrive early maybe we could tailgate...
Monday, July 02, 2007
Feast your eyes on young Jonathan Bryce:
My brand spankin' new nephew.
Very soon, I'll get to hold this little guy.
And I can not wait.
We leave for Massachusetts in just a couple of weeks-- fingers crossed, our van will get us there without incident.
And why the the need for crossed fingers?
Because yesterday we had an incident.
A beautiful, sunny afternoon-- Joseph and I are sitting in front of the house talking baseball when we hear a sudden, muffled "BOOF!"
We look at each other, eyes wide, then turn toward the driveway.
"Oh. My. God." I say, while slowly walking around our '95 Odyssey.
There's a little glass on the ground beneath the window, but no glass -- and no object that could have broken the thing -- inside the van.
What the heck?
I look up and down our quiet, empty street-- then back at the damage.
"Mom, what happened?" Joseph asks, sounding a little scared.
"I have no idea."
But when I call the folks at our insurance company, they do.
"Spontaneous combustion,"" the rep tells me. "It happens. Air builds up in a vehicle, combines with the heat, and literally blows out a window."
Just glad it didn't happen during our road trip.
Sunday, June 24, 2007
Sorry for the long silence.
There's so much to tell, but -- with the kids out of school for the summer -- so little time to tell it.
I'll do my darndest to post more as soon as I can.
In the meantime, here's something that happened just today...
4:35 in the morning.
Bleary eyed, Ryan sits on the floor holding Joseph's pump.
And for just a few seconds, the only sounds in the room are our son's endearing snores-- and his pump's not-at-all endearing alarm.
"Call for service," Ryan says quietly, while squinting down at the pump's display. "I just pop out the battery, right?"
"And we've got to rewind and prime it," I remind him.
He disconnects the pump from Joseph's hip, then slowly gets up and leaves the room in search of a coin to unscrew the battery cap.
A moment later, he sits down next to me on the edge of the bed.
As Ryan pops the battery out, counts to three, then puts it back in-- I remember something.
"Wait a minute," I say, "we had one of these alarms not long ago. And the last time I called Animas about an alarm, they said we should be concerned if we see two or more in... I think they said 30 days. Let me look at the history."
Ryan hands me the pump.
I go to the main menu, push "History" and then "Alarm."
Two additional "Call for Service" alarms are there-- on May 1st and the 25th.
I get back to the main menu, go to "prime/rewind," pull out the pump's cartridge, press rewind, and listen to the piston rod whir down...
A couple of minutes later, my still snoring son is reconnected to his insulin pump.
And I'm back in bed, unable to sleep.
At 8am, I'm on the phone.
Unfortunately -- because it's Sunday -- I get an answering service.
A woman tells me that someone will call back soon.
Sitting quietly on the couch -- the phone in one hand, Joseph's log book in the other -- I'm not even angry.
Five minutes after leaving a message, I'm calmly sharing our alarm history with an Animas support person.
She listens very carefully, takes down the error message numbers, and then asks:
"What is the serial number on Joseph's pump?"
I tell her.
"We'll get a replacement out to you first thing tomorrow morning-- oh, and what color is his pump?"
"Oh, I'm so sorry-- we always send replacements that are the same color as the original pump, but I'm afraid we're out of black in that model. We only have blue and silver."
"Really-- " I say, and without hesitating:
"We'll take the silver."
And then, I'm smiling.
Because -- despite the fact that we're about to receive our sixth pump in two and a half years -- Joseph is gonna be dang happy about this new silver one.
Monday, June 11, 2007
Well folks, we finally had that second 504 eligibility meeting-- and I finally have a few moments to tell you about it.
Early Friday morning, Ryan and I take seats around a large circular table in the principal's office at Joseph's school. Our advocate sits across from us.
The principal (she wasn't a part of our first meeting), the school psychologist (L) and the School District's 504 person (SDP) are already seated at the table.
Noticeably absent are the School Nurse (B) and Joseph's teacher (Miss W).
"B will be in shortly-- she has to train someone last minute for a field trip," the principal tells us, "but I'm afraid Miss W can't be here... "
" ... her sister was in a serious car accident last night-- she's at the hospital with her right now."
For a moment, all I can think about is Miss W and her sister.
But then SDP starts talking.
She first explains that Joseph's "learning" (the criteria used in our previous meeting) is not being "substantially limited" by his diabetes, as demonstrated by his excellent grades.
Then she begins walking us through the requirements for protection under Section 504.
At this point, our advocate stops her-- saying that she's confusing 504 with IDEA -- another disability law -- and that learning doesn't have to be affected in order to be covered by 504. But then he also tells her that learning is affected by diabetes.
SDP responds by saying that she is very familiar with Section 504-- that she is the 504 coordinator for the District.
She insists that we need to consider another major life activity besides learning-- and then determine whether or not Joseph's diabetes "substantially limits" his ability to perform that activity.
"Glucose metabolism is the major life function most impacted by diabetes," she tells us.
Immediately, I agree.
"Now, the kinds of things we look at with respect to metabolism," she goes on, "are the number of 911 calls, the number of absences from school due to diabetes and -- now it says here that Joseph sometimes 'acts drunk' when he's low-- the nurse can tell us how often that has happened."
I listen very carefully, and then slide a document to the center of the table.
"I don't think anyone here can argue that Joseph's glucose metabolism isn't substantially limited," I say, pointing to the document, "especially if we look at the numbers. For example, from May 1st through the 29th, Joseph had":
- 123 Glucose tests with a reading of greater than 200 that required treatment with insulin;
- 62 Additional episodes of “mild” hyperglycemia (between 150 and 200) that, depending on how quickly his blood sugar was rising or how long he’d been “high” also required treatment with insulin;
- 24 Episodes of hypoglycemia (less than 70) requiring treatment with glucose and additional carbohydrate;
- 14 Additional episodes of hypoglycemia in which – though blood sugar was in the (low) normal range – Joseph experienced symptoms (due to a rapidly falling blood sugar) and required treatment.
In that letter, his endo also writes that even though we are "quite diligent in [our] pursuit of excellent metabolic control for Joseph, the reality of living with Type 1 diabetes in 2007 is that the patient experiences episodes of hypoglycemia and hyperglycemia weekly, often daily."
We discuss the contents of these documents for a while, and even though SDP turns out to be far more reasonable than I'd hoped-- she clearly still believes that Joseph would be fine with just a Health Care Plan.
"I realize that we've had a Health Care Plan in place that, for the most part, has been very effective," I tell her, "but we have had issues. I've got some examples right here-- in fact, just this week we had an incident. I'll read you a description":
"We want to ensure our son's safety at school, and we believe a 504 -- a legally binding document -- will help us do that."
On 6/6/07 at 10:35, Joseph telephoned from the nurse assistant’s office.
He had a low blood sugar of 49.
After instructing Joseph to take four glucose tablets, I asked to speak with the nurse assistant (K). I reviewed my concerns about the fact that Joseph has been having a lot of lows lately– more so on days when he’s had PE. And since Joseph just had a low and would be going into PE, I wanted her to have him check his bg before that class– and if vigorous activity was planned, I wanted Joseph to have extra carbs.
I also wanted the PE teacher to be made aware that Joseph had a low, and that he should watch for those behaviors that might indicate Joseph’s bg was falling.
This is when K told me that the PE teacher has been out– that a substitute is teaching PE. I asked if B (the nurse) had done an in-service with him to bring him up to speed on Joseph’s diabetes-- she said “I don’t think so.”
She then offered to have the substitute call me.
Ten minutes later, the PE substitute phoned me at home. I asked him if he’d received training about my son’s diabetes.
He said “no.”
I asked him if he’d seen the one-page Health Care sheet I’d put together at the beginning of the year for all of Joseph’s specials and substitute teachers (the PE teacher has one of these sheets).
He said “no."
I asked him if he was aware that my son wears an insulin pump.
He said “no.”
I asked him if he was even aware that my son had diabetes.
He said “no.”
A few moments of calm discussion, and then SDP instructs the school psychologist to change the criteria on the 504 evaluation from "learning" to "glucose metabolism."
Our conversation then turns to those accommodations SDP feels we should add to Joseph's 504 plan for middle school.
And for the first time since this whole process began, I feel like we're all on the same team.
Wednesday, June 06, 2007
My son plays in his 12th baseball game of the season.
During the first inning, he struggles on the mound-- walking a couple of batters, letting go a couple of hits.
But he keeps it together, allowing only one earned run.
(Once back in the dugout, he discovers his blood sugar is dropping fast. He eats a couple of glucose tabs, some peanut butter crackers.)
Over the next two innings, he gets two solid hits -- driving in five runs.
(And his blood sugar begins drifting upward. He steps out of the dugout, lifts his shirt, and reconnects his pump. I give him a tiny bolus of insulin, while his eyes remain fixed on the teammate who steps up to the plate.)
In the bottom of the final inning, he's catching.
His pitcher hits the second batter he faces and then -- frustrated and upset -- walks several more.
My son heads out to the mound, removes his mask, puts a hand on his friend's shoulder and tells him something that none of us in the stands can hear.
Something that causes both boys to smile.
He returns to his position behind the plate, squats down low, left hand resting on the small of his back.
And his buddy throws him a perfect strike.
Their team wins-- their 10th victory of the season.
(Though to me, every time my son steps on the diamond, he wins.)
Monday, May 28, 2007
Two months ago I wrote a post about our efforts to get a 504 plan put into place for Joseph.
Well, I finally had the 504 meeting (on May 8th) with Joseph's teacher, school nurse and school psychologist. The next day, our team's evaluation and 504 plan were submitted to the School District.
I thought we were all set.
Until last Tuesday-- when I received an email informing me that the School District's 504 person (SDP) "is concerned that there is not documentation" that Joseph's diabetes is "affecting a 'major life activity,' as narrowly defined by the 504 law and guidelines."
You've got to be kidding me.
SDP also feels that because my son "has demonstrated through test results and grades that he is a high achiever and thus he is learning adequately" our 504 team must meet again "to reconsider criteria for a 504 plan, with [SDP] guiding the team through this discussion."
It gets worse.
SDP believes that "there may not be a justification for or need for a 504 plan at this time" and when we meet, "will have suggestions for the transition to middle school and working with the middle school staff" regarding Joseph's "health care plan" and "any possible accommodations that may be appropriate."
Really, really tired.
But if they want a fight, that's exactly what they'll get.
So far, these are the steps I've taken:
- Forwarded SDP's email to Joseph's endocrinologist, along with an urgent plea for a letter stating the reasons why she believes 504 protection is both appropriate and necessary for my son.
- Spoke with an attorney at the Office for Civil Rights and was told that I can file a complaint if the District refuses the 504. That Joseph should indeed qualify for 504 protection.
- Contacted a Legal Advocate from the ADA, read him SDP's email and asked for help. His response: "I want to be at that meeting."
- Sent an email to my JDRF support group's leader asking for names of those who've been through this battle before-- and won.
- And finally-- not slept.
I've also been worrying.
Because several weeks ago a secondary school principal told me that we were not going to get a 504 for Joseph-- that "the District will never go for it-- they just don't do 504 plans."
She's never even seen one.
But that's not all.
For you see, while the middle school we've chosen for Joseph is awesome, and (get this) the school nurse there has Type 1 Diabetes and wears a pump herself, she is adamantly against 504 plans for kids with diabetes.
How do I know this?
She told me.
Last fall, at an ADA Safe at School Seminar on how to create a 504 plan, this nurse joined the audience and played devil's advocate throughout the presentation-- even after the seminar, going so far as trying to talk those parents in attendance (including me) out of doing 504s for our kids.
Also, Joseph's endo informed me at our last visit that "many times" their clinic has "butt heads" with this nurse over the issue of 504 plans for her patients.
Bottom line-- if I don't put this thing in place now, it's gonna be A LOT tougher getting it next year when we'll be dealing with this nurse.
So there it is.
If any of you have gone through this process successfully, please share your stories.
Based upon what criteria was your child deemed eligible for 504 protection? Was your child doing well academically? How did you overcome any resistance to the 504?
Oh, and by the way, SDP has scheduled our meeting for June 8th -- just one week before school lets out.
For those unfamiliar-- Section 504 is a federal law that protects a child with a disability from discrimination and ensures that accommodations are made for their condition (i.e., allowing a child with diabetes to test their blood sugar in the classroom, re-take an exam if their blood sugar is low, etc... ).
If you have a child with diabetes, and that child attends school, you want your child recognized as "eligible for 504 protection" and you want to put a "504 Plan" in place.
A Health Care Plan alone is simply a guide-- not a legal document. In other words, no school district employee is legally required to follow it.
For more information, go here and here.
Tuesday, May 22, 2007
This happened almost three weeks ago -- in the midst of all that eye business.
Leaning over, I whisper:
"Honey, it's time for you to wake up."
A low sigh.
"C'mon, Sweetie-- you've got school today," I say while gently stroking a warm, slightly damp cheek.
That's when I smell it.
"Honey, Honey-- wake up."
Eyelids flutter, and then a very tired voice:
"I don't want to get up."
"Honey, did you have an accident?"
A confused look.
"Did you wet the bed?"
Her eyes widen.
"No, Mama-- I'm just sweaty," she says.
But the smell is unmistakable.
Minutes later, I'm a few feet outside the downstairs bathroom. The door is open, Stephanie Miller chuckles on the radio, while Ryan -- shirtless, his back to me -- washes his face.
For a while I just stand there.
Damp underpants held loosely in my shaking right hand.
This is too much . . . it can't be happening.
Finally, in an unsteady voice I tell him.
"Evan had an accident."
"What?" Ryan says, turning his wet face toward mine.
"She wet the bed," I choke, "Ryan-- she's never done that before-- even when she was potty training -- no diapers, no pull-ups. Not since she turned two."
"Okay," he says in a cautious tone, "we'll just check her."
She's already eaten breakfast by the time I can convince her to let me check her blood sugar.
I drop heavily into the chair next to hers.
"Would you like to watch something on TV?" I ask weakly-- deciding that today she can miss her cooking class at the Y.
Soon she's sitting happily in front of Sesame Street.
While -- for nearly an hour -- I pace nervously around the house, finally ending up seated on the edge of my bed, unable to do anything.
Until the bedroom door bangs open and in runs Evan, brown eyes shining.
"Mama, let's play ice cream shop!"
(To play this game we have to go outside where Evan can work in her "shop" behind our birch tree. She creates fabulous imaginary frozen treats -- like "cotton candy-sugar cookie ice cream" -- and serves them to her favorite customer-- me.)
"Sweetie, why don't we check your blood sugar again first?"
"I don't want to-- Mama, it hurts."
"Oh, Honey -- sometimes we have to check our blood sugars-- hey, do you want me to use that little meter?"
I pull out our new, unused OneTouch UltraMini.
"Awwww-- it's so cute. Mama, can that be mine?"
"No," I say sharply.
Then in a softer tone: "No, Honey-- we're just using it."
I twist the barrel of Joseph's lancing device so that a fresh needle is loaded, then dial down the lancet-- from the highest to the lowest setting.
Holding my breath, I take one tiny, four-year-old finger-- and poke.
Five. Long. Seconds.
I blink back a sudden rush of tears.
And then, very quickly my mind reviews the data:
Before that first check, I only wiped her fingers with a damp paper towel-- and she'd eaten a banana just 20 minutes prior to the test.
She hasn't been excessively thirsty.
She hasn't lost any weight.
Nor has she been urinating frequently during the day.
"It's all right," I say-- still staring at the meter's display. "It's all right."
"Mama, I'll never have diabetes. Right?"
My head snaps up.
The question startles me. To hear her say it out loud like that.
"Oh, Honey-- I don't think you will."
And with those words -- and that test -- I feel myself slowly climbing out of a very deep, very dark hole.
For a long minute I just sit there, looking into my girl's beautiful, expectant face-- until finally I clear my throat.
"Hey, how 'bout we go play some ice cream shop?"
With a huge grin, my little monkey leaps out of her chair and makes for the door.
Three days later, Evan had a second overnight accident.
But, since I began insisting she go to the bathroom before bedtime, it hasn't happened again.
I also continue to do random bg checks: overnight, she's been in the 80s; two hours after meals-- 80s to 90s; and first thing in the morning-- 68-75.
And (knock every stick of wood in the house) we haven't seen another high.