Meghan’s Rare Disease Day Video and Speech 2016

This is the text of the speech Meghan delivered at this year’s “Jean’s for Rare Genes 2” Fundraiser.  Regardless of the monetary totals, which will come in the next days to weeks, I can assure you it was a success.

I want to start by thanking you for attending this fundraiser here today.  This is the second “Jeans for Rare Genes, a tradition I hope continues to grow each year.

I knew nothing at all about Rare Diseases until the fall of 2011.  I was in 3rd grade.  I went to a geneticist because I was having all sorts of medical trouble.  He diagnosed me with Cowden’s Syndrome.  A few weeks later he diagnosed my mom with the same thing.

Cowden’s Syndrome is a mutation (a break or a mistake) on the PTEN gene which is a gene that is supposed to keep the body from making tumors.  Basically, when you have Cowden’s Syndrome, which is pretty rare (only 1 in 200,000 people) your body makes tumors.  Sometimes they are benign, and sometimes they are cancer.  It also causes my body to make vascular malformations, like the one in my right knee, that has caused me 6 surgeries all by itself.  That is why with Cowden’s Syndrome we have to be watched all the time.  There are so many doctors, so many things that need to be checked, and scanned and looked at, it can be really overwhelming.

You can’t catch Cowden’s Syndrome, it has to be inherited, like I got it from my Mom.  You also can’t get rid of it.  Once you have it, the only thing you can do is get checked, a lot.

I have had 16 surgeries so far, and I only turned 12 in August.  That doesn’t even count for the doctor’s appointments, Emergency Room visits, scans, and never-ending blood tests.

When I first learned I had Cowden’s Syndrome, I went to a website called the Global Genes Project to learn of facts about rare diseases.  I learned all sorts of interesting, and sometimes upsetting facts.

  • There are approximately7,000 different types of rare diseases and disorders, with more being discovered each day
  • 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the S. population
  • 80% of rare diseases are genetic in origin
  • Approximately 50% of the people affected by rare diseases are children
  • 30% of children with rare disease will not live to see their 5th birthday
  • 95% of rare diseases have not one single FDA approved drug treatment
  • Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease

I started out feeling like I didn’t fit in anywhere.  I couldn’t understand why all these diseases existed and no one seemed to know or care.  I found the “Global Genes Project” motto, “Hope it’s in our Genes” to be a comforting play on words.  I identified myself with the denim ribbon, a powerful symbol of Rare Genetic Disorders.  My Mom’s friend made me a denim ribbon necklace, and I felt like I had an identity piece, something that represented me.

At first I organized an assembly at my school, and in 4th grade we gave out denim ribbons to raise awareness.  In 5th grade we had a fundraiser. We sold some T-shirts, and had a small event at the school.  The money went to the Global Genes Project.

Last year, a charity was created called the PTEN Foundation.  It is the first charity that looks to help people with our specific disease.  They want to create a patient database, so people with our Syndrome can be studied and learned about.  Then, maybe there will be a way to help us. 

As happy as I was about the PTEN Foundation, by this time, I had learned about a lot of other Rare Diseases, and kids, who didn’t have a chance to live and do as much as I can.  I promised myself I would always remember those kids when I did any fundraisers.

Last February, “Jeans for Rare Genes” happened at the Hilton Garden Inn.  I wasn’t sure I could pull off anything that big, but with a vote of confidence from Borough President Oddo, and my Mom supporting my vision, it happened.  150 people showed up, and we raised over $12,000.  True to my word, half of the money went to the Global Genes Project, and the other half went to the PTEN Foundation.

This year, I invited Bob Jackson, my favorite entertainer from Walt Disney World, to come and play piano at “Jeans for Rare Genes 2.”  He is here with us today and I am so excited!  We also have “Charlie Balloons,” back to help us again, and lots of great raffles from generous donors.  This year, I think and hope we can raise a lot of money to send to the PTEN Foundation and the Global Genes Project. 

One of the hardest parts of having a Rare Disease is one I don’t like to talk about too much.  Middle school is tough enough, but when you spend more time at the doctor than at social gatherings, it gets tougher to fit in.  I am glad that with Cowden’s Syndrome I don’t “look” sick, except it makes it even harder for people to understand why my life is so different.

I’ve gained an appreciation for the reality that “everyone has something,” and I work hard at not judging others, because everyone is fighting their own battle.  I want to make more people aware that this is the case, and that is why raising awareness for Rare Diseases is so important to me.

The pressure of life, the surgeries, the hospitals, the worrying, the waiting, and the wondering, has done a lot to make me who I am.  I don’t wish for anyone else to really understand this pressure, but I sometimes wish more people would understand me.

I have met a handful of people along the way, some in the most unlikely places.  These people have provided me support through the pressure, and I am forever grateful.

I know I still have a lot of time to grow into the person I am supposed to be.  I love swimming, and drama and singing.  I do well in school, and I love being with my friends.  I love helping others.  I will continue to search out my “Corner of the Sky.”

As you watch the video I have prepared for you, you will see that despite the pressure of life, I will not ever be defined by my disease.  I am determined to focus on a brighter future, and to channel my energy into making a real difference in this world.

I look forward to seeing what the future hold, and how the next chapter in my life turns out.  I hope to see you at our event next year!

When you’re through reading take the time to appreciate her video, created by herself!

“BE the Change You Wish to See in the World” – Ghandi

be the change

With another fall season upon us, life is in full blown crazy mode.  And, to be honest, we wouldn’t have it any other way.

Yesterday, my 12 year old FINALLY throughly enjoyed a Halloween.  It was such a thrill to watch.  FINALLY, she was able to trick or treat, EAT a few treats, AND keep up with some serious walking with friends.

Of course, she slept until almost 1 pm, even with the time change, and woke up unable to move her AVM knee.  These are the repurcussions we expect.  She is not “normal,”  but when she can pretend for a while when it really counts… well that is a great success.  And even as she lay still most of the day, she smiled.  She sang.  Joy.

Fall is full of things, and so far she’s managing nicely.  With a marking period to end Friday, Pupil Path tells me grades are at an all time high.  Practice 4 times a week has her swim times at an all time low.  And, drama twice a week is leaving hopeful anticipation as “The Wizard of Oz” is soon to be cast.

She is working with me to plan our second fund raiser in February.  We chose a date close to World Rare Disease Day, with the continued desire, and intention to bring awareness to our rare disease, and over 7,000 rare diseases worldwide that affect 10% of the world’s population.  We are acutely aware that to be heard, we need to join collective voices.  Individually we matter little to most of the healthcare system, overwhelmed, uneqipped to diagnose and treat us.  Together is the only way we have a chance.

Last year we raised over $12,000 and donated it to the PTEN Foundation (www.PTENfoundation.org) and the Global Genes Project (www.GlobalGenes.org).  This year we hope to exceed $20,000 in donations.

We have brought in Bob Jackson, a performer from Walt Disney World.  He will be flying up to entertain our guests.  Our whole family LOVES Bob, but Meghan especially will not hear of celebrating a birthday until Bob sings to her.  We’ve spent her last 8 birthdays at Disney.

Here is a youtube video that is a great indicator of the FUN time Bob brings!

We have lined up sound with Partners in Sound, and we have Balloon Charlie returning to also help entertain the children.

We have established a children’s menu in hopes that families can enjoy the afternoon out together.

There will be raffles and lots of laughing.

There will be comfortable JEANS and good friends.

We are setting up a facebook group called Jeans for Rare Genes 2016 Staten Island, and we encourage you to join.

We have tickets to the event available through Jeans For Rare Genes 2 – Tickets and Donations link

Meghan is living life as a 12 year old who just happens to have had 15 surgeries.  She is a 12 year old who just happens to have a Rare Disease.  She is a 12 year old who realizes that as challenging as life is, so many others suffer worse.  She is my hero.  She is MY role model.

Together we will make Jeans for Rare Genes a thrilling success.  Hope to see you there!

Time with
Time with “BOB” our favorite entertainer…

Summer List

september-2015-calendar

I have been walking around all day with that nagging feeling in my stomach.

I have packed my bag, and Meghan’s too.

I have filed, organized, and made lots of lists.

There is a new schedule on the wall – color coded and everything.

The calendar says it’s time, but my heart, and my stomach beg to differ.

Summer was to be about beaches, and barbeques.  It was to be about road trips and freedom.  It was designed for friends, and fun, and get-togethers.

Except that most of that never came to be.

There was that knee surgery in May, that derailed any hope of walking long distances for a while, and thrust us into 2x a week PT.  Which, even though we LOVE Dr. Jill, can be daunting in the schedule.  And, it eliminated most day trips that could easily be taken for granted, if you don’t have to factor in that a walk more than about 3/4 mile is out of the question.

And while that was going on Daddy was rebuilding the deck.  Alone.  For three months.  Every spare minute of April, May and June.  It looks so beautiful.  Maybe next year we will get some people over to relax and enjoy the deck, and the grass.  The new grass, artificial, durable, and a drastic improvement over the old side yard.  Yes, maybe next year.

IMG_4701

We got the pool open the first week in July.  And July had drama “camp,” and I use the term VERY loosely.  And July had swim practice.  And July had doctors, some regular, like PT, others on the 6 month schedule.  And some blood tests, and some ultrasounds, and a bone density test for mom.  I think I stopped counting at 30 appointments.

But, thankfully August had Disney.  And there are few other things that can bring me such joy as a vacation with my family to the “Happiest Place on Earth.”

_DSC5341

And August had it’s own set of appointments, including hand surgery to remove a vascular lesion from her palm.  And setting up the whole wisdom teeth thing for September.

IMG_5056

So it’s easy for me to be sad.  And down on things. Because I want a do-over.  But, I guess that’s normal.  Because most people probably do.

I sat down tonight to get my head clear.  To “flip it,” and get my head and my heart in the right place for tomorrow.  I sat down to acknowledge the many things I have to be grateful for, and the things that went WELL this summer.

reasons to smile

So, in no particular order…

  1. The new deck.  No splinters.  No maintenance.  Pretty.  And finished.
  2. The new grass.
  3. Walking barefoot in my backyard.
  4. Road trip to West Virginia, that I took alone, on a very rainy June weekend to meet some Marines.  Healing help.

    My road trip to West Virginia
    My road trip to West Virginia
  5. Listening to my girl sing.  In pain.  In joy.  In the shower.  In the living room.  In the car.  Anywhere.
  6. Healing progress.  From both recent surgeries.  And the resilience to continue to endure.
  7. Laughter.  Mine.  His.  Hers.  Friends of hers.  Strong laughter.
  8. Disney.  I’d go back three times a year if I could.
  9. Graduation party, bridal shower, and a wedding.   Mom being 18 years cancer free.  Meghan turned 12, and Felix had a birthday too!  We celebrated Pop’s 96th birthday.  Celebrations.
  10. Board games.
  11. Green tea – together.
  12. Trips to Ralph’s.
  13. Watching my all time favorite movie, “Dead Poet’s Society” with my girl.
  14. Nutrition packed shakes, EVERY day.  Even in Disney.  Fueling my body.
  15. Reading a book my friend in Australia wrote about Cowden’s – for all the world to see.
  16. Antibiotics that heal recurrent infections.
  17. Walking.  5 miles a day, most days.  and at least 10,000 steps every day since July 8th.  Goal met.IMG_5094
  18. Last, and DEFINITELY not least, were my walks with Mom.  My healing walks with Mom.  There were so many mornings when she and I walked together, 2 miles, with 2 dogs.  We talked this summer more consistently, and for longer, than we have in a long time.  I think this was one of the best things that happened all summer.  She is a strong lady.  Lyme Disease took a stab at her this summer.  Apparently for the second time.  And she has told it where to go.  So often she is a grounding force for me in this never-ending battle to remain BEATING COWDENS.  I will miss those walks.  They were not just for the FitBit, but so much for the heart and the mind.

    My Mom. My first hero. My friend. We need an updated picture.
    My Mom. My first hero. My friend. We need an updated picture.

And that is just what my compulsive, reflective, organized self needed.

Because now, I feel a little better.  It wasn’t what I had hoped.  There was sadness, and worry. for my own girl, and for so many others.  For adults I love, and for a former student fighting a formidable battle.

But, I woke up every day.  And lots of days the sun shined.  And fun doesn’t have to stop just because school starts.

So as I lay my head down tonight I will do my best to do it with gratitude.  For new days.  For new seasons.  For a job with a kind boss, helpful colleagues, and wonderful children.  For a job that begins new every year.  For the knowledge that every day, every season, will hold blessings and challenges, for us and for everyone.

I wish you all a wonderful fall, but I’m not closing the pool just yet….

Be-thankful-for-the-bad-things-in-life-for-they-open-your-eyes-to-the-good-things

 

Losing Count…

In school I count children.  Religiously.  Especially in September.  I count them in, and out.

I count pencils, to pacify my OCD.  12 to a table.

I count days until appointments, special occasions, and vacations.  I love numbers.

I have a tendency to remember addresses, phone numbers, anniversaries and dates.

So it’s a really big deal in my mind when I realize I am losing count of Meghan’s surgical procedures.

counting

I keep a list in my bag, that I update often.  I have a 16 gig flash drive with a history spanning 12 years in that same ziploc bag in my purse.  But, this year.  Well, this year has been a little more wild than usual.

And every time I say it, I find the old saying, “You ain’t seen nothing yet..” coming true.  But, every year I sit at an IEP meeting talking about discontinuing some services, and we always say, “When she goes a year with no surgery…”

Good thing I’m not holding my breath.

See I wrote, and I think I blogged, TWICE in the last week, that the hand surgery was Meghan’s 13th surgery.  Except it wasn’t.  It was the 14th.

counting 3

And maybe, when I lose count, it’s time to stop counting.  Because they are all starting to blur together.

2004- Epigastric hernia surgery

2007 –  Gall Bladder Removed

2008 Tonsils and adenoids removed

2008 Back mass lipoma

2009 Oral “fibrous polyp”

2009 Embolization (internal) AVM right knee

2010 Embolization (internal)  AVM right knee

2011 Direct Stick Embolization AVM right knee

2012 Direct Stick Embolization AVM right knee

2013 excision of mass from right palm

2014 complete thyroidectomy

Nov. 2014 emergency (direct stick) embolization AVM right knee

May 2015 Arthroscopic Surgery – Right knee

August 2015 Excision of vascular lesion from left palm

IMG_5056

But, just as I think I should stop counting.  Just as I think that this is “normal,” or that these procedures are somehow “minor,” I realize the ridiculous nature of that train of thought.

THIS IS NOT NORMAL.  THIS IS COWDEN’S SYNDROME.  And, BEATINGCOWDENS is what we do, but it is far from NORMAL!

This week, Meghan had a fever blister break out before her surgery.  Maybe nerves, maybe coincidence, maybe a medication screw up.  Whatever.  It reminded me again, that her body is taxed.  It is tired.  I have been hunting through past blood work, another plan in place to try to deal with chronically low IgG levels.

She spent the 48 hours after the “minor” hand surgery with high fever and frightening headaches.

We had to postpone the follow-up to the “real” 13th surgery Thursday morning because she could not get into the car.

No surgery is minor.  And we run the risk of confusing things we are used to with things that are not significant.  And that is a dangerous road.

It is so important to keep validated, as an adolescent or as an adult.  When we trivialize procedures, intentionally or not, we invalidate the patient.  Cowden’s Syndrome patients will undergo insane numbers of procedures, surgeries, hospitalizations and testing in their lives.  They all matter.  Because we matter.  And while we are forever grateful every time a surgery is smooth, benign, and uncomplicated, we are all a little more rattled than we were before.

counting2

So LOSING COUNT, is not acceptable.  It somehow trivializes the nature of what goes on here.

We didn’t get to the beach this summer.  We did get to Disney.  Thank goodness.  Because pretty much everything else we did involved traffic, a co-pay and a parking garage.

We are blessed.  We are grateful.  We are in tune to the tragedies and horrors around us.  But, sometimes it gets lonely.

We miss barbeques and parties.  We cancel at the last-minute.  We rarely socialize.  It’s not because we don’t want to.  It’s because things change so quickly we can not keep up.  And then it looks like we don’t want to.  But, it’s just not true.

We are eternally grateful to the people who reach out.  Just for a minute. Because it matters.

If you’re reading this because you know someone with Cowden’s or a similar syndrome, my advice to you is reach out.  Text.  Call.  Email.  It’s not about money, or grand gestures.  It’s the 5 minutes you spend that will truly aid in the recovery process.

Because recovery is essential.  Number 15 is just around the corner.  And even though that’s a “regular” surgery, I bet not many of us have had our wisdom teeth extracted at the age of 12.

It’s physical.

It’s mental.

It’s emotional.

It does not stop.

BEATINGCOWDENS

 

 

Pause…

Sometimes we need to pause.  We pause only briefly, with hope of it lasting the whole week, and the reality that there will be interruptions along the way.  We pause, knowing that pain is ever-present, acknowledging with gratitude any breaks we are granted.  We pause knowing surgeries will always be forthcoming, but for right now they can wait.  We pause because with the pace of this life it is easy to miss the little things, the important things.  We pause to enjoy noise that is not NYC traffic, or the sound of a doctor’s office.  We pause to quiet the phone calls that need answering.  We pause so we are better prepared to battle this Cowden’s Syndrome.  We pause to remind ourselves of the beauty, within our family, and around us in the world.

_DSC6200
Breathtaking sunset
_DSC5374
Hanging around the hotel
_DSC6212
Friendly EPCOT duck
_DSC5533
Animal Kingdom Safari
_DSC5611
Animal Kingdom Safari

Last week we were in Walt Disney World, in Florida.  It is our favorite, actually the ONLY vacation spot we have ever had as a family.  We are fortunate to have celebrated Meghan’s birthday there for the last 8 years.  Disney is crowded, and hot, and pricey, and all the things the haters of the big Mouse want to say.  But, to the rest of us, there is a magic – a magic that endures regardless of age.  It’s hard to describe it, unless you feel it, but we do.  There is magic in avoiding doctors.  There is magic in eating safe food from restaurants, and having a bakery that even makes cookies, and cupcakes for your gluten, dairy, soy free girl.  So much of what we can’t do during the year is because of scheduling, and food.  It seems silly, but with those obstacles gone, it is a recipe for success.

Even the negativity that tries to get at us, ultimately fails – https://beatingcowdens.com/2015/08/09/theres-nothing-wrong-with-that-girl/

The trip was one of the smoothest we have ever had.  (Aside from me unpacking late the first night to realize I forgot the enzymes Meghan needs to eat!  Fortunately I ALWAYS have extra, and Mom got them overnighted so they arrived in the nick of time Saturday.  Tragedy averted.  Magical.)

175

And I was only on the phone with one doctor.   Once.  The WHOLE WEEK!

I sometimes look at others vacation photos and think it would be nice, and perhaps a lot less costly, to change things up.  It might be interesting to see a few new things.  I would love to travel the country one day.  But, there will be time for all of that – later.  For now it’s about magic, and the treasure of having a preteen who still feels the magic in her heart.

Plus, we have some favorite rides…

She's more brave than me, but we DID it!
She’s more brave than me, but we DID it!

_DSC6230

MK_SPACEMOUNTAINB_7421177837

TWICE!
TWICE!

Some Magical birthday wishes…

Her first
Her first “REAL” cake in YEARS!

https://www.erinmckennasbakery.com/orlando/

Time with
Time with “BOB” our favorite entertainer…

http://www.yehaabob.com/

And a birthday tradition…

A great view…

_DSC5341

Spectacular nighttime shows…

_DSC6093

Some Mom time...
Some Mom time…
Some Dad time...
Some Dad time…
And some time to just be 12, all by herself...
And some time to just be 12, all by herself…

There was plenty of time for me to walk.  And think about whatever I wanted, or nothing at all.  And we three started each day with our Isagenix… (fool me once – but never twice… for those of you who remember last year’s debacle!)

isablender isagenix shake

There were days I felt like I could go on forever…

263

And days to just be a little silly…

266

And as is the case every year when we pull away from our “home” for the week, I find my heart beating a bit faster.  My mind begins to race back on track.  And I don’t really like it.

This has been a wild summer.  One too many doctor’s appointments, too few days of simple relaxation.  And even as I am ALWAYS so conscious it could be much worse, I feel a bit of longing to do it all again, or maybe tack a few weeks on the back-end…

But, time does as it pleases, and eight days from now my girl will be recovering from another hand surgery.

We’ve begun to prepare for fall activities, and we are looking to sure up a date for our PTEN Foundation/ Global Genes Project fundraiser in February.

BEATING COWDENS takes stamina.  Fortunately, we’ve got that.

And even more – we’ve got each other.  And if we pause for no other reason, it is so we NEVER FORGET…

Between us we've got unparalleled strength, and never-ending love.
Between us we’ve got unparalleled strength, and never-ending love.

“There’s nothing wrong with THAT girl…”

To the Young Couple on the Bus this Morning,

You should know that I heard you.  I heard what you said as you glared at my daughter.  I saw you shake your heads in disgust and say, “There’s nothing wrong with that girl, I saw her walking at the hotel last night.”  You seemed proud of yourselves, like you had “found us out.”  Maybe that’s why you weren’t so quiet.  Maybe you wanted the others to hear, and to look at us in disgust as well, while the bus took 4 extra minutes to load my daughter on the wheelchair ramp.

I thought about what you said on and off through the day, and that alone made me mad.  The fact that I even gave you a second thought was so much more than you deserved.

Then we caught the same bus home, and I really struggled to hold my tongue as you went at it again.

But, on the way home, I was less interested in you, and much more concerned for my daughter.  She wasn’t well, again.  And in some ways we are used to it, but it’s never any easier to see.  As magical as it is here, it doesn’t change our reality.

Our reality, the reality of daily struggle with an invisible illness, is with us all the time.  And even though my daughter CAN walk, she is not physically capable of the walking required to navigate the parks.  Maybe its the 6 knee surgeries.  Maybe its the after effects of the thyroidectomy.  Maybe its the low immune subclasses, or the severe GI issues.  She tires easily.  And today, because it’s day three, she is already worn out.  And even with the help of a wheelchair, she needed us to cancel our dinner reservation and get her back to the hotel to rest.

IMG_4867

So, yes.  At the advice of her doctors, and the agreement of her parents, because she NEEDS a break from her life, and EVERY protection to help her feel well, she uses a wheelchair through most of the day.  And every day before we leave the hotel room we say a prayer for all those who HAVE to be in a wheelchair all the time.  We take a moment to pray for their strength and health.

bigger picture

You aren’t the only ones.  There are plenty of others who look at my beautiful girl, and think that this is some type of ploy.  Which would make us pretty sick people.  Because if you really want to feel queasy, push your child around in a wheelchair.  Go ahead.  Try it for a week.  We’d rather she walk.  She’d rather walk.  So sometimes we let her try.  With advil, and about 3/4 mile round trip.  There is ice for the knee, and a shoulder to rub.  The body behaves like one 40 years older.  But, she pushes.  To keep her independence.  To feel normal.

The next time you wait the extra 4 minutes for the bus to load, don’t judge.  Don’t figure you know the who, or what or why, about the person in that wheelchair.  Don’t pity them.  Don’t feel badly for them.  Just be respectful, and assume they fight a battle you know nothing about.

-always-be-kind

If you want to know more about them, ask.  And if you don’t – just walk right on by.  And cherish your mobility.

You just never know.

Sincerely,

The Mom of that Child You Know Nothing About

To the Middle School Girls Who Doubt My Daughter…

July 20, 2015

To the Midle School Girls who doubt my daughter’s medical conditons:

I want to start by telling you, I know it’s not your fault.  You are generally healthy.  You were raised by people who are generally healthy.  You get sick.   It gets better.  You want your share of attention.  You resent that sometimes my daughter needs a little extra help in the halls.  It’s not fair that sometimes she needs to sit out of Physical Education.  You are tired too, right?  It doesn’t seem fair that she needs to leave early from the class right before lunch.  You’d like to stretch your legs too.  Why does she “get” to being her own food everywhere?  And is she really “allergic” to all those foods?  Because she doesn’t seem “allergic,” and why does her food wrapper say “milk” when she’s “allergic to milk?  She must be lying, right? Looking for attention again?  Why does she get to leave early so often?  You’d like to get out of last period too.  I get it.  I understand.  You look at people who look sick, and you are probably really compassionate.  Except now that you’re older, it’s time for me to let you in on a well kept secret.

Not everyone who IS sick, LOOKS sick.

Take a moment and process that.

Now I’d like to tell you a little about my daughter.  The real Meghan.  Not the one you always see, but the one I see.  The one who I have kissed before 13 surgeries, as she left me for the operating room.  The one I have slept beside for nights on end as she gets poked and prodded in hospital after hospital.  The one who has shed tears of pure frustration and anger over the things that have been restricted from her life.  The one who longs for you to understand, but will not talk about it in depth, for fear that she will isolate you, or worse, that you really won’t care at all.

Let me tell you about the Meghan who knows your problems.  The one who genuinely hopes you, and your head cold, stomach virus, sick grandmother, and hurt ankle are all ok.  The one who understands deeply your anxiety about getting a blood test.  The one who “gets it” on levels you’ll never understand.

Let’s talk about the paraprofessional.  While she has been blessed with the classiest, most professional women through the years, do you think for a moment she WANTS to need help?  Do you think she WANTS an adult escorting her through the halls?  Think about that for a minute.  She doesn’t WANT to be different.  Six knee surgeries, and a Rare Disease diagnosis have taken that option from her.

And about the trips to the nurse.  Any idea how annoying it must be to have to detour to a nurse to hand you medication before you can eat anything at all?  Any idea what it is like to never be spontaneous about just grabbing a bite of something?  Because your body simply doesn’t make the enzymes it needs to digest food without help.

Please don’t even get me started on the cafeteria.  In our house her Dad is a masterful cook, who makes eating gluten, dairy and soy free taste fabulous.  But, out of the house?  Not so easy.  You want to know about her allergies?  About how she can be “allergic” to milk and eat a product that contains milk?  I get your confusion.  But, here’s a tip; when you are confused, ASK, don’t assume.  She’ll probably willingly share the reasons with you if you are actually interested.

She spent a large part of her very young years vomiting a lot.  Sometimes so much that she ended up in the hospital.  Her stomach hurt all the time, and she even had to have her gall bladder taken out when she was 3.  She had ear infections all the time and her head was full of fluid.  She didn’t talk much, (I know – hard to believe) because her head was clogged up.  She cried because she hurt so badly.  She was allergy tested for lots of things.   Nothing came up.  Nothing at all.  Then I used my brain.  And my instincts.  And we targeted some foods.

And do you know what we learned?  We learned that without milk, she doesn’t get ear infections.  And she learned how to talk right away.  And her head stopped being so full all the time.  And she could rest.

Then I kept looking.  And I learned that soy, in its purest form, caused a rash all over her body.

And when I took out gluten, slowly her joints began to ache less and less, and I was able to decrease the medication she needed just to walk up the steps onto the school bus.

Are they “allergies” in a technical sense?  No, I guess not. But, they are just as important.  I am forever grateful that she doesn’t carry the danger of anaphylactic shock, but she does have the ability to end up in the hospital from dehydration after vomiting for days when she eats certain foods.  Even strawberries.  Or anything with seeds.  Or anything too greasy.  Or cross contaminated.  (Like last year in DISNEYWORLD when we needed a doctor after a FULL day in the hotel vomiting.)

So the meal bars she eats at lunch, yes they say, “conatins milk.”  But, you know what?  They agree with her.  She doesn’t love them, but she eats them for NUTRITION, so she can function through the day.  The “milk” in there is primarily undenatured WHEY protein from NEW ZEALAND where the cows are GRASS FED and roam free.

Why would she be anything less than honest about not being allowed to have regular milk products?  Do you know she has never had ice cream from the ice cream man?  I have to send her own pizza and chips and cake to parties.  Do you think she doesn’t want the donuts and cookies, and hot pretzels in the cafeteria or at fairs?  Does that really make any sense?  Ask yourself of all the things to be less than truthful about, does that even enter into logic?

And about physical education.  Let’s talk about my daughter trapped in a body that likes to betray the athlete inside of her.  Let’s talk about the young lady who can run like the wind, but might trigger a bleed of the vascular malformation in her knee, and at the very least will pay in excrutiating pain.  The girl who wants to play longer and harder than any of you, but can’t.  The child who craves the idea of just coming in in a gym uniform and competing, for better or for worse, all the time.  But, she can’t.  Because the surgeon said not yet.  And even when she’s able to join in, it will likely be on a restricted basis.  Let’s talk about the girl who won’t run Main Street in Disney because she will have to navigate the parks confined to a wheelchair.  Walking more than about 1/2 mile consecutively is too stressful on the knee.

Oh, and the tired.  Yep, you are tired too.  I get it.  You were up late last night.  Probably watching a movie, or doing something fun.  So you are tired. But, she went to bed at a decent hour.  Hers is a different tired.  Hers is the tired that comes from a body that refuses to accept the synthetic thyroid hormones as normal.  Hers is from a body that makes a hobby out of defying her.  You’re both tired.  But, it’s not the same.  Trust me.

This is the girl who stays on stage during drama even if it kills her.  Even if the pain is at its greatest intesity, because no one has restricted her there, yet.

This is a girl who gets to swim practice as consistently as she can, so that she can feel, “normal,” while she pushes through the water.  This girl has to go to PT 2x a week just to get into the pool.  This is the girl who overcame emergency surgery in November of last year for a bleed in her knee to qualify for Silver Championships 2 months later on raw nerve.  This is the girl who took less than 2 weeks off from swimming after her knee surgery in May.  Because she WANTS to play.

And all those times I pick her up early.  It’s not for a manicure/pedicure.  Turst me.  See, Meghan has a rare disease called Cowden’s Syndrome.  She’d be happy to tell you more about it.  She got it from me.  It causes non-cancerous, and cancerous growths to grow all over the body.  She’s been lucky so far, and even though it was a close call when they removed her whole thyroid last February, she is to date a “previvor,” (one who has surgery to remove genetic cancer risks.)  But, there is a doctor, and often a surgeon, for just about every body part.  There are MRIs and scans, and hours travleing to Manhattan.  No, not to museums, but to NYU, Sloan Kettering, Lenox Hill, and St. Luke’s Roosevelt.  We do the hospital tour.  The average round trip is 4 hours, usually after a long day of school.

This is a girl who has watched her mother undergo surgeries she shouldn’t have to think about yet.  This girl has had her mother diagnosed with cancer when she was in 3rd grade.  This girl has the same genetic condition as her mother, and the same cancer risks.  Some days she has a lot on her mind.

Meghan is not perfect.  I know this, and so does she.  And if you have a problem, talk it out.  Sometimes you’ll be right, and sometimes she will be.

Just don’t assume things.  There’s a saying about that… and it’s all true.

You see invisible illnesses, like Cowden’s Syndrome are very, very real.

Meghan is only one of MANY people you will meet in your life who “don’t LOOK sick.”  They would ALL benefit from your compassion.

Constant doctors appointments, scans, and blood tests, are not where we want to spend such a giant chunk of our lives.

Food allergies is a term we use to protect her from ignorant or uneducated people who think sensitivities and intolerances are not serious.  Forgive me the word adjustment.  It’s necessary to ensure her safety.

You see the hardest part about all this for me, is not being able to give you this speech in person.  For the last 12 years I have been her voice, her mouth, her protector.  Now, on top of everything else she has to handle, she has to find her own way of speaking about all of this.  She has to find her own comfort zone.

And I have to watch.

My confidence in with my daughter.  She will pick the right friends.  She will speak up at the right times.  She will learn all about herself.  She will become her own best advocate, to you and to the world.

And once she has figured all that out, you’ll realize she’s a pretty fun kid to have around.

Don’t worry, she’ll pack her own snacks.

Sincerely,

Meghan’s Mom

IMG_4684