Three years ago we didn’t know.

Three years ago Denver had “asthma”. An occasional inhaler on the Cross Country field was needed.

A yearly, to bi-yearly round of antibiotics to treat pneumonia (which was my clue).

Then we got the diagnosis.

Last year was the first hospital stay.

1 full week.

The life-changing event still didn’t change much at home.

An occasional inhaler. A prescription for vitamin K. A small device for his percussion that he could carry with him it was so compact.

Fast forward another year.

Another hospital stay.

And Denver gets his first new car.

No, wait. It just costs as much.

The dreaded “vest”.

Or as Kennedy always calls it “The shakey-shake”.

We expected him to progress.

But not so fast.

Half the time I feel so blindsided.

I hate that he is so painfully aware of every change in his body.

I hate knowing that is sister will also progress one day, definitely before I’m ready, hopefully not before she’s ready.

Denver is smart, very intelligent, he researches and reads and wants to be a doctor after all of this.  He gets it, and he lives it, and he tries to move beyond, although I think he had some trouble this year. His hospital stay came right at the start of Cross Country season and threw him off for the rest of the year.

Kennedy is showing signs of  great intelligence.

Who knows, maybe one day one of them will be the doctor that finally cures this disease.

But for now they’re still my babies.

And they are tied to machines for at least thirty minutes out of every day.

And it hurts.

I don’t like that this is their ‘normal’.

I don’t like that Denver now has to add the “shakey-shake” into his schedule.

I never will.