So Here’s The Thing …

Where have I been for the last month?  Did not fall off a cliff.  Was not deported.  There is a story to tell and on the Lame Story Thermometer it’s quite impressive.  So here’s the thing …..

I could tell you I’ve been in mourning since Michael Jackson died.  Well, I did watch the memorial service.  And the Jackson 5 movie.   Does that count?

I could also tell you I’ve been very busy painting.  Except  I have not been painting much. But I did think about my current project .  It started out like a sunflower on steroids and LSD but somehow it wandered down the path of extreme butt-face ugliness.  After a coat of white paint to cover up the abstract monstrosity, I began work on what may perhaps be an even an even uglier abstract monstrosity with blues and yellows.   In the meantime, I have a towel flung over the canvas so I don’t have to look at it.

KINDA THE LOOK I WAS AIMING FOR

My sister recently had heart surgery to replace her aortic valve.  She was born with a bicuspid valve; an inherited swimming-in-the-shallow-water genetic fluke.  So now she has a bovine (moooooo) valve and will soon be able to chase grandchildren around the yard.  Last week I did spend most of my spare time at the hospital.  Her doctor noted that since this is inherited, her children and siblings should get a complete medical workup.  I’ll put that on my list of things to do.  Later.  Today she was discharged from the hospital and is happy to be resting at home.  Her short-term goal in life at the moment is to be well enough to go to the American Idol concert at the end of August.  I’ll be happy if we score a great handicap parking space.  Ya’ll think the sympathy factor would get us a backstage pass to meet Adam?

BAD VALVE

GOOD VALVE

Last month we relocated our medical office to a new hospital campus.  Moving is hard.  So is packing.  Packing AND moving totally sucks.  But I’m a stoic individual who didn’t want to look like a complete middle-aged chicken shit wuss with lupus who can’t lift heavy boxes.  I usually save that approach for non work-related catastrophes.  However, I’m an idiot and I did overdue things.  Now my neck feels as supple as a redwood tree.  Maybe I will join the gym after all.  On second thought …

ME CARRYING HEAVY BOXES WEARING SANDALS??

Also last month I went to visit my son and daughter-in-law.  Hung around the farm they live on;  spent time at the sand beach, went to a movie and attended an open house where Matt was in charge of a wild edible plants exhibit.  Nothing quite like tasting garlic mustard pesto and cattail hearts.  However, I did have a super time.  And a little FYI for you moviegoers out there.  Do not watch the new Sasha Baron Kohen movie “Bruno”.  Quite the bizzare experience watching full frontal male nudity and a swinger club party on the big screen with your family.  I wanted to disappear like the prophesied Rapture in the bible.  Turn your head and I’m gone in a flash.

PLEASE GOD GET ME OUTTA HERE

On the lupus side of my life, I’ve had three infusions so far.  I get them every three weeks and am grateful to have a course of treatment that works like magic.  Mind you, IVIG is not a cure for lupus.  I’m in the very small minority of people with refractory response to conventional medications.  The last week or so has been hectic and my body has been telling me to slow down, stay out of the sun and heat and rest.  I did try to listen and managed to cut back on cleaning, etc.  As a result, the house is a mess and the laundry is piling up.  But that’s life with lupus.

Ego venit ego vigilo ego confero. I came, I saw, I wrote.

It’s good to be back.

Prayers for Sarah Jane

I’m sharing this story in the hope you will read it and find room in your heart to pray for a special little girl that needs a lot of love and support right now.

My son has a half-sister, Sarah Jane.  She is eight years old with blond hair and the longest lashes in the world that frame her pretty blue eyes.  As you will see, Sarah has an amazing smile.  She’s a sweetheart and our family loves her more than words can say.

Matt's sister Sarah Jane, age 2

Sarah was diagnosed with epilepsy at a very early age, after what seemed like an unrelenting round of seizures.  Despite the medication side effects and slight developmental delays, Sarah loved to play and dance and sing … all the things that little girls do.  Just before her 3rd birthday, Sarah had a very bad seizure that lasted over 5 hours.  The doctors put her in a drug-induced coma in the hope that this seizure would stop and her brain would have time to rest.

When she was physically stable long enough to wake up, Sarah was blind and could not smile.  She now had cerebral palsy.  She could not swallow and required tube feedings.  She could no longer dance or sing.

Sarah on her 3rd birthday with her mom and dad

In 2004, we celebrated Sarah’s 3rd birthday in the pediatric intensive care unit at the hospital.  She was in a coma and intubated at the time, so we sang Happy Birthday in hushed voices at her bedside.  The day I took this picture, I held steadfast to the hope that she would have many more birthdays to celebrate, despite overwhelming odds to the contrary.

And she did.

You can read Sarah’s story here.

Sarah can’t dance, but she can ride a special bike.  She can see much better now, thanks to eye surgery and glasses.  Sarah loves to cuddle with her big brother  Matthew.  She adores music and loves to sing and laugh.  She is truly a heaven sent gift for those of us who are blessed to know her.

Napping with big brother Matt

Best of all, Sarah got her smile back!

Sarah with her mom, Sandy

This year, just before her 8th birthday, Sarah had problems breathing and had to return to the hospital.  She has developed pneumonia and other complications that required her being placed on an oscillating ventilator to help her breathe and give her body the necessary time and energy to rest and recover.  The doctors have her on a lot of different medications.  Because she’s on a breathing machine, she has been given medication to keep her asleep and comfortable.

Sarah had her 8th birthday in the PICU.  There were balloons and signs and Happy Birthday songs for Sarah, but she wasn’t awake to hear or see the celebration.  Her big brother Matt, little brother Graham, sister-in-law Laura and Aunt Sue (me) spent Easter Sunday with her, taking turns visiting, holding her hand, and praying for a speedy recovery. The road back home for Sarah will be a long one … many weeks to come of waiting, watching, and praying.

I’m asking for prayers and good wishes for all of you who read this post.  I believe in the power of prayer and positive thinking.  Please keep Sarah and her family in your thoughts and hearts.  Pray for the amazing doctors and medical staff that are treating Sarah 24/7.  Their care and compassion is miraculous.

Thank you for taking the time to read about Sarah.

Once again, we’re waiting for Sarah’s smile to return.

Spring Break 2009

A little heaven on earth ...

Last  week I drove to Wisconsin for a visit with my son and daughter-in-law.  I treasure these times when we can spend more than a couple days together.

Laura is currently enrolled in a graduate program at University of Wisconsin-Madison.  She’s majoring in Agro-Ecology, They found a wonderful place to live while she’s enrolled ….  a certified organic farm in Cottage Grove, Wisconsin called West Star Farm.  The farm itself is busy getting ready for springtime planting and the greenhouses are buzzing with activity!  The photo above is the main barn at West Star, and obviously was taken in the summer.  I got to meet Amy, the farm’s full-time manager, and Bev, who is also a student that lives on the farm.  I  met several roosters and hens, lovely birds that are senior citizens.  They don’t lay many eggs, but are beautiful to watch … two sisters and their RIC (Rooster In Charge), a dapper fellow who likes to crow alot.    I’m a city girl, so spending time on this amazing farm is quite a thrill for me.  And the night sky!  The heavens were filled with so many stars!  It was beautiful to sit outside at night.

Yesterday, my son gave me a tour of the work he’s doing for the Sand County Foundation.  Matt’s an arborist who specializes in ecologic land restoration and preservation.  He’s currently working with the Aldo Leopold Foundation.

Aldo Leopold (1887-1948) father of wildlife ecology

Matthew’s field studies are fascinating.  Maybe it’s the mother in me that’s a little nuts, but I’m more than proud of the work that Matt and Laura are involved with.

During my visit we spent time cooking and baking … tried out a great biscotti recipe.  Laura and I went to a yarn shop and spent about an hour checking out wool, organic cotton, needles, etc.  Then we went home and started on our new projects.  We’re both novice knitters, so it was fun to have that to share.  Matt and I went shopping for leather boots for his work and I treated him to a big screen movie …. something he hasn’t indulged in for almost two years!  Unfortunately, it was a stupid, long, and ridiculous film but we had a good time anyway making fun of it and laughing afterwards.  It certainly made our Top Ten List of really bad movies!

On the last day of my spring break we went to Bayview, Wisconsin and had dinner at one of our favorite places, Cafe Lu Lu.  Laura’s brother and Matt’s former employer and mentor joined us  for a great evening .  Lots of stories, great food, good company and a full serving of laughter and general silliness!  These are the events that nourish my soul.  There is nothing more wonderful than spending time with the people you love and respect.  It was a perfect blend of family and friends, old and new.  I am truly blessed!

As I drove home this afternoon, I had already started missing my boy.  But he will be home for Easter and that will be upon us sooner than I know.  Leaving Wisconsin, the air was warm and full of promise.  As I drove south, the fields along the highway started greening up and coming home I discovered springtime had already started with the tulip trees and daffodils blooming.  Even the forsythia was in high gear!

I’m so ready for spring and flowers!

The January Funk

Last weekend I tossed a few things in a suitcase and drove the 93 mile trek to spend the weekend with my sister.

I could feel a January Funk coming on and wanted to shake it off.   My choices were to just give in and let it happen or DO SOMETHING before I morph into the Funk.  We went to the movies, and watched a few more at home.  I caught up on some sleep.  We went to church and drove around town a bit, ate in and ate out.  I came back home on Sunday to do laundry and get ready for a busy work week.  All in all, it was a very relaxing weekend.

Somehow, the Funk came anyway.

When I’m not feeling well mentally or physically, it’s hard to determine  whether my problems are  Lupus-related or something else.  Maybe it’s my medicine causing goofy side effects.  Or not.   I’ve had a cold for the past 2 weeks and my immune system is not strong.  I also have central nervous system involvement with Lupus that sometimes messes with cognitive skills … like feeling totally clueless at times, having trouble concentrating, depression, aphasia, etc.  Most people have these issues from time to time too, so I never know if it’s me or Lupus.

January is cold and dreary.  Heating bills are extra extra high in January.  Spring seems a lifetime away in January.  I’m homesick for my son in January.  Plus, my hair is growing back and looks like I dropped acid and decided to cut it.  My parents had birthdays in January and I miss them even more during that time.  To top things off, the immunoglobulin infusion that was supposed to start in November is still in limbo with the insurance company and my doctor trying to reverse the denial.  I really don’t want to go through a plasma exchange (which IS covered by insurance), but that would be the next step.  I’ve had that whole scenario in the back of my mind for months and feel like a ticking time bomb, waiting for my crazed and confused immune system to go into another lupus flare-up.

Time will pass and things will get better … it usually does.  But for now, today, I feel the Funk.

I’m Not The Cruise Director

No doubt they're having a good time. Thank god I'm not in charge.

Most every family has one …  the coordinator of holidays, birthdays and special occasions.  The email facilitator of information, the menu planner, the go-to person.   Yep, that would be me.  And I’m resigning my post.

When my parents were alive, family celebrations for my brothers, sister, myself and our assorted spouses, children, extended family and friends was always at their home.  Mom did most all the cooking because she loved to cook.  The food was wonderful and my parents were happiest when they were in the company of their children, grandchildren, and great grandchildren.  Every birthday was celebrated, every anniversary remembered, and most holidays meant we would be together.  Were all family gatherings fun for me to attend?  Of course not.  But for better or worse, we were together and that counted for something in my book.

Due to circumstances that I didn’t really give much thought to, I wound up being the family cruise director after my parents died.  Mind you, I like entertaining family and friends.  I enjoyed tapping into my “inner Martha” and decorating the house for gatherings.  I used to host a July 4th BBQ that included a watermelon seed-spitting contest, replete with prizes for the winner and a bag of watermelon candy for the loser because “they sucked.”  Unlike my mom, most meals ended up being a pot luck situation.  It was fun to put up a big Christmas tree and decorate eggs for the Easter hunt.  There were birthday parties with special menus and special cakes.  There were gifts galore.  There were phone calls and lists and much time spent coordinating schedules.

But I’m not doing that any more.  I kinda like being the invited guest these days.  Sure, I still love to entertain, but prefer the small-scale variety.  The last couple years have involved a break in tradition for me and trust me when I tell you I had no problem with that.  Last year, I went out of town to spend Thanksgiving with my daughter-in-law’s family.  This Thanksgiving I’m going with my son and daughter-in-law to his step-mother’s sister’s house.  Go figure!  Lord knows where I’ll be next year.  But it’s all good.  I love the freedom of not being in charge.  I love the variety.  And I’m not at that point in my life where I need to experience the same holiday rituals from year to year.

Besides, as I told my girlfriend the other day, It’s “not my time” any more.  It’s good to let go of the reigns and enjoy someone else taking the lead.  I think when you have a young family, or a big house, or want to play hostess, then that’s the time to be the family cruise director.  I’ve had my turn.  And retirement looks pretty good to me at the moment.  So if I change my mind about all of this, please someone remind me that I don’t need to bake the special cake that only my father liked.  I don’t need to fiddle with centerpieces, or lists, or RSVP’s.  I don’t have to make enough fudge to put folks into a diabetic coma.  It’s not necessary to wash dishes for 18-24 people after a big dinner.

Holidays and celebrations with family and friends is still important to me.  And like my parents, I’m most happy when I’m with the people I love.  So sign me up for a desert or wine … whatever works best for you!

Through The Eyes of My Father

His eyes were light blue, filled with confidence and intelligence.  It was impossible to look at those eyes and lie to him because he could see right through you to the truth.  He would often hold you with his gaze and speak to you in a way that made you feel like the only person in the room.   My father was one of those people who even in life, seemed larger than life.  He had a quiet confidence that was never confused with arrogance.  Standing tall at six feet, he walked with his shoulders back and his chin up.

My father taught by example how to look the world with an open heart.  He encouraged us to learn, to travel, to read and be faithful.  He was without fear.  He was without pretense or vanity.  He would be the first to tell you he wasn’t perfect.  Yet, he was committed to his family and my sister, brothers and mother knew we were the center of his life.  He loved us well.

My father died years before my big lupus flare-ups began.  In some ways, I’m thankful he didn’t have to witness my health problems.  I’ve known many parents who had no choice but to watch their children struggle with critical illness and death.  I can’t imagine their pain.

My father lived for 19 days after he had a stroke in the spring of 1998.  He was awake and alert for several hours before the bleeding in his brain rendered him unconscious.  There was no fear in his eyes when the ambulance came to the house.  There was no fear in his eyes when my son and I arrived at the hospital.  My father accepted what was happening with a grain of salt.  His eyes could not lie.  He looked at us with love, knowing his fate, yet reassuring us that he would be just fine.  He smiled with us until he was too tired to stay awake.  Through the eyes of my father, I learned how to die with grace.

When I see the world through the eyes of my father, I know I will be strong.

When I see the world through the eyes of my father, I embrace life without fear.

When I see the world through the eyes of my father, lupus cannot claim my heart or soul.