Riding a bicycle

life is like a bicycleI was looking for something to describe my mood today, and there it was.  Simply stated by a brilliant man, and there on the “Perpetual Optimism” Facebook page.

We keep going because we have to.

We keep going because if we DON’T, then we will fall.

We keep going because it is the only way to keep our balance.

I am tired.  Tired of running, and sorting, and organizing and doing – all the time.  Tired of working full time, being a full time Mom, and being a full time researcher, full time medical billing secretary, and a full time organizer… of all things.

I am not perfect at any of those jobs, and that frustrates me more.  I want to do them all perfectly, but there is precious little time to pause for fear I might lose my balance.

I am grateful.  For my husband and my daughter.  I was never very good at riding a bike.  Now that I do it full- time, they are my training wheels – always ready to hold me up… just in case.

Listening while distracted

You know the rules and the laws on driving while distracted.  Hands free cell phone devices, watch the road.. etc. etc.

distracted_driving

But, what about listening while distracted?

The sermon in church focused on this last week, and honestly, 8 days later it is still on my mind.  A personal challenge to me is to stop listening while distracted.

This is not an easy task.   There are precious few people brave enough to venture inside my mind.  It is quite a mess.  Once you sort through all the noise, its hard to find focus.

The list of thoughts on any given day could include, but are not limited to…

What appointment to we have today?  How many?  What will the wait time be?  When is the next one?

Will we get bad news, or just a 6 month return ticket?

How is Meghan feeling, what is her pain like?

Why does she hurt so badly, and how come no one can figure it out?

Will she feel well enough to participate in her after school activity?

How do we balance school with life?  How do we get all the homework and projects done amidst her chronic health issues?

What about her IEP?

Do we keep the para next year?  Do I need an advocate to help me?  Have any of these people got any CLUE about Cowden’s?

What about the bills?  I know we CAN pay them, but there are quite a few.  How many phone calls do I need to make to be sure that they are all done right?  When will I make the phone calls?

How much will the heat cost this cycle?

Will we need a new roof this year?Can't stop thinking cartoon

Did I update the EZPass account fo the new car after the accident?

What groceries do we need and WHEN do I have to go?

How are Grandma and Pop?  Really?

Will the article for Rare Disease Day represent us?  What about the ribbons?  Will they be distributed properly?  Will the kids – and adults benefit from it?  What if Meghan has to speak at her school?  Will she know what to say?

Why is there so much homeowork all the time?

How am I going to finish this math series with her while studying for Social Studies?

Does any of that TRULY matter for 6th grade, or will they just realize I have a pretty smart kid?

When is the FUN supposed to start?

…. AND I COULD GO ON AND ON AND ON AND ON…

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So, with that many thoughts running through my head (and sometimes more,) how can I ever be an active listener to ANYONE?

Meghan and I are best buddies.  She is a great kid.  But we do butt heads sometimes. 

I have to wonder if its because inside that 75 pound 4 foot 10 body, she also is listening while distracted.

Tonight we will stop. 

We will focus.

We will look at each other.

We will listen carefully.

Maybe we will actually hear each other if we eliminate some distractions.

Her father is very good at clearing his mind – eliminating distractions.  Meghan and I – not so much. 

But how can I hear what anyone is saying if I don’t LISTEN?

I see it all the time in this technology age.  Parents on cell phones, ignoring their kids.  Kids pleading for attention, and to be heard.

I am no better if I let the distractions of my mind get in the way of my conversations with my family.

When I ask God to listen, He does.  When I listen carefully, He speaks.  This I know.

Life is way too short to miss out on what is right in front of me.

I am working on clearing my head and avoiding “Listening while distracted.”

Anxiety- an after effect, or a symptom?

An interesting “conversation” in one of my online groups this week, regarding increased levels of anxiety and depression conected to PTEN mutations.

This is really how I view the race against Cowden's Syndrome
This is really how I view the race against Cowden’s Syndrome

One of those conversations that make you wonder if it is better to be validated or to fight the idea that this perpetual anxious feeling is actually hardwired into your genes.

I looked up the articles too.  I love to read for myself.  The experiments are done on mice.  I suppose there aren’t enough of us to get a controlled group for a good study, (although there is a drug called rapamycin being studied on humans – but that’s for a different day.)  But, among other symptoms the mice in their mazes did show marked increase in anxiety.  Although.  I have to imagine if I was a mouse in a maze I might get nervous too…

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Now I have a lot of throughts on this.

I have always been a worrier – highly anxious about most things.  Anyone who knows me knows that to be true.

But, conversely – throughout large portions of my life there has definitely been something to worry about.

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So, as the chicken/egg thing goes -do I worry because anxiety is a part of Cowden’s syndrome, and even before my diagnosis I have had Cowden’s?  Or do I have acute bouts of anxiety because having Cowden’s gives me so much to be anxious about?

The best answer probably is – both.

I am a rational person by all rights.  Even in the middle of my worst anxiety I can stop and think and KNOW that my fears are irrational.  I can have the absolute belief that God will continue to care for the situation, and for my loved ones, yet still it is often like a crushing weight on my chest, making it hard t0 think, breathe or move.

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What I have on my side is that I was raised to keep on keeping on.  Thanks Mom, and Grandma and Pop especially… when the going got tough, we were taught to keep going.  So while I comfort myself with verses about tomorrow having enough worries of its own, and while I am faced with horrendous tragedies of things that cannot be controlled, I am able to press on.

So I can function, and the anxiety does not cripple me.  And, I know the “nature vs. nurture” reasons to explan it. 

But I do know that my daughter suffers too.  Not just with a PTEN mutation, and Cowden’s Syndrome, but also with anxiety.  She is a worrier, “just like her mother” they say.  Yep.  Maybe she is like me because of genetics, or my example.  I can’t really know for sure.

So what to do?

For me, the first step is just acceptance. 

I am a worrier. 

Regardless of the cause, and allthe logical justifications I can give myself – I will remain a worrier.

Then, find an outlet.  I am still working on this one.  I am thinking I like to write – so maybe that will help some.  I would like to get a few minutes to myself now and again.  I used to love to walk.  Maybe one day there will be time for some nice long walks.

I meditate a bit on the bright side.  Be grateful for the “good” that comes with a chronic illness like Cowden’s Syndrome.  I am not referring to the pain, and the surgeries, and the cancers looming, but rather to the “warning” system built in.  Parents would do anything to protect thier children.  How blessed am I that even among the strain of ceaseless appointments and hours waiting at offices and for results, we have a warning system.  I am confident that if we are vigilant, the Cowden’s won’t “get us.”

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Stay organized.  Don’t let the bills, the list of phone calls, the shredding, or the sorting to pile up.  It will just keep coming.

Stay ahead of the school projects.  You never can tell where tomorrow is going to land us.

Laugh.  Often.  It is deeply good not only for the anxiety, but also for the soul.

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Recognize you have lots to smile about.

Acknowledge the pain of others and “Pay it Forward” when you can.  I find that  NOT dwelling on our lives here, helps make me less anxious.

Did the Cowden’s cause the anxiety?  Is it hard wired into who I am as a person?  Is Meghan destined to be forever wondering and worrying?  Or, did a life of doctor’s appointments, pain, chronic disease, and general worry, create the anxiety? 

It really doen’t matter because it is here.  It is part of me, and to la large extent – us.  I doubt it is going anywhere.  I think its just my job to control the beast the best way I can, one day at a time.

Crying is OKAY here

crying is ok

I cried today.  Yep.  That was it.  Couldn’t hold it in one second longer so I pulled the car into a lot.  Thankfully I was alone.  And I rolled up all the windows, locked the doors – and sobbed.

It only lasted about 10 minutes, but I caught a wicked headache, and a bit of stress release from that good old-fashioned hissy fit. 

I generally make a habit of not allowing them.  I am a look at the bright side of life kind of girl.  I like to remind myself about others who have it worse, and try to put myself in other people’s shoes.  It usually works.

Today the emotion got the better of me. And its OK.

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Work was stressful.

Supporting my dear husband while he works his tail off three nights a week at school is well worth it, but stressful for all of us.

Homework.  Constant.  Ever changing.  Tests that need to be studied for.  Worry about things not yet complete.  Yep, its only 4th grade.  The teachers are lovely.  The stress is really almost unreal.

Today we went to the Urgi center for X-rays of a foot and ankle that has been bothering Meghan since dance class Monday.  She limped for 2 days before I thought – negligent mother should have a doctor take a look.  Sprained.  Takes time.  (Besides the 2 hours out of the afternoon.)

In addition to Cowden’s Syndrome, Meghan has a few other neat things.  One of her diagnoses is “Benign Hypermobile Joint Syndrome.”  Great – if you can manage your flexibility.  If you can’t it leads to all sorts of random injuries.  We keep a really good PT around… just because.

But, if I am really really honest – I don’t think any of these things pushed me over into that screaming sobbing cry I so desperately needed.  I think it was sadness.  Sadness, mixed with raw fear.

Last night I sat with a friend and her 7th grade son at the wake for the little boy who died last week.  I couldn’t for a minute imagine that any more sadness could fit in that one room.  I had a lot of time to think while we sat.  Maybe too much.

I looked first at his family.  Mom and Dad poised, and carefully greeting each on the never-ending line.  Big Brother and Little Sister, beautiful, supportive, composed.  I told you.  They could have been any of us.  And I am sure they never in their worst nightmare imagined they would be standing there.

And I looked at the police officers, standing in honor.  Each one with red eyes as they tried so hard to remain stoic.  Undoubtedly they had kids of their own, or they knew the young man well – or both.

Children.  Everywhere.  Out of order for a wake.  Except this time it was theirs.  It was their friend.  The kid they sat in class with.  Young preteens – so many of them former students.  Faces raw with emotion.  A night they will never forget.

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Tomorrow my friend and I, we will go to the funeral mass.  We will represent our school.  We will try to keep ourselves composed.  But, her thoughts will wander to her boys, and mine to my little girl.  I will think of the “close calls” we have endured, and the many the Cowden’s Syndrome has on the horizon for us.  I shudder at the horror… at the potential.

And yet, if I let it consume me, what life will that be for my girl;  my beautiful, generous, compassionate young lady? 
If I let the tragedy overwhelm me with the reality that at any moment, any of us could be this family, I will lose track of what I have.

If I lose track, if I stop cherishing the blessings I have, I do not give any honor to the memory of this little  boy. 

Instead, I hug tighter.  Try to strengthen the duration of my patience.  Smell the flowers.  Say I love you. Believe in angels.  Remember what really matters.

I can not comfort this family.  My words are useless.  They have to find their way. 

But, I am quite sure now why I cried, and why I had to cry, and why I continue to cry.  I can weep and mourn, with them and for them.

I can hug my little girl, and then hug her again.  I can make memories that matter.

Maybe if we all take some time to show some extra love.  Maybe then we can find a way to keep his memory alive forever.

neverending road

God, hold them in the palm of Your hand – tomorrow, and forevermore.  Amen.

There are just no words

Tonight it’s not about us.

No matter how hard I try.  No matter how much I trust.  No matter how much I pray.  There will be some things I will never understand.  Ever.

Today a generally healthy 11-year-old boy, a 6th grader from the neighborhood died.  A few days ago he stopped breathing, and today he is gone.

The details leading to the tragedy just don’t even matter, as much as the fact that it happened at all.

When I began teaching, his mom taught with us.  It wasn’t long before she would take childcare leave to build her family of three.  We were not close friends, but colleagues still the same, and close enough that I am absolutely sickened by the loss she and her family are enduring.

Years later the children would come, first through my school, then another local elementary school.  The two boys are in Junior High.  The 8th grader, the oldest, is just two years ahead of the little brother who passed.  Their sister is a 3rd grader.

The family is just like any of ours.  The mom was a teacher, dad a police officer.  They were the “regular” family.

This is the stuff nightmares are made from.

Even though we live in a “big city,” our borough is a small town.  There is so much interconnection in this area it seems everyone knows someone.

I was not “friends” with the family.  We chatted when we saw each other, but our kids didn’t play together.  We weren’t “close.”  Yet still I am heartsick.

I know families who have lost children.  I know mothers who continue to function after burying their babies, and fathers who get up and one day go back to work.  I am in awe of their strength.  I can not imagine the depths to which the loss of a child changes you.

And we seem to hear of it all the time.  There are tragedies, school shootings, traffic accidents, and the like.  There is cancer and its far-reaching effects.  There are countless rare diseases that I learn more about each day, that rob parents of their children way too soon.

Chronic illness is not fun.  It can be downright difficult to bear at times.  But tonight again I will thank God for Cowden’s Syndrome, because despite the headaches and trauma it can cause us, it is a blessing.  We have a warning system.  We have constant screenings that will likely protect us from the ominous cancers looking to attack.  We are blessed.

I do not by any means think that any type of loss is easy to bear.

The loss of my cousin shaped my existence as a person, but even I never fully recovered.  I still pray for her parents and her sister.

I was in the 6th grade when a friend from my church was hit by a car and killed on the school bus stop.  No criminal charges.  Just regular kids playing.  And then they weren’t.  I remember the whole experience vividly 30 years later.

A few weeks ago I stood by the side of a work associate whose 39-year-old daughter had died of cancer.  No words.

One of these parents told me there is a reason there is no word to describe a parent who has lost a child.  The grief can not be contained in words.

I just can not for even a moment imagine the shock and trauma when you put your healthy 11 year old child to bed, and he doesn’t get up.

sometimes the hurt

Tonight my heart is with the family.  The mom and dad, the brother and sister, as well as all the extended family and close friends whose lives are forever altered.

I will pray that God holds them all so tightly, and that He binds them close together, and showers them with His love.

There are just no words.

It was NOT the Cowden’s… this time!

Insert HUGE sigh of relief here.

happy girl

We saw the retina specialist.  He was a young guy.  He took a medical history.  He had never heard of Cowden’s Syndrome so he took 15 minutes to read and familiarize himself with it so we could have an intelligent conversation BEFORE the exam. (This is where all my fellow Cowden’s sufferers stop in amazement… yes – imagine that!)

He understood my concerns, especially the vascular ones since the eye doctor saw “something” on the picture of the eye.

Even with her having said, “It’s Probably Nothing, but…,” he still took almost 1 hour start to finish on the exam.

He looked in her eye.  He photographed the eye.  He tested her eye pressure, and her vision with and without glasses.  He systematically eliminated cause for concern, until he was able to say – yes, her vision declined – but I don’t see any ominous reason why that happened.

There is NO evidence of vascular lesion.  There is NOTHING to indicate that Cowden’s Syndrome played any part in this one.  Instead, it’s a bit of “cat and mouse.”  This time we are chasing a different set of genetics.

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Unfortunately for Meghan, her father’s family doesn’t carry good eyesight.  Seems she got the PTEN mutation from me, and the rotten eyesight from them.  Share, Share..,  I am not happy about the poor eyesight, but it is a lot more straightforward and less messy than anything Cowden’s related.

Genetics.

Rare diseases.

Over suffered, and under researched.  All of them.

genetics$

Spoke to a Mom, a volunteer at the Global Genes Project.

She was lovely.

She also has twin 9-year-old girls with a rare disease, whose chances of long-term survival are bleak.

The kind of conversation you end wow-ing the other person’s strength, and being thankful for drawing the rare disease card you did.

And this week I am being reminded that your kid doesn’t need a rare disease to end up in dire straights.  Young children are snatched from their parents far too soon.  In ways that just don’t make sense.

So we pray.  A lot.

Can't stop thinking cartoon

We can’t fix everything.  As a matter of fact we can’t fix most things.  So we hope.  And we help.  The best way we can.

We will make lots more ribbons.  People need to know about these disorders.  All of them.  And once they know, they will help.

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We contacted the paper in hoped they will run a story.  Every day feels like a story unto itself.

This time it wasn’t the Cowden’s.  Thank God.

But there will be a next time.  The worry will never cease.

Hold your children tightly.  To a large extent we are lucky.  We seem to know the beast we are fighting.

Tell them you love them.  All the time.

We are going to Disney again.  Money well spent.

Don’t look too closely at the backyard, and the deck.  Just come spend some time with us.  It passes too fast.

And WAY too much of it is spent at doctors, without much reprieve.

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Tomorrow we head back to the dentist about those gums…

Dead Poets Society

The church bulletin this morning had these words from Henry David Thoreau

thoreau 1Poignant.  Especially as I sat, in my “new” church, watching my daughter participate actively in a “Family Friendly” service.  They do those about every 6 weeks, in cycles, and I really enjoy them.  This one, this week, focused on growing up.

So, as Meghan stood singing, in a small, multi age group, I thought about the backdrop behind her.   Initially it still felt “wrong” to me.  I somehow expected her to be in front of the church I grew up in; with the same smile, and the same voice.  I imagined the picture behind the altar that became ingrained in my subconscious as a youth, and the striking stained glass windows.  I was looking for the familiarity of my childhood, even as I myself, and with my family, am still, at almost 40, “growing up.”

Things did not work out.  After 38 years that was initially so hard to swallow.  I was angry.  I was sad.  I was generally heartbroken.  But maybe it was time.  Time for me to “grow.”

For years I prayed for a place where my family could worship together.  We have spent 6 months now, almost every week, as a family of three in the pew.  The motto of the Moravian Church, “In essentials unity, in non-essentials liberty, in all things love,” speaks to my soul.

moravian star

I looked at the cross, and the Moravian Star, and I smiled.  The backdrop has changed, but not the meaning.  “It’s not what you look at that matters, it’s what you see.”  She was standing in a different place, but there was the same love, and acceptance I have come to equate with my faith.

When I got home I couldn’t shake the images from “Dead Poets Society.”  Quotes from my all-time favorite movie from 1989, with my all time favorite actor, Robin Williams flooded my head.

Thoreau, along with other famous poets wisdom peppered this movie with all the perspective I needed as I high school student.  And, now as I “grow up,” decades later, the meaning of the words changes a bit, but the movie “grows up” with me.

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And the reality that…

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The scene that spoke to the teacher and human in me, as Robin Williams hopped onto the desk…

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The reminders that we are to always look at things from a different perspective.

These are the words that shaped my youth.  These are the words that give me strength – decades later.  I love words, especially straightforward ones that speak to my soul.

In 1989 I thought life was complicated.  I had no idea that just shy of 25 years later I would be facing a rare genetic disease like Cowden’s Syndrome, with all its risks, and perils.  I could not imagine in my worst nightmares that my beautiful girl would be facing it too. And yet, these words, that became part of me – help give me the strength to endure.

My faith is strong.  My understanding of others, and the need to always look at things from a different perspective is a large part of how I define myself.

Growing up.  Changing.  Doesn’t mean ending, but rather new beginnings.

It may be a while before Meghan is old enough – or even interested in my favorite movie, but I will teach her – one step at a time.

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Every day – we work in this house on new beginnings.  We work on finding our voice, and moving forward.

We try to live a little, learn a little, and to keep God involved in it all.

We make a few denim ribbons, we raise awareness, and we keep the reality that we are fortunate.

All this from a “Family Friendly” Church service centered on ‘growing up.’

I consider myself successful as a Mother, if my girl grows up – Cowden’s or not – with these ideas helping shape who she becomes.

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