Doernbecher and Gratitude

Doernbecher Children’s Hospital is a place for gratitude. 

Let’s be clear.  My stay there 2½ weeks ago was no walk in the park…

·        Major back surgery for my daughter

·        Sleepless nights for me (in a body that is still in cancer recovery)

·        Watching my Lizzie suffer almost constantly with pain and discomfort

·        Trying my best to appropriately help a 16-year-old who truly didn’t want to have to be helped

·        Watching my daughter’s breathing rate drop to 5 times a minute

·        Emotional, physical, mental and spiritual utter exhaustion

·        Almost passing out in the recovery room (don’t laugh – I’m a confirmed medical wimp!)

But I found that Doernbecher is a place for gratitude. A strange place for something like gratitude, really, with so much suffering that is sometimes palpable within its walls.  The suffering you see just by walking through the halls is so deep, so diverse and so intense.

·        A mommy holding a infant’s hand as he is rolled down the hall on a tiny hospital bed

·        A single mom completely alone in the surgery waiting room with a high tech empty wheel chair sitting beside her

·        Signs for “school” that remind you that some kids are here for a very long time

·        A toddler screaming in pain in the middle of the night

·        Pediatric cancer wards

And then there was the serendipitous (read: God ordained) timing of being at Doernbecher at the same time as my dear friends the Phelps.  The Phelps family and I have a long and (at least from my perspective J) happy history.  I met my husband while employed at their bookstore in Medford over 20 years ago (and that, my friends is still happy!).  They are a dear, faith-filled family… now 3 generations of blessing to the Rogue Valley. 

Brian’s 17 year old daughter was admitted about a week before Lizzie.  When Devynne went into surgery (her 4^th open heart surgery in her short lifetime), things quickly became very scary for the Phelps family.  And stayed that way.

·        An expected 5-10 hours of surgery turns into 2 surgeries lasting 18 hours

·        Difficulty controlling bleeding

·        She goes into cardiac arrest several times on the operating room table

·        Unexpectedly needs dialysis

·        Back into surgery the next day to control bleeding

·        Problems with the dialysis machine

·        Her lungs struggling to get her oxygen

·        Concerns about long-term brain damage

·        A doctor telling the family that it was the scariest thing he had been through (OH. MY.)

And THIS is just the tip of the iceberg of their first TWO DAYS!!  They are still at Doernbecher.  She remained unconscious for over a week.  Devynne just got out of ICU a few days ago… after multiple terrifying, gut-wrenching ups and downs.  Now the family is figuring out how to do dialysis at home.  Possibly long term. 

I cannot even imagine.

It seems like gratitude is all about perspective.  Right?  MY daughter is just fine, thank you.  They did a big back surgery.  Things turned out well. Doctors are happy.  We are fine.

Here’s the miracle:  Brian and his family are grateful.  (WHAT?!?!)  But they are.  And with good reason.  Dev is alive. She is recovering.  She is back with them.  They have deliberately chosen to be thankful. The whole way through this ordeal.  A most certain beacon of light and truth for all of us.  (Prayers for them are still deeply appreciated.)

There is always someone in this life who has it better than me in some way.  There is always someone who has it worse.  There is always – and I mean ALWAYS – something to be genuinely grateful for.

This has kept me sane this last season of my life. I would like to be able to say that my generally positive attitude and profound gratitude through cancer and the other pain we’ve been dealt this year has been a result of my deep spiritual life. Hmmm… It has actually been survival.  I’m a pragmatist.

Gratitude works.

And the older I get, the more clear it is to me that God’s loving instructions to us are very deeply just that – loving.  Because He knows how we function at our optimum.  “In everything give thanks” is not a sadistic command from a god with a twisted sense of humor.  No, gratitude works.  It aligns my often distorted, self-absorbed reality with the True Reality – one where there is a God of love who constantly works His ends toward the most beautiful outcomes for my life, His far-reaching renown and an eternal weight of glory. It keeps everything in perspective.

Indeed, Doernbecher Children’s Hospital (and every other pain-filled location) is a place for gratitude.

“Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity…. It turns problems into gifts, failures into success, the unexpected into perfect timing, and mistakes into important events. Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow.”

— Melodie Beattie

A Little Inconvenience

Well.  This has been the longest break from blogging that I have taken since I started back in mid May.  I’ve missed it.  And I’ve missed my readership – all 8 of them.  (jk. lol.   There are actually 11 people that read my blog.  Including my mom and dad.)  So, my apologies to my wide readership.

But trust me.  I’ve been a bit pre-occupied.  A little busy.

A little 5-day trip to Doernbechers Children’s Hospital.  For my 16 year old to have her little back surgery.

Her little 11inch incision.

(In case you were wondering, our family is, indeed, competing this year in the Baker family “Most Gruesome Scar of the Year” contest.  So far, my husband is losing. But my daughter seems to be winning the “How Fast Can I Grow During a 4 Hour Surgery” award.  Yep.  Almost an inch and a half.)

So my last 2 ½ weeks have been a little full.  And a little exhausting.  And a little painful.   And a little disruptive. For our whole family.  (I lie. There has been no “little” about any of these things.  But you knew that.)  Our family’s year has felt like being in a boxing ring and this is (oh please, let it be, dear Lord!) the final round for now.  Seems like the punches feel worse the more fatigued we become.

Here is my standard (and truthful) answer to how Lizzie is doing:  “The surgery was hugely successful.  The doctor is thrilled with the outcomes.  The recovery process is brutal.” 

We are grateful to have it behind us. 

We are grateful for her excellent recovery.

We are grateful.

The Gift of Swollen Tonsils

I have never been so alarmed by seeing swollen tonsils.

Lizzie came into my room Thursday morning with a cheery “look, Mom!” and shined a flashlight in her throat.  Very swollen tonsils.  Several white spots.  Lovely.  She is kid #3 in our family, so this is NOT the first time I’ve seen any number of variations of a sore throat.  And I’ve never really been alarmed.  Until Thursday. 

Here’s why:  she is scheduled for major back surgery at Doernbecher Children’s Hospital this coming Wednesday.

About 15 months ago, Lizzie was told that she would likely need surgery to correct her scoliosis.  Since that time, we have been emotionally and logistically preparing ourselves for this lumbar/thoracic fusion with hardware – a 12-15 inch incision, 5-7 days in the hospital, and 6 weeks of recovery.  In January, our family decided that this summer was the time for this life-disrupting event.  Let’s do this thing.

So Thursday we went to the doctor (found out it is not strep) and her surgeon told us that it is possible that the sore throat could postpone surgery.  Possible. Not for sure, but possible.   If her surgery has to be postponed, we have to wait 30 days before it can be rescheduled. 

To fully appreciate this little story, you may need to know a few things about me.

I plan. 

I plan free time, social events, projects.

I schedule.

I schedule conversations, tasks, meetings, housework, recreation.

I plan vacations.  It is ½ of the fun of vacation.

I plan months (and sometimes years) ahead.

I plan well.

I plan compulsively.

Planning makes me happy.

As I read this description, I wish it were more of an overstatement. “Spontaneous” is something other people do.  And it looks interesting.  And mildly uncomfortable.

It is hard to describe how much a surgery postponement and rescheduling is not, and I do mean NOT, in the “plan”.

I have cancelled 2 weeks of clients.

My husband has planned time off of his work.

Lizzie has no camps, no trips, nothing “summer-ish” planned for the rest of July and August.

We have each completely cleared our schedules.

The last couple months have been spent positioning our life for this surgery and her recovery.

Not. In. The. Plan.

And I am strangely grateful.  (Folks, we are finally getting to the main point of this story.  You may now breathe a sigh of relief.)

Here it is: with all my compulsive planning, I live a lie.  This lie says that I control my life through planning.  This is a comfortable illusion.  The lie says that when I plan and position, I can guarantee that the plan will happen.  This last year of fighting cancer has challenged that lie over and over again.  There are very few ways in which this year has gone as I planned (or wanted). And I am actually learning to unclasp my hands.  Some.  But the possibility of a reschedule has exposed yet more layers of my clenched fist stubbornly hanging on to the mirage of control.

When I put all my weight on my plans, on this illusion of control, it is profoundly dangerous.  It can and will eventually hurt me.  Because it is not based in reality.  When I hold rigidly to my plans, I am violently jerked around when life does not do what I have decreed.

The current challenge for me is to once again acknowledge that there is a God… and I am NOT Him.  In any way.  I have the privilege of submitting to His loving design.  I get the opportunity to put my heart and head in the arena of reality.  This reality reminds me that God alone ultimately determines my life events, their timing and their sequence.  I won’t do it perfectly, but I want to trust a merciful and wise God with the timing of my daughter’s surgery.  Don’t get me wrong.  If we have to reschedule, it is going to be another painful blow in a year that has held been quite brutal. But here’s the thing: even if she does go into surgery on Wednesday as planned, life has given me another chance to flex, to release my agenda and to trust a kind Father with the details of my life.  I have been given a gift of a fork in the road.

And for this I am strangely grateful.

Thank God for swollen tonsils.

Proverbs 16:9 In his heart, a man plans his course, but the LORD determines his steps.

Thoughts on Waking Up (or Cancer is Interesting)

Cancer is interesting. 

I know. That’s kinda sick. 

But as I have watched my own fight with cancer and the beginnings of recovery, sometimes from a fly-on-the-wall perspective, it has truly been quite intriguing. The whole ordeal has been a study.  (Of course I’m sick.  Look at the profession I have chosen – a therapist.  I observe and carefully monitor pain every time I walk into my office.  Really?  Who does this?)

I’m using this blog, at times, to write parts of my story in a public forum that I would normally only discuss with close friends.  Here is why:  I believe that there is a certain universality in suffering.   Intense pain can show an unlimited number of creative faces: the death of a family member, betrayal by a spouse, fighting cancer, losing a limb, financial disaster, chronic illness, war trauma – the list is endless.  But in the end, it seems that there are certain themes in genuine suffering that are universal.  Some results are very visible, some are less so. Therefore, I am choosing to put the inner workings of my story in this blog in the hope that someone might feel less alone on their own journey.  This year and a half, difficult though it has been, has by NO means been the most difficult time of my life.  In fact it probably rates #3 or so.  (THAT, my friends is a story for another time!) J

So here’s the fly-on-the-wall story of the last few weeks of my journey…

This season started about a year and a half ago.  The first 6 months consisted of 2 car wrecks, multiple bouts of sickness, calling 911 on my husband and many other things in a long list of life stressors.   While still very weakened physically and emotionally from that six-month period, I was diagnosed with thyroid cancer.  Two surgeries, treatment in isolation, ugly scarring, thyroid levels not being regulated well – all of these have contributed to a very difficult year and a half. 

During this time, I have unconsciously and reflexively wrapped myself in a cocoon.  I have deeply hibernated.  I have been asleep.  A very, very deep pulling in.  Withdrawal.  I have had to do this to survive.  I have been fighting for my life… both physically and emotionally.  The cocoon has been absolutely essential.  A sheltering protection of which I have been largely unaware.  I have gone through the motions and look like I’m functioning “normally”, but those close to me feel the cocoon, the desperate withdrawal.

As my health has begun to improve, I have slowly begun to peek out of the cocoon.  There is a type of “waking up” that is happening.  But (as in all of my recovery) it is not happening in a straight line. I poke my head out and say, “Wow! I’ve been asleep a long time!!”  Then I reflexively pull back in when I get exhausted or overwhelmed.  BUT!  I AM poking my head out and waking up here and there.  That is happy. 

There are certain areas of my life in which I have NOT been asleep… I have HAD to be (sometimes maddeningly) aware of my physical health.  I have been intensely riveted to my daughter’s life and journey, as this year has been intensely brutal for her.  I have been largely aware of my husband’s world (as I wake up, I realize maybe not as much as I thought, but still quite a bit).  I have been awake for the life movements of my very closest friends.  Probably most significantly, there has been a beautiful clarity and connection with God that I have not had for years… for that, I have been gratefully, blessedly awake. 

The bare essentials.  Stripped to the absolute basics of survival.

Here is what non-cancer life is like for me:  I am given a package by life (an event, a relationship, a change, an idea, etc).  The package can be big or small.  I take the package.  I look at it.  I process it.  I think about it.  I make connections.   I may talk about it. I may write about it. Once I have absorbed most of the meaning from the package, I put it on the shelf marked “Processed”.  

This last year when I have been given a package by life, here’s how it goes:  I take it.  I look at it.  If it does not fit one of the categories above (those for which I have been “awake”) then it IMMEDIATELY (and I mean immediately) goes on a shelf marked “To be Processed at a Later Date”.  And there are a heck of a lot of packages on that shelf right now.

OK.  Back to the cocoon.  As I re-emerge, I am beginning to identify areas in which I have been asleep.  I don’t think this is a complete list, but some of these are my environment (the seasons, my overall physical surroundings), my senses (fully seeing, tasting, hearing, smelling and feeling), life events (ones that would normally hold substantial meaning for me) and second level relationships (ones that are genuinely and deeply important to me).  I don’t like this list.  It makes me sad to write it.

Friday night, I spent a warm and comfortable evening with my husband reading in Barnes and Noble – one or our favorite date spots.  (Don’t laugh.  We are a very exciting couple.  Really.)  As I walked out of Clackamas Town Center the sun was setting beautifully.  There was a cool breeze.  The air smelled like so very much like summer.  It immediately reminded me of the beauty and joy of summer and of summers past.  Within a fraction of a second I teared up.  An involuntary visceral reaction.  It was the beauty of the evening and the memories associated with it.  And right on the heels of that was the sense of the lost summer of 2010.  I didn’t LIVE it.  I was (necessarily) asleep.  And pretty soon tears were running down my face – such a profound sense of loss.  And a lot of questions:

What all have I missed?

What have I lost?

What beautiful things have happened that I haven’t been able to absorb?

What has changed and I haven’t been aware of it?

What will life be like when I wake up?

Who will be there for me when I wake up?

Has my cocoon done permanent damage to important relationships?

Can I wake up fully yet (please?!?) or will my system demand that I wait until after Elizabeth’s major back surgery on July 13^th and her following weeks and months of recovery? (answer: wait)

So…  I feel both eagerness to pull the packages off the shelf and truly “live” and “remember” what is needed of this last year and a half… AND a wariness about some of the loss that “processing the packages” may bring.  All of this, of course, while still living in the tension of wanting to get better more completely and “wake up” soon and knowing that Elizabeth’s upcoming surgery and recovery will likely require me to “cocoon” for longer than I want.

Cancer is interesting.

There are often more questions than answers.

There is no tidy box to put all this stuff in.

And I sound like a therapist.  J