Life begins… at the edge of your comfort zone…

 

Roller Coasters

Nope, not us.  No way.  No how.  Terrifying.  Not going to happen.

Until last week.

Something clicked inside her head, and she decided that she had come to conquer.

There was a pit in my stomach when she first declared she was going to go on Space Mountain.  Roller Coasters have never been my thing either.

But, she even decided who was going to sit in front of her and behind her.  No getting out of it for me.

She told me that she had been through a lot in her life.  And that she shouldn’t be scared of a ride.  True.  There was that quote by Eleanor Roosevelt we had read, and referred to so many times.

No not the other quote, “The only thing we have to fear is fear itself.” – FDR

This one, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” – Eleanor Roosevelt

The first time we were both a little scared.  Then there was the second time.  And by the third time she owned it.

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_DSC2818“Rocking Roller Coaster!” she declared.
And so we headed to the Aerosmith ride that wasn’t even on the consideration list a year ago.  Twice.  I went too.  And I really didn’t mind.

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“Life begins at the edge of your comfort zone…”  Words I am learning to be truer each day.

And so in the week that was, we rode Space Mountain, Aerosmith, Big Thunder Mountain, Seven Dwarfs Mine Train, Test Track and even the Barn Stormer together.  I did Star Tours too, but virtual reality isn’t really agreeing with me anymore.  Maybe too much reality?

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So she went on Mission Space with her Dad – twice.  Once on the beginner level, then on the advanced.  And they rode Splash Mountain too – just because.

It makes me happy to see her conquering fears.  There are so few of them, that I am hopeful nothing like a roller coaster ever stands in her way.

And as I reflected on the idea that this kid, this amazing kid had brought me past a fear that had plagued me for decades, I found myself hopeful that she will always dance…

“Never settle for the path of least resistance… I hope you dance…”

“I Hope You Dance” – Lee Ann Womack

I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.I hope you dance….I hope you dance.

“It is only with the heart that one can see rightly…”

There is something about having a kid who struggles, whether physically, mentally, emotionally, or in any other capacity, that forces you to open your heart and mind to things you may never have “seen” otherwise.

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We are blessed.

We have a beautiful, witty, articulate, charismatic and spunky young lady.

She knows pain, and she knows it well.  And some days that pain is like plowing through a stone wall, while others its like walking across a pebbly yard barefoot.  But, there is sparsely a day with no pain.

She knows competitiveness.  Although she would like to be the fastest runner, she is starting to work towards a more reasonable goal in a no impact zone – the pool.

She knows intelligence that book smart children know, and she knows the perspective that few adults can master.  She can look at other people and want to talk to them.  She can wonder about them.  She can empathize with them.

She knows what its like to be sick.  And in surgery.  With IVs, and needles, and scars, and recoveries.  She knows what it’s like to never be “well” only watched.

She is learning, step by step, that “well” is more of a state of mind, than a state of being, when each week is peppered with some type of appointment.

Yet, she knows that even at the depths of her own Cowden’s Syndrome battles, there are others.  With and without our syndrome – who fight a battle unbeknownst to us.

Meghan doesn’t use a wheelchair at home.  For this I am grateful.  Although as I teach my daughter about homelessness, and how we can never be too sure from where they came, or whether it could through a series of unfortunate events, become us.  We practice a deep understanding of reality in Disney World.

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Meghan’s pain, so much of it, stems from repetitive motion.  Too much walking, any running, too many stairs, too much kicking or pulling in the pool… all of it has repercussions.  So Disney, by it’s very nature, and its wide landscapes requires much walking.  And, as we try every year, even with a little here and there – the pain is deep and inevitable.

So for that week every summer she gains an even greater perspective.  She lives in a wheelchair.  With all the inconveniences that come along with it, in an effort to save the needs from irreparable pain, and the trip from being a wipeout…she rides.

And on the first night after the vomiting I watched from a distance, as Felix helped her onto the handicapped ramp on the bus.  And there was a knot in my stomach as I watched my girl get strapped into the bus in the wheelchair.  This beast, this Cowden’s Syndrome we fight.  Well we fight to win.  But who can know?

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I stop myself from wondering too far ahead and I reflect.  On the old me.  The me who used to look at people in wheelchairs riding buses as an inconvenience.  A delay in my precious time.  The me who used to judge and try to guess why they would need a wheelchair.  The same me who used to judge a lot of things.

We will unpack.

The wheelchair will be stored.  Hopefully for a very long time.  But, it will be there, in the basement.  In case.  In case we need it for anything.  Because the pain, well it’s always there.

Fortunately, she is in a position where her stubbornness still has the power.

And I will think, as I drive her back to swim practice in a few weeks, about the other mothers.  About the ones who wish their child’s wheelchair use was temporary.

And I will think about the phone call I got this week.  The one about the AVM growing in the knee again.  Timed on the same day she was vomiting in the hotel room.  And I will be grateful that we don’t need surgery right now.  And I will be grateful that it is not in her head, or any other life threatening spot.

I am humbled.

By her grit.  By her stamina.  By her determination.

I am grateful.

For the opportunities afforded to my girl.

We will find the balance.  We will pay it forward.

I don’t even really remember the judgmental me.

I am too busy working on

BEATINGCOWDENS!

 

Avocado and Isagenix – What’s in YOUR suitcase?

It’s been almost two weeks – a long time for me not to write.  My head is spinning with things I need to get out in my blogging “therapy” sessions.

As I sit in Orlando International Airport, delayed by hours on the sunniest evening all week, I find myself reflecting on the week that was.

Even though we have been at Disney 7 years in a row, and even though we probably should have stayed home to lick our wounds this year, we threw caution in the wind and decided there would be plenty of time to make money, and time to make memories isn’t always there.

Plus, in 2014 alone there was that thyroidectomy in February that threw my girl’s body into some wild unbalanced state, and that week in May when we learned all about gastritis.  (Caused by the pain medicine she had lived on for years.) So after spending months trying to get her stomach back in balance, and juggling the gluten, dairy, soy free, and largely preservative free diet, with the new restrictions of no citrus, no chocolate, no tomato, we contemplated cancelling the trip.  But we knew that would seem more like a punishment than a precaution.  So the reservation held – August 5 -12.

In the week leading up to the trip time seemed to fly by.  I barely got her settled with enough clothes, got us a functional suitcase, and got us packed in time.  And as we were packing I began to gather food.  See, when you travel with a kid with food allergies, you don’t travel without food – ever.  Even though Disney is “the happiest place on earth,” and even though almost every chef we encounter is masterful at creating meals to please her very restricted palate, you still need to pack the “staples.”  There has to be a supply of dry fruit, cereal, pretzels, applesauce, cookies, and bars.  In the past we also always packed tomato, and barbecue sauce too.  Every morning we would fill small containers and have it to flavor anything dry along the way.  Except this year tomato was equal to painful reflux, and we weren’t about to try it out as we traveled.

So, we went to the next best thing – avocado.

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I have never been a huge fan, but my Puerto Rican husband gently introduced healthy protein into her diet and it was so well tolerated.  She liked it to moisten food, and there were plenty of days she ate a whole one.  So, into the suitcase went a container full of 8 avocados.

Use what you know.

And in another container nearby were several packages of Isagenix shakes.  Those, I had packed with intention of using them myself.  So glad I did.

When we arrived in Orlando Tuesday the 5th after a 6 AM flight, it was 8:30.  We rode the Magic Express and got to the hotel by 10:30.  At 10:45 the luggage arrived, and by 11:20 we were unpacked and on the way to the Magic Kingdom.

And find the Magic we did.

We spent the day riding, and laughing, and watching and taking in all the wonder around us.  We had lunch at a trusted favorite, the Liberty Tree Inn, and the turkey, stuffing, mashed potato and gravy were prepared to perfection.  Her stomach was happy.  We were happy.

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Dinner was with some old friends at the Contemporary, and we willed the time away searching for “Hidden Mickeys.”  The “Fab Five” greeted us, and the chef took us to the buffet.  I tried to choose carefully, as the selections seemed a bit questionable.  I was assured they were within her dietary restrictions.  And there was the drink.  We asked for it diluted, as it wasn’t her normal fare.  But he was busy and I suspect by the third glass the waiter had forgotten to dilute it.  And there was the GFCFSF sausage… and…

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By the time we sat for the electrical parade we were all tired, but she said she felt something in her throat.  She asked me for food, and even as I handed over the pretzels I should have known better.

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She slept fitfully.  So much so that I kept waking to check on her.

“New room… new place.”  I kept telling myself…

And in the morning when we got up to leave we just about made it to the lobby when she said she couldn’t go.

“Houston… we have a problem.”

We exchanged those “uh-oh” glances – Felix and I.  And we followed her to the room.

And barely did she make it in the door then the familiar violent vomiting from May returned.  So much.  So forceful.  Like her body was not going to stop until it got rid of every single offending morsel in her body – whatever it may be.

It went on for hours in our hotel room in Walt Disney World.  And every time it seemed to calm and we tried water, bread, pretzels… it all began again.

We called our GI from home who instructed rest.  And we looked at our girl laying so still and so sick on the bed, and we searched out the travel insurance brochure.  After two hours on the phone with more people than I care to count, we arranged for a doctor to visit the hotel.

And while we waited the staff had seen my tears, my desperation, and prepared a bag with some balloons, and coloring books, and pins and UNO cards to pass the time.  There are good people.

But by then – at 5 – she had been without food or drink for 5 hours and was starting to look better.

He was amazing, and unusual, and smart, and introspective.  And he sat with us for a good hour learning about Meghan.  Then he sized up that she was not dehydrated.

“What do we do?”

“Go with what you know.”

Not so easy hundreds of miles from home.  But, she was hungry.  And there were avocados.  And my eyes hurt from crying in absolute frustration that we had just breached her forever “doctor free” zone.

Then he asked what she drank and we said “Coconut Milk.”  And just like that he was out the door headed to a whole foods 6 miles away.  HE took money only for the milk itself, not for his gas or his time.  And we had options.

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WHO does that?  This stranger… this “standby doctor” so moved and so interested in helping…

So there was avocado, alternating with coconut milk at very deliberate intervals.  And once the avocado held itself in place we had a few options.

“Can I have a shake?”  MUSIC TO MY EARS…

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A half shake in 8 ounces of coconut milk.  Followed by a half of an Isagenix meal bar.

By 9 she was well enough for a ride around the hotel.

By the next morning we cautiously resumed our trip.  With Isagenix, and an avocado in my backpack all day.

Felix said we should call her our “rubber band-” stretched until you think she’ll break, then she finds a way to spring back!

 

Maybe it wasn’t a “Total Loss”

The Insurance Agent called Friday night.  He told me my car was a “Total Loss.”  I think I knew that after I saw this picture the first time, but it was still a little hard to hear.

I really did love my Hyundai
I really did love my Hyundai

Even though I understand the term “Total Loss” has specific connotations in the insurance world, the terminology wasn’t sitting quite right with me.  To me, a “Total Loss” means I didn’t learn anything.  It was a waste.  I took nothing from it.  That couldn’t be farther from the truth.

I have taken something away from every experience I have had in my life, especially the very trying ones that seem to be pelting me like hail on a blustery day.  Sometimes what I take away is positive, and sometimes – not so much.  But I always, always learn something.

1. No matter how long you stop, and no matter how hard you look, and no matter how sure you are that it is safe to go – a speeding car may hit you anyway.

2. If there are no witnesses to an accident – there is no way to “prove” excessive speed. This is the case no mater how many times your car spun around.

3. When you ride in an ambulance its less scary when you take someone you know.   And, there are people kind enough to ride in the ambulance with you even though they hardly know you at all.  There are real live angels among us!

4. When you are in an Emergency Room of a local hospital – burn your socks after walking on the floor, and don’t look too closely at the walls.  Don’t expect the doctors to have any idea – or to really care what Cowden’s Syndrome is, and how it affects your body.

5. There are some really really nice insurance people, and some really obnoxious ones.

6. Many doctors do not accept “no fault” insurance, so finding one to check you out may be a challenge.

7. The pain is worse before it gets better.

8. The pain of being told you are more liable than the guy speeding through the school zone simply because th stop sign is on your side of the intersection may not be physical, but it hurts your pride.  Especially when you know you handled it right.  It  is hard to get over hurt pride, but you can find peace with a clean conscience.  So glad I have one.

9. It doesn’t matter much to anyone that the guy who hit you didn’t even try to stop, swerve, honk, or perform any evasive maneuver before plowing through you.  It’s all about the stop sign.

10. Whiplash, and muscle spasms are real.  Muscle relaxants are useless because they can’t be taken during the day when you have to be a full-time teacher and mom, but they help you sleep a bit at night.

11. When you stop and consider your accident scene, and you realize all the things that could have gone so much worse, you are reassured that the angels really do watch over us.  (Thanks Angel Meghan… and all the others)

12. When you have Cowden’s Syndrome, and hamartomas on your spleen, they will send you for an abdominal sonogram right away, and then – like everyone else around here- be totally unsure what to do with the results.

13. Fax any important test results to a doctor you trust.  I am grateful the spleen didn’t rupture, but for those of you on my team, cheering for it to stay – cheer louder please.  The hamartomas are growing.  I will talk to my doctor at NYU this week.

14. When you are really at your lowest point, hurt, aggravated, and discouraged – make a decision to DO something positive. After realizing a child could have been easily injured in this mess,  I have established a petition for our local councilman to reevaluate the speed limit on the street where the accident occurred, and to label it a school zone, as well as to consider multiple two-way stops and speed bumps.  I have reached out to the local “Improvement Society” who already reached out to DOT on my behalf.  I have parents in my school fully supporting me and working to gain signatures on a petition.  Their children’s lives are in danger every day.  I want some things to change to make the children safer.

15. It is more fun shopping for a new car when you are ready to buy one, but my husband is helping make our current search more pleasant.  Always marry someone with a sense of humor.

16. Wear your seat belt!  Darn it if Cowden’s Syndrome isn’t going to kill me – a car accident won’t either.  So glad I was buckled up.

17. Those silicone implants can take a good hit.  Thankfully – nothing popped!

18.  I am not going on the teacups at Disney World ever again.  I have had enough spinning for a life time!

There… not a “Total Loss” at all…

to-be-continued