A sick rainbow and kindness confetti

Come to find out I'm pretty superstitious. I knock on wood. I touch a screw (if I can find one) when I go over railroad tracks. I freak out a little when someone "jinxes" me. And I hold my breath and don't write about my rainbow baby's health. It's like I'm afraid that if I point him out to the universe the universe will take notice. I don't know, maybe I'm just too terrified to actually write the words, here, in this place where I come to think...

My rainbow is sick.

It's a long, complicated, confusing road to where we are. Essentially, there are multiple components of his immune system that are either deficient or missing.

Terror

Abject Terror

Every day, every breath, every minute

Terror

If he was perfectly healthy I would live in terror. He's not. I know he's not. I know his immune system isn't fully equipped to fight pathogens.

Terror

We've been running the gauntlet of test after test after retest. Our plan of action has been to watch him like a hawk and rush him to his pediatrician if he does anything weird, and rush like we're in NASCAR if he has a fever. We've had to do this twice, both times were during regular business hours. His pediatrician always sees him immediately. One time he had an ear infection. The other it was "just a virus."

Monday it happened in the evening. We had to go to the ER. He had to suffer through a battery of tests (for which I am so very grateful) and once again it's "just a virus."

Those words are like acid. Those words "just a virus" are the words that sent Damon home...

I was D-O-N-E waiting. I was done putting my child through test after test after test. I was done wondering if the next time he was sent home he would die.

I had his medical records sent to every hospital I could think to send them to. He has an appointment at The Mayo Clinic now. I'm not sure if the rapidity with which they got him in is terrifying or encouraging but we're in. Elation!

Annnndddd now we have to figure out how to get there, and where to stay, and and and...

Aint that just life?

Already friends have offered us their home for as long as we need. Someone just gave us a hunk of money to help with travel expenses. Like, here you go, my heart is bigger than Texas, you can have this.

What?? Who does that? Doesn't that only happen in movies?

There are no words for times like these. There are no words for people like these. Who does that?

That kindness I've been begging for is being poured out all over me at a time when I couldn't need it more.

I'm holding my breath, knocking on wood, crossing my fingers and toes and hoping against hope that soon we will have answers.

Your kindness. It isn't a small thing. It isn't unimportant or unnoticed. It is huge. It is everything.

Thank you...