I'm the Rainbow Baby!

I think anyone who knows our Rainbow would agree that the kid has personality. He lights up and fills up most any room he enters. He's always been that way, a charmer.

We really never dreamed that we were only seeing part of what he had to offer.

Rainbow had his first immunoglobulin infusion two weeks ago. I'm not even gonna try to explain how hard it was... it was hard. He was sick for four long days after, while his parents cried and fretted and wondered if we had done the right thing to put our two year old through this.

As he started to emerge from the headaches, fever, and nausea we were so happy to see our bright light return. Then something new happened. He started to run circles round and round the back yard, pretending to be an airplane, chasing his daddy, winning all of the races "I win!" His baby sitter started telling us that he was different... that he has more energy. Then, this week, he started to eat. As in first breakfast, second breakfast, elevensies, lunch... you get the picture.

Yesterday Hubby and I were talking and failing to notice Rainbow's adorable antics so he shouted "I'm the Rainbow Baby!" with a huge grin...

I think if his caretaker wasn't absolutely insistent that the kid is different we wouldn't believe it. We would tell ourselves that we were imagining it, that it was wishful thinking. After all, he has always been incredible... always.

Hubby and I have each sat on the floor of the bathroom while he bathes most every night marveling at the fact that the only medication he's taking is Zyrtec. Never, never in his life has he been on only an allergy medication!

We were so afraid, afraid of the side effects, the horror stories, the many many things that could go wrong. It was rough and in two weeks we do it all over again but for today I am basking in my Rainbow's light... and trying to keep up.

Until next time...

Come at me bro

I joined two facebook communities for people with Primary Immunedeficiencies (PI). Some days I think that was such a total and complete mistake. One of them is a community for "Zebra Moms." Of course this is where parents facing the fear and battle of raising an immune-deficient child go to tell their horror stories... no one else understands, but I'm starting to wonder if I can continue to read these stories and maintain my sanity.

I've been reading about how these kids have to stop their infusions because insurance wont pay or because a doctor just isn't convinced that there is "actually" anything wrong. It makes me crazy. I reply over and over and over "trust your instincts momma and keep fighting until the doctors do, too" It's everything I wish I had done and everything I'm doing now.

These posts have also made me realize something. Yes, we are battling the insurance company, yes, this treatment is going to be hella expensive, yes I'm terrfied, yes yes yes...

But we also have two doctor's offices going to bat for us, calling every available resource, faxing in paperwork, filling out claim forms, calling us to check in, emailing every other day. I have a "little" brother who organized a gofundme campaign that has raised more money than we could ever fathom and is threatening to kick someone's ass if more doesn't come in (ya gotta love that about brothers). And we are far from defeated. Unlike those who are unuse to having the crap kicked out of them daily we get up of the ground, wipe the blood from our wounds, and say "bring it on." We're fierce as all hell people and we are going to get our child what he needs, period.

I suppose there is some twisted sort of power that comes from knowing the worst. The worst is not a second mortgage. The worst is not weekly or even daily trips to a phlebotomist or IV tubes connected to my son. The worst is a casket.

I'll do whatever it takes. That, my friends, is power.

Until next time.

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...

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 ;)