December 9, 2010

Don't be Sorry

I guess you can tell from the first letter of this sentence that it's not Shannon writing. There's capital letters and full punctuation! Hope you can read it!

Sitting here with Shannon. It's Tuesday evening and we're up in our room dripping IV fluids into Shannon. She's crying quietly and I'm trying to figure out what to think, what to say, what to do, how to fix this. There HAS to be a strategy, a plan, a list of things to do to make this better. Someone HAS to come along and say, "here's just what you should do!" That list, that plan, that someone, the rescue never comes. And the void of that sits in my head and screams at me.

When it seems like it's getting better, in many ways it gets worse. It's worse again. Shannon's seizures started at the end of October, and not a lot has improved - maybe 3 or 4 days that she could be up or even out the house. She's been throwing up for nearly a month now, lost about 10 lbs. Seizures are more controlled (by drugs) since they first began but have ramped up again over the past 10 days. Mostly confined to bed, lots of pain. Lots of waiting and frustration. Endless phone calls back and forth to doctors, chasing down prescriptions and waiting for pharmacies to prepare meds that you wonder if they'll actually even help.

Hey, life still goes on even when sickness dictates we don't or can't. Parker's birthday is this month. We had the extended family over to celebrate. Had to celebrate it up in the master chambers (our bedroom). It seemed that not everyone was comfortable with that, but that's where Mom was, and Parker wanted to open his birthday presents. Who would want to miss out on their kids' birthday?

So, is now worse than before? Who knows. I certainly don't know anymore. I don't know if anyone knows. Even her expert doctors.

It seems like an eternity ago "this" all started. "This" is ruining everything. Nothing could have prepared me for "this". I've been at home for the past 4 weeks. My work has been amazing at giving me this time off  to look after my family. But really! What can I do? Run IVs, dispense drugs, drive to appointments, cook dinner etc. All the stuff normal people do except the "look after the sick in the house as the main job". This all consuming sickness that doesn't go away - or so it seems.

Parker has rallied quite nicely over the past 10 days and the Pain Management Team at Children's Hospital is singing full stanzas of "Welcome to Wellness!"  He has made great progress overall and he IS on the road to recovery - but he still faces a marathon of a fight. The ever-smiling folks at Children's Hospital don't have clue what this disease does. Or how it operates. Not a clue. And they've made it clear they really have no interest in learning about it. They have their own "agenda". We've just learned to work with what is applicable- pain management strategies - and politely smile at the BS. We're so sick and tired of trying to explain it to them or to anyone for that matter who really can't be bothered to understand this disease. Parker is not better. He still deals with significant pain every day but he this week he has been able to "do stuff" again. We are glad about that. We haven't wanted to burst his bubble but we did have a frank discussion with him about what happens when he does have a lousy spell again - most likely it will happen. Parker is realistic and optimistic. So are we. He can't wait for basketball to start at school. He's training now.

Taylor has managed to land himself a job at Future Shop. This is a place that I approve of because of my need for electronics. He continues to push through his treatment in own quiet way. That's the way he is. I don't think most of his friends have a clue what he endures on a daily basis. Because of this disease, he's not doing what he would have wanted to do. He has to wait. There's not really a lot of choice at this point.

Shannon is realistic, but not feeling optimistic at this point - again. I don't blame her. She tells me she's sorry. Sorry for what? Who do you blame for this except God? And we're told we ought not to blame God for anything because He knows what He's doing. I get that part, but enough is enough. Enough suffering already.

Have you ever gone to an amusement park? Sure - with your friends. Folks usually don't go alone. It's a lot more fun to go on a roller coaster with friends - so you can scream your collective heads off, to laugh and hang on to each other. TOGETHER, EACH OTHER.

This whole sickness fiasco is like being strapped to a roller coaster that doesn't end. It stopped being fun a long time ago (was it ever fun?), and somehow all your friends have fallen off and they're now doing something different. Some of them have long forgotten you're even there. Some look up once in awhile and offer something, but it's a gesture from far away.

I'm saying that a bit tongue-in-cheek, because in some ways there's some real saints who have tied up their ships alongside of ours during this storm. Really amazing actually. Tying two ships together in calm waters is safe, but throw in some swells, and it gets a bit nasty. In many ways, we're experiencing loss. We've felt like we've lost so much. Because of sickness, we've lost so much of what we thought we could offer to our children, to others, to each other. Because of sickness there's quiet zones in our house. There's closed doors. There's other people picking the kids up from school  instead of Mom or Dad, because they've had to go to another appointment, or because they had to go to the hospital again. There's making arrangements for other families to have our children stay with them because a sleepover at our place isn't really all that realistic. Try explaining that to Avery again and again. But people have been stellar! We're constantly amazed and overwhelmed at the generosity, caring, and stamina of those who are committed to seeing us through this plight.

But I'm tired of this plight. And maybe it's just that right now, it's hard to see clearly. The loss, the ongoing loss, looms larger than anything. There's not a great deal of perspective that I can conjure up right now. Nor can Shannon. I guess I understand when Shannon says sorry. I'm sorry too.