Innocence.

Today has been a rough day, and I come off of the heels of a rough weekend, and a rough several weeks.  Earlier today, while riding in the car, I stared blankly out of the window – deep in thought.  As my eyes drifted back into focus I caught glimpse of a little girl staring back at me out of the window of a school bus.  She stuck out her tongue and made a ridiculous face at me.  I just stared back blankly.

I often envy others who seem free from cares.  Typically this is in the context of studying for medical school.  I will gaze out of the window of a coffee shop and see a group of college students trekking down the street just having a blast, not a care in the world.  I am embarrassed to admit it, but when I am really in the thick of things at school I want to wring their necks.  I envy their freedom to do what they want and their lack of responsibility.  Of course I chose my path, and I realize how irrational these thoughts are, but it is amazing what 12 hours of straight coffee and studying will do to even the sanest person (not that I am sane).

Today this little girl made me feel something entirely different.  She made me wish for my innocence again.  She made me want to forget how terribly hard life can be.  I don’t blame children for their innocence.  Rather I want to bottle it up and take a drink when I really feel overwhelmed.  I just wish for the days when I didn’t know how difficult things really are. 

My mom has taken another turn for the worse.  I have watched as the system has continuously failed my family as we try to navigate the ins and outs of her care.  She is a unique patient, I get it, but she is a person nonetheless.  She has a story, a pathway, a tragic plunge into the darkness that has now overtaken her.  She is scared and tired and alone in her mind.  I am left to be her storyteller to anyone who will listen to me. 

The problems I am facing lie with communication, or lack thereof.  Isn’t that always the case?  I feel alone trying to help her survive what seems to be an endless battle with medications, and nurses, and EMTs, and social workers, and probably worst of all, doctors.  It is like the game of telephone that you play when you are young.  The more she is shipped around.   The more people who get involved in her care (more accurately, lack of care) the more the story changes.  In this litigious society we live in, no one wants to take the blame when I catch their mistakes and oversight, and certainly no one wants to seem neglectful.  No one wants to seem too busy to take the time to get to know her, to get to know me.  But very few people have. 

In med school we are taught from physician lecturers to care for the caregiver, to take the burden off of them whenever possible.  Let them know it isn’t their fault, that they shouldn’t feel guilty or sad, and that they aren’t alone. 

Only once in the last several years, yesterday in the ER, did I feel complete support from someone in the healthcare field.  An EMT held me in her arms and just told me how very sorry she was and how hard this all must be.  And I wept.  I wept for the realization from a medical professional that this is just not fair.  I wept to know that SOMEONE noticed just how hard this is and just how scared my mother and I are.  I wept because that sort of embrace should be the norm, not the exception.

I am on a plane right now to California.  I reluctantly left with my mom still in limbo with her care moving forward.  I need this time away to think and reflect.  There is one thing I do know, with loss of innocence comes a gain of perspective, and for me a burning desire to make things right.  My mother’s story will be told and she will be comfortable, safe, and respected if it is the very last thing I do. 

I draw strength.

I draw strength from my mother's smile and the twinkle in her eyes.  As of late, it is not uncommon for both to be absent, but occasionally I catch a glimpse and when I do, I try to capture it on photo.  Today I celebrate the beauty of my mother's smile and the way in which it keeps me going when things seem too hard to handle.  Here are a few photos from the past couple of months:

I think I bored her with all of my photo taking!

Playing it cool.

Sharing kisses.

This photo is particularly meaningful.  My mom hasn't cried with me in months.  She hasn't really registered who I am much lately.  But last Friday, she knew who I was.  She looked me in the eyes, and we both cried together.  She told me she loved me to the sky and back.  

In dreams.

As of late I have had vivid dreams about mom.  It is weird to dream about someone who is still living but to feel as though they are visiting you from another place.  In my dream last night she was starting to lose her memory.  Unlike the real life scenario, in this dream she told me she was scared.

She has always been so proud, so strong, and so put together.  Save for a few moments of vulnerability throughout the years, she has never admitted fear to me.  I could see it so clearly on her face when I would visit her, but she never said it.  

Last night, in my dream, she did.  And in response to her fear, I looked her in the eye and told her that we should just dance through it.  And we did.  We danced through the aisles of the large convention hall we were standing in (it was a dream... who knows why we were in a convention hall).  People stared but we were laughing so hard we didn't even see them.

Mom is gone now.  Her body is still there, but the soul that inhabited it has dissipated away.  In person I try to calm her fears, to tell her it will be ok.  When she cries softly "Please help me..." I wish that I could grab her hands and just dance her around her room.  I hope that it is in fact her soul that I am speaking with in my dreams.  Or maybe our dreams are melding into one so that she knows what I am saying when I say it to her.  Because I want to believe that I can calm her fears.  I want to believe that at night, when I lay down to sleep, I am meeting my mom to dance.   

Bedtime for Bonzo.

Tonight as I closed my books and shut off my desk lamp I said aloud to myself "It's bedtime for Bonzo!"  Immediately my mind shot back to bedtime rituals of old.  This was my mom's affectionate way of telling me it was time for bed when I was young.  I am sure it was met with a series of moans and groans from me, but truly, being tucked in was one of my favorite pastimes with mom.

• Sometimes it was a bedtime story.  Usually a Canadian classic such as "Make way for ducklings" or "Love you forever" (which is incredibly pertinent for me now - read it).  
• Then it was a lullaby.  My favorite was "Here comes the sandman," though she had several.  
• Then came my favorite - the multiple mini-kisses on my face.  Each day we would add another kiss until we would forget how many we had gotten to (I think one time we made it all the way to 2 months), and we would start all over again.  They were tiny little kisses that tickled and made me laugh.  
• Finally it was time to be rolled up in my blanket.  She would shove her hands on either sides of my blankets until I was wrapped in a blanket cocoon.  While she did this she would say, "snug as a bug in a rug!"  
• As she left my bedroom she would switch off my light and turn on the multicolored Christmas lights around my door.  My nightlight.  

I feel all of these sensations as if they were yesterday.  I miss being tucked in by mom.  I wonder sometimes if I miss it more because I know she won't ever do it again.

Now I tuck her in.  I brush her hair aside and give her mini kisses all over her forehead.  She giggles.  I sing her lullabies and tell her I love her to the sky and back.  

I guess that this is the normal progression of growing older.  Roles change, we adapt and find new ways to gain fulfillment.  I just think sometimes, on nights like tonight, I long to be tucked in like the old days.

cuddle bunny.

Sometimes all you want is to cuddle up next to your favorite person to take a nice long nap.  Today mom and I did just that.  We turned on Parent Trap (Lindsay Lohan pre-party years) and slept.

I remember people telling me when I was young to enjoy the fun I was having.  The free afternoons, the planned recesses during the day, the fact that I could eat 20 Reese's PB cups without immediately seeing it manifest on my thighs.  These are things I didn't understand until now.  Now I live in a constant state of "go-mode."  Now my worries seem large and my recesses seem few and far between.  This morning with my mom brought me back to old times.

I appreciate them more now.

The baby doll.

For the purpose of my post, her name will be Erma... I don't want to give away identity, med school has taught me this much.  Next to her at the dinner table was a ratty baby doll, worse for the wear and missing an arm.  On the doll's soft white pillow of a body were stains, no doubt remnants left by the many who have held and rocked her to sleep.  Today she was Erma's baby.  As Erma struggled to get up from the table the nurse's aide (frustrated at Erma's 3rd or 4th attempt to leave the table early) shouted from across the table "Erma, you can't get up!  Your baby is still at the table!  You don't want to forget her, she will be so sad."  Erma immediately realized what had happened.  She sat back down, and with the help of the aide she grabbed the doll and began rocking her.

Erma: "I am so sorry my baby girl, I didn't mean to leave you behind."

Erma rocked the baby and spoke softly to her.  She kissed her on the head and told her she loved her very much.  She spoke as a mother would in soft tones with love in her eyes.  When dessert came out Erma tried desperately to share her cookie with the baby, giving the first bite to her as any mother would.  If you have ever visited a nursing home you know that dessert is the best part of the meal for most residents.  The sweet taste buds are some of the last to go as you age and so most never lose their sweet tooth.  That being said, it was quite incredible that she offered her treat up with such selflessness.  She tried over and over to coax the baby doll to eat her cookie.  She finally said with a twinkle in her eye and a laugh that would make anyone smile: "Well if she isn't going to eat it, I am sure not going to let it go to waste!"

It is amazing as we age the faculties that go and the faculties that stay.  We lose eyesight, hearing, taste, touch, many of our senses.  Sometimes we lose our grip on reality.  But my encounters have taught me that the elderly, even at the latest stages of dementia, still maintain fundamental emotions and feelings.  Love, fear, joy, anxiety.  For Erma it manifested with the most intimate of interactions with her baby.  An interaction that could have mirrored a new mother sitting on a park bench cooing at her baby girl.

It's just stuff.

My hard drive crashed this week at a very inopportune time.  Not that there is ever a good time for your hard drive to crash, but this felt like especially poor timing. I was heading out of town to visit family and I had two deadlines for research I have been working on.  The morning it happened I had already woken an hour late and proceeded to spend 2 hours on the phone with Apple Care specialists who told me that there was nothing more they could do without seeing my computer in person (in St. Louis).  I was then 3 hours late and racing to pack and get my dog to the boarding facility in time to drive the 30 minutes to pick mom up from Columbia only to drive her BACK to Jefferson City for her dental appointment.  A dental appointment that we had been waiting months for.

The day before I had given the assisted living facility careful instructions on my mom's appointment.

1.) Please make sure she is dressed and ready to go (mentally ready being the most important)
2.) Please have a list of her medications ready for me to bring
3.) Please have her midday medications prepared so she can take them with lunch when we eat

I was late and anxious and frustrated with every slow driver on the road.  When I walked through the doors to get my mom she stood up excitedly "You're here!!" she said.  She is always so very excited to see me when I come to visit.  I didn't hear her excitement or see the happiness on her face.  Instead I saw her inside-out pants and 4 layers of shirts.  I saw that no one had prepared her for her visit to the doctor.  I quickly grabbed her and hustled her to the bedroom.  We changed in record time (much to her chagrin and confusion), and we were off.  I stopped by the nurses station on my way out.  They hadn't prepared anything for her, no meds list, no medication, they didn't even know she was leaving.  I was frustrated and late, and hot, and tempermental, and everyone could sense it.  I hastily gave them the fax number for the doctor and requested they PLEASE send the med list ahead of me so that I didn't get scolded when I arrived in Jeff City.

We hopped in the car and zoomed out of the drive and onto the highway to get to mom's appointment.  Mom knew I was stressed.  She was silent for the first few minutes and I immediately felt guilty that I hadn't greeted her with more excitement.  I told her how happy I was to see her and how pretty she looked... but I didn't know what else to say.  I needed to concentrate on driving.  I switched on the oldies station and prayed for a song that would make the drive less intense.  My prayers were answered...



As the song started I began to immediately feel less stressed.  I looked over at mom and literally cracked up laughing.  She was head-bobbing and rocking out to this song as if it were a live performance and she was in the front row.  I listened to the lyrics (between my sweet dance-driving moves) and the stresses and anxiety of the day were gone:

"I just want to celebrate another day of livin', I just want to celebrate another day of life"

• We were late for the appointment... who cares, people can wait
• Her med list wasn't there when we arrived... who cares, it just took a phone call
• The doctor made no logical conclusions and pushed us off to another visit... who cares, we had fun riding together
• My hard drive was lost... who cares, it's just stuff (ok... maybe I am still struggling with this one)

Regardless of the crazy events of the day, I was with my very best friend.  She was just happy to celebrate another day of living and why shouldn't I feel the same way?  We decided to celebrate the day with Ryan's buffet (mom's favorite).  A full meal of whatever her heart desired, followed by a dessert sampler plate, hand-picked by me for mom's eating pleasure.  As she took a big bite of coconut cream pie, we caught each others eye.  This time I took a moment to appreciate the excitement she expressed at being with me.  This time I celebrated it.  

The dance.

My mom used to laminate everything. I mean EVERYTHING. Any time any of my friends or classmates were in the newspaper she would cut it out, put on a nice thick backing, and laminate the heck out of the article. It was always slightly embarrassing to approach kids at school with the article all shiny and perfectly cut out. I thought for sure I was going to pass out from embarrassment when I handed it to them.

Mom would also cut out poems and quotes that resonated with her. She often would copy (and of course laminate) them for me. They would collect dust somewhere in a drawer because, while I never really appreciated them fully, I felt terrible just tossing them in the trash. After all, she did feel as though the words were important to hear.

One poem shot into my mind today while I was visiting mom at the assisted living facility where she lives. "Slow dance" was a poem she gave me as I was heading off to college. It was beautifully laminated and typed in a cursive script on the best possible paper. I read through it and realized this was more than a poem, it was a plea from her to me. Honestly, it didn't fully resonate then.

Today while visiting mom we stopped for an ice cream break with the rest of the residents. The nurse turned on some music and mom and I decided to slow dance with one another like we used to do so many times in our kitchen when I was growing up. The song "I'll be seeing you" by Billie Holliday came on and we were off.

While driving home today I suddenly remembered the poem mom laminated for me almost 10 years ago. It finally made sense to me in a way it didn't then.

SLOW DANCE

Have you ever watched kids

on a merry-go-round?

Or listened to the rain

slapping on the ground?

Ever followed a butterfly's erratic flight?

Or gazed at the sun into the fading night?

You better slow down

Don't dance so fast

Time is short

The music won't last

Do you run through each day

On the fly

When you ask "How are you?"

Do you hear the reply?

When the day is done,

do you lie in your bed

With the next hundred chores

running through your head?

You'd better slow down

Don't dance so fast

Time is short

The music won't last

Ever told your child,

We'll do it tomorrow?

And in your haste,

not seen his sorrow?

Ever lost touch,

Let a good friendship die

'Cause you never had time

To call and say "Hi"?

You'd better slow down

Don't dance so fast

When you run so fast to get somewhere

You miss half the fun of getting there.

When you worry and hurry through your day,

It is like an unopened gift...Thrown away...

Life is not a race

Do take it slower

Hear the music

Before the song is over.

I promise to slow down, mama. Especially if it means that I will get to enjoy more time each day dancing with you.

Joshua Tree National Park

Ted and I took a trip up to Joshua Tree Park. It was a wonderful bonding experience and the views were more beautiful than I can describe. Instead of carrying on about the trip, I decided to upload photos... they can do the talking.

The view on the way in

There were THOUSANDS of windmills... alternative energy... what a beautiful thing.

Following in Teddy's footsteps

Blooming cactus.

My favorite photo of the trip

Joshua Tree is known for the great places for climbing. This is one of them.

At the top of the mountain looking down.

Fun rocks! Looked like a gnome to me...

Ted and Josh.

Josh and I.

More giant rocks.

The baby flower growing out of the sand...

Ted and I climbed this mountain, it was a fun and exhausting trip up. Totally worth it.

Nature's perfect picture frame!

Ted and I's favorite plant in the desert - called a paper bag bush.

The San Andreas fault.

My attempts at a self-photo.

Serious concentration.

A pretty sunbeam!

Thanks for sharing your beauty Joshua Tree. It was a pleasure.