My eight-year old son shattered my heart into a million pieces tonight as I realized Lupus was stealing his innocence.

Stealing is the only word I could come up with-because it’s just like a thief. Taking my organs and my health and my figure and my mind. And now it’s moving on to the people I love most…the ones I fight so hard to protect from this burglar.

I was laying in bed next to him, giving him comfort in order to get him to sleep and getting him ready for the next few days ahead. It’s treatment week at our house, which means Mom is hooked up to an IV for 5-7 hours a day, and very tired and worn when she returns. It means their normal routine gets bounced around, with uncertainty over just who might show up to pick them up and just what might be in store when they finally get home.

I had planned their days carefully, from their lunches to their playdates after, to all the things I could control in order to ease the chaos and worry that comes with treatment week. I try hard to eliminate as much of that uncertainly as I can, knowing they thrive on normalcy and knowing what is next. But in doing this, it seems I failed at giving them the bigger picture.

He was nearly asleep, and I lay there stroking his hair as I tend to do, and rubbing his back, as I tend to do, and whispering the many things I say to try and fortify him and surround him with reassurance and love…

…honey I wish I could take away all your worry.

Mom, I wish I could take away your Lupus.

And I started to choke up, but forced my hand to not miss a beat rubbing his back.

I’m getting so much better though sweetie. My treatments are working.

But all you do is go to treatment. All you do is go to the doctor. Every day you go to the doctors. Only people who are dying go to the doctor every day.

And with the weight of a million tears I felt crushed and paralyzed. Flattened and pinned deep into the bed.

He is so very smart, my son. He is right. I am at the doctor very nearly every day. And we are there to make sure I do not die. But he is wrong to be so afraid right now. I AM getting better, it’s just very hard for an eight-year old to see or understand, when all he sees is Mom headed, yet again, to the hospital or medical center.

I have never worked so hard to keep the tears inside. They were flowing down the sides of my cheeks but without my body daring to flinch. He could not, he would not see me cry. This would only scare him more.

I did what mothers and fathers around the world do and I gave him every reason on earth to believe all was well. I did everything I could to make him understand he was safe, I was safe, our family was safe and together.

And then I walked down the stairs. I walked into the living room. I sat between my husband’s legs as he sat on the recliner playing a game. And I wept as hard and as violently as I could muster as he held me.

I had failed him tremendously. I had failed this sensitve, filled with dread, filled with worry child that saw me taking him to school and saying things like ‘Ok honey, you have your wand for Harry Potter class after school? Good because I have the doctor and I will be there right after to pick you up.’ And…’Ok guys today I just have some tests at the doctor and then after I pick you up it’s Slurpee Day!’ And then ‘No, no both you…we can’t have lemon chicken tonight because I’m just too tired to cook, I had treatment all day so we’ll just order a pizza, ok?’

And while my husband and I would throw in things like ‘Mom is doing good she just needs to keep doing good, so she sees the doctor today and tomorrow and the next day.’ Almost an after thought.

All the planning in the world…all the work to protect the kids as much as possible…and this whole time my son thinks his mother, with every doctor’s visit, is closer to death.

I expect this or a similar scenario will play out many times in our home. This battle wears on and on and on, with more victories lately, but it’s length is taking it’s toll. And because as my six-year old daughter will tell you…Mommy has Lupus, and it will never go away.

I own a wheelchair.

I’m not sure how it happened. One minute my husband and I were discussing renting a wheelchair for an upcoming day at Disneyland, and the next thing I know I was checking with my insurance company on coverage and debating between wheelsize and how easily a particular chair folded and its exact weight so I can lift it into a trunk.

We have found ourselves renting wheelchairs a lot lately. If there are any events where I need to walk more than say, a block or so, I really need one. It’s not that I can’t walk, it’s just that I get tired very quickly and a long walk can potentially ruin the rest of my day.

Just to give you an example, while in San Diego for the annual BlogHer conference we took  a cab to the ballpark to catch a Padres game. I figured I could walk from the cab to our seats and then sit and be fine.

Wrong.

The walk from the cab to our seats was further than expected, and while not too far, it certainly wiped me out. And because I was so exhausted I asked to leave a few innings earlier than I would have liked. No fun.

So it seemed to make sense to rent a wheelchair for the rest of the conference. Walking around a large conference hall just wasn’t going to happen. Not even with my new, awesome cane.

We’ve also rented a wheelchair at Universal Studios, Walt Disney World, and Six Flags Magic Mountain. That’s hundreds of dollars in rentals. So it makes perfect economic sense to buy one, with help from our health insurance.

It just doesn’t make sense to my heart.

I don’t want to be sick enough to own a wheelchair. I don’t want to need one for nearly every ‘event’ that comes up in my life. I don’t want to fold it up and put it in our trunk and have my husband push me around forever. So sure, while it makes all the economic sense in the world, it just plain hurts.

My daughter is now talking about getting her American Girl doll a wheelchair. My son wants to put flames on the side of my new chair when it arrives. My husband is excited to ‘trick it out’ with who knows what, all while I’m just trying to wrap my head around the purchase.

I’m still working very hard to get better. I have another round of treatment next week, and my many medications appear to be helping. So I’m excited that I am making progress, however it doesn’t feel like ‘progress’ when I am buying yet another accessory of the disabled.

It is giving me an idea for a goal though…to makes sure, sometime soon, that our new investment becomes something of a bust. That it ends up collecting dust, or holding my clothes in a corner of a room, because I’m out running circles around everyone using my able, strong, healthy body.

A girl can dream, right?

I haven’t been writing  because I don’t have words.

It has officially been a year since they took my gall bladder, my colon. My uterus. And my ovaries. And my cervix.

It has officially been a year since I walked into a specialist, and walked out having to tell everyone I love that I have Lupus.

It has been a year of gaining pound after pound after pound as steroids saved my organs and robbed me of my confidence.

It has been the worst year of my life, as I continue to make life harder for everyone. The never ending roller coaster that throws us high in celebration and then tosses us down with news of a stroke, then ANOTHER mini stroke and then up again with treatment and down again with pain.

God…the pain. The never ending, non stop pain that can’t even let me catch my breath because it’s too cruel.

I’m not going to pretend as if I had forgotten this anniversary. The one just after the other anniversary that should always be happy, not just an exercise in straining our ears to see if we can hear the clock tick down my life.

This year has taught me many lessons about the people I love. From the way my Father’s face fell as we left the specialist and I said the word, to the strain I see as my son rubs his forehead when he watches me take my medication, to the determination of my daughter as she plays doctor and saves every stuffed animal in the playroom, to the unannounced visits by my brother carrying food, hoping to get me to eat a bite,  to my husband…my constantly worrying husband…who cleans and cooks and shops and moves and moves for fear if he stops moving, so will I, to my Mother whose voice is always near a panic as I try to explain how yet another treatment has not worked. They have endured so much with such strength.

I write this in the hope that next year this anniversary won’t sound so grim. That every year when I write about this date it isn’t as dire, or depressing.

I am putting this first year after having been diagnosed with Lupus in the books, hoping we never endure something like this again, and trying to find the strength to push forward with my body and my words.

I’ve always talked about how politics are personal. Always.

The passion. The fervor. It comes from deep within. Decisions there affect my daily life. Policy, legislation, Acts, Bills…they roll directly to my front door. To me. To my children, my family, our lives.

I have always taken issue with many conservative ideals. When I was younger it was strictly social issues. As I matured I found myself having trouble with conservative economic policy as well. I always found it to be the economics of the wealthy, or those who wish to be wealthy. How does the joke go? Something about being young and a Democrat and when you become older, and richer, a Republican.

However lately I find myself angry when a seemingly new line of rhetoric, spurred by Tea Party types, hits the airwaves, and print, and finds its way to the lips of friends and family members. It goes something like…

I work hard for my money, and I’m not giving any of it to those just living off the system. I’m not giving anything to those lazy bums. They didn’t plan. They don’t want to work. They just take their government checks and get fat or get high or get drunk.

It’s then summed up with some Ayn Rand type quote about the survival of the fittest and how those who work the hardest deserve the riches.

Yeah, now it’s even more personal.

For those who are unaware, I’m on disability. A system I paid into when I was able and working. This means that every two weeks the state of California sends me  check and this check pays some of our bills. My husband continues to work, and the rest of the bills are eaten by his check.

Without my disability check we would not be able to pay all of our bills. This includes medical bills that have eaten up almost everything we have.

I just realized I’m one of ‘those‘ people these conservatives are talking about. I’m the lazy. I’m the unable. I’m the one who is living off of the government.

We planned as best we could for something like this. We had savings. We alway tried to live within our means. And then, as so many others, what couldn’t possibly happen to us, did.

Thousands upon thousand of dollars in tests and treatments will do that. No matter how much you try to plan. Leaving us thankful the government program was there to help in our time of need.

Let there be no misunderstanding. I WANT to work. I am anything but lazy (unless we’re talking about putting away laundry) and the last I checked my government checks weren’t being spent on booze or illegal drugs. It sure as hell pays for a lot of meds I have to take, though. The chemo shots, the iv infusions, the daily pills that are so numerous sometimes I forget if I’ve taken them.

I’m the ‘those people’ collecting that ‘hard earned money’ these conservatives were forced to turn over. They think I’m lazy. They think I don’t deserve that check, and they sure as hell think I should have been better prepared and should get my money elsewhere.

When it comes to ‘survival of the fittest’ they are fine keeping their cash and letting me die. I should be getting what I need at a church, or some private entity. Why should they have to pay for me? Why should they be forced to turn over their pennies because I got sick?

Yes. Today’s very real political debate has come knocking on my front door. I’m the ‘those people’ you keep hearing about at rallies with signs showing a lot of bald eagles and little old ladies in Old Glory sweaters. I’m the reason they seem so angry. Well, me and millions of others down on our luck.

You see…nothing bad happens to the folks at these rallies. They have, presumably, thousands of gold bars stashed away for their rainy day. They, obviously given their stance, don’t accept Social Security or Medicare/Medicaid. Their savings and self-bought health insurance will handle all their needs, even in the event of a medical emergency. Right? And of course if I ask them they ‘aren’t talking about me’ but about those ‘other people.’ ‘You know, the ones not like you.’

Yet they are like me. Just like me.

Yes, my disabled ass is clearly unconstitutional, or so I am told. Because no where, does it say, do they have to pay for us lazy sloths who are ‘abusing’ the system.

Nevermind it being a system we paid into. Facts don’t seem to matter.

Try as I may I’m having a hard time with this one. As anyone who’s been in a tough spot knows, it’s not where you want to be. And you are more than thankful for the government program there to aid you when needed.

I’m not ashamed to be collecting my check. This is exactly what a civilized society does. It provides when times are tough. It gave me a safeguard so my family wouldn’t lose everything because I got sick.

Whereas these people, these Tea Partiers and these conservatives seem to believe if I lose everything, if my family loses everything because I got sick, well…that’s just life. And survival of the fittest baby. I should rely on a church, or shelter (privately owned and operated, of course) but not the government. No…that’s not the role of their government. The one that can make sure their small business gets breaks, just not real people.

So after a night of heated debate with some of these people I ask: where has compassionate conservatism gone? What happened to this grand old party that still talks morals and family values yet preaches no help for people like me and no equality for my gay and lesbian friends? At what point did the all mighty dollar replace the All Mighty?

And when did I become lazy, not worth saving, and most certainly unfit, and therefore left behind in the grand human fight for survival?

So you’ll understand why I argue when you post your status message supporting a Republican. You will surely see why I ask why you support this or that Tea Party candidate. And you will forgive me as I question as you discuss your stance against giving any of your hard-earned money to ‘those people.’

Because those people are not faceless, nameless stereotypes pounded into your head by Fox ‘News’ or talk radio. No. It’s me. And millions of others like me. Simply paying bills, and buying medication, and undergoing treatment to survive…

…Despite you leaving us to die.