Trust and Friendship

Last night MJ had her first full-blown sleep-over.  I haven’t ever said NO to a sleep-over. She just hasn’t asked.

It is sort of like when she was a toddler, and we used to take nightly walks through the park. We never got her out of her stroller to swing or play on the playground, because we knew once we started, a walk through the park would never be so simple.   (That all ended around the age of 2.)

So, when I suggested a sleep-over for her upcoming 14th birthday, her eyes lit up and she invited 4 friends.  Three were going to spend the night; the fourth girl was only going to stay until 10:30 or so. She had never spent the night at someone’s house. She has T1D.

She is my Ian.

Ian has never been a sleep-over candidate – even prior to his diagnosis.  He doesn’t do well with things like that. He even has a hard time sleeping at his grandparents’.

And now, with T1D, he’s asked a few times, but we’ve always found alternatives to sleeping over. He has whined a few times, “I’ll never be able to prove I can stay all night if you don’t give me a chance!”

True.

But I also know Ian. The anxiety of the change in routine would be enough to literally make him sick and he’d  be home anyway.

Anyway, MJ’s friend was the last to arrive, but the girls welcomed her and were clearly glad she decided to come – at least for a little while.

A few hours in, MJ comes down and said, “Annie wants to spend the night!”

She was followed by a trail of girls…one I hardly recognized. They had given Annie a makeover; they straightened her corkscrew curls and put a flower in her hair.

Annie’s mom brought over her sleeping bag, pillow, and overnight bag. And her Lantus.

I could tell her mom was apprehensive and Annie was maybe a little nervous.  But of all the places in the world, this was a good place to start the overnight adventure.

I smiled as I thought of one of my favorite lines from Ferris Bueller’s Day Off, when the creepy garage attendant takes the Ferrari from Ferris and Cameron: “You guys got nothing to worry about, I’m a professional.”

I picture Annie’s mom saying, “A professional what?

True, Annie’s been a T1D for a year or so longer than Ian. But I get it and I could tell her mom did too.

I kindly said, “Are you ok with this? She’s gonna be ok. I can get up at 2:00 and check her. MJ knows what to do. And I have juice boxes!”

She smiled, hugged Annie goodbye, and walked away.

I don’t think I could have done that so easily.

But, what a milestone.

My heart melted when MJ carefully measured out Annie’s brownie and ice cream, just like she’d do with Ian’s.

And then again, when the girls told me that they are all going to do the Diabetes Walk next fall. They want to form a team for Annie and Ian.

I believe they will make this happen.

The only glitch in this experience…planning a sleep-over on the night we change the clocks and lose an hour of much-needed sleep. The girls watched the time miraculously change from 1:59 to 3:00 on their phones.

I have to trust that it was awesome, because I got more sleep than anyone! I was sound asleep by 11:00!

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Day After Day

I guess diabetes makes you grow up faster than you should.  You are forced to take care of yourself in a whole new way. Instead of being a 10-year-old who sneaks candy, spoils his dinner, and has midnight snacks, Ian has to be a disciplined young man who politely turns down treats, who settles on cheese for a snack, and who semi-graciously accepts he can’t have seconds if we didn’t allot for it with his meal time shot.

What a tough place to be in.  Wanting to make your own decisions, being able to make many, but facing limits all the time.

Ian’s quest for independence has been slowed down by a disease that is out of his control.

I guess after a while you just get used to it.  But that doesn’t mean he likes it. And sometimes it must just get so old…especially if he thinks to himself that this is the rest of his life.

That kind of hit me the other night.

Thursday night Ian had to eat an extra 110 carbs due to a mix up of meds.  His dad called to tell me and I knew all was well and under control. Ian was drinking a coke and eating A LOT of Doritos to compensate for 7.5 units of Humalog.

I was worried but we’d dealt with this before, so it wasn’t as scary. Besides, he loves Doritos.  He must be thrilled.

So, I sent him a text.  His reply made me feel bad.20140126-113738.jpg

It’s sad that a bowl full of Doritos can bring such a response.

I could hear it in his voice, “I’m just tired of this.”

Think of what he hears on an average, uneventful day:

Good morning.
Wash your hands and check your blood sugar.
What was your number?
Here’s your shot.

On the way to school.
Make sure you check at 10:00 to see if you need a snack.

At lunch.
Wash your hands and check your blood sugar.
What was your number?

After school.
How was your day? 
Did you have to check your blood sugar before lunch?
Were you low?
Did you have a snack at 10:00?
Did you eat all your lunch?
Was the tray what they said it would be?
Wash your hands and check your blood sugar.
What was your number?
Go get a 15g snack.

Before dinner.
Wash your hands and check your blood sugar.
What was your number?

After dinner.
Do you feel low?
I hope I counted those carbs right. Tell me if you feel low.

Before bed.
Wash your hands and check your blood sugar.
What was your number?

Tucking him in.
Night buddy. I love you. Wake me up if you need me.

Geez…no wonder sometimes he just wants to lay on the couch, put his headphones on, and be left alone.  He blocks out all the questions and the “nagging.”

And me joking about Doritos….that was probably just annoying.

As I was thinking about this post, Ian turned on one of his favorite songs for us to listen to. For real….this song is as much his favorite right now as White Walls. 

My little boy with the old soul.

Growing up so much faster than he should.

I love him so.

A New Year and a New Attitude!

Back to school! Year 18 for me and 5th grade for this boy! (Taken by 8th grader MJ)

Ian spent one semester of 4th grade without diabetes and one semester with diabetes.  The second semester was scary, exhausting, stressful, and new.

Not only did summer vacation give us time to relax as usual, but the three months off made a natural break between last year and this year.

Last year Ian used to call from the clinic almost every single day, if not twice a day.  He’d call when he was high, when he was low, when he had a headache, when there was an extra recess, when there was a birthday party treat….

And the nurse from the hospital called a lot.

And the school nurse texted me often.

And Ian’s stepmom texted me too.

That’s a lot of phone calls and texts when you are working.  And believe me, I was happy to have the calls. We were sorting things out and learning the ropes, adjusting to each new event and situation as we went.  But with every phone call and text, I was constantly reminded of the fact Ian had diabetes and I would become distracted, flustered, overwhelmed.  I was definitely not at my best at work last year.

Family comes first though and somehow we’ve gotten over that Why-Does-Everything-Throw-Us hump.  Life feels more normal than it has in 8 months.

Ian has called one time in eight days. What an improvement!  That says tons about his comfort and understanding. He understands highs and why he feels like crap. He also knows that there isn’t much I can do for them. (When we eventually get a pump, maybe there will be an easy fix?)

He is never one to have a lot of lows and when he does, he knows what to do. I honestly don’t think he’s had any since school started though.

Ian’s teacher is super sweet (just like last year) and at our before-school meeting, it was obvious she sees 5th graders as responsible young people and wants them to be confident and independent.  (That is not to say that she leaves him hanging out there on his own. It’s hard to explain but she has a trust/respect for them and gives them a chance to handle things on their own. She does student-led conferences if that tells you anything.)

For example, Ian tests in his classroom now rather than going to the clinic every day for snack and unless he’s feeling really lousy he handles things in the back of the room by her desk.  We felt, as a team, that he was totally capable of handling this part of his diabetes on his own.

The school nurse is also making any calls or texts to Ian’s stepmom before she tries to get in touch with me this year.  She works part-time, is more accessible and is equally knowledgable about everything. (I could not ask for a better stepmom to my kids.) This is a huge relief for me and I feel much more relaxed and focused at work.  The first two days were weird when I didn’t hear from anyone, and maybe it sounds a little selfish, (not my intent) but I kind of like it this way. 🙂

Another great thing is lunch. Last year, Ian packed his lunch every day for the entire semester. Every. Single. Day.

And he doesn’t eat lunch meat and he’s really picky, so it was peanut butter sandwiches or peanut butter crackers. Every. Single. Day.  We had to pack exactly 75g every day as well, so they nurse could give him exactly 1.5 units of Humalog.

This year, we have a plan with the nurse where she adjusts his meds  according to his carb-to-insulin ratio (currently 1:25.) We write a little note and throw it in his lunch box every day. He has been able to buy the tray lunch and pack extras. He doesn’t drink milk, so he brings his own drink and then extra fruit, yogurt, protein bar, etc to round out his lunch. He’s still a very picky eater but there are many main dishes on the tray that he likes  (Tornado nachos, popcorn chicken, hotdogs, chicken patties, to name a few) and now he can have a variety of lunches and not just peanut butter sandwiches, which frankly make me want to gag now after making them for so many months.

We have been pretty good about determining the carbs in the tray lunch based on our knowledge and experience, a booklet from the school cafeteria, and Calorie King. Yesterday I printed out September’s calendar and marked all the carbs.  I send a copy to his stepmom and she checks it out and we make adjustments and cross our fingers. I am keeping a copy of all the menus and will probably have things memorized in a matter of a month of so. (Isn’t it funny how carbs are like math facts? It’s just something you memorize. I never imagined it would be so automatic.)

The heat has been horrendous this year.  None of our buildings have air conditioning and it’s now decided to be summer-like with temps in the high 80s (outside and in the classroom.) My room the other day was 84 degrees. Ugh…..

That has messed a little with Ian’s numbers.  He’s been in the land of 200+ a lot and we made a tiny adjustment to his Lantus but we hope when the heat breaks later tonight that things will level out.

I could not be much happier about the start of the school year. After the road we’ve been down, things seem almost easy.

Independence

Last night I dropped Ian off at his friend’s house for a party.   Things like this are not easy for a D-mom.

It’s scary to send him somewhere I will not be.

Luckily, this boy’s dad is diabetic (Type 2) and a teacher and their older son has friends with Type 1.

They also live about a block away.

And Ian’s friends all look out for him.

I had to stick around a little while before they got to dig in to the pizza so I could give Ian his shot. The host of the party, a charming little dude, says, “Guys we gotta let Ian do his thing and then we can go eat in the basement.”

After a brief review of emergency procedures, I left feeling pretty good. (He has been over there several times so this was just a review.) Ian seemed comfortable. His parents were comfortable and I knew I wouldn’t be far away.

The parents took the boys to play basketball at a church after dinner and his mom texted me to let me know all was well.

The original plan was to go back at 9:15 and bring him home for the night.  Some of the boys were staying over, but we are still working on that. 😉

When MJ and I stopped over at 9:15 (after some dinner and shoe shopping) and the boys were playing tag and having a blast.

And Ian reeeeeealllly wanted to stay and watch a movie with them, after they had a fire.

Since it was only a block away, and since he was having  a stellar blood sugar day, and since he was so nice when he asked…I told him he could stay til 11 when the mom was “pretty sure the boys would be zonked out.” (Haha!!)

So I gave Ian his Lantus, chatted for a few minutes and then asked him what he thought he would eat for his bedtime snack.

He cut me off…”Mom, I got this. I will eat like 15 carbs here and then have some milk when I get home at 11:00. I know what to do.  I’m good. I promise.”

And when I picked him up at 11:00, he was ready to go. He was sweaty and stinky and tired and happy.

All a boy could want.

Independence Day!

Happy 4th of July!!

Today marks the 6th month mark since Ian’s diagnosis.

Half a year already?

That doesn’t seem possible. And the same time, sometimes it feels like half my life.

And then I realize it’s the rest of Ian’s life.

I’ve been thinking a lot about this milestone as July approached….and actually, all the milestones of a little boy who is growing up.

Diabetes has been a power struggle for Ian. The loss of control as has probably been the hardest thing for him.

Here he was, on the verge of being more independent, making choices, having a little freedom, and some small privileges and he lost control over the most personal thing – his body.

Never mind the clothing choices he still makes, the games he chooses to play, the friends he wants to be with, and the daily decisions.

He still has choices about his food, but those choices are ultimately controlled by diabetes – when he can eat, how much he can eat, what he can eat, when he has to test…

This really hit me the other night as I was tucking him in, “Don’t worry, Mom. When I wake up and I start getting hungry, I’ll wake you up.  But I’ll try to let you sleep in some.”

The mere fact that he can’t quietly get a bowl of cereal or make a Poptart without me (and medicine) is just not fair.

A 5th grader should have that freedom and feel that independence.

Yesterday he and I took an early morning bike ride and I let him lead. (Usually that is M.J.’s job but she was still asleep when we left.)  He was so excited to choose the route and the competitor in him kept pressing on, making the ride longer and longer.  We talked the whole bike ride about everything under the sun and when we got home and mapped the route on the iPad, we were shocked to see it was 5.5 miles – our longest ride of the summer.  He was so proud and if you know Ian, this will only make him up the challenge and try to ride farther the next time.

Although it was only July 3rd, I found it fitting that the day before his half anniversary we celebrated his independence.

(Today also marks the day that I break free from the “Thoughts” title on every post. It’s more than thoughts about diabetes, it’s our life.)