Tag Archives: Love

Autumn Blessings

Standard

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  …

**

100_0071

crisp, clear blue skies and bright autumn colors

**

100_0119

cuddle breaks after raking the yard

100b0140-1

a "spooky" Buzz Lightyear

IMG_0452

wine making grapes

**

IMG_0451

apples for pie

**

IMG_0475

Queen Anne's Lace

**

PICT0012

watching a waterfall

!015Napping-with-Big-Brothe

long naps

**

IMG_0427

gentle rain on the roof

**

IMG_0171

fresh veggies from the garden

What are you thankful for?

Advertisements

The Little Big Things

Standard

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

Standard

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.

A “B” Meme

Standard
letter_b21102902_std

B is for .....

Joan is one of my favorite people in the entire blogosphere.  Sweet, honest, and a good sport about all things meme, she tagged me  (probably because I jumped up and down and waved my arms and shouted “Pick me! I want a letter!)  So here are the rules if you want to play along.

You leave a comment on this post and I’ll assign you a letter.  You write about ten things you love that begin with your assigned letter, and post it at your place.  When people comment on your list, you give them a letter, and the chain continues on and on.


You can leave a comment and not be assigned a letter if you want.   Just let me know if you want a letter to keep this going.

Joan assigned me the letter B.

At the tender age of 8 or 9, I became a Beatlemaniac. I still am.  They were (and still are) the best band ever in the history of the universe.  Am I going a little bit off the deep end with this declaration?  I don’t care. Their songs are timeless, and their talent for writing music and lyrics has never been duplicated.

beatlesuse-7990962

Paul is cute. George is cool. Ringo is funny. John is my favorite.

#1 B = The Beatles.

#2 B= Beads. Specifically, beads to make jewelry with.  I’m not a pro at it, but thoroughly enjoy making bracelets and earrings.  Lately, it’s been a challenge doing this because of my 2 cats.  They think the jewelry stuff is their personal toy … like everything else in the house.  How dare I disrupt them chewing on wires and batting around expensive crystal beads!

#3 B= Babies. Need I say more? When I retire I want to volunteer rocking babies in the hospital nursery.  It doesn’t get any better.

A girl's best friend

a girl's best friend

#4 B= Bling. Diamonds are my birthstone.  The more I have, the better I feel. It’s a wardrobe essential, even if they’re on loan from Harry Winston for the red carpet event.

#5 B= Bitch. It’s a noun, a verb and an adjective.  How versatile!  You can say it as a 2-syllable word, as in “Bi-atch”

#6= Butterfly. No, I’m not getting all sentimental and girlie girl here.  For those of us with systemic lupus, the butterfly symbolizes the fight against lupus and hope for a cure.

#7= Broadway. As in New York’s theater district.  It’s always a thrill for me to go there.  Great upbeat energy and entertainment.

#8= Bacon. Bacon pizza.  Bacon and eggs.  BLT sandwiches. Bringing home the bacon.  Yum 🙂

#9= Best Friend. You know who you are.  😉

#10= Bed. I love my bed.  It’s soft and cozy, with lots of pillows and soft sheets.  It’s the perfect place to relax and read.  Charlie and Tig also love my bed.  Actually, they think it’s THEIR bed and they’re allowing me to use it.


Through The Eyes of My Father

Standard

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.

There’s More Room in a Broken Heart

Standard

When I was 13 I experienced my first crush.  He was 16, had a girlfriend and drove a sports car.  He considered me a pseudo kid sister-sidekick.  Crush Guy was out of my league but hey, I had my standards and wasn’t inspired by the gawky guys my age.  He broke my heart but I settled for being his friend.

In college I met my first serious boyfriend.  He was a musician and, uh, sorta unavailable as he was in the seminary studying to be a priest. I apparently changed his mind about the priesthood and the years we were together were good.  Very good.   But eventually First Serious Boyfriend decided to return to the seminary.  I was heartbroken.  Eventually I made peace with myself about all of that.  I was young and had room in my heart for love.

Fast forward past Nice Guys I Dated But Are Not In In This Story, to when I met The Husband at a recording studio.  I was the voice talent and he was the guy who wrote music for commercials.  We dated five years and were married for eight.  We also had a son that turned out pretty nice, thankyouverymuch.  Matthew grew up infused with his father’s good looks and his mother’s sweet disposition.  Anyway, for many reasons I don’t care to write about, The Husband and I divorced.  Yet after all these years, The Now-Ex Husband and his new family remain an integral part of my family, and my heart.

After the divorce I took a two-year sabbatical from romance.  I changed jobs and had to travel a lot so between raising a child, working my way up the corporate ladder and mending a broken heart, I just wasn’t looking.  Then Thaw Out Guy came along.  This kind, romantic, handsome, intelligent and fun-loving guy managed to defrost my frozen heart during a short-lived fling.  Did I mention he was my former boss?  oops.  He was transferred out of state and since I was thawed out, it was time to move on.

There were years when I dated and years when I did not.  Most of the time, I was mother, manager and musician.  Then I found out I had lupus.  My heart was broken but for different reasons.

When I was diagnosed with systemic lupus in 1992, I felt like damaged goods.  Why would anybody be interested in loving me now that I’m chronically sick?  I didn’t resemble my former self.  Steroids made me gain weight.  My face was swollen.  My hair was falling out.  I had cankles.  I didn’t think there was a man on this planet that could see past my appearance and truly love the person trapped inside this body.

I’ve dated several men since the diagnosis.  I had a misguided experience with one that was so painful I still can’t talk about it.  There’s one person that I see on a semi-regular basis and that’s nice.   Lately, I’ve been more focused on my health than my heart and that’s probably for the best.  I used to think there was time and opportunity out there for the kind of love I hoped to find.  Having lupus changed my expectations about that.  The losses I’ve experienced have put me on guard.  So I do the best I can.  My heart has space for the short list of trusted family and friends.  I don’t know if there’s any more room in a heart that’s been broken as much as mine.  Time will tell.

10 Things I Can’t Live Without

Standard

This is not a Top Ten list. I love them all the same. Jeepers, that sounds like my mother talking. Or Oprah, or David Letterman … but these are not favorites so maybe I’m in the clear.

1. SPENDING THE DAY AT THE SHORE. Don’t really care about exactly where the water is.

2. MANICURES & PEDICURES. Helps to keep me feeling fairly normal in a crazy world.

3. ACTION MOVIES ON THE BIG SCREEN. There’s also the cheap thrill of smuggling your own snacks to the theater.

4. PINO GRIGIO. Need I say more?

5. PARADES. Bring your own chair because the one in the car trunk is mine!

6. A GOOD BOOK. And why are readers always described as voracious? It sounds like an eating frenzy. Hey … I might be on to something.

7. DARK CHOCOLATE. 75% cacao or higher, please.

8. PLAYING THE MUSIC I LIKE *REALLY LOUD* ON A GOOD STEREO. Live with it because I’m not turning it down any time soon.

9. SINGING TO THE MUSIC I LIKE. I’m an alto and can find the harmony just about anywhere. Plus I can sing, which really helps.

10. SPENDING TIME WITH PEOPLE I LOVE. A short list, mind you. They know who they are.

11. OUTRAGEOUSLY GREAT SEX. Alright, this makes Number 11 on the list, but it was way too important to leave off. Think of it as an addendum. Or an appendage. Or both.

12. ROAD TRIPS IN THE CAR. No preference on where the car is headed, as long as I can sit in the front seat or drive. You don’t want me to get carsick.

13. CUDDLE TIME WITH A NICE KITTY. Like with the kitty on the left named Bug.