Choose Positive….

The day after Christmas in our house is reserved for a blissful amount of peaceful rest.  A few loads of laundry, a simple meal, late sleeping, playing with some new “toys,” recovery, and reflection fill the hours.  It is a wonderful, necessary day to pause and recharge.

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I am awestruck by how fast days blend into weeks, and months, and even years.  My girl is now a young lady.  A young lady of 13 years old with the fall devoted to High School Applications, academic honors, hours of swimming, and some drama (class) thrown in for good measure.  It was a crazy season, but a remarkable, beautiful time of transformation.

I don’t get time to write as much as I used to.  But, truthfully, you don’t need to hear from me all that often to follow along.  The writing remains my way to sort out life.  I feel fortunate that so many of you come along for the ride.

So much of our journey #beatingcowdens is couched in perspective.  We talk so much about the realities of everyone’s life.  We talk about the things people endure that we can not fathom, and we talk about how hard it is to have some of the conversations necessary in the life of my 13-year-old.  We talk.  Often.  And perhaps that is the first of many blessing I have.

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My girl has become a young woman through a path that is different from most her age.  Notice, I deliberately chose the word “different” as we are careful not to measure things in “better” or “worse.”  The medical drama unfolded at a fast, furious pace, most concentrated in the years from 8 to 12.  And we held fast through each one, but then, slowly, the dramas began to slow down.

At first we didn’t want to say anything.  There is the fear of “jinxing” the situation.  When medical drama is your “normal” you don’t really know how to live any other way.  It sounds bizarre.  You want so desperately to be rid of it, but the relief of losing it would be so intense, that to relax and then have it hit you again could be crushing.  So you stay on your guard.  All the time.  But sometimes when you do that you can get a little… I don’t know, isolated, alone, rough?

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There is a security connected to living in a state of medical drama.  At least you know what to expect.

But, it’s not a place to hang out when you don’t need to.

Meghan’s last biopsy was in July.  The follow-up is this week.  My last surgery was in August.  And, in a turn of events here, I have spent the last few months in vocal therapy sorting out ways to work around the tumor that desires to strip me of my ability to communicate.  We’ve had some success, and last week even amidst a terrible head cold, my voice made it with me all the way to Friday.

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And it was on that very Friday morning, as I drove Meghan to a 5:30 AM swim practice, with my head-splitting and my nose running, that I told her how lucky I felt.  She may have checked me for fever, to see if I had totally lost it.  But I explained – a year ago facing Christmas break without her having been knocked down at least once by something major was an impossible dream.  This year, she had done more than ever before, and seems to be getting stronger.  That morning I was grateful that I was able to get my butt out of bed, to take her to the place she loves, so she could work on the sport she loves.

This fall we have successfully removed 2 stomach medications that were previously necessary for survival.  And, we are well on our way to eliminating a third.  There is nutrition, exercise, and natural alternatives in their place.  And it is working.

She came home a few weeks ago with a perfect attendance certificate for the month of October.  I save everything.  I think that may have been her first.  These are the things that keep us in perspective.

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We have a “doctor cycle” among us now.  The knee needs to be checked again, MRI, and two knee doctors.  There are clinical exams, GI follow-up and endocrinology.  The afternoons these next 6 weeks will be swallowed up with trips to NYC.  I’ll add in some appointments of my own, as I prepare for vocal cord surgery, tentatively set, but not yet confirmed.  We’ll keep swimming, literally and figuratively.  We’ll hold each other up, and we will do something a little different.  We will, instead of fitting out lives into the doctors, we will fit the doctors into us.

Raising kids, one, two, three, four, or more- regardless of gender, or age combination each holds unique rewards and challenges.  We have our moments, my girl and I, when we challenge each other to the best we can be.  Sometimes its deep conversation. Sometimes it’s a little less pretty.  But, we do it.  We learn and we grow together.

I find myself often, missing relatives who are not here with us anymore.  I miss conversations, deep and thoughtful.  I miss shared laughs, and the pride they felt and showed.  I understand, and comprehend their lives are changed, their eternal lives are more beautiful than I can imagine.  But, I still miss them.

I sometimes shuffle around a bit in circles in my mind, feeling a little lonely, a little unsteady, and a little unsure of how to break the cycle.

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And even at those loneliest points I take solace at the people in my life who are there.  Their own lives keep us from day-to-day interface, but they are there, forming that net that will catch me, or us, if we were to fall.  They weave a web through our lives that give us such confidence and gratitude, that I can only hope they feel the same way about us.

As we begin to get heavy into the preparations for Jeans for Rare Genes 3,  it is a time to get focused.  I am not a huge fan of New Year’s Resolutions.  A wise friend recently reminded me a calendar is not necessary to begin change.

Choose positive.  That is my simple focus.  I will not be perfect at it.  But, I will work tirelessly.  I will be positive, hopefully not to the point of irritating, but when given the opportunity to face a new situation, I will work to find the positive.

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Cowden’s Syndrome will toss us curve balls for the rest of our days.  I’ve never been much of a baseball player, but I plan to practice my swing.  And just in case- I’ll keep a helmet on as well.

May the culmination of 2016 lead us to gratitude for all the positives it brought, and gratitude for the negatives as well.  May it leave us with the reminders of the blessings in our lives.  Only in appreciation of al of it can we ever move forward.  And really, forward is the only direction I choose to travel.

#beatingcowdens

#everysingleday

#perspective

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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.

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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.

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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

#beatingcowdens

Onward…

“Onward Christian Soldiers, marching as to war, with the cross of Jesus going on before…”  That was one of Pop’s favorite hymns growing up in our Lutheran Church.  He sang it loud.  He lived it softly, but meaningfully…

It’s been a long time since I have written and I am sorry.

Writing is my therapy.  It’s free and easy.  When there is a few minutes to do it.

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And that, well that has been the problem these last few weeks.

I know it’s hard to imagine life getting so crazy that I wouldn’t have an hour or two a week to get my thoughts together, but it’s true.

Time to catch you all up –

On Sunday, February 21, 2016 the Second Annual “Genes for Rare Genes” fundraiser took place at the Hilton Garden Inn on Staten Island.  We had www.yeehahbob.com  Bob Jackson from Walt Disney World at the piano entertaining the masses.  We had generously donated raffles galore.  We had 178 friends and family with us, raising money and awareness for Rare Diseases.  We had Meghan, hosting, and giving her speech and showing her video.  https://beatingcowdens.com/2016/02/21/meghans-rare-disease-day-video-and-speech-2016/  We had Borough President Oddo stop by to continue to support Meghan in her desire to raise awareness and funds.  We had Charlie Balloons entertaining the children and the adults too.

My Everything
My Everything

 

Bob Jackson - Our Disney Friend
Bob Jackson – Our Disney Friend

It was a perfect day, and a month later I can tell you the total funds raised were $13,045.40 to be exact!  A large portion of that money has been sent to the PTEN Foundation and will have a significant impact on helping people like us with PTEN Mutations.  The balance of the money is soon to be on it’s way to the Global Genes Project They will always be near and dear to Meghan.  We identified first with the denim ribbon, and the logo “Hope, It’s in our Genes.”  And that is the site we learned first about Rare Diseases, and that we in fact are among the lucky ones.  These are lessons we will never forget.

Meghan addressing a crowded room
Meghan addressing a crowded room

 

Just a handful of our many raffles
Just a handful of our many raffles

Finally, I THINK, (and I apologize if we forgot anyone) all the thank you notes have been written or Emailed.  When I finally settled down to do it, there were over 80.  Meg helped, but I just flat out write faster.  Now, we rest on that a bit, while we consider what changes and what remains the same for next year.

But, life did not even pause while we planned this event.  My grandfather, my 96 year old grandfather, who was still living on the second floor of the two family home my mother grew up in, caring for my grandma, his bride of 70 years, fell on January 13th.  This set of a tirade of events of the next few weeks that brought us all through an emotional roller coaster.  My grandparents were the center of my world for much of my life, and even though I am blessed to have had them for 42 years, it is hard to imagine navigating life without them.   Pop visited two hospitals, had mutliple strokes, and ultimately ended up in the nursing home for rehabilitation.  The rehab was not meant to be, and on March 3rd he passed away peacefully, after some tumultuous days.

Pop - So much to so many
Pop – So much to so many

Grandma, now resides in that same nursing home.  Alzheimer’s has robbed her of much of her memory, but she is well cared for by kind, patient people.  She is safe.  She is calmer.  This is a good thing.  And, in one of many ironies, perhaps her disease has been a blessing.  There was no need for her to say goodbye to Pop, as he always seems to be just “across the room” when we visit.  They were never meant to be apart any way.

Always together...
Always together…

We celebrated Pop’s life at a beautiful service on March 12th.  My conscious mind, the rational one, is grateful he is at peace, and thrilled to know he is Home in Heaven.  The little girl in me, the one who adores her grandfather is sad.  Just very sad, and not looking forward to the series of “firsts” in front of us as reality sets in.

I planted the seedlings for my garden, just as my Pop showed me.  I am tending to them on the kitchen table with plenty of sunlight.  They have begun to sprout.

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And those seedlings, and signs of new life remind me of why Pop loved the garden so.  It is refreshing to see growth, new life, and new promise each day.

We celebrated Kathi’s bridal shower, as she and Jon will marry April 15th.  All things new.

Time keeps passing.

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In the interim there have been regular Mommy things to do, like swim practice, and doctor’s appointments, and household stuff.  Thankfully in this house we have a very, very helpful Daddy, and we do a lot of team work.  Thanks to him, all those weeks I was out of commission cherishing every moment with Pop, he was here, keeping it all going.

Last week we went dress shopping for some of the events coming quickly.

This week it was shoe shopping.  Shopping for shoes is never as much fun, because it is hard to find a shoe that is 12 years old, and supports those feet, knees and legs.  The right knee, the site of 6 surgeries targeting that AVM, has residual damage.  The muscles are not formed as well, obvious only to Meghan when she puts on a pair of jeans.  The foot is over one full size smaller than the other, and it is skinnier too.  So, we buy two pairs of shoes to make one “pair.”  We are careful.  Frugal when we can be as it’s all x2, but focus is always on fit, style and comfort combined.  No easy task.  But, we did it.

Meghan left the store apologizing for the bill.  I told her how grateful I am that we can pay for shoes, and other things.  We had a long talk about the phrase, “I cried because I had no shoes, then I met a man who had no feet.”  It fits nicely with the perspective talks we have all the time.

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Tonight I was thrilled to find a website that will allow me to donate her “other” shoes to amputees.  She was excited too.  Something that will make us both feel better.

This week I scheduled some more appointments.  I was waiting.

Friday we head to the gyn for the 3 month follow up.  The hormones are a nightmare, but that’s for another post.  The next biopsy is supposed to be in June…

The dermatologist 6 month will be during spring break.  So will the orthopedist.

Cowden’s wasn’t gone.  Heck, it wasn’t even resting.  I was just using a big stick to hold it at bay for a few weeks.  I’m sure I left some stuff out.  It’ll come up if it was all that important.  Just know-

We are still #BEATINGCOWDENS!

Onward…

 

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!

Local Newspaper Coverage

This is already all over for my local friends, but for anyone else who is interested, this article was written for our local newspaper. It will publish in print Monday, but is in the online paper today. Click the link below.

http://blog.silive.com/gracelyns_chronicles/2016/01/post_23.html#incart_river_mobile_home

 

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Making the Most of It All…

Sunday night, coming home from a swim meet, Meghan outlined her goals.  Among them included, “no surgery for a whole year.”  To someone who hasn’t had 4 surgeries in the last 12 months, that may not seem quite that important, but to Meghan it was at the tip-top of the list.

Over the last several years she has spent more time living in “recovery” than just living.

Your Recovery Green Road Sign Over Dramatic Clouds and Sky.

She dropped 16 seconds total off her event times at this month’s meet, and 17 last month.  Insanity.  Except to a young lady who is now growing into herself, and her abilities.

 

She wants to swim.  Hard and often.

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She wants to soar academically – no average under a 95 will do for her.

She wants to act, and sing, and be on stage.

She wants to participate in her youth group, and retreats, and live her faith.

She wants to raise community awareness of Cowden’s Syndrome and rare diseases.

She is on the move all the time.  I know, because I am with her.  Or helping her stay organized.  Or transporting her at least.

This weekend we drove 200 miles.  Today at least another 60.  LOTS of time for car chat.  Lots of time to get to know each other well.

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Sometimes she drives me crazy.  Sometimes I frustrate her so badly she wants to scream.  Sometimes she does homework, reads, or works on projects.  But, lots of other times we talk.  About anything and everything.  And as much as I hate traffic, and long distances, I’ve learned to make the most of our time in the car.  I’ve learned to appreciate my captive audience, with the realization she won’t be in my back seat forever.

Captive Audience words on a ransom note in cut out letters in a message to forced or trapped customers or people

As a matter of fact after today’s appointment, she could easily be in the front seat.  All the time.  At a very trim waistline, and a height of almost 5 foot 7, she presents as YEARS older than she is.  Which I sometimes have to remind myself when I am busy expecting her to have it all together.  Sometimes she still needs me to help her along.

Today was the knee surgeon.  Six month follow-up.  He sees the shift in the patella.  He feels the scar tissue, and the clicking.  But, he said, she can wait.  She can wait until she’s ready before he cleans it out again.  With Cowden’s it’s a fine line.  How much pain can you deal with?  Because every surgery will lead to an overgrowth of scar tissue which carries its own issues.  Drag your feet.  Know when enough is enough.

Next we will have an MRI to check on the AVM.  As long as that’s stable, we should have a bit of time.  A bit of time to do some things besides recover.  A bit of time to be a bit more like a “normal” busy 12-year-old.  Well, like a “normal” 12-year-old planning a fund-raiser for more than 150 people with her favorite Disney entertainer… But, hey, she dreams big.

This kid. My stength. My motivation. My hero.
This kid. My strength. My motivation. My hero.

Tomorrow she goes to another doctor.  And about this one I just pray.  A lot.

In two weeks I get to remind myself I have Cowden’s with an unplanned visit to my plastic surgeon to question a poorly behaving painful prosthesis.

Plenty to preoccupy the mind.  In our immediate and extended family.

One day, one event, one obstacle at a time.

I did start my Christmas shopping.  After 2 years of holiday sadness, I am craving joy, and celebration.  I am craving the anticipation of the birth of the baby Jesus.  I am determined to remove myself from the holiday hustle and bustle.  I am determined to set my mind right.  Because none of us ever know.  Really.  And there is no promise of tomorrow.  Really.

But organization makes me happy.  And it’s about being happy.  And making the most of it all.  All the time.

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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

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