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.


Thought #46: I’m only human.

The other night I messed up.

Big time.

I gave Ian 4.5 units of Humalog before bed instead of 4.5 units of Lantus.

I gave him 4.5 units of a fast-acting insulin meant to be given with carbs.  With his current ratio, he would have needed to eaten 180g of carbohydrates before bed.

He only had a 15g snack

How did I know I made this mistake?

At 11:30 he came downstairs and woke me and said, “We need to test NOW.”

He was 50.

Thank God he woke up and realized it.

A juice box and 15 minutes later…he’s 90 and I’m thinking, “What did I do wrong??? Why in the world did he drop from a high 253 to 90 in less than three hours??”

And then I had a sinking feeling. A moment of panic.

I gave him the wrong meds. 

I remembered standing at the dining room table talking to the kids and drawing up his meds, like always. I thought I gave him Lantus out of the slightly taller vial of clear medicine.

And I just had this horrible feeling that I did this to him.

He ate some peanut butter crackers and tucked him into my bed.

And I called the nurse. And she said that this happens. It happens a lot. It was an honest mistake and it was very likely that this is what happened. No other explanation made sense.

We would not know until morning. If his blood sugar started to rise over the course of the night, we would know there was no long-lasting insulin in his system.

By 5:30 am he was 250+.

As his mother it is my responsibility to keep him alive by giving him medicine that his body cannot produce.

Talk about guilt.

The nurse developed a plan to deal with this mistake for the next 24 hours. It involved extra correction and hourly blood sugar and ketone tests. It made for one of the longest nights of my life. I mean, really, how could I sleep at this point?

Talk about exhausted.

We both went to school the next day but we were back home in comfy clothes by 10:00.  As expected, his blood sugar continued to climb and when he hit 350 at 9:30, I knew it was just easier on everyone to be at home.

We spent the day playing Sorry Sliders and Wii, doing puzzles, and watching multiple episodes of Full House.

By afternoon snack, he was doing better and in the 100s.  We went to the orthodontist as scheduled and to a meeting I had at work.

And then, out of guilt and pure exhaustion, when he asked to go to Applebee’s for dinner, I said “Yes.”

Thought #39: This is an unfamiliar road.

One of the hardest things for us is each new experience.

Ian and I are both worriers by nature and we both like to feel in control.

So when a new situation pops up, be it a field trip, a musical rehearsal, a trip to the water park, a sporting event, a new restaurant…we have a lot of questions and a lot of concerns.

I’ve always had to reassure Ian and give him as much detail and explanation as possible to make him feel comfortable with things.

So imagine trying to guess/estimate/predict what each new experience will be like and give your child the reassurance and details he so desperately needs.

A few days ago, in the driveway, before school, he was pressuring me for specifics to some new situation (which I cannot remember right now) and I stopped dead in my tracks, pulled him over to me, put my hands on his shoulders and looked him straight in his big brown eyes.

And I said, “Buddy, I so wish I had all the answers and I could tell you what you need to know. I wish that I knew what to expect and what would or could happen. I can’t and I don’t. This is all new and I know it’s scary. I just need you to trust me that I will be there for you. I will work it out and do my best whatever happens.”

And later that day, I heard a popular song and it just clicked…it was what I was trying to get through to him. I can hardly listen to it anymore without tears welling up in my eyes.

Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
Cause I’m going to make this place your home

Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found

Just know you’re not alone
Cause I’m going to make this place your home

Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found

Just know you’re not alone
Cause I’m going to make this place your home

Leaving the lyrics open for interpretation, what better way to express the love and shelter that a mother provides for her children.

Thought #33: Be brave and face your fears.

We have had a lot of snow this winter and 3 weeks after Jan. 4th I took the kids and two of their friends sled riding at the church across the street. It’s only about a block away but I knew I needed to take snacks, juice, and have the car if something happened.

Well, sledding didn’t go well. There wasn’t enough snow nor did we have the proper equipment. We didn’t have any sleds so we tried using the lids to Rubbermaid totes.

Epic fail.

So the kids played a bit and all of a sudden Ian starts whining that “there isn’t enough room for him to play” and “it’s not fair that the girls get to have the whole park.”

He was talking nonsense and I knew something wasn’t right.

We hurried to the picnic shelter and I bust open our supplies.  Ian is shaking at this point, paler than I’ve ever seen him, and totally panicking.

I tried to stay calm and test his blood.  His hands were ice cold and wet from snow. The blood was not beading up, just running down his hands in a watery mess.

Finally, after 4 pricks we get a reading….46.

The lowest I’ve ever seen.

I felt like I could pass out.

I stayed calm on the outside.  I gave him a juice box  and spotted him so he wouldn’t tumble backwards off the picnic bench.

Marisa went to the car to get peanut butter crackers.  He ate them quickly.

He still looked bad.

What was I thinking? Why did I bring him sled riding? He can’t handle the cold. He has diabetes.

A half hour later we were at home, in warm dry clothes. Ian was back up to 99 and he was dancing around the living room batting a balloon around.   You’d never even know he was 46 just a bit ago.

:::::sigh of relief::::::

But in my mind I was thinking, I’m never taking him sledding again. He’ll never play outside in the snow again.  This sucks for him. He’s only 9-years-old.

Fast-forward through a week of more ice and snow, and eight days after the 46 in the snow….we have another Snow Day!

Hooray for no school!

Boo hiss for sled riding, which they desperately wanted to do.

My dad had called just a few days before and said he found some sleds in his workshop and we could come pick them up anytime we wanted to go sled riding.

If I had my way, we’d never ever do it again. We would not risk a low like that just to play in the snow.

But what did we do? What did I do?

I put on my brave face and we picked up the sleds and we bundled up and we drove the the church and I faced my fears.

I let him sled ride. I let him run in the snow. I let him throw snowballs at me when I pretended I wasn’t watching.

I went sledding. I took pictures. I laughed. I smiled.

It was a perfect snow day and an important moment for us. An important moment for me as a mom, and for the kids.

I learned from my mistakes…an extra 25 grams before venturing out in the cold for sled riding seemed to help keep him stable.

I learned that we cannot live in a bubble. We cannot let a bad experience ruin us. We cannot hide from things that scare us.

We have to get up, brush ourselves off, and face our fears.

When we fail, we have to be brave enough to try again.