Category Archives: Love

A Christmas Wish

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A wish for you, dear Readers, for this Christmas and New Year.  Borrowed from John Denver with thanks and hope for a wonderful holiday … from my heart to yours.

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The season is upon us now                                                

A time for gifts and giving.

And as the year draws to its close

I think about my living.

The Christmas time when I was young.

The magic and the wonder.

The colors dull and candles dim

And dark my standing under.

Oh little Angel shining Light

You’ve set my soul to dreaming.

You’ve given back my joy in life

And filled me with true meaning.

A Savior King was born that day.

A baby just like you were.

And as the Magi came with gifts

I come with my gift too.

That peace on earth fills up your time

And brotherhood surrounds you.

That you may know the warmth of love

And wrap it all around you.

It’s just a wish, a dream I’m told

From days when I was young.

Merry Christmas to all of you.

Merry Christmas, everyone.

Autumn Blessings

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Despite all the crazy and sometimes crappy things that happen, I am able to count my blessings.  The month of November is a perfect time to appreciate all things great and small.

So in no particular order, I’m thankful for  …

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crisp, clear blue skies and bright autumn colors

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cuddle breaks after raking the yard

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a "spooky" Buzz Lightyear

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wine making grapes

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apples for pie

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Queen Anne's Lace

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watching a waterfall

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long naps

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gentle rain on the roof

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fresh veggies from the garden

What are you thankful for?

Safe Harbour

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safeharborWhen you live with an autoimmune disease like lupus, your overall health and well-being is usually in an ongoing state of flux.  I don’t expect to feel crummy when I wake up in the morning.  I never take for granted the days without complications or reminders of my limitations.   Some days, however, I wish there was a safe harbor where I could go for rest, comfort, love and reassurance.  Life with lupus is often an unpredictable crap shoot.  And the long-term odds are never on the side of the  patient.

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A good day for me is when the medicine is working, pain is manageable, the weather cooperates and the mind is untroubled.   Most of the time I am optimistic.  Most of the time I am fully engaged in the here-and-now.  Most of the time I can laugh about almost anything, especially myself.  I feel creative, energetic and productive.  When I can reach out to help someone in need, I am acutely aware of the blessing and grace that enables me to give.

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There are other days when I feel vulnerable and exposed.  Today is one of those days.  I hate the way that makes me feel.  I resent feeling weak.  I walking with a limp.  Anemia gives me a pasty complexion.  The cutaneous vasculitis lesions continue a slow, persistent march across my torso and extremities, despite all the drugs and all the infusions.  I have bruises in unexpected places, courtesy of steroids.  Chemotherapy and steroids have taken their toil on my appearance.  Sometimes I feel as dumb as a box of rocks …  “lupus fog”  caused by small vessel vasculitis or middle age or heaven only knows what else.  I see all too clearly the downward slide of  my baseline health and it scares me.

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I often wish for a safe harbor; a loving partner who would comfort and reassure me during storms caused by lupus.  I hear stories about how spouses pair up for doctor appointments or keep watch at the bedside of their loved one in hospitals.    Someone who keeps their promise in good times and bad.   A partner who is willing to  clean and shop when the other one is too sick to handle it alone.   What does it feel like to be loved for who you are, with or without a chronic disease?  Will I survive without this type of love?  Of course.  Would it really make a difference when lupus has the upper hand?  I wish I knew.

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There are other types of safe harbors in my life … my home is often a refuge.  I love to read and can easily get lost in a good story.  When I’m buzzed on steroids, I often set about cleaning out dressers and drawers.  I don’t take my friends for granted and truly enjoy the safe harbor of their company.  For years, I have spent quiet weekends at home, and don’t think about the fact that I’m alone.  But on bad lupus days when it’s painful to walk and getting out of bed is a big ordeal, I wish my life was different.  I wish it wasn’t so hard to reach out to people instead of opting for self-imposed isolation.  I don’t want to expose my insecurity.  This is my pattern when lupus has the upper hand.  Maybe there is no such thing as a safe harbor when I feel like crap.

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I have insecurities and fears, just like everybody else.  I am also a strong, intelligent, independent woman who appreciates the blessings in my life.  I’ve been divorced, unemployed, raised a child on my own and started my life over more than once.   And I have faith to keep trying.

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I have lupus.  And some days are not easy.

The Little Big Things

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As a good friend told me this evening, I manage tough situations by “visiting” them from time to time; I don’t stick around for long stretches of despair.  I never thought of it that way, but she’s right.  I don’t like to wallow.

Life’s been a little harder than usual lately.  My heart is tethered to people I love but can’t seem to help.  I’m frustrated about personal situations  I cannot seem to change.  And of course there’s health-related challenges.  Lupus crap is always just below the surface of everything, waiting to get worse.

But today I’m giving thanks for the little things in life.

Sometimes the little big things are enough to keep me going.

Such as …….

A perfect day at the beach

A perfect day at the beach

*   Fresh 600-count sheets on my bed.

*   New socks.

*   YouTube crazy cat videos.

*   Silly phone messages from my son.

*   Tickets to see James Taylor next month.

*   Taking stuff to the recycling center.

*   Reading a great book.

*   Somebody else cooking dinner.

*   A new shower head that feels like a spa experience.

*   Putting all the groceries away, the laundry folded, and a clean house.

*   Getting a hug from a favorite three-year-old, who just said “I love you.”

*   A new bar of shea butter soap.

*   Eight hours of sleep.

spring poppies

spring poppies

What are the little big things in your life?

Prayers for Sarah Jane

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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

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

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

Napping with big brother Matt

Best of all, Sarah got her smile back!

Sarah with her mom, Sandy

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

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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

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!pict0038

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  cafe-exterior3for 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!

I’m Not The Cruise Director

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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!