Thought #47: It’s not fair.

Tomorrow Ian goes to the hospital to have an endoscopy to determine if he has celiac disease as well as Type 1 diabetes.

It’s not fair.

We have to be there at 6:30 a.m. and the hospital is almost an hour from here.

It’s not fair.

If he has celiac, he’ll be the one kid out of ten who has both Type 1 diabetes and celiac.

It’s not fair.

If he has celiac, he won’t be able to eat his favorite foods. He’s already limited on how much of those foods he can have and he’s a picky eater. And he loves his grains.

It’s not fair.

He will have to go back into a room with a nurse and doctor he just met and lay down and go to sleep with a “cool Star Wars mask.”  He’s a smart kid and he won’t buy it. He doesn’t even like Star Wars.

He’s scared and he’s angry. And I don’t blame him.

It’s not fair.

I’m preparing for the worse.

It sounds pessimistic but at this point, it’s my coping mechanism. I’m assuming he has celiac disease. In my mind, I am telling myself he does.  That way if he does, I won’t be crushed.

We won’t know until sometime next week. I pray it isn’t on his sister’s 13th birthday if it’s true. I can’t ruin her day. I can’t let it take away from her. She needs a special day all about her.

I hate the thought of telling him. It kills me to think of how we will break it to him. And how it will change things once again.

It’s. Not. Fair.

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Thought #40: The odds are against us.

1 in 100 people has celiac disease.

1 in 10 people with Type 1 diabetes has celiac.

Ian failed the blood test, as we already knew.

He will have a biopsy on March 14th.

That test will determine if he has “silent” (requiring a gluten-free diet for the rest of his life) or “latent” (meaning he has the potential to have it at some point in his life and will need to be tested every few years) celiac.

Obviously, latent is the better option.

And in the grand scheme of things, it’s not the end of the world. He will be healthier and apparently his diabetes will be easier to manage if we eliminate gluten from his diet.

But to a 9-year-old, who can only eat a set amount of food at designated times throughout the day and only with a shot of insulin…this is just completely unfair.

As the doctor explained the procedure to us, Ian broke down crying. Right there on the exam table, sobbing.

It. Broke. My. Heart.

Again.

Thought #34: I’m frustrated.

I’m frustrated with everything and everyone.

I’m annoyed.

I’m angry.

I’m ticked off.

At the world, at diabetes, at people who let me down, at people who ask too much and give too little.

Thought #27: I need to feel in control again.

I am learning all too quickly, that just when you think you’ve got just the right meds and right insulin to carb ratio….things change.

In a week’s time we’ve experienced Ian’s lowest low at 50 and the last few days we are battling highs of 250 and up.

I have always been on top of things, organized, structured, disciplined, and in control of my life the best I can be.

Diabetes has taken my control away. I feel out of control and it’s so so hard to admit.

I don’t like to ask for help. I have managed on my own for a long time and I do a really good job at it, if I do say so myself.

But right now, I have lost control of my emotions, my time, my house, and order in my life.

I finally reached a breaking point and asked for help yesterday.  It was incredibly hard but I posted on Facebook something like:

“There are some things I simply cannot get crossed off my To Do list: the Christmas trees are still up, there are gifts under the tree, there are boxes of holiday decorations, and boxes sitting in my dining room that need to go to Goodwill.  I seriously cannot find the motivation to do these things.  And now I am seriously kinda asking for some help. If anyone would want to help me tomorrow after 3:00 you have no idea how much I would appreciate it.”

Not my proudest moment.

I honestly felt I could not tackle these things alone. I truly needed someone’s help.

The 5 people who replied were relatives and a friend who all live out of state.  I got one “Like” and otherwise….nothing….

No one offered their help. No one reached out.

I was spinning out of control.

Posting that status/plea was a terrible mistake. It made me feel worse than ever.

I deleted it hours later because it hurt too much. I went to bed sad and alone.

And then it was a new day. I went to work and I knew I would face these same tasks.

So what did I do?

I freaking came home from work today and I tore through my house doing every thing on that stupid list. I did it with authority and power and honestly, a whole lot of anger.

Angry that no one was willing to help. Angry that no one understands what I am dealing with. Angry that I have to be in this position. Angry that my little boy has a stupid disease that now controls our lives.

But somehow it made me feel better.

Every box I lugged to the basement was my way of saying, “SCREW YOU DIABETES. I AM TAKING BACK CONTROL OF THIS HOUSE!”

Every corner that I straightened was my was of saying, “SCREW YOU DIABETES. I CAN TAKE ON WHATEVER YOU THROW AT ME.”

Every load I took to the car for Goodwill was my way of saying, “SCREW YOU DIABETES. I WILL SHOW EVERYONE THAT I CAN DO THIS.”

“SCREW YOU DIABETES. I AM BIGGER THAN THIS AND STRONGER THAN I KNOW.”

Thought #21: I want to get off this rollercoaster!

Not only does Ian’s blood sugar run high and low, but so do my emotions, my energy and my days, in general.

One night I will sleep great, the next….horribly.

My appetite is up and down as well.  I don’t eat much until we sit down to dinner and even then, I am really not that hungry.

My mood is all over the place.  Yesterday I felt relatively “high”…with less tears and less sad thoughts.

Last night (Day 10) was the best night we’ve had so far.  We were almost normal again. Laughing, dancing, and singing in the kitchen after dinner.  The kids played and made a video. It felt good to feel so good, but I knew it would probably be a fleeting moment.

Today I am just blah.  After going to the grocery store and aimlessly walking around for over an hour, I have been home and have accomplished nothing except watch t.v.

Now I look at the clock and panic because I have to pick up the kids in 40 minutes.  I have nothing to show for my day at home except more groceries in the pantry.

I used to love rollercoasters.  Oddly enough, the last time I rode one was when Ian was three months old and the first ride at Cedar Point made me completely sick. I didn’t ride another ride the rest of the day.

And now I am on a rollercoaster with a track that never ends. A rollercoaster with dips and hills, high speeds, jerks and turns.

Thought #3: Why him?

The connection between genetics, heredity, and diabetes is unclear. Ian has great-grandparents who had diabetes, but this seems unrelated. So why him? What caused this?

Obviously, that is not something the doctors know.

He has it because that was his destiny, I guess you could say. It was in his make-up. It was part of a bigger plan.