the helpers...

I've heard it said in times of distress "look for the helpers."

I would really like to be a helper but for nearly five years now that position has been far out of my reach. When you're held together by saran wrap you really cant effect much good in the world.

I had a particularly bad episode these last few days, worse than I've been, I think, since the year after Damon's death. All I wanted to do was lay down and die. I couldn't think. I couldn't function. I can only write about it now, as the cloying black fog has started to recede from my vision, the weight lift from my chest... a few days ago I couldn't have put these sentences together.

I'm not afraid to tell you that part of the relief is chemical.

I am depressed. I have PTSD. I have anxiety.

All but the PTSD were present before Damon died. It's chemical, biological. I could go on a long rant about my complete impatience with the perception that "mental" illness is not actually a physiological illness but I leave it at this: Its body chemistry, no more under a person's control than asthma.

I live my life on an antidepressant. I keep anxiety meds near by. Sometimes, though, I have to come at the thing with a double barrel shot gun rather than the more subtle knife's edge approach I prefer. It was a double barrel shot gun kind of black.

Its weird how the depth of pain, anger, depression, guilt, fear, you name it, can take me from behind with a knife at my throat. You would think I would know its scent too well, feel the prickling on the back of my neck, heed the signs. Sometimes I just don't know its coming.

In the middle of Walmart, totally unprepared, it took me. It's been a while since I had a full-on, vision-blackening, heart-racing panic attack.

They give you tools. You're supposed to anchor, find 5 things you can see, 4 things you can touch... so on. The thing about panic is, your brain sort-of (completely) stops working. Those tools go out the window and you start to panic about panicking.

I managed to make it home, chalk that one up to experience. My helper, my husband, my rock was stationed on the bathroom floor reading a book while lending moral support to our potty-training rainbow. I crawled into his lap and just went sill. He didn't ask any questions. I don't think he said anything at all. He just gently started running his fingers through my hair. He stayed there with me, on the floor, between his naturally-needy 2 year-old and his emotionally straight-jacketed wife until I started to come out of it.

He gently eased into the parenting lead that day, like he did for nearly a year after Damon's death. He was patent for the days after while I slowly regained my strength. He let me cry in his arms and never questioned me.

He never does.

In all the tumult that is me, the wild flying emotions, the highs and lows... He never questions me. He never criticizes my "crazy." He just quietly waits.

He is my greatest helper.

I often wonder what it must be like for him, to be the backbone of such a devastated family. To hold the highground in a constant onslaught. I don't know but to say I'm glad he does would be a grievous understatement.

It is my tendency, perhaps my nature, to never shut up... to question, and blab, and even to criticize things I don't remotely understand. I don't know where I would be if he were like that but it wouldn't be anywhere good.

Here's to all of you helpers, thank you.


Until next time...

We're in

Since finding out that Rainbow is terrifyingly underdefended by his own immune system we've been battling to find a way to pay for his treatment (insurance is not interested, awesome). I don't know how many hours I've spend on the phone, filling out paper work, back on the phone, researching Primary Immune Deficiency websites... you name it, I've done it. I've been a woman possessed.

Yesterday I got an email from the infusion nurse at Rainbow's Immunologist's office

I think we've come up with a solution
Call our research director at ###-####

I called
Voicemail

I thought my head was going to explode. I cranked my ringer as high as it would go, shoved my phone in my pocket, then proceeded to take it out and look at it every 30 seconds... because, you know, maybe I missed the call.

5pm came and went, no call

That's ok, they call me after 5 fairly frequently...

5:30, holy crap I'm going to have to wait until tomorrow?!

6:00, resignation...

6:30, my phone rings

It was her. It was her giving me hope. It was her telling me that if we can get Raz stabilized for three months on IV infusions she can enroll him in a clinical trial that would give him free meds for 6 months. Six months is a long time. Six months is a lot of money and this means he could start getting protection soon, really soon.

"You don't have to make a decision now," She said, "I'm going to email you the Informed Consent. Take your time and read it and I will answer any questions you have."

In case you're wondering "Informed Consent" is a pseudonym for "Terrifying document outlining every possible thing that could go wrong, no matter how remote, and detailing every agonizing time your child will have to be stuck with a needle to put stuff in or pull stuff out."

I rode a high of relief through dinner and started reading the document of terror while Rainbow played in his bubble bath.

I had to remind myself roughly three-thousand times that this is something he must have. This isn't a medication he needs to improve his quality of life or diminish pain this is a medication he needs to stay alive.

I've read A LOT about gammaglobulin replacement in the past few weeks. Every medication comes with the same risks, the same list of possibilities. This list was no different but the beast I had been fighting, my primary worry "how are we going to get him what he needs?" had sustained a wollop that would take it down for a good 6 months.

Without a monster to conquer I had to face the reality that, likely for the rest of his life, my son will need a blood product to survive. A blood product that has to be introduced to his little body through needles. A blood product that must be constantly monitored through blood draws, at some points on back to back to back days.

Hubby is glad for the caution. He's glad they will be obsessively checking his blood over and over and over and over, making sure he is ok, making sure his body is tolerating the foreign presence, making sure he doesn't have an infection.

I'm just afraid for my child.

Repeat the mantra "he needs this to survive"

"he needs this to survive"

"he needs this to survive"

I emailed the director this morning

We're in, we're terrified and worried but we're in.



Until next time...

That moment when...

Nine, very close to ten... the number of years since my eldest made me a mommy.

Sometimes, I think he feels lost in the shuffle. He lives between one dead brother and one brother who is constantly the center of tests, and fear, and caution.

"You made me a mother" I told him a few months back. "Before you I had no idea what love was. You showed me love."

It's true. My eldest taught me love.

Tonight, after bed-time snacks, and baths, and tucking into bed he called me into his room. Another thing this sensitive child has taught me is to read between the lines. Expressing the fear and pain that lives inside him is difficult. This kind of thing is difficult for adults. Tonight, he was worried about his little brother. He was worried he would die. He was worried he would be the one to get him sick...

We all are.

It may be a mistake. I know we all need security. We need our false sense of safety and control just to function. My tattoos make me feel like I have a choice in something. Organizing my house makes me feel like I have some semblance of control over something. I don't but I need those moments. Still, I refuse to tell my eldest that everything will be ok. I refuse to tell him that Rainbow will stay healthy, that he will live because I don't know that.

I feel like I was lied to my whole life. I was coddled with the false security of a protective deity. The failure of the illusion, second only to the actual death of my child, has ripped my world apart.

I wont do it to my son.

The best I could give him was "me too" and "I love you so much" and "We will all be so careful."

That moment when your nine year old is afraid he will accidentally kill his little brother... just another day in my life.

Until next time...