March 29, 2009
I am so profoundly sad that I find the search for words difficult.
I watched my brother and to some extent his family, frantically try to cram time together into the past nine days, knowing that today would come.
This morning, what was supposed to be me dropping in my parents' house while Keith was there eating breakfast as he often does turned into a 'thing'. Mom made this huge breakfast, but I'd left my boys at home, barely awake except for Steve because I needed, and I felt my parents and especially my brother needed that lack of confusion that teenage boys bring. Even good ones like ours.
Steven and Sam went over later, distracted their grandparents and Steven was able to touch base with my nephew and make plans for lunch at college next week.
But I really sat down here to write about my feelings. My experience.
I remember when Keith left before, his first tour. It was bad but he didn't know what to expect so this time, he has an idea and he is desperately going to miss his family. But he told me that he was protecting his family. My kids, his kids, me, he is protecting us.
I held his sweet head to me with his sandpapery cheek next to mine an I tried to burn the memory into my mind. I felt his porcupine military haircut under my hand and I whispered to him "My brain doesn't work, you know. I'm making a memory and it takes me a little longer than normal people." I held him the very minimum I could stand which was likely the very maximum he could stand and we deliberately did not meet each other's eyes.
He should be in New Jersey, getting ready to go.
I love him so much. I pray God will protect him and all our servicepeople.
And I pray for peace for those of us left at home.
This has to have been a nightmare of a day for him. An absolute nightmare. In a way, it will get easier when he gets to Iraq and can begin doing what he was sent to do.
March 26, 2009
A letter to my friend Tamera,
Tamera,
In these last hours before you begin the next portion of
your life, I thought I might share a few thoughts as the cake goes
together so that you might one day go back and look and see what went
on amidst the flurry of preparations at your house.
It has been 11 years since I did a wedding cake. We'd put all my
cake decorating supplies in the attic because they took up such a huge
amount of space in the kitchen and made me sad. So *though I told him
not to because I thought I knew where the pans I needed were,* Steve
decided he had to climb up in the attic (it takes an extension ladder
to get to the like 16 foot high ceiling in the garage) and look around
even though Steven, the young, wiry, one was already there. The old
lion had to supervise. So when he climbed up, he got about to where
his head and shoulders were in the attic and the ladder fell out from
under him. There he was, hanging 16 feet from the floor, too far to
jump on arthritic ankles, totally scraped under his arms on his biceps
and on his torso from catching himself.His legs were hanging out of
this tiny square hole in the big tall ceiling. In a stroke of luck or divine intervention, the ladder fell against the wall where he could reach it. The garage was so full of junk he'd have hurt himself for certain if he'd tried to jump.
I was in the bath. I remember thinking "I told him to stay out
of that attic. He better not have dropped anything from that
high"....LOL. Funny only because he wasn't really hurt. There's an
object lesson between the *...* for your Steve should he care to read
it.
I spent two weeks gathering what I needed, I ordered the roses and
got an extra dozen so I could do what I wanted and not worry about
skimping. As it turns out, for the layout, it's exactly what I needed.
I couldn't find pearl sprays, so it hit me like a hammer that I had
literally tens of thousands of beads and within ten minutes I had the
little circular pearl sprays I wanted for your topper.
My
OCD personality being what it is, I went over each detail time and again,
as I did with every birthday, wedding, anniversary cake I ever did.
Today, Thursday, after Steve came home from work, he did the
baking. I cut the tops off, the rounded domes, so that the cake would
be cylindrical and flat on top.
It was at this moment that we
realized Sam was only 4 the last time he'd had "cake scraps". When my
kids were little, after each cake was finished, or during if they were
underfoot, I'd give these scraps that I otherwise would have thrown
away to the children to eat. They are sugary and moist and the
children's friends were quite envious of their ability to eat cake pretty much at will.
We had so many "guests" that at one point I had to say "No friends at
our house on Fridays" so that I could get my work done.
Anyway, this Thursday night, I handed my huge boys hunks of cake
scraps and they were all grins. They'll get more tomorrow. Wedding
cakes were always spread out over several days for best results.
It
occurred to me that in this week that I got a paying writing job and am doing a
wedding cake, that you are starting the new
period in your life, but I'm getting a taste of my life back.
That's a huge gift for me. To get a glimpse of real life again.
Just a glimpse...it's huge. I got to be normal for a moment today.
Thank you for that.
I hope that you can truly understand the
enormity of it. Tomorrow I will put the two tiers together. Saturday
I will fix the flowers so that they will be most fresh.
I have two more opportunities to feel normal.
Thank you for that my friend.
Be Happy.
I love you,
Jennifer
March 22, 2009
When I was little, I remember a phrase quite clearly that was self explanatory. "I feel like I've been hit by a Mack Truck."
Mack was , and for all I know still is, a brand of truck. The big kind, the tractor trailer kind. It was a Big Bad Truck. So if someone felt like they'd been hit by one of these Big Bad Trucks, they must feel bad indeed. Even as a child I could understand that.
Today, I was hit by a Mack Truck.
I stood in front of it, watching it hurtling towards me. Mesmerized by the lights, I didn't move. Perhaps I couldn't.
Truthfully, it wouldn't have mattered. Diving one way or the other would not have made a difference except that it perhaps would have signaled my acceptance of the truck driving my direction, by getting out of its way.
Anyone who knows me will tell you that is not my nature. Instead I stood there. I didn't move. By God Above if the driver of the truck was going to hit me, he was going to know he'd done it and know what it did to me.
He hit me anyway, and he didn't care.
My Oldest Son, the one who just returned from nearly a year studying abroad in Japan...the longest year of my life...announces he is going to China in September to study abroad for a year. He is going against his parents' and grandparents' wishes.
Having him in Japan was hard. But Japan and the U.S. are friendly. China and the U.S. are not friendly. China is still communist for pete's sake. He has no business there. Not to study, not to visit, nothing. Not on his own.
So I let the truck hit me and I stood my ground, knowing that Mack Truck was going to flatten me, but I would NOT step aside. NO I would not. It may have been on shaky legs, but I stood my ground. If he's going, he's going around me, or going around my hospital bed. I'm not stepping out of his way.
Remember please, my brother leaves for Iraq in one week.
I will have Brother in danger in Iraq, Oldest Son in China against my wishes, and God willing, daughter in her doctoral program in Tennessee. Suddenly HER destination doesn't seem so far.
March 2, 2009
The nature of pain.
A thread on facebook has caused me to reflect upon the nature of pain.
During this daily battle with lupus, I have fought with, agonized over, been twisted inside out by nearly every kind of pain I can imagine.
Pain comes in many colors, forms, shapes and sizes. Physical pain is the easiest because you can rail against it and people seem to understand. There are many modalities of pain relief for physical pain, from physical therapy to surgery, to medication. All are socially accepted.
I have been curled in a ball in pain, in the dark, in the quiet, while my family worried over me, sick with emotional pain at causing them such worry, such emotional pain for them. It wasn't my fault. There was not one thing I could do to change it and the harder I tried, the more my body was stressed and the sicker I became.
I have spent many hours wrestling with guilt. Oh to have those wasted hours back. Once again, what small pieces of the puzzle that make autoimmune disease that are under my control, I control rigorously. But I spent a great deal of time feeling guilty that I had not been a "healthy" mother to Sam. That I was a financial drain on the family. Certainly not my fault though I could get on my soapbox about the drug companies about now.
There is mental pain. Only someone who has had this strange perceptive issue can possibly understand and no matter how hard someone thinks that they *can* understand, they cannot. Seizures that scramble your brain, stopping your words between your brain and your mouth. Frustration building because you *know* the answer to the question but it will NOT come out your mouth.
Smelling things that are not there...seizure signs. Hearing bells...again seizures. Having the family look at you with pity and wanting to lash out that the sound IS there. The smell IS there. But it's merely a misfiring of neurons in your brain.
Having your mother, who knows little about the disease, argue with you about what the doctor said. Frustration because you know she is frustrated, too, but in the end, the doctor wins for *I* am no idiot and I research everything before I do it or take it.
Fear is the worst pain there is. It whispers in your ear, it devours you from the inside, and it can totally immobilize you. Fear is a class of pain as far as I am concerned. The worst class.
The one way I deal with pain effectively is to remember that there are others in worse pain. The new widow. The neuropsych who is a paraplegic.
There are worse things than having lupus.
Everyone has pain. It is there in the shadow at the back of their smile.
We all put on a facade while it eats at us from the inside out.
In a book I am currently trying to get through, the author quotes the Buddha as saying that enlightenment is the end of sufferring. What does that mean? Death? To come to accept your sufferring for only in that way can it not harm you? I'll argue that one.
Older Son says that it means we come to accept that sufferring exists. But that does not end it. In fact, it belittles it for those experiencing it.
I realize there is much to understand here.
I believe that God put these wise leaders on the earth so that we might pick from their leavings that which is helpful to us and leave the rest for someone else's enlightenment.
In the end, nothing makes sense more that God's plan. However His plan involved sufferring. Jesus knew he was going to suffer. And he didn't want to do it. He asked that it might be taken from him. *That* I understand. I am convinced that Paul's thorn was lupus. But in the end, Jesus did what He needed to do to further God's kingdom.
I guess the realy big difference is that unlike me, he didn't bitch about it.