Shattered

Yesterday was the one year anniversary of my sister’s death. I wrote this piece last year, just after she died. I’m re-posting today in remembrance.

Organizing Chaos And Other Misadventures

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Around 12:45 in the morning, on Saturday, July 27th, I broke a glass. I didn’t mean to do it, but it happened all the same. I knew the glass was slick, as there had been a cold perspiration about it for days. I knew it was slippery, so I grasped it tightly in my right hand. I was very conscious of that glass, and I was so careful, so gentle when I held it.

It wasn’t a fancy glass, but it meant a lot to me. You know how when you get really thirsty, and you open the cabinet to grab a glass so you can get a drink, and the first one you look for is that one, the one cup that feels just right in your hand, the one that seems to make your drink colder on a hot day? Yeah, that one. Sometimes, that special…

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Why I Cannot Stand.

I’ve tried to keep my mouth shut. Really, I have. I know what I believe, and I know what scares me about the Hobby Lobby ruling, and I’ve thought about it in the wee morning hours, when my kids were asleep and my brain was wide awake: thinking, worrying, swirling with anxiety.

I’ve ventured out a couple of times to comment on the posts of friends who’ve asked for opinions, and been promptly slammed for my stance. And I back away: because I dislike confrontation, because I dislike being yelled at, because I dislike being told off in all caps.

Because, I think, I’m not changing anyone’s mind. They aren’t even listening.

So I shut up. But then.

But then, the uneasiness in my gut is weighing ever more heavy. My own silence is what is keeping me awake at night.

I am a Christian, and despite what you may have heard, I do not spend my free time ripping hijabs from the heads of local Muslim women, or seeking out tattooed people to tell them they are going to hell.

I believe in God. It’s a decision I came to on my own, as an adult. As I’ve grown older, I believe even more. I don’t hate anyone. I work hard to be kind and compassionate. I believe as humans, we all hurt, we all cry, we all grieve. We all love. And we have to respect one another. We have to help one another. I have friends of various religions or non-religions, and I respect their beliefs. Doesn’t mean I understand or embrace their faith (or non-faith as the case may be), but I get that they base their lives and their decisions on what they truly believe is right. And, you know, it’s cool, brah. We’re still friends. Let’s hug. There. Okay. That’s enough of that. Seriously man. Let me go. I ain’t big on hugs. Personal space, buddy. I said PERSONAL SPACE!

And I’m pro-life. I know, right? It isn’t the popular thing to be these days. But there you have it. This is a core belief I’ve held all my life: before I even understood what sex and reproduction really meant, before I became a Christian, before I became a mother. And I don’t picket abortion clinics, screaming at weeping girls. I’m not Westboro. I’m not out to hurt anyone. Seeing people in pain causes me an ache down deep in my gut, and I’m compelled to show love and friendship and try to figure out some way to help.

Simply put, I’m pro-life because in my soul, I believe every life has a purpose.

On the surface, these two things together should mean I am ecstatic about the Hobby Lobby ruling.

I’m not.

And I cannot stand with them.

Once we open a gate that says a Christian employer can deny medication coverage based on personal belief, it’s going to flood. And this is where it gets personal.

I’m a mother of four, and three of my children live with Primary Immunodeficiency Disorder (PIDD). Their “trashcan” diagnosis is Common Variable Immunodeficiency, which means they lack the part of their immune system that fights bacteria and viruses, and they don’t make antibodies to illness or vaccinations. What does that mean? In short it means, let’s say you have strep throat. It feels terrible, and you get some antibiotics from your Friendly Neighborhood Physician, chill on the couch watching some crime drama marathons on TNT for a couple of days, and then you feel better. The next week, you encounter someone with strep again, but you don’t catch it…because you’ve made antibodies. People with a primary immunodeficiency can’t do that, so they can catch strep, watch their TNT marathon, get better, come across someone the next week who has strep, catch it again, watch another TNT marathon, rinse, lather, repeat. Now, if someone with PIDD has strep or some other illness, and comes across another contagion, maybe pneumonia or staph or some other form of Big Bad Ugly, their weakened immune system can become overwhelmed. Sometimes, this will end in more infections. Sometimes, this can end in organ failure. And sometimes, this can end in death.

There is a treatment for PIDD, and it’s called Intravenous Immunoglobulin, but in Acronym Land, it goes by the handle IVIG. IVIG is a plasma by-product, and is given via infusion usually monthly, sometimes weekly, and it provides sort of a temporary immune system. It contains antibodies from the donors (thousands and thousands of donors) and helps to keep the Big Bad Uglies at bay. This treatment is necessary for health, for quality of life, and for, you know, not death. As in, the opposite of.

I’ve been taking my kids to a hospital for IVIG about an hour and a half away, every three to four weeks, for over eight years now. Each bottle of this treatment costs about $7500, times three children. Every month. Currently, we have insurance that covers this life-saving treatment. But that could change.

There are religions, such as Jehovah’s Witnesses, that eschew accepting blood products of any kind. They don’t believe in blood transfusions. Which means they don’t believe in IVIG infusions.

I brought this up in a conversation I was rather hesitantly involved in yesterday. I asked, “What about my family? What if this happens, and my kids no longer have coverage for their infusions because of this ruling? What about other families like mine, who rely on blood products to survive?”

I was told it was a far-fetched idea.

I was told we are such a small fraction of the nation, it couldn’t really be considered.

I was told even if that happened, even if it turned out my husband was working for someone with this belief system and they could refuse to pay for my kids’ treatments, then the ruling would still be right.

I asked, “But what if that happened, and my children died?”

The answer? Those are only three lives. They could die, and that would be our own fault, because we COULD have found a different job, or we COULD have chosen to pay for the infusions ourselves. My kids’ lives are not the problem of religious freedoms. We’re moving forward here! Taking back our nation!

Maybe. I guess to the world at large, those three lives don’t change much in the grand scheme of it all.

But those three lives are my whole world.

Paying cash, one infusion, one month, for three of my children would cost around $30,000. That is more than we earn in a YEAR.

My husband currently works for a temp agency. Third one in the last twelve months. He is a hard worker, and he has a degree. But jobs are hard to come by around here, and if you’re lucky enough to find one, you’d better be damn grateful for your paycheck.

But let’s say he did. Let’s say he left the job and found another. Through another temp agency? You have to put your time in before you are offered health insurance. How long is the time frame? Depends. Some places, it’s three months. Some, it’s six. My husband worked one place last year that required a year of work before time was in.

Three months? Six months? A year? In that time, my kids could catch influenza followed by some variant of staph and POOF! just like that.

Gone. My children. My babies.

But I know. It’s just three lives.

You know what, though? The actual incidence of Primary Immunodeficiency is approximately 1 in 500. And that’s a lot more than just the three that live with me. (I have a deficiency as well, an Immunoglobulin G Subclass 2 Deficiency. I’m not worried about my insurance coverage or treatments, though. Don’t be silly! I haven’t had health insurance in over five years.)

I would never have imagined this type of lifesaving treatment could be denied, especially to children.

I would never have thought the religious beliefs of a company could rule over the medical treatment necessitated by a physician.

I would never have thought a company could “fake” a religion, simply to save costs because an employee’s chronic illness was costing too much.

But now, the gates have opened.

They’ve opened against three of mine.

And that is why I cannot stand.