It’s following me….

Much like the Cowden’s Syndrome that will never go away, that will follow us for all our days, the pile stalks me.  I swear it mocks me.  Sometimes when I am not looking, and other times right in front of me.

In the pile are, well all the things you’d expect in a pile; bills that need paying, junk mail that needs sorting, statements that need shredding, or filing, problems that need phone calls, etc. etc.

The pile used to be in the basement.  But it was dingy down there so my husband bought me a laptop and the pile followed me upstairs.

Since it had no proper home on this floor, it could often be found on the dining room table, or on the counter, or any number of other places.

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My office has been finished.  A bonus to me after Meghan’s big move upstairs.  I have a big girl desk, and places to put all the things I need to manage our house, our doctors appointments, bills, authorizations, and complaints, and my quest to help others find the path we’ve begun walking towards better health and financial freedom.

Slowly I am beginning to decorate.  The curtains and blinds have arrived.  The printers are hooked up.  The electrician I love neatly hid the wires.

The photo albums from years and years of my continued obsession with printing photos even in this digital age, line the wall.

The closet stores years of teaching materials, too outdated to have in my classroom, but current enough that I need to keep them – just in case.

Leaning on the wall to my right is a photo I took from my Dad’s apartment, just sitting there waiting for me to decide what to do with it,  and as I type I sit in his chair.

And, just to my left, as I work diligently to ignore it, sits the pile.  It found its way right into the new blue room with the gray curtains and white furniture.

I don’t like piles.

Partly because they are messy and out-of-order, and as I have said before, far too much of life is messy and out-of-order for me to have piles on top of it all.

Partly, they worry me, as there has been known to be a bill sitting in one of those piles, or a newspaper with a message that needed reading, or this week’s surprise, notification of a car recall.

Despite how many hours I spend working on making it go away, I am at points close to losing hope.

There are times I feel pulled, and stretched in so many directions, that I am quite sure NONE of them is getting the best me.  Especially if they’ve sent notification of anything via mail – because it may just end up on the pile… and then – who knows?

If you’ve been reading for any stretch of time, hopefully by now you know I am not hopelessly out of touch with reality.

I get that there are many demands on all of our lives that sometimes stand in the way of a neat and orderly home.  I really do get it.  And I am trying to find a place where I can live happily somewhere in between.

I am a happily married Mom of one, who, for the purposes of all after school activities, and weekly medical appointments, is single.  My husband works much farther from home than I do, and his day ends later.  End of story.  The afternoons are all mine.  And they work out just fine.  And unlike many couples, we share what we can, and he being a far better cook, prepares something for us to eat.  Quickly.   Before I head out to whatever has the night tied up.  Whether it’s a doctor’s appointment, or spending some quality time with a relative who isn’t well, or attending a meeting, at my school, or hers – more often than not there seems to be something on the schedule every blessed minute.

Which leaves precious little time for friends, and phone calls, and random get-togethers, and fun.  And well, it explains why the pile – although tame at times, never seems to go away.

Yesterday I listened to a 2 hour webinar for a grant I got for work.  But I didn’t have work.  Since it had to be after school anyway I scheduled it then to be sure I’d fit it in. Then I printed letters, and log-in cards for the computer program for the 32 kids across three classes that will be doing it.  And while I am excited to see their progress, I was not excited to be doing that.  Nope.  Not one bit.

And there was the grocery shopping, and the dusting, and the generalized dog fur removal.

And the list and the questions started going like mad in my head,

  1. The dermatologist – why can’t I get that woman on the phone for the appointment for the three of us?
  2. I better confirm the date for our Rare Disease Day brunch in February before we lose it.
  3. How can I figure out how to set up online payment for that?  I really have to check.
  4. Make the appointment about the car recall ( on a Saturday so I can sit for hours since we only have one car.)
  5. And the car needs an oil change and inspection.
  6. What about that car insurance lady who never called me back – got to get on her
  7. And the pictures from vacation – almost 2 months ago…
  8. The outside of the house needs a day all onto itself
  9. And the dogs need baths, badly
  10. What is the real reason Meghan’s foot X-ray looked like that?
  11. Why is one of her feet over 1/2 inch off in size from the other?
  12. What’s with the new knee pain?
  13. When do we have to bring the swollen knee to the attention of the AVM surgeon who said, “as long as she’s not symptomatic?”  Can she last swim season?
  14. Can she handle this schedule?  I mean without getting sick?  Cause she’s close, and there’s a lot going on, but I don’t want to say no to all this good stuff….
  15. And when, WHEN, WHEN….will I finally visit with some friends?
  16. STOP………

My husband sat down with me on the other chair in the office.  The panic was beginning to escalate.

Take a breath.  You need a break.

A BREAK? HOW CAN I TAKE A BREAK? DO YOU KNOW THERE IS LAUNDRY, AND MEDICINE, AND DUSTING, AND BILL PAYING, AND…..HAVE YOU SEEN THIS PILE?????????????????????????????????????????????????????

pile of paper

Sometimes I find the notion of NOT getting things done maddening.  But, if we are very fortunate, we have a spouse, or a soul mate who balances us perfectly.

He knows I need to step away.  He knows I need to visit some long-lost friends.  He also knows I need to spend lots of time with people who aren’t quite well.  And, he knows I need to spend time with MY family.

So today, we went pumpkin and apple picking.

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A nice farm, about 45 minutes from home.  Just our speed.  The pumpkins were kind of “placed”  off their vines, but nice all the same.  The apples were fantastic, and the walking was almost reasonable.  For about 20 minutes.

The the pain started to show in the eyes of that beautiful girl who just wants so badly to do what everyone else is doing.  Walking. Repetitive motion.  Fractured foot, bone chip, or something way deeper?   At that point all that mattered was saving the day.  And there was Daddy.  And his cape.  As he bent over and swooped his almost 5 foot 4, 11-year-old onto his 6 foot shoulders.  And they walked like that for an eternity.  Picking apples.  Chatting.  Laughing.

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And she got down long enough for us to take a few pictures.

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Then, as we walked to the car the knee buckled and that was it.  Back up on the shoulders again.

And even in pain as we got into the car after less than two hours, the proclamation that it was ,”FUN!”  Took some of the tension out of my shoulders.

So we stashed our big girl in the cart in Ikea, even as she told us we were breaking the rules.  And we looked at bedroom furniture for the grown ups, and headed back to drop some apples with the great grandparents.

I had a special place in mind for the 4th mum in a set I had bought at Costco, so after taking care of that, and another special visit, we even watched a TV show together.

And you know the best part of it?

The pile is still in exactly the same spot.  While it didn’t magically disappear, it also didn’t live up to my fears of having it take over the room.  I have to get in front of it to shift my focus to the things I enjoy, and I will get there…

Meghan had a nosebleed tonight.  A wicked one from the days of old.  And the knee never did bounce back.  She’s in our room.  Asleep with Felix.  There will be a spot for me once I have cleared my head.

My heart, as a mom, and especially as the mom of a chronically ill child, will never be a place of peace.  But with work, even with the obstacles, Cowden’s will constantly toss – we can be happy, productive citizens.  This Syndrome does NOT own us.  It takes one hell of a wicked set of stamina to stay in front of it, physically, mentally, emotionally, and in a practical sense too, but we’ve got this.

Thursday maybe the ENT will look down at that damaged esophagus and offer up some good news.

Until then, it is our hope that whatever your struggles, and we know you all have many in your hearts, minds, bodies, and spirits, that you are able to find comfort in those you love, and that even if only for a few hours, the “pile” seems a little less insurmountable.

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Hope…

“Hope” is the thing with feathers

“Hope” is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—

And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—

I’ve heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.

Emily Dickinson

Lots of talk about HOPE this month, as RARE DISEASE DAY approaches.  The phrase “Hope, It’s in our Genes” has become one my family relies on when we struggle.  Hope is complicated.  Or its simple.  I guess it depends on how you look at it.  Regardless, its necessary- for all people at all times.

hope its in our genes

I can not imagine living my own life devoid of HOPE.  FAITH and HOPE work hand in hand here, and at our most desperate hours one is always there to shine a light in the darkness.  I am convinced HOPE is there, even in the darkest hours.  When we look.  Here’s what HOPE looks like at our house.

Hope

HOPE is the kiss of a dog when the tears just won’t stop.

HOPE is a hug, or an,” I love you.”

HOPE is an EMail or a text, or a phone call at just the right time, from the person you’d never expect.

HOPE is believing that it’s all going to be OK.  Somehow – some way.

HOPE is pain relief, even if it’s fleeting.

HOPE is quality Physical Therapy.

HOPE is the friends, (and the people we barely know) who “Care about RARE” because of us.

HOPE is an answered letter from someone you’ve never met, whose willing to help – just because.

HOPE is laughter.

HOPE is medicine that works.

HOPE is butterfly kisses.

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HOPE is the internet, and connections to old and new friends.

HOPE is family.

HOPE is knowing you’re not alone – ever.

HOPE is when that special thing you thought was lost forever… shows up out of nowhere.

HOPE is believing that the surgeon will have the right answer.

HOPE is confidence that you are doing the best you can.

HOPE is real.

HOPE is love.

HOPE – It’s in our Genes!

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WHAT IS HOPE to you?

Getting out of my own way…

I am actively, consciously, deliberately, trying to get out of my own way.

get-out-of-your-own-way

I have hopes, goals, dreams, aspirations.  I love my daughter, my husband and God and my family and friends.

I want to be stellar mom, an outstanding wife, and a good friend.

I want to be a Christian woman who leads by example.

I want to shout from the mountaintops about the organic superfood changing lives in my house, and giving us energy and clarity of mind we never thought possible.

I want to teach people about health and wealth and how they can go hand in hand.

But I am stuck.

Right in the middle of my own way.

there-are-plenty-of-difficult-obstacles-in-your-path

We had Meghan to the neurologist today.  We left Staten Island at 1:45 and traveled the approximately 17 miles to the appointment in Manhattan.  It took an hour and a half.  I just about worked myself into a migraine on the way.

Manhattan-Traffic-Facts

But, fortunately, the torturous migraines of the fall are a memory.  Controlled by a medication I would rather her not take.  Today we got a dose increase, and something  to help her sleep.  It should be noted the ONLY side effect the neurologist would even discuss from the medication was drowsiness.  HA!  Not here.  There’s my Meg… doing it her own way.

This was an easy appointment.  We were home by 5:30 although wiped out by the journey – all of us.  The follow-up is in a few months, the new script is in hand.

They are asleep.

I am sitting at the computer.  Thinking.  Researching.  Typing.  Organizing. Planning.  Attacking everything.  Accomplishing – not so much.

Today I called to reschedule the thyroid surgical consultation.  Suddenly 5 weeks seems like a really long time.  The tickle in the throat is troublesome.  It turns into coughing when she gets nervous, and is only pacified into a tickle by the boxes of cough drops on my counter.  I try to ignore the reality that we both know exists.  I try to tell her it’s no big deal, and to casually ask her to show me where it bothers her.

cold eeze

“It’s not sore till I cough.  It just feels weird – right here.”

And there on the right side of the thyroid is what has begun to feel like a small stone.  I try not to let my imagination get the best of me as I picture it pushing on her windpipe.

“It’s fine,” I tell her.  “We’ll just get the doctor to take a quick look.”

She’s not dumb.  Not by any means.  And that is a good deal of the problem.  Gone are the days when I could lie through my teeth and protect her from the evils of Cowden’s Syndrome – lurking behind each corner, hiding under the bed, and in the closet.  Now the monster is real.  And it gives real life nightmares.

monster-under-bed

So in 2 weeks, on February 6th we will head to Sloan Kettering to meet the pediatric surgeon.  No one can be sure what he will say.  And I am not sure there is a statement he will make that will soothe me or make me happy.

And the waiting game continues.  One appointment down.  Two weeks till the next.  Then on the 11th I have 3 and she has one.  I still haven’t figured if its better to consolidate or spread them out.  They just keep coming.  One after another…

“Beatingcowdens” will suck out your energy if you let it.

But I won’t.  That’s why I have gotten so involved in this superfood, and this fabulous company called Isagenix.  Recently they named their 100th millionaire.  A school guidance counselor from NJ with no network marketing experience.  We three start every day with our shakes.  We use the snacks and the meal bars, and the tea, and tonight they both took the melatonin spray to sleep.  We are feeling better and better.  So in the time I have at night, I listen to podcasts, I learn all I can.  And I try to share with my family and friends that I am finally not that sickly little girl they knew.  I try to share with them the health and wellness opportunities, and the vision for financial freedom.  I am here.  I am ready.  If they will listen.

meghanleigh8903.isagenix.com
meghanleigh8903.isagenix.com

And its a good thing I am a master at multitasking, because there are lesson plans to write – for a subject I love across a LOT of grades.  Trying every moment to be the best I can be.

As I sort through the last boxes from Dad’s apartment.  And I laugh, and I smile, and I cry.  As I make binders of beautiful 8×10 prints I found everywhere.  As I sort through the photos on CD and prepare hard drives for my brother and sister.  And I chuckle at the bills that come in, and I make contact with the members of his platoon in Vietnam, and his old friends – one at a time. Unearthing buried treasure from a man I loved dearly.  Not a saint, but who is?  And so much wiser than any of us really gave him credit for.

And I make list after list of the things I need to do.  In the house, in life, on the computer… Supplements to order, new pants for my growing girl, laundry, and a haircut, and all sorts of other random yet necessary things.

I think about my friends who I love.  The ones I never call, or barely talk to.  The ones who I text instead of calling or visiting.  I think of how busy our lives are… and for what?

Rare Disease Day is coming.  February 28th.  Our school is celebrating.  Meghan is thrilled.  There will be Tshirt sales, and a movie night, and proceeds to the “Global Genes Project.”  It gives purpose.  Hope.  A distraction.

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Somewhere in the midst of all this I have to stop and wonder.  How do people do it?

Our lives have their own brand of busy – a medical type – which may be different than that of my friends, but it bears similarities.  Over run.  Overworked.  Exhausted.  Worried.

How do they get out of their own way?  How do they manage to keep the balance of friendships and “play dates” for adults and kids?  How do they get the laundry and the grocery shopping done, and still find time to play?

I think I am a pretty organized Mom.  But yet – I need to use my time better.  I won’t part with my writing.  That’s therapy for me.

I’ve minimized the clutter in my house (just don’t look in the closets.)  Now its time to minimize the clutter in my head.

Cowden’s Syndrome Awareness

This card was created out of her need to "teach" others about Cowden's Syndrome.
This card was created out of her need to “teach” others about Cowden’s Syndrome.

Rare Disease Day

Doctors, surgery?

Isagenix – health and wealth

Reconnecting with old friends

Making the time to exercise… cause I like it.

FOCUS

Now if you’ll excuse me… I have to find my way out of this maze…

I’ve got work to do!

want-to-inspire-ppl

Hurry up… and WAIT!

Hurry up – and wait.  And wait.  And wait.

I don’t know many people whose lives are not a bit of a rat race these days. We race to school and work.  We race to take our children to the many places they need to be.  We race to shop, and cook, and clean, and wash clothes, and we sometimes even race to arrange our schedule so we can have some time off.

rat-rce

In our house we race.  Gratefully, we have added something fun in the form of Swim Team this year.  There are many weeks there is even time for two practices.  So she won’t be an Olympian.  But some fun is an improvement.

Because without that Swim Team – it was all medical – all the time.

i-love-swim-

Since birth really, as Meghan’s medical history really goes back to the beginning, but especially since our diagnosis of Cowden’s Syndrome in September 2011, we have developed a list of doctors all across the city of New York.  And they all require regular check ups…

top doctors nyc 2013

“Skip it…” whispers the voice inside your head.  “I don’t have time…” “We won’t make practice…”

But “skipping it” is not a luxury we can afford.  Cowden’s Syndrome has robbed us of the luxury of putting it off.  It is the clock that is always running.  It is the reality of my breast cancer – beaten.  It is the “reminder” in my iphone.  It is the spreadsheet necessary to sort out pediatric and adult specialists for just about every body part.

And before we even get to the routine screenings, there is the weekly Physical Therapy, necessary to combat the lax joints, and weak core that leave my girl prone to injury as she tries the most fundamental “kid” tasks.  Thankfully PT is a joy, and she truly loves to “PLAY” with Dr. Jill, but all that love not withstanding – it’s another day during the week scheduled.

There are hematology, genetics, interventional radiology, infectious disease, rheumatology, dermatolgy, neurology, and endocrinology to name a few.  Some are once a year.  Most are twice.  And that’s all well and good if everything checks out fine.  However, the need for testing arises regularly, which leads to MRI/MRA, lab work, repeat appointments….

Last year I tried to get them all done in July.  That was pure indescribable hell and it swallowed our whole summer.  Now, I schedule them a bit separated, carefully attentive to the time frames suggested as optimal to screen for any of the pesky cancers we are prone to.

And, while the cancer risks peak around 40, there are several cancers that regularly strike Cowden’s patients in and before their teens.

So, we schedule appointments after school, on holidays, in the evenings, and whenever we can fit them in.  We often find ourselves racing into an appointment after a long day – only to find ourselves waiting  to be seen.

wait card 1

“Hurry up – and wait.”

Meghan is an outstanding “wait-er.”  Partially because she’s used to it, and partially because she knows it’s necessary.  We know exactly what to pack, whether its homework, or an Ipad, or a book, to keep her occupied.  But she would rather be playing.  Or swimming.  Or resting.  Or crafting.  Or just being a kid.

We find ourselves facing the same problems many other families face – laboring to fit in time for fun.  But it is further complicated by fatigue and a lack of stamina.  She can not walk more that about 3/4 mile without wiping out.  She will, when time allows, sleep 13-14 hours a night.  So we have to always be careful not to push too hard, because the repercussions can be serious.  Sometimes I imagine friends think we make it up.

“Hurry up – and wait.”

And we raced into Sloan Kettering Cancer Center on December 19th after school.  I whisked Meghan out of her holiday party, braved the traffic and rushed into the office in time for our 3:30 appointment.

But some time before we got out of the car and walked into the building, Meghan told me about the “bump” in her neck.  The one she feels every time she goes to put her necklace on.  The one that she thinks is making her cough… that persistent tickle in her throat going back… oh… a few weeks.

So at 4:30 when we were called into the office for the routine endocrinology visit, the one the doctor had told em we did NOT need to have an ultrasound before because things were “stable” he almost immediately zeroed in on the spot Meghan mentioned.  He asked for a tape measure.  His eyes were serious.  He spoke of significant growth.  He said we needed a biopsy.

“So let’s do it.  I am off for 10 days.”

“Well, you know, with the holidays…”

“Let’s hurry up and get it done.  I will take whatever you have.”

And on Friday the 20th when my phone rang at work and I got the news that we were going to first need an ultrasound BEFORE the ultrasound guided Fine Needle Aspiration – I just about went through the roof.  The doctor explained that the radiologist doing the FNA needed a recent ultrasound.  (You mean like the one I had asked for with the December appointment all along?)  I explained I would stand for nothing less than scheduling the ultrasound and the FNA that very minute.  So we did.  Ultrasound December 23rd.  FNA under general anesthesia on December 31st.

“Hurry up – and wait.”

Apparently no one got the memo things have been a bit stressful around here this month.

So we did the ultrasound on the 23rd.  30 minutes with the tech.  Then 15 minutes for the doctor to review it, and another 20 minutes for the radiology doctor to rescan.  Nothing going on on the 23rd of December.  No worries.

“Hey, that’s a lot of nodules on a young lady…”  says the doctor.  ARGH!

So when do we squeeze in something fun?  Something she can say she DID on the vacation?

We made it up to see the New Year’s Eve Ball very early on that Saturday morning.   Meghan trying out the camera her Grandpa Tom left for her when he passed away earlier this month.  Trying to find the time to view her world through a camera lens.  We spent about an hour.  Then we went home.

Photo credit -Meghan 12/28/13
Grandpa Tom’s “smile”

NYE ball familyNYE ball 2013b

There were 2 play dates.  Lovely girls.  So I guess there was success.

And then today.

Arrive at 6:30 I was told.  So we were up by 5, and on the 9th floor by 6:30 – only to find it locked.

“Hurry up – and wait.”

please wait

We eventually found our way to the IV room, and then to Interventional Radiology on the 2nd floor.  The procedure was at 8:15 and lasted double the time it should have.

We left with discharge instructions and word that we SHOULD have pathology by Friday, but maybe Monday.

I may have a few cocktails myself as midnight approaches.  If I stay awake that long.  After all its been a long day, week….

And we know Daddy’s got the New Year’s Eve Ball well taken care of.