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