Invisible Illness – Sometimes We ALL Need Help

The day starts with me laying in my bed, trying to wrap my mind around the fact that it is time to face another day.  I lay there a few moments.  My heart rate begins to rise.  I feel the familiar ache and throb in my legs, and I quickly calculate the number of hours until I can re-visit my bed.

On the days I can move fast enough, I take a quick shower before I undertake the 10-15 minute process of waking Meghan.  Please, save the judgment that she is 14 and should be waking herself.  You’re right.  Except by the time I get to the top of the stairs there are several alarms sounding simultaneously.  She would if she could.

Waking her is no easy task.  Her body, so deeply fatigued by her daily physical and emotional battles, resists breaking those last few moments of cherished rest.  Never enough.  All teens are tired.  I get it.  I don’t know for sure that YOU get looking into the eyes of a 14 year old, bright, compassionate, articulate, and full of promise, as she pleads for it not to be morning.

The two of us together are some pair in the early hours.  My body aches but by the time I get through the shower I can usually shake some off.  I am also 30 years her senior, so living in my mid-forties, I can expect some normal aches to start to take hold.

Like so many things, Meghan’s life is mine amped up.  I was always tired, but didn’t know “train wreck tired” till the attempts to balance my thyroid in my mid-twenties.

She was 10 when that journey began.  It is not right yet, although a competent, sensitive endocrinologist watches closely.  Synthetic anything gives her body a problem.  Always has.

Adding in the synthetic hormones to contend with the suspected start of endometriosis has added a layer we need, but didn’t want.  The pre-cancerous tissue in the uterus is likely to be helped by this step, as well as excruciatingly painful periods, but like all things it is not without cost.

She drags her body down the stairs, walking crookedly to contend with a back, or a hip, inevitably and almost constantly displaced by a full foot size discrepancy.  Bi-monthly chiropractic visits put things back in place, for as long as they last on her 5’8″ frame.

As she travels the two flights down to her bathroom, there is an internal, and audible triage of the aches of the day being sorted.  It’s agonizing to watch and listen to.  You see there is never a day where everything feels well.  There is never a day where she is just tired.  There is never a day that she wakes eager to face even the most exciting events.

 

There is a part of me, a small quiet part of me, that sometimes allows myself to believe that maybe she’s playing games, exaggerating, or trying to make me insane.  And then I think quite simply, why?

Why would she WANT to hurt, or have an upset stomach, or be in pain.  She, who is eager to please her parents, and everyone she meets, would not want to be in internal turmoil or conjure up ailments.

So my mind does it’s thing as well.  “How many days has that been bothering her?”  “Do I need to take her to a doctor?”  “Can they really help anyway?”  “Is anything lasting too long?”  And so on…

And somewhere in the middle of this, as the moments kick past 6, I have to push.  We have to be out the door in order for her to be at her 7:25 period 1, and for me to be in my classroom in time to set up for my 8AM students.  There is really no time to deal with any of it.  We simply need to press through and get out of the house.

We do a lot the night before.  Lunch is packed, swim bags are packed, clothes are picked out.  Homework is always in the backpack.  Mornings are not for things that can be avoided.

I have to admit there are mornings where it has gone very wrong.  There have been mornings where I have not felt well myself, and my patience with the multitude of issues required to just get herself dressed and ready are forgotten temporarily.  I am not proud of the mornings where the clock passes the point of panic and I evolve into a screaming shrew.  But, this is about honesty, and honestly, it happens.

Smooth or not, we find ourselves in the car on the close to 20 minute ride to her school.  And that is where it gets trickiest.

Months ago Meghan was diagnosed with PTSD – Post Traumatic Stress Disorder, secondary to medical trauma she has endured in her young life.  That PTSD has been exacerbated through the years through a variety of triggers she works to manage.  But, many days it seems her “fight or flight” is broken and she is wound into a high state of awareness, of EVERYTHING.  That means every human interaction, every test, every assignment, every competition, every audition is just amped up.  Sometimes the volume is so loud it can feel almost crippling.

And, yet still, as we work daily, she has to get out of my car and walk into that building alone.  Some days are easier than others.  Some days, I’m tempted to snatch her and drive far away where I can keep her safe and calm.  But, she’s not 4 – she’s 14.  And, she has to go.  She knows it too.  So she does.

It’s not about the people anymore.  Although it was for a few years.  Now, thankfully, it’s not.  The people are kind.  They students are friendly, and while no one is friends with everyone, she is after only about 20 days, building positive relationships with peers, her swim team, and many adults.

So why?  I’m not sure.  And I’m not totally sure she is either.  That’s why we’re working on it.

But, there are theories.

Post Traumatic Stress Disorder is not rare.  But, Cowden’s Syndrome is.  And in my child the two are intermingled.  The relationship between chronic medical issues, 18 surgeries, tests, scans, hospitals, isolation, heightened anxiety, the need to self-advocate, a lack of trust for the many medical professionals who have handled things wrong, and the isolation and overwhelming feelings this can cause is just the tip.  Coupled with generally feeling off, having a super sensitive stomach, relentless seasonal allergies, and being an athlete who simultaneously loves her teams and fears competition can create consternation.  This is the very tip of what I know to be a Titanic sized iceberg we are working on melting.

She likes her school.  She likes the people.  She likes the environment.  And yet there are days it is a struggle, a moment by moment struggle to make it.  She hurts.  She pushes.  She is stubborn.  She is strong-willed.  And for as many times as those characteristics cause me to want to bang my head repeatedly against a brick wall, are as many times as I thank God she is that way.

She likes to swim too.  She likes to swim for her school.  She likes to swim for her 12 month team.  She enjoys feeling strong, and having a body that reflects her hours of training. I am grateful that she is an athlete.  But, the battle to get into the pool when every piece of you just hurts, and you want nothing more than to be in your bed is a battle her coaches or her teammates do not fully see.  I mean they see the performance anxiety, which is WAY deeper than what it seems to be, but the rest, the full deal is carefully and intricately hidden like so much else.  No wonder she is tired.

 

We are working on it.

Every day is a battle to get through the day.  Sometimes physically, and other times mentally and emotionally.  Yet, day after day, it gets done with a grace that often blows me away.

Every house holds secrets.  Private, messy moments that are not shared with the world.  We are not the only ones, and we are not oblivious to the moments others must hold close to themselves.

Collectively, we all need to stop judging.  We must stop imagining their life is perfect because it looks so on facebook, or instagram, or snapchat.  We need to be kind.  We need to go back to the basic rule that “If you have nothing nice to say – don’t say anything at all.”

We need to not profess that we can fix others problems, or make ourselves feel better by offering “quick” solutions.  It is hard to watch others in pain.  It is not easy to accept that sometimes there is nothing we can do besides be a friend.  We need to acknowledge pain, and struggle as real without giving in.

In this house weekends are still about survival.  They are about recovery.  They are about storing up a ‘spoon’ or two so that we can use them in the coming week.

One day I’d like us to have a social calendar.  I’d like to get out as a family and make some memories on a sunny October day.  But, today was not that day.  Today was swim practice and vocal lessons.  That is what we could do.  Today.

The evening winds down and we are faced with the reality that sleep will need to happen again.  Sleep is tough times.  Not for lack of fatigue, but for a teenagers over worked mind.  We are working out a system.  We are seeing some progress.  The struggle is real.

We are working on it.

This week we contracted with a company for a Service Dog to assist with the PTSD.  It will be one of many interventions we will use.  We have sent a deposit.  The process has begun and can take up to a year.  We are hoping it will be sooner.

If you have read this far, and you have real suggestions for grants we can apply for to assist in raising the cost of this dog, your assistance is valuable.

We are not looking for an analysis, or reasons why we Meghan might NOT need a Service Dog.  We have medical professionals encouraging this.  We will deal with logistics as the dog’s arrival looms.  In the mean time, we are working purely on fundraising.

The organization we are connected to is http://www.medicalmutts.com  They are an accredited business that we researched extensively.  When the dog is ready we will need to spend a week in Indiana picking it up.

The decision to make this move was based on many factors, but it was guided by Meghan.  She has researched.  She has thought.  She has read.  Her father and I have learned to trust her instincts.  Undoubtedly, that is one of the reasons we have come so far.

Looking forward to hearing your encouraging, helpful comments –

We remain

#Beatingcowdens

A Perfect Storm

 

Sitting, sopping wet, in the middle of the ocean, in your small row boat.  Your feet are wet.  Your fingers are wrinkled.  You are cold, exhausted, and often frightened.  There is no access to the weather channel.  Your connections to the real world have all but vanished.  You focus every ounce of your strength on keeping the boat afloat.

You try to maintain a sense of calm, but your insides are turning worse than after a serving of spoiled mayonnaise at a summer barbecue.

There are moments when you think.  Hope.  Pray.  That it will settle down.  There are moments when you dream of enough sunshine to shed your wet clothes and warm and dry yourself.  There are moments when you can almost see what appears to be a friendly ship in the distance.  And in those fleeting moments you even remember what it felt like to socialize, to chat, and to laugh – about every day life.

Your faith reminds you that Jesus is in the back of that boat.  You know better than to let your insecurities wake Him.  You know in your core that you are loved, and protected.  

And then another wave crashes over the side.  You can not put your hand on the oar.  You lock eyes with your husband in front of you – always with you.  You put a hand on your girl, sopping wet beside you.  You strengthen your resolve.  

I have been fading out of touch these last few months.

I love writing.  It is my therapy and my release.  It clears my mind and cleanses my soul.  Except there is a balancing act to be had -tenuously protecting privacy while fulfilling what we believe is our calling to share a raw, honest view of our lives “Beating Cowdens.”It is hard to realize breaks in time.  Things blend together so readily it is hard to discern where one event starts and another stops.  There is only rarely a pause between medical appointments, some for the same issues, some for new ones, and others for maintenance.  Some appointments are mine, and some belong to Meghan.  All but a few require hours and hours of travel.  It safe to say they cost us on average 5 hours a day.  But, those 5 hours are not of my choosing.  I can’t say, decide to get up at 5 – deal with the appointment and be ready to start the day at 10.  That’s just not how it works.  Most are scheduled somewhere between 10 and 3.  That means by the time we get home, there isn’t much time to do anything.  Or, we spend the day waiting to go – so there isn’t much to get done.  There are no summer day trips planned.  Making plans to catch up with friends is something we avoid – because we so often have to cancel.  The cycle continues.  There is just getting by.  And some dreams that maybe we can get to the beach one day this summer…

Somewhere early this year Meghan started to be done with it all.  This is not an easy place to be in by any means.  She is a month shy of 14, and this is her journey for the REST of her life.  Teenage years are nothing most of us would want to revisit.  The extra complications of finding your way amidst a chronic sense of isolation (the knee precludes too much walking, it prevents basic sports games most of the time, it leaves the competitor side-lined too much, the allergies mean the food has to be different, the pain is unusual and constant and managed in some “unorthodox” ways, the number of times she has to say “no” because she has an appointment, an ER visit, or something else medical is astounding and limits the invitations, ETC., ETC…) coupled with an understandably defensive posture, and a desire to just BE, can make for some lonely times.

 

Her sleep patterns went off the charts some time in February.  My sleeper just couldn’t fall asleep.  She’d lay still for hours.  Her pattern was restless and fitful.  I watched my girl pull away from her swimming.  I fought to push her.  Even after her best meet ever in March – I could no  longer get her up to a morning practice.

Meanwhile, I never made connections that are so clear now.  In January we were released from the Interventional Radiologist who had completed the 5 embolizations over 6 years on the AVM in her right knee.  He released us to the care of the orthopedist who had already performed an arthroscopic lateral release in 2015 to help shift her patella into place.  It had begun to slide as a result of residual damage from small amounts of lingering blood in the knee.  By early this year the warning signs had begun to develop that the knee was off.

A visit to the orthopedist in February confirmed what Meghan undoubtedly knew.  He offered her the chance to try to intervene conservatively and put a brace on to hold the patella in place.  Maybe it could “convince it” to move on its own…

She took it in stride, like always.  We bought leggings to accommodate the giant addition to her thin frame.  She dug in and pressed on.

While all this was going on the chronic congestion that had begun in November worsened.  The ENT noted swelling, but called it allergies, the obvious choice this season.  There was a nasal spray added, and a week of a decongestant.

Attendance in school started to be a struggle.  There was fatigue.  Low grade infections.  There was pain.  So much pain.

The chiropractor visits became more frequent.  The leg length discrepancy made more noticeable by the limping to accommodate the brace on the shifted knee cap.

My surgery in March helped nothing.  There was so much vocal rest required it tossed us all on edge more than normal.

Swim practice was lessening.  Focusing on school was a chore.  Sleep was becoming near impossible.

The breathing worsened.  We justified the “worst allergy season ever.”  Her voice started to feel the effects of this chronic congestion.

In April the inevitable was spoken.  The knee would need a repeat of the 2015 arthroscopic lateral release.  We wanted to schedule it immediately.  The first available day was her the opening night of her school play, a play she had earned the lead in.  The next opening was almost a month later on May 20th.  We would have to wait.

The pain increased.  The frustration increased.  The sleep, and subsequently the desire to swim decreased.

The “Coaches Award” at the swim dinner made her feel honored.  She respects her coach so much.  But, she couldn’t reignite the fire.

The surgery in May went well, even though I had worried with the increased congestion that they could not put her under anesthesia.  But, it was fine.  She went through the 2 hours like a seasoned veteran.  That made number 18.

Rehab was tough.  The pain was significant.  But, it faded gradually.  Our favorite PT began to work her magic.

She got around on crutches, figured it out and made it work.  Again.  Always.

She got off the crutches exactly in time for 8th grade prom.

 

She was healing.  Physically.

She made it back into the water.  She swam the 18th of June, and the 19th too.  She started to talk about it in a more positive way.  The 20th was awards night for 8th grade.

My 8th grader was named Salutatorian for a graduating class of almost 400.  She received several academic awards that night. I sat in the auditorium with the last few months, and years running through my mind.  People knew some, but no one, not even I knew ALL of what it took to be her, every day.  And here she was, not only doing it, but excelling at it.  It was a good night.

Until she came home, and put up her feet.  And there, on the side of her surgical leg was a 4cm x 6cm mass, with rapidly increasing swelling.  Breathing, we strategized.

We took the crutches back out.  I stayed up most of the night making sure there was no bleed on the knee.  I sent her to school the next day to get her cap and gown and yearbook “like everyone else.”

Then we headed to the surgeon.  His nurse practitioner sent us to the ER.  They could not get their acts together and after 7 hours discharged her on crutches with a script for an MRI.

 And an IV that went unused…

She was to be “minimal weight bearing as tolerated.”  They wanted her back at the doctor that Friday.  I finally spoke up and said no.  She was going to her graduation Friday – NOT tainted by a medical appointment.  We settled on Tuesday.

However, with no answer, she was to graduate on crutches.  So, a friend suggested if she had to use them, she should “own” them.  My husband spray painted them white.

Sunday we drove to Long Island for that MRI.  The one I knew they would not do locally.  30 miles.  2 hours and 15 minutes home.  We caught up with some friends that day.  Good thing.  We needed them so badly.

As she was in the MRI machine for her knee she told me something was “blocking” her nose inside her head.  If you’re a Cowden’s Mom – you just went to tumor as fast as I did.  My head spun.

Monday the ENT was able to ease that worry.  He told us it was a mass of infection.  That likely she had had a severe sinus infection for 8-10 weeks.  He anticipated 14-28 days on biaxin to get after it.  That was alongside a short course of oral prednisone.  He nose was so inflamed there was almost no air passing.

A sinus infection usually has me out of commission in about 3 days.  I just shake my head in awe sometimes.

Tuesday the 27th we trekked out to the surgeon again.  The MRI showed the mass to be a huge fluid filled pocket.  There is also fluid all through the knee joint.  He looked, and looked.  He has done many surgeries.  He is skilled.  He shook his head and finally told us he did not understand.  He had “never” seen this before.  And now we had to wait for her knee to tell us what to do next.

Cancel camp.  No Drama Camp she had loved so much.

Postpone PT indefinitely.

No swim practice yet.

And there we were – facing another summer…

But somehow, all of this seemed to weave together.  The perfect storm.  The knee, the sinuses, the sleeplessness, the fatigue, the low-grade illnesses, the sinus infection…

Somewhere through all this we spent a few visits with a brilliant doctor who diagnosed Post Traumatic Stress Disorder.  PTSD.  Like with the soldiers, or other trauma victims.  “Secondary to significant medical trauma” she said.

It all made sense, except the “post.”  There is nothing really “post” about this ongoing scenario.

That, and the Salutatorian thing.  As impressed as I am – I am still in awe.

The journey continues, and we will above all things remain…

#beatingcowdens

Light Through the Lens…

I think I blinked, and the calendar changed from October to December.  Some weeks I can do nothing more than plan day by day, because to look too far is overwhelming.  But, I “lost” the fall in a beautiful way.  I lost it shuffling my girl to places she loves to be, and helping her apply to high schools she is excited about.  Four years ago I could not have imagined she could keep this schedule.  She battles for it every day and I admire every ounce of her determination.  I take nothing for granted, and I know a huge “doctor cycle” is soon to be upon us.  Meghan’s appointments begin late this month.  Mine will overlap, likely culminating in vocal cord surgery.  But, for now, for this moment, I am grateful for this chaos.  The hint of “normalcy” is not to be left unappreciated.

Today though, I blocked out some time.  Today I needed some time to sit in my office and look around.  There are beautiful images on the walls of my office from New York City to Washington state – and places in between.  Each is carefully watermarked “Leon G. Thompson,” a process that took my husband countless hours.  There are thousands of such images on my laptop and several backup drives.  You may have no idea who “Leon G. Thompson” was, but I can tell you these pictures are more valuable to me than any you’d find in a museum.  Leon G. Thompson was my father, and these pictures are what he left behind on 12/4/13 when cancer snatched him from us far too soon.

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“A Few Good Men,” has been far more than a movie title in my life.  I was blessed to have 3 grandfathers that shaped who I am.  I am equally blessed to say I have had two fathers mold me into the woman I have become.  My Mom’s husband Ken came into our lives when I was a teenager, but he has been, and continues to be an unshakeable source of everything from “fun facts,” to computer tech, to house repair and all things in between.  There is a special place for a man who steps into a marriage with 2 teenage daughters in tow, treats them as his own from day one, and never skips a beat.

My father, well… let’s just say the early years were rocky.

What I know now, but I didn’t know then, clarifies a bunch.  Dad, a Vietnam veteran came home lost.  The earliest years are peppered with memories that don’t leave “the warm fuzzies.”  The years after that hold memories of fun visits.  Dad would come by sometimes.  There were movies, and visits to the park and the zoo.  There were restaurants, and exciting novelties.  But, there was not consistency.  There were chunks of empty time.  There was a lot of wondering.

Contact got more steady in the teenage years, especially after my brother was born.  There were more visits, and more phone calls.  But, history sometimes repeats itself, and there were years that faded away again.

Later, after high school, and probably after college too, there was more.  Maybe I was ready.  Maybe he was.  I’m not sure.  But, slowly and carefully, over years, a relationship began to form.  By the time I got married, I was able to dance with my Dad, (and Ken, and my Pop :-)) and I will cherish the memory forever.

After my daughter was born, he started showing up more.  And I liked it.

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Hard times came for Dad, and the restaurant industry finally failed him.  And that low for him, was the point our relationship became solid.  Nothing happens overnight, but he was here.  Close.  Interested.  Available.  He helped pick up Meghan.  He came to birthday parties, and dance recitals, and swim meets.  He came by for Father’s Day and even celebrated a birthday with us.

It was during that time that he first spoke the words I’d been waiting to hear since the second week of my Abnormal Psychology class in college.

“I have PTSD.  Do you know what that is?”

“Yep.  I know.  (and I exhaled a sigh I’d been holding in for years..) And it all gets better from here Dad.”

He was stunned.  He had no idea that his entire adult life spent making poor choices, ducking relationships, and often shying away from those who loved him most, were just a few of the symptoms of PTSD. (Post Traumatic Stress Disorder)  He couldn’t imagine that I had already pieced together that unspeakable horror encountered with his Marines in the jungles of Vietnam had impacted, to the point of changing, and really shaping his entire adult life.  13 months in that war, and not a day, a single day, ever went by without it influencing his thoughts and behavior.  I was able to pick up from a text-book the reasons why he had shied away from our relationship.  I was able to know in my heart that he couldn’t risk expressing his love, showing up, or being truly “present.”  But, in that moment, hat moment when he said it THAT is where I got him back.

I can’t say I remember the day.  And I may be wrong on the year too.  But, it was sometime around 2009.  Finally, he was working on his own healing.

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And he worked hard.

We spoke more regularly.  Once a week usually.  Sometimes it was his turn.  Most of the time it was mine.  As I struggled through raising a chronically ill child, he became my sounding board.  He was my confidant of all things.  He was where I went to bounce the tough decisions.  Because, life had left him a great listener.  Raising a child with a rare disease, means often having to make really tough choices alone.  When your disease affects only 1 in 200,000 people, experience with it is limited.  When Cowden’s Syndrome manifests differently in each of that small number of patients, including myself and my daughter, there is an even lower confidence interval with doctors who often just have no idea by no fault of their own.

It is hard to hear over and over again that a child is ill.  Especially, when it is your child, or your grandchild, or one you love so much.  I have had to make so many unorthodox medical decisions, that I often just needed someone to hear my thought process, and let me analyze, and over-analyze. I have gone against the doctors to trust an instinct that was strong in my mind and my heart.  Dad was the one who could hear it all out.  He heard me without speaking.  He listened attentively.  He offered advice only when I asked, and offered encouragement always.  These were not situations where I just needed my ego stroked.  These were tough conversations to have, and he never ever shied away from one.

He simply would bring me back to reality.  He’d ground me by telling me to use Meghan as my guide.  Check on her health, physically and emotionally.  Focus.  Trust my instincts.  Be able to correct wrong decisions whether they are mine or theirs.  Still now, three years later I find myself aching for those conversations.  She is stronger.  She is tougher.  She is amazing.  But, there are still so many battles to face and so many difficult decisions to make.  That’s when I retreat to my office.  I sit in his chair, and I look up at the path of snow in central park, or the Washington mountain top, or the waterfall, or the rainbow and I think.  I talk the conversation through as if he were here.  Because I know he is.  I just have to listen really carefully.

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Dad told me once that I understood PTSD because Meghan’s medical battles had left me some ways in a similar state to him.  When she was younger, and so sick, that perpetual fear of losing her, the hospitalizations, the surgeries, left me with a need to he “hyper” aware all the time.  While I could never profess to connect this to the horrors of war, he did.  And I think it allowed him to open up with some of his own stories.

Through those years I heard tales from his mouth I had never known.  I heard of battles, and losses and names of people, and places.  I listened so attentively.  Quietly.  As he had done for me.  Sometimes I even took pen and paper to write down his story.  Because I wanted to hang on every word.  Because you just never know.

I found out Dad was sick when I made that Friday night phone call in October 2013.  His voice sounded a little off and he told me he was in the ICU at the VA Hospital in Brooklyn.  When I asked him if anyone knew he said he wasn’t too sure.  But, he said, “now you do.”  And he laughed, as only he would at that moment.

I got to the hospital the next morning and we went through the details.  At that point no one knew anything.  Confused doctors was a topic we had spoken about at length.

The 10 weeks that followed were just a long blur.  There were about 4 weeks of me forcing his hand to allow me to take him back and forth to his appointments.  Sometime after that he admitted he couldn’t drive himself.  That was a tough day.  I had already called in my sister, and it was time to reach out to my brother in Texas.  Family meeting.  The “team” assembled.

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And through the some of the toughest weeks, I bonded in ways that can never be broken, with a sister I have always had, and a brother who I was getting to know better than I ever had.

Dad was admitted to the VA on Thanksgiving of 2013, and one week later, on December 4th, we were by his side when the angels came to free him.  No more suffering.  No more PTSD.  Pancreatic cancer at age 65.

I dialed his number for months after.  I still know it in my heart.

I spent the months after he died cleaning out his apartment.  Dad was not a man of many “things.”  His iPhone held no Email, and only one photo.  “Never want to put too much information in one place,” said the man who in his soul operated always with the mentality of a 19-year-old combat Marine.

As I cleaned I took every single scrap of paper he had ever written on and clipped them together.  I laminated them.  It was to be the only way we would ever “talk” again.  It is Dad’s quotes scattered through this piece.

He loved light.  And I guess for a man who had spent so much time fighting the darkness, his love for light made sense.

Dad was, to our family, and friends, a photographer.  “Tom” would have a camera around his neck at all times.  He took joy out of capturing happiness.  He took pleasure at photographing family events, and sharing his photos with everyone.  As we sorted through the pictures, in the months and year or so following his death, we saw some incredible images.  We sorted out the family shots from the scenery ones.  We put up a sharing site for all those family images in case anyone had never seen them.  And we protectively shielded his “scenery” images, and carefully watermarked them, and kept great pains to keep them off the internet.

At some point we will organize an art show in his memory.  We will print, and sell his treasures.  We will find a place to donate any profits that will honor his memory.  We will let the world see what he saw.  Dad used that camera lens to showcase the light.  To view the beauty in the world.  Consistently, when I look around I see “Light Through the Lens…” and in doing so I keep his memory alive.

Dad did not leave us rich with money, or objects.  He left us rich with visions and memories.  The former keeps you satiated for a little while.  The latter can keep you fueled forever.

The last gift Dad left for me, was one I did not see coming.  In the weeks preceding his death it had become apparent to me that there was a specific incident in Vietnam that clearly should have warranted him a Purple Heart.  I gathered data for him, presented the case, and even after denials came in, and he had passed, I kept fighting.

Holly, a treasure in Dad’s life and ours, had held onto a list of names and addresses from a Marine Corps Reunion they had attended many years prior.  I reached out to every Marine in that list, and if they were still alive, they reached back.  Over 20 of them.  45 years later.  I grew up knowing Dad had 7 brothers and a sister.  I had no idea of the Marine brothers scattered around the country.

I have had the pleasure of meeting many of them.  And this past summer I brought Meghan to meet a few too.

Alan was the first to answer my letter.  From West Virginia he called to tell me he remembered crossing time with Dad.  He researched the story I told him about the incident.  He found it totally credible, and helped me exhaust every option and every appeal to the Department of the Navy.  Ultimately that battle was lost on what I call a technicality, but by that time I had a friend and a confidant in Alan, previously a stranger.

My Dad, although not loyal to a particular church, by the time he died had a solid faith in God, forgiveness, and an afterlife.

I do not know the book this came from, but I found this among his clippings…

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My Dad in his passing, solidified my relationship with my sister, essentially “gave” me my brother who I had never really “known” but will NEVER let go of, AND, secured for me a confidant in Alan, and gave me the gift of loyalty that Marines save for their own and their families.

He left thousands of photos.  Snipits of his own words, and memories of times that we got it right.

I sometimes always wish that he would answer when I called him on the phone.  But, I know.  I know that he is flying free.  And I know, that while he needn’t be saddled with the cares of this world, that he checks in.  That he is nearby when I need him the most.

So when we are driving in the car and Meghan snaps a shot of a sunrise, or the light coming through the clouds in the sky.  When she sees the beauty of the world around her.  When she looks for the good. When she keeps her friends list short and neat, I see my Dad.  I feel him.  I know he’s right there for that moment.

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Courtesy of Meghan on a road trip to WV to meet the Marines.  Always being guided by the light…

Only when you love deeply do you feel great loss.  They all hurt.  The oldest to the newest.  I can not change the way I love.  When I love it is with my whole self.  Otherwise, why?

This one hurts differently because it took so long to get it right.  But, I rest with the gratitude that we did get it right.  And once you get it right, if it’s truly right, nothing before that matters anymore.

You may never know the strength you gave to help us remain

#Beatingcowdens

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Semper Fi Daddy, Always.

04/18/48- 12/4/13

Loved.  Missed.  Remembered forever.

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“Stay Alert! Delays are Possible!”

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I saw the sign Friday, somewhere along the Pennsylvania Turnpike.  I laughed, in spite of myself.

We were headed on a 400 mile road trip to West Virginia, a trip I was making for the second time, and Meghan for the first.  Last weekend in June to celebrate Alan’s birthday.

As we traveled through the hills of PA, I became somewhat accustomed to shrieks of joy, as the landscape at times was utterly breathtaking.  And, there were cows.  Overwhelming for a young city girl, not given too many opportunities to travel out of a small radius.  The camera barely stopped.


I was thinking about the list of things creeping into the month of July already.  There are 8 appointments and a surgery for Meg already scheduled.  I am annoyed, not so much at the surgery, as I am about the time constantly taken to try to stay on top of this cancer -causing, tumor-provoking, life altering nightmare called Cowden’s Syndrome.

Meghan’s next major procedure is Friday July 22nd.  The pathology on that procedure will determine what, if any, delays are possible in the future.

“Stay Alert! Delays are Possible!”

There wasn’t much traffic on the way to West Virginia.  The trip itself took us a little over 7 hours.  We arrived before 9, and blended right into easy conversation on the porch.  Alan, his family, and some friends, welcomed us warmly.  They greeted Meghan as if they had known her for years, and treated me as if I stopped by every few days.  All of this oddly comforting.  In reality I met them for the very first time last June, and Meghan was meeting them that night.

 

 

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img_7548Yet, we had known each other for longer in ways that matter.  These men, most of them, were Marines that had served with my Dad some 45 years ago in the jungles of Vietnam.  These men knew my father during a brief time in his life that undoubtedly changed and shaped the man I later knew.

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Alan was the first to reach back to me when I sent a letter to Dad’s 1st Amtrac Batallion, 3rd Marine Division brothers.  I was, at the time researching an incident that we felt may have warranted a Purple Heart for Dad.  I sent over 20 letters that week in January 2014.  I heard reply from every living Marine I contacted.  EVERY SINGLE ONE.  They spoke to me, and comforted me.  Those who remembered the incident wrote letters of support.  All told me that as the daughter of a Marine I was one of theirs.  I was to call on them as needed.  It seemed surreal.

But Alan stayed in touch.  Close touch.  We spoke, and still speak via text several times a week, and often by phone at least once a week.  As he worked every angle he could for a Purple Heart that not earned in the technicalities of the USMC, we grew in friendship.  And over time I came to realize that the relationship we had built filled a larger hole than any posthumous medal could have.I do not mean ever to saint my father.  Nor do I mean to make excuses for him.  There were some terribly rocky times in my childhood that can not be repaired.  But, we had time to make peace years before he died, and I started to understand a few things.  A few really important things.

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Now, we were in West Virginia, keeping time with 5 Marines who served with Dad.  They were wounded; physically, emotionally, or both.  They shared stories.  They shared PTSD.  They shared tales of failed relationships, and difficult feelings of guilt.  They verbalized what Dad couldn’t.


And Meghan, oh did they take her in!  One by one, as if helping my father make up for lost time, they spoke and laughed and listened.  They got to know her.  They cared.

Saturday morning Alan’s grandson took time out of his day to teach Meghan to shoot a compound bow.  It was something she had always wanted to do, and circumstances had not allowed.  So, here we were in the hills of West Virginia.  And there was her lesson with the bow.  Arrows on target.  Success.

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A few hours later we were on a farm with the Marines.  We rode a “side by side” through the farm and got to take in views we would not have otherwise seen.  Then, Meghan was invited to shoot a rifle.  With a little hesitation she was guided.  And I watched as her tense face turned into a smile.  There were 4 paper targets 100 yards away.  She fired several times and hit paper repeatedly.  First try, “Oddly relaxing,” and successful.

Maybe because we live in the zone of “Stay alert!  Delays Possible!”  that seizing the opportunities as they present themselves is even easier and more logical.  I didn’t shoot a bow or a rifle, so I can’t be sure.  But, she is clearly not shy about learning new things.

The birthday party ballooned to over 50 people in the driveway and garage of this beautiful home.  There was mingling and talking, mostly with people I barely knew.  Meghan found the time to chat with each of the Marines.  She asked questions.  She got answers.  And, in some cases more questions.  But they each took time to speak, honest, and frank, about their experiences, and about her Grandpa.

I stole away some time to lay on the front lawn and appreciate the flags while enjoying the relative quiet of a “busy” street.


Meghan was met with generosity of tangible items, and generosity of kind spirits.  She now has a money clip and some Vietnamese money from the era.  She also has some special paintings, and a walking stick.  The latter two were gifts from “Uncle Moe,” who was a bit older than the rest.  After 3 tours in Vietnam, and 22 years as a US Marine, he had some tales to tell.


When she  asked what she should know about the Marine Corps., she was told “Brotherhood”.  The simplicity and depth of that answer was playing out over the weekend, and it made sense in concept and in real-time.  These “brothers” trained to never leave a man behind.  And in our case, that included his children and grandchildren.
The weekend went too fast, and before it was time to leave we even sneaked in a visit with some pigs down the road.  City girls have to make the most of things when they are around!

 

Preparing to leave on Sunday was harder than logic says it should have been.  But, we had spent the last 2 days enveloped in a Marine Corps “sandwich” of unconditional love and support.  We know now with these Marines there are no “goodbyes,” only “see you soon!”

As we drove I don’t think either of us spoke for at least 75 miles.  The enormity of it all was tough to digest.

She held the walking stick in one hand and the money clip in the other, wanting to make the weekend longer than it had been.

I cry often.  Meghan, not so much.  Yet, both of us were choking a bit.  It was the kind of experience that changes you.  The simple beauty of just fitting in.  Just because.

“Stay Alert! Delays Possible!”

Not just traffic delays, but real life ones too.  As we began the 400 mile trek home we contemplated Monday’s appointment in Manhattan – a quick toss back into reality.


I pondered whether it was right to show Meghan this world, and then take it from her so fast.  But, I knew it was.  It was a part of her.  A part of her history.  A part of her life.  It was something that I do not fully understand, and yet I needed to expose her too as well.

Dad was not a saint.  But, he loved us. Deeply.  There was never a doubt about that.   Even as he began to heal, he often struggled to find ways to express it.  It was a battle in progress, and he was winning.  But, he was called home before he could quite finish.

So, he left it to his “brothers,” his Marines.

And they did a good job.

This weekend was for the soul.

There’s plenty of time for

#beatingcowdens 

this week.

 

“The Few, The Proud…”

I have a pretty big family.  And among that family I boast countless uncles, great uncles, and aunts and cousins too.

But, I have uncles I’ve never met.  They are brothers to my father who died just about 14 months ago.

My father had 7 brothers and a sister who I’ve grown up alongside.  I have cousins galore, and I love them all.

But there is another part of my Dad’s life that only began to become real to me in the weeks preceding his death.  And that is where I began to learn about these other uncles.

And even today, as I sit, on this snowy day, in my office, in Dad’s chair, and with his old champion sweatshirt for warmth, I have plenty of time to reflect.

We spent today home.  Meghan and I were beat up by a schedule that is beyond our capability to maintain for extended periods of time.  We crashed. Hard.  Sometimes it’s easy to ignore this chronic illness we have.  Sometimes it’s easy to forget about this genetic mutation lying in wait to wreak havoc on our lives.  Sometimes we do such a good job pressing on – getting it all done – that we forget we need to pause.

Cowden’s Syndrome doesn’t cause the fatigue, per se.  At least we don’t think so.  But, somewhere in between the messed up blood counts, and the appointments, and MRIs and scans and trips to Manhattan, the fatigue finds its way in.  Add in surgery on the calendar for me in February.  Couple that with the raw determination of an 11-year-old who is intent on conquering the world – and you have focused school work, swim practice, meets, theater practice, and an epic amount of community outreach work as the date closes in on our “JEANS FOR RARE GENES” Fundraiser at the Hilton next month, and suddenly this exhaustion seems easily explained.

https://www.eventbrite.com/e/beating-cowdens-first-annual-jeans-for-rare-genes-fundraiser-tickets-14130024283

Suffice it to say, a January snow on a Saturday morning was truly a heaven-sent gift for us.

And so after the laundry is back under control, and the house is returned to reasonable order, I get time to sit with my blog – a place I have missed in the chaos of the last two weeks.

And while I have so many family and friends that I love so much, the reality is that when I had things on my mind – intense medical things.  I would always and without fail use Dad as a sounding board.  He would listen for hours with no judgement passed.  He would offer advice when he could, and respect when he couldn’t.

For large parts of my youth Dad was absent, almost completely.  I didn’t understand, but it was what it was.  Sometime after I got engaged in 1999 our relationship began a lot of repair work.  We talked more and more as the years past, but there was always a detachment.  There was a shield.  Even with us.

He settled on Staten Island finally, about 5 years before he passed away.  He lived with his sister, my aunt, and they were good company for each other.  He reached out.  He made an effort.  Slowly he started to let me in.

I was a psychology and education major in college.  I remember the lessons on PTSD, or Post Traumatic Stress Disorder.  Immediately so many things made sense, and I saw my father in those lessons.  But the real moment came when he said it himself during one of our long conversations.  “I have something called PTSD…” and there was an opening to a world I had never been allowed into before.

There was a young man – still in his late teens.  A young man who became a Marine.  One who enlisted with a few friends during a war that I knew precious little about until I began my own research.

Dad

My grandfathers, all three of them had fought in World War II and tales of their service were common.  Never in a bragging way, but matter of fact lessons and experiences and stories, told and shared my whole life.

I studied World War II in school.  I learned, probably not enough, but enough to carry on an intelligent conversation.  But, I as a teacher of young children, had precious little knowledge of the horrors that were the Vietnam War.

My Dad who left for that war never came back.  Sure, he survived treacherous battles in the jungle, but he never came back as the boy who grew up on the local streets with his friends and siblings.  He returned a changed man.

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My Dad gave his entire life for his country, even though his service record bills his active service as about 3 years (of that 13 months were in the jungles of Vietnam,)  He came back traumatized, confused, and unsettled.  One of the talks we had after the acknowledgement of the PTSD included, “I spent the first 40 years after I came back thinking everyone else was crazy, and the last 5 thinking maybe it was me.”

Years of wandering allowed him to make “friends” with lots of people in lots of places.  But in reality Dad was a “man’s man.” It was easy for people to trust him and share with him.  Many people who viewed him as friends knew very little about my Dad the man.

Dad with a buddy in Central Park
Dad with a buddy in Central Park

As he got sick Dad authorized the release of his medical and service record to me.  He knew I would pore over every detail and search and question, and hopefully find answers no one else could.  I searched and I read and I researched and I asked, but in the end the course of events was set to be what it was.  During that process though I read, first hand accounts from my father about things I had never known.

I also got to spend more time in his apartment.  And there were three pictures there.  And Dad would talk briefly about those pictures.  And I would wonder about the other men behind those eyes.  And how their lives had turned out.

Thomson, Merkel & Zeppie close up

After we buried Dad in December of 2013 I continued my quest through our local Congressman to get his service records reviewed.  Still in a deep quest for closure I uncovered some photo CDs in Dad’s things.  Most were of photos taken by him.  One was marked Vietnam.  On it were photos not taken by Dad, of Marines who served with my him.  There were pictures of men, pictures of war, and documents that I had never seen.

Not long after that,  a conversation with Holly, a woman who we all love, who shared a long relationship with Dad, produced a contact list for Dad’s Marines.  The names matched the names on the photos and I set about writing letters to each of them.

I sent out letters to each of them, looking for specific information.  I knew my hope was a longshot.  I was looking for recall of events that had taken place over 45 years prior.  I sent out 18 letters.  I expected I’d be lucky if I heard from one of them.  Why would they answer me?

And that is where I learned of the uncles I never met.

Aside from the 2 Marines who had predeceased my Dad I had responses from all of them.  Every single one of them reached out to me, to offer condolences, to tell a story, and to offer support.  I laughed and cried and healed more during that month than I could have imagined possible.  These men, together for a relatively short window of their lives, were deeply bonded as brothers forever.  These were my “other” uncles.

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And I connected with the men from the photos, “Merck and Zepe” as Dad called them.  To listen to their tales of stories I had never heard, was a gift I could not have imagined.

But there is one.  One “Uncle” who has been there for me this past year in ways far beyond what I could have ever imagined.  “Uncle Alan” had listened to my tears, taught me, comforted me, and supported my endeavors.  His compassion knows no bounds.  He has prayed for my family, asked about my daughter, given me peace on Father’s Day, and has done more for me than I  imagine he will ever know.

he who shed blood with me

Last week I was at the height of exhausted and in my mail was a package from “Uncle Alan.”  In it was the book “90 Minutes in Heaven” as well as a bumper sticker, a T-shirt, and a “US Marine AM-GRUNTS” hat.  I cried.  Tears of gratitude.  For God’s introduction to family I never knew I had.  I cried tears of healing, as I come each day to understand more about my father through these men who call him “brother.”

Dad and I spoke sometimes, towards the end,  about the “whys.”  He wondered why he got to come back and live his life, when his dear friend Tommy was KIA.  He wondered about mine and Meghan’s Cowden’s Syndrome.  He wondered if there could be a connection to his ruthless exposure to Agent Orange.  If somehow that genetic mutation could have arrived in me through him.  He wondered about the possible connection to the cancer that took his life.  We wondered together lots of things we will never know the answer to.

But there  are things I don’t wonder.

Dad’s life had purpose.  It had meaning.  It left impact on everyone he ever loved.  Out of his suffering came great strength, and a deep faith in a good and perfect God.  I don’t wonder for a minute where Dad is now.  I am sure he is flying free in Heaven.

I don’t wonder “how” we got Cowden’s Syndrome.  Cause we have it.  I don’t even wonder “why” we have it.  Because we do.

And who we are develops through our experiences in life.  And while there are some I would have preferred for us not to endure, I don’t wish to change them.  We are learning to be the best people we can be.

And along the way, there are people looking out for us.  “Uncles” we never knew.

Alan signs his letters “S/F” for the Marine Corps motto “Semper Fi” – “Always Faithful”

A permanent addition to my ankle...
A permanent addition to my ankle…

I have not known truer words.

I plan to get to visit “Uncle Alan” in June.  We have lots more to talk about.

Blessing abound if we keep our eyes open.

something to be grateful for

“A tranquil mind is not a little gift…”

Growing up I didn’t spend a lot of time with my father.  Despite some really fun day trips, I didn’t really know him well at all.

My Mom married an incredible guy when I was in high school, and there was this love and support that was there every day.  We got to know each other quickly and well.

And that’s my tale of two fathers.

Ken has been a constant in my life since I was 15.  He loves me like his own, and has treated my as such, without fail, and in all things.  I adore him.

Dad struggled after Vietnam, after horrors that I can only imagine.  He struggled to find his way, and to find the balance.  He married twice, and had three kids, then he spent 10+ years in a long relationship.  He lived all over.  He worked to add his charm and personality to nightclubs all over NY.  He knew how to live on top of the world, and at its bottom.

Several years ago life brought him back local, and for the first time that I could remember, he wasn’t working nights.  We spent more time together.  He came to dance recitals and swim meets for Meghan.  He came to my house for gatherings, and just to be with us.  We liked having him around.  All of us.  Even the dogs.

I got to have two “Dads.”  While one is called Ken and one was called Dad, the terms are synonymous.  Two very different people.   Very lucky girl.

And I used this time to catch up with Dad.  We would talk on the phone a lot, about anything.  Sometimes he would talk.  And when he did, I listened.  When he really talked about old stories I sometimes even took notes.  Because I didn’t want to forget anything.  I don’t think he would have loved that idea.  I suspect he would have thought it wasn’t worth my time.  But, it was.

Lots of times I would talk.  He was a really good listener.  He knew when to interject and when to stay quiet.  He knew when I needed to hear advice, and when I just needed a sympathetic ear.  Sometimes I get overwhelmed.  And I just need to offload, without judgment or solution.  I called every Friday that I grocery shopped.  Sometimes we talked for hours.

And the years saw a transformation as he was being  treated finally for the PTSD that had tormented his every move since the war.  He didn’t talk much about it, but every once in a while… it was my turn to listen carefully.  And I did.  Gratefully.

Then the conversations started to include talk of him being tired.  Looking for energy.  Millions of excuses listed, tried, tossed.  Then there was the jaundice.  And the blockage.  And the pancreatic cancer.  And within about 10 weeks my sister and brother and I said goodbye to our Marine.  “The few, the proud…”  to the very end.

Dad was a philosopher.  Sometimes I was right with him.  Other times we didn’t quite agree.  But, it never mattered.

And in the weeks before his death I became his healthcare proxy – because I do healthcare all the time.  And I got his medical records,and put them in a binder, and Dad laughed because he somehow knew I would – and so did my brother and sister,  and my siblings and I took him to the fancier hospital.  And we asked some questions.  And we talked a lot.  But, it was done.  In the end it was just time for it to be the end.

But I was not, and am not ready to let go.  Maybe that’s unhealthy.  Or maybe that’s keeping the memory alive.  Whatever.

Dad, stopping by?
Dad, stopping by?

It took weeks to clean out his small apartment.  I touched every paper.  I read, and sorted, and filed.  I made more binders, and file folders.  I shredded only with great care at my own dining room table.  And as I sorted I found little scraps of paper.  Little random thoughts.  Notes.  Scribbles of Dad’s.  So I gathered them all together and I taped them onto large sheets and I saved them as a PDF for my brother and sister.  And I laminated the originals for me.  And sometimes on quiet nights, when my mind is busy and I can’t sleep, I peek through those notes.  Almost like a chat with Dad.

Tonight I flipped open to the words, “A tranquil mind is not a little gift.”

And I paused.  And I smiled.  Dad’s mind was not always tranquil.  But in the end it was even through physical torment.  He had lived enough emotional torment to know “A tranquil mind is not a little gift.”

I am a worrier.  Not a shock to those who know me even a little.  But, also not unfair, all things considered.

This was a light week here for doctors.  Only 2 appointments and one argument with a disrespectful office manager that led to a formal complaint.  Oh, and one random really large pathology bill that was clearly not done right.  The appointments were fine.  One was annoying in the leaving at 7 for an 8:30 to be taken at 10:40 to get home around 2, but all things considered it was smooth.  The other was with the gastro doctor who wants another visit to the ENT to peek down at the esophagus.  (If only I could get a scheduler to do these things…) And the fight of course was with my doctor.  The office staff of a vascular surgeon for a procedure I definitely need soon.  I’m in the market for a new vascular surgeon.

But since we had some time, and we were looking for some light entertainment, we replaced the bay window in the front of the house.

So after a slightly tumultuous, but altogether fun trip to Disney, we returned very late Tuesday, slept most of Wednesday.  Did lots of laundry, sent my husband to help out at my sister’s on Thursday, and Friday got ready for the new window.

Not that we WANTED a new window.  We just bought the other one 14 years ago when we moved into the house.  But about 2 years ago there was this little black spot that kept growing.  And we called the company to look at it, but it turned out there was a class action lawsuit we had to participate in and I filled out miles of paper and it took almost a year to get someone to the house.  By the time they came the little black spot was large and clearly water related.  So the nice man took pictures and the conversation was about replacing the center of the window.  Until they called the next day and said the black spot was in the wrong places, and the window would have to be replaced.  But since the window was over 10 years old we’d get a percentage off the cost for the window and installation.  Um, well that price was so wild we bought the window ourselves.  And Ken and Felix and his friend John got it to our house, and finally Saturday all the planets aligned to put it in.

It was supposed to be a half day job.  It was supposed to fit right in.  And Felix, and Ken, and John, and Bobby, and Brendan worked their bottoms off.  But, there was some cutting of walls, and by the time it was all back together on the outside it was well past 11 pm.  That wasn’t the inside.

bay window

bay window 2

I like the house neat.  Actually I need the house neat.  And you can tell me whatever you want about how it doesn’t always happen like that, or I have to give it up.  But I can’t and I won’t.  Because it’s a control thing.  I know it.  I’ll own it.  I can not control Cowden’s Syndrome, or any aspect of why Meghan feels cruddy so much of the time.  I can not control random illnesses or natural disasters, or unscheduled hospitalizations and surgeries, or any other obstacle that is going to come into my way.  But, through much experience I have found it markedly easier to handle every single crisis with a clean house.  Something about having order in the home, gives me some sense of peace when the waters are very rocky.

So, at 11 on Saturday night I looked around and began to freak a bit.  That’s when we decided to paint.  It was time anyway, and the house was on its ear so to speak.  So I prepped the room and there was paint.  And the living room and dining room are back together, but the hall needs a coat too… and you get the idea.

living room chaos

Not to mention that a few weeks ago Meghan began the move from her room on our floor to the upstairs of our cape.  There are two rooms with that peaked roof and lots of floor space.  (There have to be some perks to being an only!) She has a bedroom, and a room with a desk, and all the things she loves.  It has taken 4 weeks to clean out and move her, but we finished today.  And as I sat in her room I cried a little.  I remember distinctly being 9 months pregnant and crying in that room (see a pattern?) I was so scared.  I was right to be scared.  Some scary things have happened in the last 11 years.   This time I know the move upstairs will be far less painful than the one she’s sure to make just a few short summers from now.

megs empty room

It was a good time to move.  Junior High starts in just a few days really.  A whole new school.  A new chapter.  Turning point.  And as she decided what to keep, toss, and donate, her personality began to shine through.  With just a few pictures left to hang, she has created an atmosphere that is representative of her.  Now to keep it clean and clutter free… 🙂

But nothing is without event, and there is no time when I am fully at rest, as I frantically tossed my flip-flops off when I heard her cry out,” I NEED YOU!”  I arrived at the top of the stairs to find her crouched over grabbing a leg that has been giving her trouble for days.  One too many trips up the stairs, or on the floor sorting things?  Who knows.  Just like the headache that’s been around one day too many.  Sinuses, allergies?  God, I hope so.

At some point I’ll have to go to sleep tonight.  And tomorrow will be for more appointment making, and dealing with random bills.  The side of the house is littered with trash.  There are 10 bags being donated Saturday morning.  The clutter and dirt are disappearing simultaneously – with LOTS and LOTS and LOTS and LOTS of work.  But my sanity is being restored.

And while this is far from how I would have chosen to spend this week – so close to the end of summer, Meghan got some time in with some friends so it was in fact a success.

So much flux.  Moving Dads things in earlier in the year jostled the basement.  Moving Meghan upstairs caused some purging.  And slowly everything is coming together as it always seems to.

I think of how many times I would have called my Dad this week.  The number is too high to count.  I miss him every day.

He told me once to keep writing, to just keep letting it all out no matter what I thought of it.  So I do.  And I think about how he would have respected my need for order, while encouraging me not to sweat the small stuff.

Tonight I think calls for a glass of wine, and some reflection.  Gratitude for an almost “normal” week with largely “normal” problems.  Feeling grateful that my mind, while always a flutter, is somewhat tranquil, and…

“A tranquil mind is not a little gift…”

tranquil mind

Thanks for the chat Dad.  I miss you. A whole lot.