Thursday, May 12, 2011

Pause Button

I had a friend tell me recently that she wished there was a pause button to life.  That she could tell the world to stop spinning around her for a little while, and then she could catch up. I think we've all felt that way sometimes, but it occurs to me that I've had that pause button pressed so many times.  It's called Lyme, and it pauses everything in your life.  Unfortunately, though, it does NOT pause everything else.  While you sleep, while you are ill, while your family is ill, while you stay at home on the couch, everything else moves around you. It's like a strange variant of Sleeping Beauty.... she doesn't age, but the dust accumulates, she doesn't move, but the world around her sleeping place whirls and changes exponentially.  A fast motion recapture video in the making. 

This week, this re-experience, has once again shown me that.  Baby e is sick  Not regular sick.  He keeps patiently shaking his head as I ask what is wrong:  Does his head hurt?  No. Does his stomach hurt? No. Gut?  No. Ear? No.  He patiently keeps shaking his head, ever and over and over. 

Why am I looking for a reason for him to feel bad?  Because I know what it Means when  one of my children starts running fevers of 102, 103 with no visible reason or illness but general malaise. And while the little captain has thus far avoided all the symptoms his siblings had as babies-- the 103 degree fevers once a month,  the strange spots that look like thumbprints of redness that don't  rash or seem to bother them, yet move around their bodies,  the constant illness, the dark circles under their eyes-- he's started having more and move illnesses lately, and is beginning to show the signs.  This, for a mom, although inevitable to our household perhaps, is heartbreaking.  To know that once again, this poison is circulating in another sweet little body, is a personal, private tragedy.

and yet, I know that, even knowing these difficulties, that my little ones chose to come here to Earth and chose to participate, not only in life, but in life with me, a very imperfect mom and rather bad housekeeper, who does not craft with them daily and go on hike and expeditions.  They saw, as spirits prior to joining us on Earth, the whole picture, the goal, and knew that in the end, the monthly pain and the constant sickness would be worth it.  They chose to come, knowing that we might not be those people who can say "you TOO could grow up to be President!"  Not these kids. We don't tell ourselves that we can do ANYTHING.  We do, however, tell ourselves that any path our Father has given to us, we can follow, and follow with great faith.

I came across a quote today on a mommyblog, and I wish I could quote the whole conference, but I can't find it (yet).. However, the quote was from BYU women's conference, from Elder Bednar. (hopefully the link will work, lol)   It is as follows:

Elder Bednar  2011 BYU Women's Conference.

“I believe many, if not all, of the most satisfying and memorable accomplishments in our homes, in the Church, in our jobs and professions and in our communities will be the product of this important spiritual pattern — of small and simple things,” Elder Bednar said. “We should find great comfort in the fact that ordinary people who faithfully, diligently and consistently do simple things that are right before God will bring forth extraordinary results.” ...

“The spiritual pattern of small and simple things bringing forth great things produces firmness and steadfastness, deepening devotion and more complete conversion to the Lord Jesus Christ and His gospel,” he said. “As you and I become increasingly steadfast and immovable, we are less prone to zealous and exaggerated spurts of spirituality followed by extended periods of slackness.”

Ordinary people doing the same things over and over, with the intent to become closer to God-- this describes Mommyland perfectly, if we're trying to do it correctly.  Faithfully, diligently, consistently.  I might not have, for example, the most magnificent vacations spanning every church history site in the US, or the magical FHE's that are passed on  by my children and their children's children for generations to come.  We might, on occasion, call our Monday night endeavors Family Home Fighting, not Evening.  BUT, by consistently doing all the things we are trying to do, we are becoming consistently, perhaps incrementally, better and better at following His way for us.  And perhaps sometimes those increments seems infinitesimal  in comparison to the swirling of the world around us,  like that pause button has been pushed. Like running through knee deep water at the seaside.  But we are growing spiritual muscles by simply sustaining the pace, however slow it may be.

I'm heartbroken that my baby son has begun to show little spots that look like my coinfections, that his dark eye circles show even while he takes four and five hours naps these past three days.  But as long as I can teach him, by word and example, to keep moving one small and steady step at a time, together we can rejoice in being ordinary followers of Christ. And that will be enough. 

Saturday, May 7, 2011

Shaky Shaky Shaky

Ok, so let's talk about the palsy bit.  Really.  The shaking hands and fingers and legs and stuff.  Not everybody who has Lyme gets this, but it was one of my first symptoms.  It came, lasted for years before we figured out what was going on, and then went away....I thought for good, I thought, I conquered this thing. YAY!

Only, it wasn't gone. One of the weird things with Lyme is that when you're in a good treatment, often your symptoms reverse order in their process away.  Weird neurological stuff, I personally have no idea the medical reasons, but something with the plaque in the brain, yada yada.  And sure enough...back came the shaky hands. One hand worse than the other for me... all my worst symptoms are all on my right hand side, and again, no real reason we know why.  Regardless, once again I got the palsy thing, and then it left.  

Except, it didn't. It was back last fall, and was one of the reasons I began searching for a doc that would do IV therapy. I found a kind one in DC area, who was reasonably well read on the whole issue, and gave me a couple of months of IV.  I knew it wasn't going to last forever.  Seriously, I know, at this point of the chronic infection, it's not going anyplace.  But I figured, maybe a couple of good years, then I do IV or combination oral antibiotic therapy again, no big whup. 

That was December.

My palsy hands returned three days ago.  So....five months.  5.  Not even six.

This is a major setback.   I'm not sure what to do now.  I'm loathe to even talk about it with Sir.  Frankly, the conversation with Sir will probably go like this-- "Sweetheart?  I think the palsy in my hands is back."  Sir: "cool."  That's it, basically.  That is the convo.  He's not really a talky type.  He'll process it in his own time and get back to me with a plan.

But in the meantime, I am expecting what comes next.  The next part is the leg.  My right knee will begin swelling more than usual, despite the lymphedema stockings and redi-wraps.  I will spend more and more time asleep... which has been happening already.  Already I've seen the nasty mock-sinus infections returning.  So, what to do about it?  What to do before it comes roaring in, a private tornado to my mind and soul?

Rage against the dying of the light is correct.  Rage, Rage.  My mind, my creativity, it is my light.  This thing has tried to steal my words, my poetry, my music.  It has tried to steal my relationships. It has tried to steal my joy.  but I'm stronger than any of these myriad bacteria which infest my body and mind. 

One of my greatest capabilities, for good or ill, has been defiance of will.  Hopefully, I have learned to be courageous instead of merely obstinate.  I keep my will my own, while submitting my Will to my Heavenly Father.  He has never given me this pain for more than I could bear.... although the last pregnancy was close, and often, like many others, I wish He didn't trust me with quite so many adventures. 

I figure, in the end, if I cannot sing, I will write.  When I cannot write, I will paint, and when the words blur together, I will read.  Thank heavens there are good audiobooks available, although I'll probably have to pay off the library fines my children have incurred by losing a couple more books this month, including one we donated to the library in the first place.  (So I have to pay the library triple the cost of the book, for reshelving fees, for a book I decluttered from my bookcase. Really.)  When I can no longer stand up to clean my house, I will roll and clean it halfway (who am I kidding... what's halfway from the third I already do?) and then when that's impossible, I'll be even more grateful for my chair lift and the housekeeper I will find someday.  hopefully by then, Mr e will be in preschool, so when I sleep all morning by accident after the kids go to school, he will be in no concern or danger and perhaps will still be learning something. 

My dearest fear, though, is for my beloved E and A.  They see this constant worry and struggle, and they know this same bacteria is lying partially dormant, partially attacking in secret, in their own systems.  They know what is coming.  Evva asks me, "Mama, do you like being a Mama?  Is it too hard?"   Already she is beginning to see the differences between the way we live, and the way her friends live.  Our house is not as disgustingly dirty as Sir thinks it is, nor is it as clean as I would like... especially now that the Captain is potty training, sometimes inefficiently.  But, seeing how her mother struggles, even when I assure her continually that, yes, I love being a Mama, yes, it is hard but it's a good hard (mostly), she knows, all the hard she already feels is going to become amplified by the years and bacterial overgrowth.  How can she begin to think about someday having a spouse, having children, when she will by then know that she could share this sickness with them as well?  But how could she consider anything but the joy of a beloved and motherhood, even in all of the extremely hard parts? 

My goal must be to rejoice in motherhood, that my children see me bearing my trials, but know that they are not among them.  They must always know that they are firmly on the blessing side.