This Matters

A few weeks ago, as we were preparing for World Rare Disease Day, my principal allowed Meghan to speak to my school.  She did an assembly for the entire school, first grades 3-5 and then grades K-2.

In both assemblies she showed her video, although we clipped the beginning from the little guys.

In both assemblies she spoke about Cowden’s Syndrome, following her mission to raise awareness.

Our Student Council actively worked to collect denim as part of a fundraiser for the mission.  They were amazing.

One little girl, our first grade friend Emma shared her journal with Meghan.



Meghan and Emma
                                                     Meghan and Emma

Then she shared the journal with the whole school.  We are so proud of Emma and thankful for her bravery.  It felt really good to know the mission of awareness was working, coupled with intelligent compassion as young as first grade!

We had the fundraiser on the 21st of February.  The $13,000 has been dispersed, but the lessons remain.

Children in my hallways ask about “Meghan” as if she is one of them.  They want to know how she is, and what she’s up to.  A few even ask when she is coming back.  These are the young, bright eyed reasons I love my job.

Plus one more

About 2 weeks ago a young lady sought me out to give this to me.  This was a labor for her, truly a labor of love.  Writing is not easy, but clearly compassion is a natural emotion for her.




We are getting somewhere.  Meghan wants the world to know.  With promising children like this on her side, she’s developing the advocates young.

With much love and gratitude, we remain


Compassion Saves the Day!


I don’t know why I second guess her instinct.  Maybe one day I’ll learn.

We arrived in Manhattan early.  We dropped Mom off so she could get to her appointment.  We parked the car at a better rate than I expected.  We walked a few blocks nice and slow.  And we arrived at our 9 AM appointment by 8:35.  Paperwork completed – we were sent down to the waiting area for MRI.

An empty room, and a few minutes to spare, I stepped into the lady’s room.  No sooner did I get in there than I heard Meghan speak.  “Calling us already?” I wondered.

I joined her in the waiting room and the shell-shocked look on her face was a mix of horror and confusion.

“Mom, I don’t want him to stick me.”

“Relax, you don’t know.  He might be very good.”

“I’m telling you Mom, this is NOT going to go well.”

And, as I tried desperately to calm her rising anxiety, we waited.

We got called back and locked our things in our locker.  The technician sized her up and decided her carefully planned outfit would work and she didn’t need to change.  Then I asked him if I had to remove my jewelry.

“You can not go in.”

Calmly, ” I am sure I can, she has had countless MRIs and I have stood beside her for every one.”

“I will have to ask my boss.  And, we have to see if the braces are OK.”

“But, I told them about the braces when I booked the appointment.”

“Well this is a very strong magnet.”

And with that he led Meghan inside towards the machine and she promptly backed away.

“Mom, my braces!”

To which the technician replied, “You’ll have to reschedule.”

And then the anxiety took hold and my girl began to shake.

“I am very very angry,” I began in my “not so nice” voice.  “You have no idea the amount of planning that went into this, and the amount of worry that has been expended by my daughter.”

“I understand…” he began, in his patronizing, not very helpful voice.

And I honestly don’t recall if he got in another word, because Mamma bear was loose.

mama bear

I can’t even quote myself, because I was that flipped out by this man who dared to tell me he understood.  See,  I can be reasonable.  I really can.  You can tell me you are sorry.  But you can’t tell me you understand.  Because just like I don’t claim to understand anyone else’s life – no one should flippantly tell me they understand.  At least not until they have seen their child through at least 11 surgeries, countless procedures, ridiculous numbers of blood tests, multiple hospitalizations, and countless sub-par phlebotomists.  Not until they have sat awake at night calming their child’s trembling fears by touching them – just so they stop shaking in their sleep.  Not unless they know what its like to have candid conversations about pathology reports and the virtually insurmountable malignancy fears.  Unless they have heard their young girl ask if her children will one day carry this mutation that has caused her so much heartache.  Unless they have heard their 10-year-old consider whether its worth it to have their own children… one day.

See sometime two weeks ago we went for a routine follow-up at the vascular surgeon.  He did a sonogram of the AVM that caused so many years of heartache, and surgery in 2009, 2010, 2011, and has been blissfully quiet since the last surgery there in February 2012.  And he saw some “spongy” spots in there that needed to be looked at.  So we scheduled the MRI, knowing that we “saw this coming.”  The Celebrex had been destroying her stomach and controlling her knee.  The ultimate catch-22.  So the worry was about the MRI, and the needle for the contrast, and the wonder about WHEN, not IF the next knee surgery will be.

And all this was bottled up inside of me and came spewing out at this man who dared to casually tell me he understood what it meant to”reschedule” an MRI that had been deliberately scheduled based on time and location to correspond with a trip to the oncologist, and spare her an unnecessary day wasted at a doctor’s appointment.


And as I cried for a supervisor, Toni came flipping around the corner.  She sized up the situation, gave Meghan a blanket, sat her down, and told me she was going to fix it. And she did.

I have never in my life seen a supervisor in any capacity who was beyond competent, and extraordinarily compassionate.  She got INTO A TAXI WITH US, and took us across town.  She walked us into the facility, the entire time reassuring Meghan that she had a special nurse who would handle the needle.  I saw the look in Meghan’s eye that said, “That’s what they all say.”

But Toni didn’t lie.  Within minutes of walking into the facility we were greeted by Allison, and Manny.  Both talked to Meghan.  They looked at her arms.  They told her a blind person could catch her vein.  They told her it would be a butterfly.  They told her no IV.  They let her pick who would do the contrast dye and did it in such a reassuring way that she knew neither would feel badly if she picked the other.

MRI Dog (Rocky) always helps too...
MRI Dog (Rocky) always helps too…

Then Michelle and Chad made her feel like an old friend.  They were so warm and comforting.  They positioned her just so, and reassured her in such a way that she took this incredible deep breath.  And when Allison came in to give the contrast dye, Chad held one hand, and I held the arm and she never even felt the needle.  Chaos turned into probably the most successful MRI to date.  Sweet relief.

We had NEVER been in a machine like THIS before!
We had NEVER been in a machine like THIS before!

But we left the facility only for me to realize we were now clear across town without our car.  I held my breath and hailed my first cab. (Put that on the bucket list, and took it off in the same day!)

An hour with the oncologist, always plays with my mind a bit, but there will be time to process her recommendations for vigilant screenings necessary with Cowden’s Syndrome.

We left at almost 1, feeling quite like we had already lived several days.  Then there was this matter of the “Treat Shop” on the upper West Side.  I had planned to go because it was so close to the first MRI site… but not too close to our car.  I walked, she limped by the end, and I am sure I will pay for this for days, but we made it.  A small store full of glorious Gluten Free treats.  And there were 6 dairy and soy free options as well.  Heavenly – and my daughter said, “worth the pain!”

treat house

An afternoon playing with a friend from school, and the sound of girls giggling, made the horrendous morning, and the most unforgiving traffic I have seen in recent memory begin to leave my neck and shoulders.  As the tension began to release I found myself reflective.  Hopeful.  But still unsure.

Watching her at ease on the couch I am reminded not to plan.  I am reminded to trust Meghan’s instincts.  I am enjoying the cool breeze, and for the moment the uncorrected mess.

I am grateful for Toni, and Manny, and Allison, and Chad and Michelle.  If only everyone took their jobs so seriously.  Healthcare, and the world for that matter, would be in a much better place.

Even if just for today they made BEATINGCOWDENS a little easier.

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.


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.


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.


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



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!