Finding my “Happy Thought”

It was a few months ago.  I can’t quite recall the date.  It wasn’t my finest hour. (or day, or days…)

I was grumpy.  Worried.  Angry about the struggles my girl was being forced to endure.  Twisted about a future of doctors appointments and surgeries.

I had noticed she seemed extra down, and I took it as my cue to worry harder.

At some point, I broke down, expecting a clear answer to the question, “What’s wrong?” so I could continue the business of worrying some more, and searching for answers.

But the answer wasn’t even close to what I expected.

“Mom, you need to find a “Happy Thought” because you being like this all the time is really affecting me.”

Neverland happy thoughts

Um, ouch.  Wow.  And she sure told me.

She wasn’t being disrespectful in the least.  We have worked on honest speech and clear language, for survival – and to help us prep for the teen years.  She was doing exactly what I asked of her.  She was telling me what she was thinking.  And she was right.

Years of parenting a chronically ill and allergic child have left me in a permanent hyper-vigilant state.  The “other shoe”  has been known to drop without warning, and there is a constant need to search, study, learn, and discover whatever I can about whatever is plaguing my girl.  I am her advocate.  I am her voice.  We have between us undergone at least 17 surgeries in the last 11 years.  That doesn’t include countless hospital stays, tests and procedures.  There is always a pile to contend with, whether its bills to fight or file, prescriptions to order, reports to hunt down or appointments to make.  Life is very busy.

Neverland-HOOK

There was a time I used to walk for fun.  Hours on end with my music in my ears.  I would walk for miles.  I would walk everywhere.  There was a time I would read for fun.  Not medical books.  Just leisurely reading.  I used to watch “Law and Order.”

Now between working full-time, parenting full-time, chauffeuring to appointments, trying to make swim practice, keeping food in the house, keeping some semblance of order, including clean laundry, clean curtains, and clean cabinets – it was easy to get swallowed up by obligation and forget the joy in my life.

To be quite honest with you, there isn’t much I would change.  Do I sometimes miss those long carefree walks?  Definitely.  But, would I for one second trade one bit of my beautiful, tenacious, funny, stubborn, intelligent little girl?  Not a chance.

Hook movie

We watched “Hook” a few months back.  It was a rare occasion when I sat to watch a movie.  It is one of my favorites.  And for those of you who might not be familiar, it’s a “Peter Pan” spin off where Peter ended up all grown up – a lawyer.  He forgot his magical youth, and the story takes him back to Neverland to find it again.

I am sure this is where she got her admonition for me to find my “happy thought,” as Peter needed his to remember how to fly in order to beat Captain Hook.

I thought and I thought, long after she had said the words.  I was tempted to compare myself to other adults, and justify my grumpiness.  But I resisted the urge.  These words weren’t spoken to another adult.  They were spoken to me.  And what a gift she had given me.

peter-pan-best-quotes-sayings-faith-trust-good

Transformations don’t happen over night, but I have forced myself to become aware of the things that give me pleasure.

I love to write.  And so I have been trying to give more attention to my blog.  Therapy on a keyboard.

I have taken my feet instead of the car wherever I can, and wherever time allows.  I can’t walk for hours, but I can appreciate the short walks and relish them more.

I am realizing that a happy Mom is some of the best help I can give.  I won’t know all the answers.  I can only give her the same honesty I ask of her, and I can only do my best.

And while we focus on being positive, and its something I ask of her all the time – it’s not fair to ask it and not model it.

So we are all a work in progress.

And when I really soul search for what makes me happy, my pleasure really lies in seeing other people happy.


I am constantly telling Meghan that Cowden’s Syndrome does not define us.  But, in fairness, actions speak louder than words.

It’s been months since I was told to find my “Happy Thought,” and I hope I never forget that day.  While we still have our ups and downs it serves as a reminder for me that I am no good to those I love unless I find happiness myself.

Meghan and Felix – they will always be my happiest thoughts.

But I love my family, and God, and exercise, and nutrition, and cool breezes and music, and flying birds, and summer…

I strongly encourage you to find your “Happy Thought.”  It’s tough to start looking when a 10-year-old calls you out.

Loving my heart - outside my body- my biggest happy thought.
Loving my heart – outside my body- my biggest happy thought.

It’s not malignant… BUT…

It was an interesting phone call this afternoon.

I knew from the caller ID that it was going to be the hospital with the pathology report.  Home on a snow day, relaxing with the family – I took a deep breath.  It was the endocrinologist on the other end of the line.

“I have the results of the pathology…”

AND???

“The samples are not malignant, but…”

YAY, and UGH!

And there followed a conversation that lasted several minutes.  I tried multiple times to use the word “benign” to refer to the results.  Each time I was carefully deflected.  When he spoke he never said “benign’ once – only “not malignant.”  Synonyms – yet apparently not interchangeable.

Someone less in tune might have missed this conversational nuance.  I don’t miss much when it comes to my daughter.

So the doctor recounted how each off the 4 cell biopsies obtained through the Fine Needle Aspiration, showed cells that were “not malignant.”  When I asked about the cells, specifically remembering the “precancerous” title given to the cells that had brought us to this hospital to begin with, he told me again the report says they are, “not malignant.”

SO WHAT’S NEXT?

whatplan

I know I didn’t imagine the deep breath on the doctor’s end of the phone when he began, “Typically, we would follow the case in 6 months with an ultrasound, and I think you should make that appointment.” Then there was a deep breath and a pause.  “I also think you should take her to see a surgeon – just for another pair of eyes.”

Now I was thoroughly confused.  “Why? Do you think the throat clearing that has been going on could be related to the nodules?  What about the Fine Needle Aspiration?  How accurate is the test?”

He addressed one question at a time.  Almost as if he expected them.  He and I were not fast friends, and he often seemed annoyed by the countless questions I ask.  It never stopped me, but I couldn’t help but notice he was almost anticipating my questions today.  Maybe he was even welcoming then.  I flashed back to that visit on December 19th where he was visibly uneasy about the feel of that right thyroid.  “The FNA is accurate 90-95% of the time.  Usually that is not an issue because thyroid cancer tends to grow very slowly and if we follow every 6 months, we will typically catch anything we need.  That being said, in a situation like Meghan’s where there are so many nodules, and there is Cowden’s Syndrome, it sometimes is harder to manage. In regards to the throat clearing – I don’t THINK it’s caused by the nodules, but again I can’t be sure.  Why don’t you set up a consultation with the surgeon?”

confused-face

Deep breath.  It’s good news I kept reminding myself.  It’s not cancer. (Yet… nagged the little voice that never knows when to shut up.)  I reassured him that I would schedule the appointments with him and the surgeon.  Of course after I arranged to have the pathology and ultrasound reports Emailed to me so I could agonize over every detail…

I scheduled the appointment for the first week in June.  I tried for the first week in July – but he is on vacation that MONTH…  Then I sat down to Email Meghan’s hematologist/oncologist the reports and ask her opinion.  She concurred with the endocrinologist and approved of his choice of surgeon.

Within 45 minutes my phone rang.  The caller ID showed the hospital number again.  This time it was the surgeon’s office.  They were contacting ME, at the doctor’s request – to set up a consultation for Meghan.  Well I have to tell you that didn’t do a whole lot to ease my mind.  Obviously it was nagging at the doctor enough that he reached out to be sure I made the appointment.  Scheduled.  February 25th.  I couldn’t get a time because they call the day before with that.  So, I explained how much I really NEED to be at work.  They made me no promises.  The 25th it will be.  Regardless of the time.

The snow was so pretty today.  So nice to be home as a family, to shovel, to play, to take some pictures, to watch an old movie.

I sat down to type this almost three hours ago, but somehow as Meghan was getting ready for bed she developed severe pain in her back and a ruthless headache.  Reminders that even an hour or so in the snow is too much for her body to endure.  Frustration.  Fear.  Two hours at her side, her father and I alternating pressure on the most painful spots.  She’s asleep in my bed now.  Moaning.  The night will be long.

frying pan fire

Some time this afternoon I realized again, that this is just how its going to be.  We are going to walk out of one fire, while walking around another.  We aren’t going to know the hows and whys.  We aren’t going to be able to make many plans despite our best efforts.  This is life with Cowden’s.  This is our life.

And tonight, as I held my husband’s hand, and we each had one hand helping soothe Meghan’s agony, I realized again that through the depth and power of our love for each other – all of us – this works for us.  It’s not what I would have chosen, but it’s what we have.

Never in my wildest dreams could I imagine a day without the two of them.  Somehow, that has to make us the luckiest family in the world.

think happy thoughts

And that is my happy thought tonight.

Happy New Year!