About Me~, Uncategorized, Writing

Scrambled~

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Ferris wheels. I used to really , really love Ferris wheels. And roller coasters. I loved the up and down craziness of riding The Scrambler. The Flying Swings. Amusement parks were a ball, and I couldn’t wait to go every year with my Daddy to the company picnic to the big park and ride with him . I went with my friend James and tried to get him to go on the double looped Arkansas Twister with me, but he just stood on the ground firmly  in his wore out cowboy boots and swore that ‘s where he’d stay with his eyes closed , and pray until I was back on the ground  where I belonged .  I used to love to go to Hot Springs , Arkansas and ride the elevator up  Mountain Tower and stand 216 feet above the Ouachitas and look out over the heights and feel thrilled.

But then one day, I got very  sick. I had been pregnant, and I lost the baby . We found out it was because I had lupus .  My body turned into this alien thing that I didn’t recognize. It BECAME a Ferris wheel I couldn’t get off of. Around and around I went. I was on The Scrambler, screaming for the operator to let me off. I’m on the Arkansas Twister , but I’m stuck in between the loops, where there’s no solid ground for me to get back to. I know James is praying for me  somewhere, but I can’t get down again. The elevator refuses to take me off the Tower anymore. It’s been a long time since this horror park first started . I had a few years where I was lucky , and had a period of remission. Those were glorious times.

But the roller coaster has started back up again . I’ve had to go back on the steroids , the anti malarials, the high level Vitamin D, the major pain killers , and spent most of this week in either a state of insane insomnia, crazy fatigue, with my mouth covered in burn-like ulcers, my stomach in  toe-nail churning nausea, or  my body bent over in mind-blowing joint pain .

I no longer go to the “real” amusement park. I don’t find anything amusing in that anymore. My body is “Scrambled” enough. I am starting up the Mountain again, with a new rheumatologist. The one plus is , I really like this one, she seems to be really educated, and very compassionate. I can only pray that the view from the top of the Tower is worth this particular  ride in the elevator .

About Me~, Uncategorized, Writing

One for Our Column~

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Yesterday was such a lovely day . I woke early and the world woke  with me , with  all the hints  that everything good might happen. My body even tempted me with promises of less joint pain, and energy enough to take a small walk down our lane into the sun-tinged air. The wee red fox who calls our farm home greeted me shyly on my way back as if to say, “Happy to see you out today! ” The birds went about their daylight  business looking for their breakfasts and for one golden moment I had a dawn  that reminded me of what my life had been like so many years ago. I did laundry, straightened my kitchen, and walked barefoot through my tomato patch as I had  done so many times as a tomboyish 10 year old , and my Grandpa was one row over again urging me , “Make sure you get them tommytoes off the bottom vines  there, PeeWee!” . I wish I could have captured that moment in  a mason jar, as we used to do the fireflies , to open today , for sometime in the middle of the night ; the tordol, dexemethesone combo wore off, and the lupus pain came rushing back in , with all the fury of a caged beast  , seemingly  all the more angry for having been denied its one day. I want to say I’d never had that one moment , that one day, but if I did  I’d be lying. If we are all honest with ourselves, we would trade a hundred days , a thousand days , and we HAVE traded them, to get that ONE . That ONE magical day that brings back those gilt-lit days of joy, laughter, memories, barefoot -garden days, sun-warmed beach days, child-filled swing -in-the-park -days, those days where we shake our fists at lupus, at chemo, at whatever has stolen our glitter from our lives, and say , “YOU DIDN’T GET THIS ONE!! THIS ONE BELONGED TO ME!!”  , just so we can  put a chalk-mark in OUR column , no matter how small, and continue on.

Uncategorized

Bittersweet~

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It’s so rainy , grey and cold here today. The boys got up feeling under the weather , grey and cold too. They grabbed their big soft comforters and and rolled themselves up like hedgehogs on the sofa with me. Not long after the dogs decided that we looked warm and comfy also. I am left with a tiny corner perched with my laptop . It is so very quiet. Only the sound of the rain on the tin roof, and two little ( not really so little anymore) boys breathing,soft as fairies’ breath, interspersed with a tiny dogs snores. The boys are 15 and 13 now and I can’t help but think , I must grab this moment to myself . For how much longer will they lay with me on the sofa in the mornings? Bittersweet, and magical , two dark heads, once both tiny enough to lay on my breast at the same time , now hang off the sofa , at all angles. They still hug me , and give kisses. And aren’t so absorbed with girls that I am a side note already. I know it is coming.
I see the glances my 15 year old gives the sweet young things at church. They smile at him with that look that only a teenage girl can have. Knowing . Even if I weren’t his mother , I would know he were handsome. Raven-haired and crystal green eyes , with just the right amount of cleft in his chin. And oh, his smile. But he doesn’t know he attracts them. He sees only friends who “happen” to be girls. I smile to myself.
My 13 year old , curls of black, with eyes so blue you could touch the ocean in them, finds solace in quiet places . He is not a social butterfly, and wishes nothing more than for girls to be on another planet somewhere at this point in his life. But they secretly smile for him too. They see that he is shy, so they don’t invade his space , but they watch him from afar , and whisper behind their hands to one another. The rumors get back to me. I gently tease him , and he rolls those beautiful eyes at me.
But this morning I shall soak up every precious , beautiful moment , while they are here, and belong wholly to me. Even though as I lay here typing , my legs are totally asleep from the combined weight of boy and dog . I have never had a happier moment.

About Me~

Attached~

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UHF. I ‘ve missed a couple of days writing here. I hate when that happens. I’ve written . I mean , I never go a day without writing something down. My brain hands won’t allow that.

Today I had doctor appointments all day , and so my schedule has been all messed up. I usually rise at 4 am , and do my lupus support page. I have almost 1600 followers there now. It’s a place where people with lupus or their family members can come and be inspired, have a laugh, ask a question, or just want to seek understanding for what they are going through. Then I try to come here and write , either a poem, or just something that has inspired me somehow. So , I ‘m trying to get back on track.
As for today I’d have to say , I guess I’d like to say I ‘ll have to write about something I found totally surprising. Something I would never thought would have happened. My oldest son, is 15 now. We’ve always had a special relationship, I was very young when I had him, only 18. He had special problems, and I perhaps was a bit overprotective. Joseph went with me everywhere. I didn’t let him out of my sight. He was my little hip attachment. He sat in his car carrier , outside the shower curtain when I showered so I could talk to him , “What ya doing out there buddy? Mom will be done in a minute. , Okay?” . Instead of riding in the cart of the store , I carried him in my arms.”What should we get Daddy for dinner today, maybe hamburgers?” . He slept between my husband and me. He didn’t stay with a baby sitter, and he didn’t go to preschool. He was my conversation buddy, all day, every day, “How bout we go to the park? “or “Boy ,it’s raining , let’s color Grandma a picture.” I didn’t work. People everywhere asked me, “Don’t you get SICK of having him ALL the time?” , or “GOOD grief, DON’T you EVER go anywhere without him?” but I just couldn’t bring myself to do it. His smell, the feel of him. The weight of him in my arms. The sensation of him beside me in bed. The knowing that I was responsible for his care, and the look in his eyes when he gazed at me. He grew older and when he was was 7 and 8 years old he was still my friend, and still spent his time with me. We read books together, and did school together . 10, 11, 12, and now he is 15, the story is still the same . Oh sure, now he sleeps in his own room in his own big futon. He has a big teen boy room. And other friends of his own, but today we were at the doctor’s office and he wheeled me back for my consult at the cardiologist. We sat, and were just carrying on conversation, like two friends who had know each other their whole lives. And then it dawned on me, that’s exactly what we were.

About Me~, Uncategorized

Quicksilver~

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He knows the routine by heart now. He knows the way around the building like a seasoned veteran. He pushes me in my wheelchair without any need of help from anyone . Fifteen ,going on thirty, he makes the turns in the hospital warrens completely sure of where he’s headed . Left , right, up , down, to the elevator with the big yellow circle. Up to cardiology. Sign in, give your papers to the nurse, settle down to wait. They call his name, and he pushes me completely confidently, not that he needs me, but he knows that I need to know what they will tell him when he goes back there. He turns right for the EKG room , and takes his shirt off without being asked. He smiles at me , and asks me if “I” am alright? I am , so we go to the next room to get his pacemaker checked by the Medtronic expert. This is his second implant to have had. He got his first one when he was 9 months old. His second when he was 7 years old. He has a rare heart condition called Complete AV block of the heart. So he’ll always have to have a pacing unit , he knows. He doesn’t seem to mind, doesn’t see himself as disabled. Sees it as more of an aggravation than anything else. Time out of his busy boy’s schedule . The Medtronic ladies come in , and he flirts with them , of course, like any boy with his shirt off should. Then we wait for the doctor . It’s a bit of a wait so my big boy gives me his special smile and wants to know if I’m okay? He’s concerned that all this has taken too long, and I am worn out now. I tell him I’ll be fine , a little while longer. Finally, the doctor comes and does the regular exam , and tells us , we’ll be alright to wait and get a new unit until Summer . My son seems unfazed as usual , his world hasn’t changed at all, he is just worried over wheeling me out to the van so I can get comfortable. I am suddenly struck with wonder . Wondering when he grew from a toddler needing , needing , to this half grown man worrying worrying over me? When did I miss that drastic of a change? Or did it come about slowly somehow, slipping by me like quiksilver through the days til suddenly there he stands? I’m not sure, but it has happened just the same. And something tells me it will happen again just that quickly and again , and again, til all the silver has gone from the glass and his own big boy stands there with the smile, asking ” Are you allright?”

About Me~

6 Small Things~

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~ My Daddy doing what he does best, welding , working , and smiling. ~

You know I’ve always been a Daddy’s girl. He had 3 before me, and I know he surely hoped for a boy with me, but I was what he got, so he told people “Well, that’s the only boy I’m ever gonna’ have, so I guess I’ll make do.” My Daddy’s a really wise man , too. Not school book learned maybe. He didn’t go to college and get all kinds of fancy papers to hang on his wall, but you don’t need those to say you’re smart. I got to thinking this morning it would be fun to write down some of the bits of wisdom my Daddy has taught me so far in life. You know, what good is wisdom , if you don’t pass it along? Hmmmm, let’s see, what would be the number one thing my Daddy would tell me since I was little?

1. Be proud of who you are. Don’t ever let anyone make you feel ashamed of where you came from. He came up poor, or as we say here in Arkansas PO, ’cause he couldn’t even afford the extra OR. People tried to make him feel ashamed of that his whole life, but he was never sorry he was raised up knowing the value of hard work, and the REAL value of a dollar.

2. DON’T DO BUSINESS with your family. It only complicates things. Emotions get involved. You’ll let them run you over like you wouldn’t let a stranger, and then people are forced to take sides . Or as my Daddy so famously says, “Family will do you over worse than anyone.”

3.DON’T start any fights , but DON’T be afraid to FINISH one. I was very small for my age, but my Daddy taught me not to be scared of anything or anybody. I once punched a guy twice my size right in the nose, just for refusing to shut up that I was wearing a dress. ( Not my usual attire)

4. NEVER STEAL. My Daddy hates a thief worse than any other thing. He doesn’t mean a man who would steal something to eat, or wear, or survive. But someone who steals because they are too lazy to get a job. Because it’s the easy thing to do. Steal from someone who works hard, and take it for themselves.

5.If you TELL someone you will do something , THEN DO IT. Otherwise, don’t bother. Liars run right underneath thieves on the list of things my Dad can’t stand. Your word should mean something. Respect, there is such a thing, and he STILL holds to it.

6. And lastly, probably the most important thing my Daddy ever taught me is that tell the people you love , every day that you love them. HIS father’s generation was not from the time where that was something you said. My Dad did not hear that from his dad . It wasn’t that he didn’t KNOW , but he didn’t HEAR it. My Daddy still tells me he loves me every day. He tells me , “You don’t know, might not be here this evenin’. Might not be here tomorrow. I love ya.”
If you didn’t believe in the 10 commandments these 6 things you could live by, I’ve used them in my life more times than I can remember, and they’ve carried me through so many places. They’ve gotten me jobs, made me friends, kept my home at peace , and filled my heart with almost more memories than it can hold. Thanks , Daddy, I love you.

About Me~

Circles~

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He’s 12 , soon to be 13 in just a matter of weeks . He rolls sleepily out of the bed on this Saturday morning still bleary-eyed. His wild, dark ,tangled Irish curls twisted this way and that. He drags his comforter from the bed and pulls himself , blanket , body and all, onto me on the oversized sofa. He’s taller than me now, but doesn’t realize. He smells of sleep and the puppy who warms his feet at night. The cartoons are playing on the television but he’s not watching them, he’s closed his eyes again, as I make tiny circles on his back like I did when he was just a toddler. I close my eyes too, and wonder. Will this be the last Saturday I snuggle with my wild Irish boy? Will Saturday next he suddenly be grown and decide that oversized sofas , and moms and the smell of mornings are just “not cool”? Oh , how I hang on to this moment! But there is no freezing it. The smell vanishes when he decides that his still growing body needs its morning Cheerios. I feel disoriented for a few brief seconds when he stands , the transformation from the toddler in my mind to the half grown man child going to the kitchen. I realize that in just a few more brief seconds , he will be on his own sofa , with his own wild Irish child, enjoying the smell of his own morning.