The Same Story. A New Chapter.

A few days ago I went through some old posts, desperate for some reminder that things will get better.

I found several posts that had me in the same, or similar, place with the same, or similar, feelings…. (All of these posts were written before I went public with this blog.)

On the days that Ian is with his dad and stepmom, I scramble to get things done around here and I try to get some extra sleep, but breaks don’t seem like breaks.

We’ve had some really awesome days.  In fact, he’s had three days in which his numbers were darn near perfect.  And then…BOOM…Hello 300s!! We meet again…..  I had to remind myself diabetes can’t change the past.

As I peel off the old pod (and fight the squeamish feelings I feel) and try to distract him from the pod change, it breaks my heart.  It’s stupid and unfair that he has to have this disease, and he has to endure these things. All I can think is “I’m so sorry this happened to you.

As Ian struggled through a baseball practice, his dad and I were texting about the unfairness of this all and how we’d trade places with him in a heartbeat.  Being a parent of a child with a chronic illness it not what we signed up for, but we will do whatever we have to do.

And doing what we have to do…well, it’s exhausting. I’ve already explained this; I’m so tired. 

I know that having this pump is the beginning of a new chapter for Ian. He will be able to be so much more independent and he will need this as he gets older.  He has already mastered the PDM. He can enter his carbs and give himself a bolus, and it’s all so good for his confidence and self-esteem. He is managing all of his care at school – making a phone call to his stepmom at lunch time everyday.

Yesterday morning I was reading a book when he woke up and I said, “Let me finish this chapter, and then I’ll get your breakfast.”  He said, “No, you keep reading. I can do it by myself now.”  My sweet boy, you continue to amaze me.

This move from shots to a pump has not been the easiest transition.  I foolishly didn’t see this coming. It is just a new chapter, and I have to face it.

And even though sometimes the reality of forever blows my mind, I know we will be ok.

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.

Happy Dia-versary! It’s Been One Year!

It’s been 365 days since Day 1.

No less than 2, 555 blood sugar tests.

At least 1, 460 shots.

1 trip to the ER for dehydration and ketones.

3 A1C’s that only dropped by a measly tenth of a percent each time.

It’s been a crazy hard and wonderfully bittersweet year. A year of firsts and milestones.

But he did it! We did it!

A year ago, this never seemed possible…that we’d deal with this and be ok.

We’re better than ok.

Being a mom is hard enough. Being a mom to a T1D…unimaginable.

But I’m ok.

And why wouldn’t I be?

I have a daughter who has learned to roll with the punches – both the highs and the lows – to accept the mood swings, to be flexible, to keep me on my toes, to bring laughter when we need it. She is my comic relief, my easy-going girl who truly makes my life easier.

I have parents who are willing to work around our eating schedule, make multiple rest-stops on long car trips, choose the right places to eat, make life feel normal, count the carbs, distract the kids, be quietly concerned, ask questions, make suggestions, but never push.

I have friends who give me their time and lend an ear, from miles and miles away. Friends who’ve come back to me and helped me deal with this latest season of my life. Friends who text at just the right time to bring a smile to my face.

I have a sister who provides the medical advice, the side-splitting laughter, the room to complain, the reminders to breathe.

I have a little boy who is amazingly strong in every way. His puppy dog eyes and his uncle’s charm, his sense of humor, his need to compete, his drive to win, his mad math skills.

I am a lucky mom to be given this strange gift wrapped in a beautiful package.

And someday, probably years from now, the best gift will be a cure. Until then, we will celebrate every year!

Happy 1st Dia-versary, Ian!! I love you!

Thought #37: When You’re Up, You’re Up

There is a cheer I remember from my cousin’s pee-wee football games over 30 years ago.

When you’re up, you’re up.

When you’re down, you’re down.

When you’re up against DIABETES

You’re upside down! 

I am realizing each day this could not be more true.

After a few weeks of more and more frequent lows, we are now experiencing a high trend.

I don’t understand and I don’t like it.

I don’t like feeling out of control, or as the cheer says, upside down!

I asked a new friend recently when I would learn to accept the fact that just when it feels like things are stable, they quickly change. I would think after 6 weeks, I’d be used to that fact.

Her words were , “You won’t accept it….just hang in there….you don’t have a choice.”

As a fairly emotional person, the constant ups and downs really do a number on me.

Somehow, on some level, I need to be ok with the ups and downs, the highs and lows. I need to be able to look at number, see it as a number, treat it, and move on.

High numbers do not mean I am failing at managing his diabetes.

Low numbers do not mean I am not doing my best at controlling his diabetes.

A perfect number (whatever that is) does not mean I’ve mastered diabetes.

Blood sugar numbers are not scores or ratings. And this is not a game or competition.

This is life…and the most important number is ONE.

One day, one hour, and one blood sugar at a time.

They are just numbers.