On the 729th Day…

On the 729th day that Ian has Type 1 Diabetes, I have a lot of mixed feelings.
Tomorrow it will be 730 days….

That’s two years.
Only two years?
Two years already?

As January 4th – his “2 Year Dia-versary” – approached, I kept having this strange feeling….almost like a sense of relief or something. I almost felt “excited” for the day, like you’d feel for Christmas.   I don’t know why. It’s not like on the 2 year anniversary, we’d be “halfway done” or “almost there” or “cured.”  It’s not like we beat some milestone, or even met a goal. His A1C sucks.

Still, I felt relief.

But I also felt some sadness and some anger and some fear and some pain….

It all just came rushing back to me. The day, the day that followed, and the days after that….

And I realized that every year, every January 3rd, I will mourn the loss of that particular life we had. I think I’m entitled to that; I think it’s to be expected.

But every January 4th, I will let out a sigh of relief.  I will celebrate the life we are living now, another year of accomplishments and dreams, of growing up and finding our way.

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Writing 101: Day 4 It’s Not Whether You Win or Lose

Ian has always been on the losing team. I am not kidding. Every team he’s ever been on has been the worst. In both baseball and basketball, his team always has the worst record in the league.

This year is different. His team is 4-6, still not a winning record, but not the worst team either.  And they have lost some very close games.  It’s been an exciting season.

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Batter up!! I’ve been horrible at taking pictures this season. This is, in part, because I take the dog with me to most games, and it’s hard to manage a camera and a ferocious 10 pound Yorkie.

Since this is the first season with the OmniPod, it was like a whole new ball game. (Sorry, I couldn’t resist.)  The first few practices and games he was dropping like crazy…The second practice he plummeted to 44. Our previous plan of giving him an extra 15g before activity didn’t work anymore.

Talk about frustrating and defeating.  It was just part of the learning curve.

After a little trial and error, we figured out that a temp basal set at 70% is enough to keep him from going low. We have to test him every few innings. It’s annoying to him but he knows that going low is going to take him out of the game for a while, and he sure doesn’t want that!

When Ian was diagnosed, we sat in the ER and the doctor asked him if he had any questions. Do you know what his very first question was?

“Can I still play sports?”

This boy lives for his sports. And honestly, he doesn’t care if he wins or loses. He just loves the game. With his track record, that’s a very good thing.

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I love watching him pitch. Look how serious. He tries to plan out his pod placement so it doesn’t interfere with his nights to pitch.

The tournament starts on Tuesday. Is it too much to ask for just one more win?

 

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.

New Pump Slump

I’ve been struggling to write a post about the new life we are living with the pump.  Ian got his OmniPod on March 10th, and the last two weeks have been….

Exhausting. Frustrating. Liberating. Challenging. Scary. Exciting. Annoying.  Freeing. Confusing.

Put all those emotions together…and I find myself in a New Pump Slump.

I find I don’t really want to talk about his pump with people, because it’s isn’t a magic cure.

People seem dumbfounded that he isn’t “regulated.”

People seem to think that he’s fixed now with this pump.

He’s not.

And while it is a handy-dandy, pretty amazing little piece of technology, and will eventually be so much better….I feel like we are starting over in many ways.

It’s not as scary as it was a year ago when we had so much to learn….

But it’s a change that requires  you to let go of the “control” you thought you had – giving up control and trusting this little plastic pod on his body to do the right things. Yes, we still have the power to adjust the bolus, set the basal…(don’t even get me started on the new vocabulary I’ve picked up in 13 days).

It’s hard.

What we knew worked for baseball and gym days and snacks and meals and bedtime….doesn’t work anymore.

When he goes from 170 to 44 during baseball…

When he doesn’t even feel his low of 38…

It feels like we are failing him….like we’ve forgotten everything we’ve learned.

I know that none of this is true. I know we are doing the best we can and this is just another huge lifestyle change that will get better with time.

But when you are sleeping no more than 3 hours at a time each night….it’s hard to see things that way.