Thank You

I hear a lot about gratitude.

"Just be grateful that..."

"Gratitude is the key to happiness."

I went through a long dark season where I was not about to be grateful for anything, period. My entire life gratitude had been so tightly tied to religion. I should be grateful for my existence. I should be grateful for grace. I should be grateful I wasn't incinerated on the spot for the horrible horribleness that was me.

After Damon's death I was NOT grateful for my existence, much less anything else. Every breath was razor blades.

It feels like every step since has been taken in quickly drying cement. I don't know what cosmic force I royally pissed off but this is just ridiculous. If there is a god I am definitely not grateful to him/her/it whatever.

But...

I have learned that gratitude is a beautiful, healing thing. A few months ago I started concentrating on true gratitude. What was I really deeply so very very glad for? It started on a drive home from school. I pulled into my driveway, looked at my burnt flesh colored fixer upper and was so so glad that this was my little corner of happy. Hubby and I worked hard to buy this little house. It is my favorite place in all of the world. Here is my sanctuary. Here reside all I hold dear. I sat in the driveway and dwelt on that feeling and some of the ever-present black lifted from my soul.

Gratitude, the real thing, the simple look-around-bask-in-what-I-love thing, is beautiful.

So, that crazy long introduction was to say this I am unbelievably, inexpressibly grateful for you.

Most of the time we feel very very alone. There are so many things that keep us apart. We are bereaved parents. We see the world in an entirely different way. We feel everything so intimately. Our values have shifted. What we will tolerate has changed. Our ability to be part of a social fabric is seriously frayed. My entire belief system has turned on its head. We are changed people. Our eldest child suffers with us and needs so much protection and now we know our rainbow is a zebra. We become further isolated from the world. Even if we were emotionally capable we couldn't socialize.

We. Are. Exhausted.

And then, there is you.

There is you who sends packages of hand sanitizer, and Mickey Mouse masks, and Amazon gift cards, and checks for money you could have used on christmas presents or home improvements or a million other things but you gave it to us.

For a wordsmith I fail so intensely at expressing what your gifts of love do to me.

It is like each one is a brilliant firework in the darkness of our lives. Just like the spirits of the crowds are lifted with each beautiful display of blues and reds and whites your kindness shreds the darkness with ravishing fireworks that spell "care" and "love" and "not alone."

Not alone...

I feel like our culture tells us that it isn't ok to need... anything. We despise the weak, the needy. I'm long long since past pretending like I wont accept help, like I don't desperately need support in any way you are willing to give it. And something really amazing has come from that. There are people... there is you... who really, genuinely want to help. Not because of some moral obligation or religious requirement but just because of who you are. That discovery, that network of beautiful souls, is precious to me.

And I am indescribably grateful for your love.

Until next time...

Zebras

Damon had a large zebra wall sticker in his room next to his crib. He would wake from a nap and say "Zeea!!" I would walk in and he would be standing there at the very end of his crib excitedly pointing at the Zeea.

We kept that zebra. It hangs in our hall just outside of Rainbow's room. Every single time I look at it the image of Damon standing on his little tip toes, alight with excitement floats to the forefront of my mind. It hurts like hell... every time. But I wont take it down for anything.

Rainbow baby took a shine to that zebra too. As we exit his room he usually insists on touching it. It's a little post-nap ritual. He can say zebra perfectly now. Sometimes he wants
to just stay there in my arms for a few breaths and stare at it. It's like he knows that there is something there, some connection. It hurts like hell... every time. But I wont take it down for anything.

Today I found out that individuals with Rainbow's condition are called "Zebras" because medical students are taught "if it walks like a horse and talks like a horse think horse... not zebra." Well, in the case of immune deficiencies what you are actually looking at is a (expletive) zebra. Treating a zebra like a horse is (expletive) deadly... but I digress.

So, what we in-fact have is the very rare rainbow zebra. I feel a new tattoo coming on ;)

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.