Live Deliberately

Live deliberately.

From time to time, as I am working hard to get out of my own way, the words of Henry David Thoreau creep into my subconscious.

thoreau-i-wished-to-live-deliberately

 

Live deliberately.  On purpose.  With a purpose.  With goals.  With faith.  With belief that it all matters.  Not just in this world, but in eternity.

There are countless things in this life that are running out of control.

outofcontrol

 

Last week in church, I held the hand of a woman who is trying to establish her life here in the United States while her family originates half a world away.  I know very little about her, but I cried with her as she was enduring the loss of 6 family members who had all died in a car accident.  Out of her control.  Immeasurable pain.  No words.  Just prayer that she arrive safely to be with her remaining family.

Then there is my internet friend in Australia, whose daughter has endured more brain surgeries than I can count.  This week things went badly.  The surgery was aborted.  They had to make a new plan.  Her daughter- beautiful, 20ish, and full of life.

And another story I follow closely, of an acquaintance whose mom became septic in December after routine surgery.  The trials cause my heart to ache.

We could all list stories here.  Heck, I could go on for pages, the old friend whose brother is battling cancer… and so on.

I could fill this page with the struggles of my daughter this week.  Battling the demon that is Cowden’s Syndrome – and whatever else has crept into her body to accompany it.  I could write about the nights spent holding, and wishing, and praying that the pain be gone, or that God help us make some sense of her agony.  I could continue in frustration about the thyroid hormones all askew.  And the general lack of knowledge that greets us at most facilities.  But I won’t.  At least not today.

Today I am reflective about Thoreau’s words.  Today I am thinking about what it means to live deliberately.

I can not control tragedy.

I can not control pain.

I can not control sickness.

I can not control sadness.

I can not control life’s twists and turns.

I can not control the course of Cowden’s Syndrome or any other aspect of our lives.

No matter how badly I want to.  I can’t.

And, I also can’t make sense of most of it.

So, I have a choice.

I can sit here and mull it over.  I can feel everyone’s hurt and pain.  I can reflect on the unfairness of it all – or I can live deliberately.

I choose to hug my husband.  Because I don’t do that enough.

I choose to rub a dog’s belly.  Because it’s good for both of us.

I choose to eat well, and get and stay as healthy as I can.

I choose to be involved in passionately sharing my love for good nutrition and the products helping me find it.

I choose to take a deep breath when I am stuck in traffic.

I choose to deliberately try and turn lemons into lemonade.

I choose to use my grief over the loss of my loved ones, and channel my energy into the most positive outlets I can find.

I choose to get involved in raising awareness – of Cowden’s Syndrome and other RARE diseases.

I choose to get involved in things I feel passionate about, and not in things that bring me down.

I choose to advocate tirelessly for my daughter, and any other that I can help along the way.

I choose to always make sure I have an extra spoon for my daughter – or a friend in need.

I choose to laugh – at myself as needed!

I choose to pray.

I choose to be a friend.

Because to live deliberately doesn’t mean life will be easy.  It doesn’t mean life will go well, or the way we want it to.  It means making a choice to find what you can, dig deeply for the beauty that is abundant in the joys, but also hiding in the sorrows.

To live deliberately doesn’t mean I won’t be sad, or mad.  It means I will have ALL the feelings – on purpose.  Because to truly appreciate life I must experience all things.

happiness is a butterfly

 

I choose to do one thing I enjoy every single day.

And today I choose to take a walk.

How will you live deliberately today?

 

Freedom IS NOT Free!

This Memorial Day, re-blogging my own sentiments from Veteran’s Day last fall. This Memorial Day I remember 2 grandfathers, and my father. All veterans who are forever with us in spirit. Their sacrifices never forgotten.

beatingcowdens

When I taught Social Studies I most enjoyed the curriculum that allowed me to teach about the United States.  It made me sad on Friday to overhear conversations about this upcoming weekend, and never once feel there was an understanding of Veteran’s Day.  When I was a fifth grade teacher the children wrote about their “Rights and Responsibilities” as American citizens.  That was a long time ago.

I was raised to answer the question, “Where are you from?”  with, “The United States.”  Growing up, that aggravated more than one person who was looking to learn where my ancestors had traveled from to arrive in America.

Precise language.  They learned to ask the question they wanted to know the answer to, or not to ask.

veterans day 4

I am the proud daughter of a Vietnam Veteran, and the grateful granddaughter to 3 WWII veterans.  Although 2 of my grandfathers are no…

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“Dear whatever doesn’t kill me, I’m strong enough now. Thanks.”

I needed today.  For so many reasons.

Even thought Meghan had 2 appointments today – 11:15 and 12 – it was a good day.

We all slept.  Late.  All three of us.  I mean 10:00.  A good sign that we – all three- are shot.

IMG_0423

I mean, not a whole lot changed from yesterday, in that it took a full 10 minutes before Meghan’s pain subsided enough for her to walk.  And she was sensitive to the touch, so it was even hard to rub her.  But everything is a little better at 10 AM.

And there was the Isagenix shake – blessed by her GI doctor, back in the mix made with blueberry and coconut milk – that went down smoothly as she took the new regimen of pills.  I finally have a doctor who understands quality nutrition, and who “gets” that you can be sensitive to one type of milk protein and not another.

meghanleigh8903.isagenix.com
meghanleigh8903.isagenix.com

And after the appointments, even though I got the frustrating news that the “it’s broken, it’s fixed, it’s broken, it’s fixed” 1996 Saturn has likely advanced to “deal with it – it’s done” status, it was still OK.

Because we got home, and then Felix made lunch.  I stayed home with Meghan and her “better but not gone” stomach pain.

After that he took the working car to get the wood for the deck railing that has completely rotted out.

No one can really explain that – but we are kind of used to it.

The deck – pressure treated wood – was put together between 2000 and 2004.  By all accounts it is falling apart.  And its not from faulty construction.  The base is solid.  The center is stable.  But the galvanized screws are literally wasting away – and the wood, especially the rails, is rotting.  Maybe it’s too much sun.  Maybe it’s a stain product we used early in its life.  It really doesn’t matter.  It’s done and has to go on the budget list for a full replacement in the near future.  But for now we patch.

Triage.

triage

The bay window wins.  Installed in November of 2000 – on my birthday to be exact- the lower left corner of the center window has rotted out completely.  The entire window – hole in the house and all – needs to be replaced.

So while Felix was getting the wood, he priced the window  Tonight we have to do some comparison work.  Then the order has to go in.

But this afternoon I sat still.  For a few hours.  And I really, really, really liked it.

It’s easy to feel guilty.  That there are things that need doing.  There are people who could use our help.  And there are people who need to be visited.  And there are phone calls that need to be made.  But, last week my Mom told me if I didn’t take some time for myself I might lose my mind.  She’s right.  Although I could say the same to her, and most people I know.  It’s hard for any of us to just stop and sit still.

I haven’t written since Monday.  The arrogance I encountered that day kept me stewing for most of the week.  And… I don’t think I’m over it yet.  But I wanted to pull my thoughts together and go at it with a clear head.  But if I keep waiting for a clear head I may have to stop writing forever.  Because the pain my child endures – regularly- is horrendous and worsening.

If the purpose of this blog is to create a chronology of our experience with Cowden’s Syndrome – then it all has to be shared.  The good, the bad, and the arrogant.

A friend who endures more than her share of struggles with her children placed this on my wall this week.  I can’t tell you how many times I laughed out loud.

what doesnt kill me

 

Tuesday I called the surgeon’s office after school to inquire about the sonogram.  He spoke to me – to tell me that there is absolutely nothing wrong with her neck.

Insert sigh of relief here, right?

So I said thank you, and requested a copy of the report.  It was to be emailed to me within 10 minutes.

And while I was processing the conversation I had with the surgeon, I was contemplating what I would see on the report.  You see, the local sonogram bothered the surgeon.  So when we went to have it done I watched the screen like the hawk I am.  I watched every measurement, every angle for 30 minutes.  I SAW the exact dimensions from the local sonogram recorded.  And yet the report was the most incomplete one I have ever seen.  It simply said “normal” several times.  It was contained on one sheet of paper, unlike the three I had become used to.

I wanted to be relieved so badly.  I wanted to take a breath and say “whew!”

But I feel the lump in her neck.  And she feels it.

What I needed was a doctor to say, “It’s there and it’s fine.”  THAT would have been OK.  THAT would have settled me down.  But, to say it’s NOT there….  THAT leaves me with a whole other set of unsettled nerves.

And then the phone rang.  Again.  And it was the surgeon’s office.  His secretary told me we needed to go back for a follow up.  I was stunned.  And perplexed.

Why a follow up?  He just told me everything was fine!

The doctor just wants to see her one more time before the summer.

This from the same surgeon who three visits ago NEVER wanted to see us again.

So I set the appointment for June 16th.  And I wondered really what I am supposed to think.

So I got the number for medical records and I got a CD of that exam placed on CD.

I’ll bring the CD with us for the endocrine consult at ANOTHER hospital on June 12th.

And this isn’t even the pressing problem right now.  Or at least we don’t think so.

The next set of thyroid labs are going to be next week.  We need to see if this new dose is making ANY difference in her thyroid hormone.  If it is, well great.  And if it isn’t… someone needs to start figuring out what’s going on.

There is pain.  All the time.  Terrible pain.  Worse when she wakes up.  And, when she tries to walk, up the stairs.  Or down.  Or if she tries to lift something.  Or bend to pet the dogs.  Or run.  She made it through 18 minutes of swim practice on Weds.  Then I had to help her get dressed.

The pain varies in intensity.  But it doesn’t leave.  And she is frustrated.  And frightened.

Holding my head in her hands, looking me right in the eye, I received the admonishment a few days ago, “I am telling you I can not do this forever.  I can handle this pain a bit longer, but you NEED to help me.  I CAN NOT do this forever.”

worried mom - FBI

No pressure.

I get it Meg.  I get it.  I don’t really get your pain.  But I get the urgency.  I am all over it.  Trust me.

But that kind of pressure will wipe you out.

The GI on Weds. was happy with her progress.   The pathology showed cellular changes all through the GI tract.  She told us of the spot in the stomach she chose not to biopsy because it bled as the scope passed over it.  She gave us the “reflux” diet.  She reviewed medication and supplements.  She made sure I have an ENT appointment – for June 3rd.  She things the upper esophageal damage is caused by a chronic post nasal drip.  And maybe “fingers crossed,” that will be the throat clearing too.  Because if not there is another diet – with more restrictions on the horizon.  But we can’t race.  We will see her in the beginning of July.  We are clear on the directions.  Especially the one that said, “no pain medicine by mouth.”  The damage done by 4 years of NSAIDs will take months to reverse.  If we are lucky.  Her Cowden’s Syndrome cellular overgrowth reacted to the insult by thickening the esophagus at spots, inflaming the stomach and causing a real mess.

That doesn’t leave a whole lot of options.

So from 200mg a day of a strong NSAID to nothing…

celebrex100mg

I ordered some herbs.  Some that have anti inflammatory properties.  I have read and researched them and have sold them to her as the best thing since Celebrex.  They will be here tomorrow.  Let’s all pray I am right.

Some people think she exaggerates, because there are glimmers of smiles.  There are times when she laughs.  There are people who want her to feel better just because time has passed.  Trust me no one wants this more than her parents.

I would not trade her – or a moment of the last almost 11 years, but this constant struggle is wearing on us all.  We are isolated.  Family and friends alike are often unaware of what to say, or do.  We are afraid to eat anywhere other than home, afraid to be too far away in case her stomach hurts, afraid to be away from home for too long because the pain is often too much to bear.  We are lucky, fortunate, blessed, to have each other.  We are acutely aware of the struggles of so many, and we know we are far from alone when we say we are exhausted.

I needed today.  I did random things like taking the 5 gigs of pictures and video off the iPhone.  I uploaded them to shutterfly.  I combined them with the family photos and I placed the first print order since August of 2012.  We are up to August of 2013 now.  You see I used to be all over this kind of thing.  But life… it gets in the way.

And the nicest part about today was looking at the memories.  The smiles.  The happy times in those photos.  You see today I needed to be reminded…

And that is what today was about.

Because next week there is Field Day, with prayers that there can be mobility by then.  And next week there is blood work.  And next week there is swim practice, and so many things that we want to go very, very well.

Today, I needed today.

 

 

The Arrogance Epidemic

arrogance3

Truly. Under diagnosed, and under treated. Spreading wildly. Seems especially prevalent among experienced medical professionals.

Not all are affected. Some are immune. Some resist with all their might.

Some embrace the arrogance. They seem to enjoy spreading it to those around them.

Others hide the arrogance, carefully and efficiently. Until the moment they are challenged. Then they unleash the beast full force.

arrogance

We met again with the thyroid surgeon today. Two weeks ago we requested an appointment because Meghan felt something in her neck. I have learned from experience not to question Meghan. She has proven time and again to have an awareness if her body that defies explanation.

Two weeks ago he felt her neck and declared the lump she felt to be a salivary gland. He said some small lymph nodes surrounded it, but when we came back in two weeks it would all be gone. He said it with a good amount of authority- but not arrogance. He reminded us of her clean pathology report. He directed us not to worry.

And maybe we would have paid it no mind, except that’s not how life tends to go around here.

So, three days after the surgeon declared the “salivary gland” in her neck, we ended up inpatient at a local hospital with an attack of what ended up being severe gastritis.

While they were sorting themselves out, the pediatrician (who is as far from arrogant as they come,) remembered feeling the neck a few days prior. He had deemed it a lymph node, and figured while we were there he’d have a colleague, a hematologist/oncologist give it a feel. She deemed it a lymph node too and sent Meghan for ultrasound.

Just sitting around the hospital with tons of time as they tried to figure out the root cause of the GI pain, we were amenable to a neck ultrasound.

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Now I am not taking sides- I have experienced great sonograms and horrendous ones- and witnessed them- in the best and worst locations. So I take reports as point of information, and never shun clarification. But this one clearly said lymph node- almost 2cm. Subsequent blood test ruled out the salivary gland theory as well.

So Thursday, after we were discharged I contacted the surgeon’s office. We had an appointment today, Monday the 19th. I spoke to the staff. I sent the ultrasound report. I asked them to schedule a sonogram at their facility for us to compare the one we just received. I figured we’d see the doctor and then have the sonogram.

Except as we entered the exam room he was agitated. Looking at the ultrasound report clearly for the first time, he said,”this must have been taken before the surgery.” Seeing it was Meghan’s report I interjected- “No it was taken Thursday the 8th.”

arrogance2

Enter arrogance. I swear his whole demeanor changed and it was like the arrogance bubbled up from his toes.

Now I will be honest- I don’t have a history of playing nice in the sandbox when I am pissed, and I don’t do arrogant well.

So, I may not have been the sweetest. But two weeks ago he was very concerned if she’d had fever, or vomiting. He made it a point to weigh her. Now- she spent 6 days in the hospital and no scale? Somehow I let that go.

What I couldn’t let go was his statement that there was nothing in her neck that was enlarged. See, you can tell me there is nothing to WORRY about. That I will take happily. But you can’t tell me nothing is there. Because 2 doctors an ultrasound my daughter and my own fingers tell me there is.

So we’ll get an ultrasound and then I’ll call you tomorrow to tell you nothing is wrong.

From your arrogant lips to God’s gentle ears…

So they had the girl, who just made her way back to school after a week in the hospital wait for three hours. We made it home around 7.

I know the treatment for arrogance when it overtakes common sense. Time to be done with it. A new consult has been established but we wait- so as not to cut off the nose to spite the face…

In the mean time I know we are not the only ones. There are so many good medical professionals. There are so many who take the time to think, and care, and treat. And then there are others.

The problem with Cowden’s Syndrome is the sheer numbers of doctors we see. The problem is hard to avoid.

Plus- as my grandfather once told me- I can be a little difficult to work with.

It’s all about my girl and whatever she needs….

arrogance (1)

The Spoon Theory

While we were in the hospital last week, a good friend, who is chronically ill herself, sent Meghan a very interesting article.

It was about “The Spoon Theory,” and explained chronic illness from the perspective of one who lives it every day.

hopeful spoon

Meghan being incredibly literate, and a master at figurative language, picked up the analogies quite quickly, and while the author wrote about lupus, a disorder Meghan does NOT have, she found the text and related analogies very meaningful.

Our dialogue this week has already begun to include questions about how many “spoons” she has today.  As someone who lives with my own share of issues, but none as severe as my daughter, this has opened up communication in a fantastic way.

The author has copyrighted the story, so I have permission only to link you to it, but I encourage you to give it a read.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

And thank you my dear friend for sharing.  Thank you.

Glorious Unfolding

Lay your head down tonight
Take a rest from the fight
Don’t try to figure it out
Just listen to what I’m whispering to your heart
‘Cause I know this is not
Anything like you thought
The story of your life was gonna be
And it feels like the end has started closing in on you
But it’s just not true
There’s so much of the story that’s still yet to unfold

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding…

Steven Curtis Chapman

 

I believe in God.  I believe in the power of prayer.  I don’t believe in a predestined life, but I don’t believe in coincidence either.

This song was playing in the car last week one night.  Meghan was having a tough time of things, and I had gone to clear my head.  When I came home she was still awake so I downloaded it to her Ipad.  We laid together in her bed and held each other.  The tears flowed.  The comfort of each other, and the comfort of the knowledge that we were not alone – not abandoned – ever – eventually allowed her to rest.

The song is in her playlist for “bed.”  It is a beautiful compilation of songs with a purpose.  And as I sit, in a dark hospital room, on our 6th night here the songs play in the background.  Their messages soothing for my tired soul.

I didn’t want to be here.  I mean not in any hospital, but especially not in THIS hospital.  Somewhere along the line I had decided that I would NEVER want to be HERE.

Well that was my first mistake.  Cause really, it’s not up to me.  And that is a hard reality to accept.

I-plan-God-laughs

The pediatrician works from here.  They respect him.  We adore him.  He loves Meghan like a granddaughter.  She was really sick.  If I headed anywhere else I would have been flying blind.

They moved at a pace I sometimes felt was too slow.  But, I as an anxious Mom, am in no position to judge pacing.

There were staff I could have done without – so I excused them from our room.  But not most of them.  Most of them have been kind and compassionate.

Being local allowed for FAMILY and FRIEND visits, and even a visit from our pastor, which mean so much to Meghan on really long days.

The tests were run one at a time, but they all mattered.

Once they realized how much the IV – and all its complications – caused her grave anxiety, they took extra care.

The dietary team has done their best with a complicated kid.

The GI doctor has been thorough, professional and meticulous.  She had read about Meghan and about Cowden’s.  She TALKS to the pediatrician, and our hematologist in NYC, and the ENT we will soon see.

The lab tests were all inconclusive.

The sonogram didn’t tell us anything.

The CT scan was essentially normal.

The medications, continuously adjusted, have provided little relief.

confused-face

So as we prepared for the endoscopy we were anxious.

See, you never WANT anything to be wrong.  But then there is a point where you KNOW something is.  Then you worry about finding out what it is, or NOT finding out.  It’s hard to know what to be more worried about.

Heading into the test today we were both anxious.

They say a picture is worth a thousand words.

We have pictures now.

Pictures of a GI tract so damaged by SEVERE Gastritis that it will take months to years to recover it.  She has damage from the top of her throat straight down into the beginning of the small intestine.

Inside the stomach is evidence of ulcerations.  Many.

The esophagus that should be smooth – a mess of bumps and sores.

Remind me to NEVER EVER EVER doubt her tolerance for pain.

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend 🙂

The pictures make me ill.  Because they are evidence of MORE suffering in my young girl.

To her they are vindication.  And that makes me sad too.

She hurts every day.

She says it.  And I tell her I get it.  But I don’t think I do.

Pain like THAT has to be isolating.

Because every day she has to get up and function anyway…

And not too many people her age would even try to relate.

The GI told me she sees damage like this “every once in a while” in patients, but they are always 50 and older.

She told me the biopsy will likely show it to all be medication induced.  The medication I have given her for years.  The miracle drug that kept her mobile.

We will wait until next Wednesday in her office to look at the pathology, and to review every prescription and supplement that crosses her lips.

In the mean time there is medicine to control the spasms in the stomach every 4 hours.  There is medicine to try to control the acid so maybe she can start to eat.

There is more time off from school.  At the tail end of 5th grade.  When the days are supposed to be fun.

 

There are MORE dietary restrictions.

But somewhere in the pain is vindication.  For the girl who knows her body better than any doctor.  There is proof.  There are pictures.

Wishes 1

But I don’t believe in coincidence.

This is her second GI related hospitalization since her thyroid was removed.  That’s weird.

Her thyroid numbers are NOT normalizing.  So she has been “hypothyroid” for three months.

I mentioned it a few dozen times this week.  No one bit.

I’ve hit google. And my sister’s friend hit on an article too.  I will keep looking.

never never give up

Somehow this is all connected.  The thyroid.  The medication.  The pain.  The gastritis.  The Cowden’s Syndrome.

But I have to be patient.  The pieces will come together.  In time.  With hard work.  And good doctors.  And prayer.

We prayed today for an explanation.  We asked for an answer to explain her pain.  Our prayers were answered.

perspective

Now we pray for healing.  Of her tired body.  And her tired mind.  We pray for the development of a TEAM of smart doctors who communicate, and we recognize with gratitude it all began where I never wanted to be.

There is work to be done.  There are more concerns to be addressed.  The road will continue to have bumps and twists and turns.

But somewhere along the path there is time to be grateful – for the GI who trusted her gut and did the scope TODAY.  For the anesthesiologist who repaired a failing IV while she was ASLEEP.  For my girl who gets to say “see this is WHY my stomach hurts.”

And that’s all I can process for one very long day.

I think I’ll sleep between the midnight and 4 am doses.

God's got this

The IPad is playing our song…. this is going to be a “Glorious Unfolding.”

Lay your head down tonight
Take a rest from the fight
Don’t try to figure it out
Just listen to what I’m whispering to your heart
‘Cause I know this is not
Anything like you thought
The story of your life was gonna be
And it feels like the end has started closing in on you
But it’s just not true
There’s so much of the story that’s still yet to unfold

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding…

Steven Curtis Chapman

The Productive Struggle

Tomorrow I was scheduled to attend a professional development workshop entitled “The Productive Struggle.”  I was kind of excited to go, as it sounded like quality PD right up my alley.  “The Productive Struggle” is supposed to focus on helping students find their way through the rigorous problems and questions of the Common Core Learning Standards (CCLS.)  And regardless of your opinion on standardized testing, when you break down the basic principles of these standards to their center, there is much value, and much to learn.

As a math teacher I like to focus on having students “Persevere to solve problems.”

productive struggle 3

This is in no way as easy as it sounds.  Children are programmed to wait.  They want the “right” answer.  They fear trying and making mistakes, and learning, and trying again.

As a teacher it is my job to give them the skills they need to solve problems.  I need to make sure their knowledge of math is broad.  I need to tap off the skills their classroom teachers have taught.  I need to set firm boundaries and standards for not giving up.  Then I need to step back and let it happen.

Some days it is like a well rehearsed symphony.  And other days it sounds a bit like an early childhood music class.  But I try, and try again, and we make progress.  Because giving up is not an option.

I have had some time to think, being cooped up here in the hospital this last week.  And tonight it is easy to understand while I am glad to be by my daughter’s side, I am sad to miss any lesson in the “productive struggle.”

productive struggle 2

In many ways it is what is missing in our lives as patients with Rare Diseases.

Follow my logic, using my Meghan as an example.

So Thursday she woke up vomiting bile, and in tons of pain.

Virus?  Nope.

Flu?  Nope.

Terrible reflux, awful stomach cramps.

Appendix? Nope.

Fever, back pain.

Kidneys? Nope.

productive struggle

And so it continued, and still continues.  We have met many nice, well intention-ed doctors and residents.  And we have met a few that should really use their intelligence to become researchers and stay far away from people.

But 5 days later my daughter still sits with stomach pain, difficulty eating, and some pretty significant GI issues.

We have had ultrasound, CT scan, and countless lab tests.  Tomorrow she will have endoscopy at 2 PM.

Some of the medication changes have been beneficial.  And we may see a slight decrease in the severity of her pain tonight.

But, what is the root of the problem?

She didn’t develop GI issues so severe they require a lengthy hospital stay without there being any connection to the rest of her body.

I have a 4 inch thick binder with medical history.  It reads as a chronology of 11 surgeries, several hospitalizations, outpatient procedures and more.  There is lab work, sonograms, MRI reports.  I actively cataloged the whole thing by date.  And I brought it.  And I offered it to the doctors.

And then I took it home.  No one even laughed at the cartoon on the cover.  I’m not sure it was ever opened.

binder cover

See the problem we have, Meghan and I, and so many others, transcends Cowden’s Syndrome.

The problem is that most practicing doctors have never encountered, experienced, or worked through the “Productive Struggle.”  So when a tough case hits them – they only do what they would normally do.  And when all those tests are fruitless, instead of thinking outside the box – they assume OUR box is broken.

Meghan and I went through the chronology of the last year together last night.  We spoke about the AVM on her hand.  We continued through the MRIs that exposed her to extreme amounts of gadolinium.  We talked about the two rounds of heavy metal chelation, and how even though she excreted significant heavy metal, the rebound effect triggered crippling migraine headaches.  We recalled the neurologist, and the instant diagnosis of migraine without much history, touting them as “very common.”  We remembered another MRI to make sure the brain was clear.  We talked about the medicine for the migraines and whether it really worked, and how it kept getting raised every time she had another headache.  Raised, not changed.  We talked about the tickle in her throat that started in November, and the neurologist’s flippant remark that it might “just be a tic.”  We talked about the neurologist telling us to increase the Celebrex to stop her last migraine – which it did, but it was never his drug to change to begin with and he never consulted the prescribing doctor.  We talked about the thyroid nodule, and the subsequent biopsy and thyroidectomy.  We talked about the surgery and the hospitalization that followed with GI issues in February.  We spoke about the throat clearing “tic?” that we had hoped would resolve after the thyroidectomy.  Then we spoke about thyroid hormones, and what having a body in a hypothyroid state for months can do.  We spoke about the ENT and his determination that there was inflammation in the nose.  We discussed his nasal spray and admonition to double the reflux medicine.

And then, after ten minutes of talking out the medical highlights of the last 10 months we realized NO ONE had asked about any of that.

It was like she is here being treated for a totally separate problem as a kid who “happens to have” Cowden’s Syndrome.

So they order their tests.  One at a time.  And they watch and wait.  And we go for ultrasound and CT scan.  And we change-up some medications.

But no one asks what the effects will be of her stopping Celebrex.  No one asks why her body required such a dose, even as I start to see the initial effects of the NSAIDs  being totally our of her system.

They come in and tap her belly.  It still hurts in the same spots.  But that’s not what they want.  They did what they know.  Now they want it to be better.

I have to be here with Meghan tomorrow, but there are a few of them that could stand to attend the PD on the “Productive Struggle.”

Goodness, work for it people.  It’s not always easy.

But she’s young.  And she’s bright.  And she’s frightened.  And she’s worth it.

You Never Know How Strong You Are Until Being Strong Is The Only Choice You Have

 

Motherhood

MOTHERHOOD

I’ve only been a mother for less than 11 years, but I have been shaped and molded by some of the best around.

At 40+ years old, I can still boast THREE Grandmas that have all been a huge factor in my life.

I have my Mom – my hero.

And, I am friends with some of the best Moms in the business.

Not to mention – I parent a pretty darn smart 10-year-old – who has shared many life lessons with me.

So in honor of Mother’s Day – a most unusual one for me – I thought I’d try to reflect on some things I’ve been taught, and some things I’ve learned all by myself.

1. Motherhood is messy.  Despite the best laid plans, no matter how your child, or children have been brought into this world it is a messy job.  Things don’t go according to plan.  Ever.  So stop planning and stick your fingers in the mess of it all.  Heck – jump right in and play.  Your kids will remember your smile more than your polished table, organized closet or streak free windows. (I’m still working on that one!)

2. Motherhood is exhausting.  Just when you think you have it – something will throw you into a new stratosphere.  You will be tired for the rest of your natural life.   Eat as well as you can.  Take care of yourself.  Try to give up caffeine.  Splurge on under eye concealer.  Then get in the car and head to swim practice, doctor’s appointments, shopping, therapy.  While you are in the car – TALK.  Children in the car are a captive audience.  You can have some of your most important conversations there.  Plus – it’s illegal to text and drive.

3. Motherhood is different for everyone.  Comparisons are just not a good idea.  As a matter of fact – make a habit of NOT comparing.  There is no need to justify having one child, or claim you’re more exhausted with three.  Each one, however the child became yours is a gift to be cherished.  They are not potato chips, and having one doesn’t make it “easy” any more than having 3 or 4 makes it “hard.”  Avoid telling anyone how much tougher it is to have a boy, or a girl.  Avoid generalizing and making excuses.  Just love your child.

4. Motherhood involves paying attention.  Stop texting.  Put down your cell phone.  LISTEN to them.  TALK to them.  You may be very impressed by what they have to say if you get to know them.

5. Children are unique.  Let them learn early to embrace their individuality.  Create an atmosphere of unconditional love.  Build their confidence, and keep them grounded enough not to become arrogant.  Develop gracious losers, and equally gracious winners.

6. Motherhood is like being on stage.  All day.  All the time.  And they watch EVERY thing you do.  If you wonder how they learned that habit – good or bad – look at yourself.  They want to be just like you.  And chances are good they will.  BE someone you want them to be.

7. Motherhood involves worry in a way you’ve never ever thought of before.  That little heart beating outside of your body – no matter how old they become – will always and forever be more important than your own.  You will worry about sniffles, and scraped knees, and heartache, and doctor’s appointments, and surgery, and pain, and healing.  You will worry about doing too much, and doing too little.

8. No matter what you do, and how hard you try, you’ll never have it quite right.  So always do the best you can with what you have where you are.  That way you can rest your head peacefully every night.

9. Teach compassion.  They won’t learn it unless you do.  Teach them that “everyone has something.”  No matter where you go or what you do or who you meet each day – EVERYONE is struggling with something.  Whether it’s physical, mental, emotional, financial, greet every person with the knowledge they are bearing a burden.  Try to frame all of your interactions with everyone around that knowledge.

10.  Motherhood involves NEVER GIVING UP!  Tenacity like you never imagined is necessary to do it well.  When they are down and out and done, look at them and reassure them.  Hold them.  Support them.  Forgive them.  Love them with all your heart.  The returns you get on the best investment of your life are immeasurable.

So as we sit tonight in the hospital, waiting, wondering, and worrying – we are still thankful.  We have so many blessings in our lives.

Take a look at some of the women who helped make me who I am today – and enjoy what’s left of your Mother’s Day.

My Mom.  My first hero.  My friend.
My Mom. My first hero. My friend.
My Grandma with Meghan.
My Grandma with Meghan.
GGMa - a gift we got later in life.
GGMa – a gift we got later in life.
Great Grandma Gen
Great Grandma Gen
My Sisters! <3<3<3
My Sisters! <3<3<3
For those "like a mom" to us!
For those “like a mom” to us!
For those whose children are our Guardian Angels.
For those whose children are our Guardian Angels.
For the one who teaches me every day how to be a better human.
For the one who teaches me every day how to be a better human.
Hospital February 2004
Hospital February 2004
Hospital February 2014
Hospital February 2014
Hospital May 2014
Hospital May 2014
And we still squeeze in some time for fun!
And we still squeeze in some time for fun!

 

HAPPY MOTHER”S DAY TO ALL!!

Passing time….

So here we sit.  Again.  For the second time post thyroidectomy, we are in the hospital. meg hospital May   The girl doesn’t feel well.  She just doesn’t.  End of story.  But, not too many people seem ready to listen until she’s in a full on physical crisis.  Even then sometimes the numbers are frighteningly low. Yesterday she knew.  She NEVER tells me to stay home from work.  She KNEW.  And my pediatrician heard it in my voice.  She was admitted soon after he saw her.  He wanted it to be the flu.  In some ways I did too.  A little Tamiflu and some rest.  Buts she’s negative for flu.  No real surprise.  Too simple a diagnosis for my girl. Since her surgery in February,  her TSH (Thyroid Stimulating Hormone) which is supposed to rest somewhere between 4. and 4.0 has been lingering well over 10, despite numerous medication adjustments. The TSH is supposed to be down regulated when the synthetic thyroid hormone takes the place of the T4 and T3.  Enough thyroid hormone and the TSH decreases.  Not enough and it increases causing hypo (under active) thyroid symptoms which can range from bone crushing fatigue, to generally feeling unwell and a whole host of issues in between. He medication has been adjusted upward with no effect – several times. I know it takes time.  I barely remember my own battle with thyroid hormones over 20 years ago.  The veterans of this surgery tell me 6 months, a year…  I get it.  I do. But then there is the reality of watching your kid feel crappy every day.  The reality of watching her FIGHT with all her might to do the normal things others take so easily for granted.  And then I get impatient. impatient smiley To complicate things it may not just be the thyroid hormones keeping us hopping. That “lymph node” turned “salivary gland” is now back to a lymph node in the neck.  We are awaiting the ultrasound that I feel should have been done with her appointment last Monday. And there is a fever.  She never gets fever.  Not really.  And yesterday it was 102.  Today around 100.  No answer why.  Not even the White Blood Cell Count gave a clear indicator. And the reflux.  Painful.  Like fire. Lack of desire to eat much of anything leads to weakness. fire And the throat clearing.  Reflux? or lymph node? or something totally different? So we temporarily stopped the celebrex to try to solve the GI issues.  The medical equivalent of robbing Peter to pay Paul.  The joint pain – managed for now – is rearing its head. And why does a 10-year-old, with no gall bladder and a week of the worst reflux of her life – with no dietary changes – begin vomiting bile? Maybe just maybe we will meet up with a decent GI.  Girls can hope. So I sit.  We sit.  Waiting for answers to questions.  Waiting for answers to more questions than we will ever get.  But we are hopeful.  Anxious. At least right this minute the worst part of being here is passing the time with the stupid IV.

They got it the second time!
They got it the second time!

State of Mind – Part 2

There is something about sitting in a room full of pediatric cancer patients that numbs you, amazes you, and astounds you all at the same time.

There was a time when the little superheroes, the miracles walking around us, and the significance of it all may have gotten past Meghan.

superheroes

She is older now.  More weathered at 10 than she should be.  She misses nothing.  And to a child who has heard the word “cancer” spoken to her, around her, and beside her, her entire young life, she is acutely aware of its presence in the world.

With Cowden’s Syndrome comes cancer conversations.  Is a little fancier when you describe a “PTEN mutation, as causing benign and malignant tumor growth,” but the meaning is the same.

Anyone can get cancer.  At any time.  And certainly it’s almost unlikely that any of the children we saw today have our “Cowden’s Syndrome”

However since Cowden’s Syndrome, and cancer become so closely married – it is hard to consider one without the other, and days like today are especially draining on both of us.

We left the house at 8AM, and sat in traffic before arriving at our destination, (a route Google Maps tells me is 20.5 miles)at 9:40 – 10 minutes late for our appointment.  We then sat a good deal more, until almost 10:40, with plenty (read way too much) time to observe.

The facility is clean, and neat and tries to be festive.  Children were celebrating Cinco de Mao among chemo pumps, bald heads and IVs.  I watch and try to think nothing.  Because it is fortunately IMPOSSIBLE for me to know how they feel, or what they are going through.  But, an adjacent conversation involving a thin, beautiful, bald 5th grade girl and her dress for the dance was difficult to avoid completely.

We were met with the familiar and friendly surgeon who wasted little time before examining Meghan’s neck.  He felt and thought and asked questions.  “Has she been sick, any fever, trouble eating…?

“No, no, no.”

“Well, I don’t think there is a problem.  I think it is probably OK.  But just to be sure we’ll have you come back in 2 weeks.  If it’s not gone we will scan it then.  Oh, and you should see why her salivary gland is enlarged.  It’s not just the lymph node.”

“With whom would I check that?  Because for 6 months I have been talking about incessant throat clearing and all I get are theories.  The last ENT told me to see a GI.  Have you ever heard them laugh when you bring in a 5 foot 2 100 pound 10-year-old?  I have.  Any suggestions?”

Silence.

“Ok then, we will get you set up with an appointment 2 weeks from today.”

I had come in hoping for an all clear, or perhaps a 3 month review.  2 weeks had its pros and cons, and Meghan and I weighed them, silently and independently as we headed back to the elevator.

We arrived home at 12:20.  Four and a half hours.  Insanity.

This afternoon I was stressed.  Over nonsense.  When I am anxious I have an incredible need to control nonsense.  I have been stressed a lot.  I need a new outlet.  This one is making me not so much fun to be around.

I heard myself today.  My tone, my body language.  All so negative.  Not like me, and not the person I strive to be.

I was brought back on track by my own superhero.  Only the strongest can share what’s on their mind and in their heart.  That’s why I love her so.

hawkgirl

Wise beyond her years.  Worried about things she should never even have to think about.  Yet still able to find the simple beauty in the world around her.

I took a “time out” tonight to regroup.  She nestled up with Daddy.  Warms my heart to see her in my bed.

My nighttime prayers include the many who had their own medical adventures today, and my girl.  That she may know the joys of childhood… and for me, that I will remember to enjoy watching before they pass me by.

childlike wonder