F.O.U.R letters

I've been sitting here staring at this screen hoping something with bubble out of me. That's how it works... but there's only one word coming to mind and it has four letters.

Maybe I'm not ready to write about this yet. Maybe writing isn't my release anymore.

Maybe the layers and layers of fear and pain are crushing the words.

Or... I just don't want it to be real.



Our rainbow baby is sicker than we knew... or he's gotten worse....

Since he was about ten months old every three months we've checked his immune function. We use to monitor a whole host of things but over time it has come down to three measures. IgG, IgM, and IgA. These are the immunoglobulins, what most people think of as antibodies. These are your primary adaptive immune protection. They are what "learn" from infections and vaccines and build a pathogen specific response so they can kill pathogens before pathogens can kill you.

Since that first measure his numbers have been low, but not red alert low. So, he's been on antibiotics (yes all of the time) and has been rushed to the hospital with nearly every fever. He can't be in childcare. He can't go play with other kids. He washes his hands ten times a day and gets every surface he touches wiped down with antibiotic wipes that are stuffed into every cranny of our lives.

I have a memory box full of dated cards where I record all sorts of things my boys do, funny things they say, first tooth, first basketball goal, etc. I have recorded the day he had his first normal childhood illness and didn't have to go to the hospital.

I had just started to loosen my grip a bit and took him to our local children's museum... he loved it. He loves kids. He loves to go.

Thursday we found out that his immunoglobulin levels, all three of them, are red alert low.

People say that hope is a beautiful, life-giving thing. I realized in that moment on Thursday that I had been hoping that we were just being overly cautious. That his immune system would "catch up," that maybe this is just because he was premature, maybe, maybe... maybe.

In my world, hope is just painful.

Now we know. He is truly immune deficient. His immune system cannot protect him. It can't protect him from everyday life.

For the forseeable future he will have to endure monthly infusions of purified gamma globulins. We will be giving him "troops", taken from thousands of blood donors, equipped from exposures to millions of pathogens. He will have to sit for 5-6 hours with a needle in his arm. My incredible, funny, kind, silly two year old...

I know that we will all adjust. We will all learn this new "normal." Though I don't think normal is a word that can be appropriately used in reference to our battle-worn family.

This weekend I am grieving the hope that I held for some semblance of normal, for some break from the onslaught. My fear and pain for my rainbow draw me deep under the waves of the grief that forever lap at my ankles.

 I know enough about genetics and immunity to know it is no coincidence that I have an immune deficient child and a child that died of an infection against which he was vaccinated.

So. Much. Guilt.

So. Much. Fear.

So. Much. Pain.

I am so tired.