Playing in Pain

We missed church again today.  Not because we overslept.  Nope.  We were up with plenty of time to arrive at the Urgi Center and take our typical seats, waiting in a crowded room.  If I had my copays back each year, I think they would exceed my tax return.  Which is no great shakes anyway, especially with the whole identity theft mess.  But, I digress…

Yesterday was a CYO swim meet.  It started poorly because the bungee on her prescription goggles snapped in my hand.  And they don’t get to warm up before a CYO meet, so there was no way to check and see if the new cord set the goggles right.  So, she want back to her old goggles.  Guaranteed functionality – sacrificing vision.

swim

She swam.  Hard and as fast as she could.  She maintained her time during her first 25 fly in the relay, and took 2nd in the individual fly.  She even swam up – with the 7th and 8th graders for a 50 back, and took 2nd there too.  But it was during the last leg of the 200 free relay – the last lap of her 50 – her father and I looked at each other and knew – the right arm was hurt.

swim2

When I met her in the locker room her resolve was strong.  My mission was clearly to help her get out as fast as she could.  But the arm made it tough to change quickly.  We got into the car before it all came out.  She explained how the loss of the prescription goggles altered her judgement and she banged her arm into the diving board rails as she started – out of a lane she has never been in before.

We came home and iced the arm.  We watched as the pain seemed to get worse.  It went from the arm, up into the shoulder and into the neck.  We are so used to there being pain.  This child lives in constant pain.  Some people must think all sorts of things, because something truly always hurts.  But we have learned to put them aside, and, we have to triage.  Last week she walked around for 5 days with a sprained ankle.  Pain is so personal.  Her nerve endings seem so easily excitable.  Any injury seems to trigger an attack of “hyper healing” effort by her body.  Even with 200 mg of MAINTENANCE Celebrex a day, she contends with joint pain and muscle spasms.

But she is an athlete, trapped in a body that is not quite sure how to handle her.  So she presses on, and in between wanting to stick her in a bubble, I am awed by her raw determination.  She wants to RUN, and KICK, and PLAY, and SWIM, and be a KID.

It’s not uncommon for her to spend the day after phys ed. recovering.  Or a day or two after an athletic play date trying to work through the residual pain.  I know that the other kids aren’t fighting their bodies like this, and it breaks my heart.  But she is one determined young lady.

Sometimes the only option..
Sometimes the only option..

So last night we sent a text to our PT.  To know Dr. Jill is to love her, as she is one of a select group of medical professionals who truly works for LOVE of the children she services.  And when you are Meghan you have “PT for LIFE” and she’s been a patient there for about 4 years!  And at 9PM last night we were in her living room – getting informal advice from a very skilled friend.  If you’ve followed our story a while you know Dr. Jill is the impetus behind our Cowden’s diagnosis.  She is the one who said,  “something isn’t right here – too many unconnected pieces.  Take her to genetics.”  And I did.  And the rest is our unfolding story.

Dr. Jill encouraged us to get a muscle relaxant for Meghan at Urgi Care today.

She's an absolute DREAM child - but really God knew what He was doing giving us ONE!
She’s an absolute DREAM child – but really God knew what He was doing giving us ONE!

So we did.  We also got a note because the injury is to her right bicep and shoulder.  Her dominant side.  And there is no practice for her tomorrow.  And no Phys. Ed. on Friday… and then there is the math test this week.  And the gamble as to whether she will be able to write enough, fast enough…  So much to think about.

The muscle relaxant calmed the shooting neck pain for a while, but its on its way back as I type.

We spent some time today talking about our fundraising hopes for Rare Disease Day 2015.  We talked about my promising conversation with the head of the PTEN foundation – formed in December 2013.  We talked about wanting to do something BIG for the PTEN foundation http://www.ptenfoundation.org/ and Global Genes Project.   http://globalgenes.org/

I sometimes complain about being too busy, but she, like me, needs a positive project – even a simple play date – just something on the horizon to keep her focused.

She managed to type out the homework.  We are getting ready for tomorrow and another crazy week.

We are babysitting my sister-in-law’s 12-year-old rottweiler.  A 3 dog house.  Cause a little more chaos creates more reason to keep on keeping on.

And I marvel that aside from some waning eyesight which I will have to address eventually – my body is stronger, and more able to endure stress than ever before.  And I remember that it’s a good thing I stumbled upon nutritional cleansing when I did.  The closet is full of the smallest clothes I have ever owned, and the ability to endure is not to be taken lightly.

My Favorite!
My Favorite!

So tonight we will get a real sense of how long the muscle relaxant helps.  And tomorrow we will conquer the hurdles of having the dominant shoulder banged up during a school day.

I think I’ll get everything prepared nice and early.  Just in case…

moms - full time

Today

today

In the spirit of one day at a time… today she feels well.

Today homework is already done.

Today her stress level is low.

Today she swims in the water like the fish she longs to be.

Today as I sit poolside with my computer, I can watch her laugh and smile with her teammates.

Today the less rigorous of the two practices, her CYO team comes first – but she is sure she can manage a double practice.

one-ste-at-a-time

Of course about 7 days ago we raised the Celebrex back to its (in my opinion) too high dose.

No one can figure out why the drug works for her, but it does.  And I am grateful, but scared all at the same time.  The list of medicine grows.  The knowledge of Cowden’s Syndrome remains spotty at best.

We know of the cancer risks, but the chronic pain, the low endurance, the vascular issues, the migraines….

One of our doctors theorizes that the Celebrex has kept her AVM in her knee from acting up.  Given the potential side effects of Celebrex I think it’s the medical equivalent of robbing Peter to pay Paul.

Sometimes I feel like with all the doctors we see, there is still no one minding the store.  We travel between specialists, between symptoms, between surgery and recovery.

The blood for the thyroid won’t be drawn for a month.  She slept 14 hours Friday night and another 12 Saturday night.  No major plans for us for a while.

The throat clearing never stopped with the thyroid removal, and I am flat our unsure who to even ask.

Sometimes I like to play mind games, and forget about Cowden’s all together.  I daydream a bit…

one-day-at-a-time

And then I remind myself that every illness, every experience, every event that occurs in our lives helps to define us and make us who we are supposed to be.  Like that ‘ever changing puzzle” my Dad used to tell me about.

And I think of my friends and family.  They are contending with diagnoses new and old.  None of them fun.  I would never say to them that experience shapes who we are.  That is a personal belief that the wrong person just might deck me for.

Especially on my heart is my internet friend from Australia.  Never have I felt so helpless as her daughter endures multiple brain surgeries and I am 12 hours and several continents away.

You Never Know How Strong You Are Until Being Strong Is The Only Choice You Have

Today.  Today my girl feels good.

Today I will do as I have been taught and let tomorrow worry about itself.

Today we are BEATINGCOWDENS!

good-live-one-day-at-a-time1

Keep Swimming… Just Keep Swimming

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend 🙂

This image has been on my mind all week.  Truth be told there is an awful lot on my mind,  and I apologize that most of it is likely to come out jumbled.  When I don’t get to the computer regularly there is all this stream of consciousness stuff…

invisible illness 4 dumptruck

My girl feels cruddy.  And I know, “its a big surgery,” and “it takes time to even things out.”  But it really stinks.  Her thyroid numbers are way out of whack.  The endocrinologist is absent… most of the time, and even if he couldn’t answer my questions, I’d like to be able to ask them.  If my thyroid numbers were as wacky as hers you’d be scraping me off the floor.  Here comes the crazy mom – trying to restrain myself for one more blood work cycle before I fire him too.  Good thing I live in a big city.  I might well run out of doctors otherwise.

It is so hard to watch her  – feeling betrayed by her own body.

She is bright.  And kind.  And super rational.  She gets the whole idea that people have it worse.  She is grounded.

But sometimes she is 10.  And she doesn’t understand why she can’t keep up.  Cognitively she can dance.  But physically…

She has to decide on a Friday if we are busy on Saturday morning.  This way she knows if she can play gym.  She gets through the gym period, and often has the time of her life… but we have to block out hours on Saturday to recover.  She played last week.  She had the time of her life.  Good thing the school staff doesn’t have to watch her get out of bed on Saturday.

And running.  How she LOVES to run.  And she’s fast.  But she can’t.  Not for long anyway.  Tendonitis, inflammation.  And forget it this week as we TRIED to lower the Celebrex.

Never mind the swimming.  She belongs to a team that practices 4 times a week.  On a good week we get there twice.  Not for lack of trying, but exhaustion gets in the way.  It is CYO season now, so she is with a more recreational team too.  Some fun times.  But she wants to be faster.  And she could be.  But her body betrays her.  And it makes her angry.

And now the headache.  The migraine  returned 2 days ago despite the recent medication increase.  She is just so very tired.  The neurologist called me tonight.  Increase the Celebrex.  See if that helps.  So much for less medicine.  Let’s pray for relief.

Hope-can-grow-from-the-soil-of-illness

I think alot about the others.  I think about the other’s with RARE Diseases.  I think about the ones less fortunate than us.

I also think about the other’s with Cowden’s Syndrome.  I have never met them – any of them except my own girl.  But, we “know” quite a few.  There are some I keep in touch with on an individual basis, a few Meghan corresponds with, and the bulk of them come from a Facebook group for Cowden’s sufferers.  We share experiences and ideas, and successes and disappointments.  We toss things out to each other before the rest of the world.  We speak safely to people who “get it.”  And although even among us our symptoms vary widely, and I believe a lack of research keeps us from being sure what is Cowden’s related, they are my best support.

I often go to bed and wake worried about these people I’ve never met.  I think about their physical struggles, and their family struggles.  I pray for them when they have tests, and surgeries, and they do the same for us.  People could argue they aren’t “real” friends.  I would have to disagree.  They give me hope.

I

power-of-persistence

Then there are days like yesterday, when you arrive at home after 14 hours at work to find a package on the counter.  And inside the package are jeans for Meghan and I.  Carefully sewn on each rear pocket is the denim ribbon symbol.  Also in the package was a bag “Hope, It’s in our Genes.”  Yep.  It sure is.  A friend of my sister’s.  Inspired my some crazy words she’s read here.  Go figure.  Grateful.

Make-The-Best-Of-Everything

And there are the events coming up.  The fifth grade events.  The ones where she will try her best to fit in.  The ones where her PTA has carefully worked behind the scenes to help her feel “normal” as they serve her dinner at the Father Daughter Dance, and the Fifth Grade Dance.  The trip that someone will have to come to – because there won’t be any safe food there, and the growing realization that so much socialization in life revolves around food.  Just another way to feel different.  But she plugs along.  Keeps that smile.  stays focused on the good as best she can.  Because she is acutely aware that there is a lot of good.  And painfully aware that things are fleeting.

running away

We miss my father.  It’s only been a few months, but every day seems to contain a bill, or a banking issue, or a quest to sort through the photos left behind so I can copy them for my siblings and get about the business of sharing them with the world.  There is a glitch in each direction.  No major problems.  Always just a series of minor ones.  He may not have been always around, but the time he was was powerful.  Maybe I keep myself too busy. Maybe I worry about tasks insignificant to others.  But I do, we do what we can to keep his memory alive.  We talk about reality, and we keep our most special missions close to our hearts.

Life's not fair

There should be sunshine and roses.  But there isn’t.  Well maybe there is… if we look hard enough.  All I seem to hear are stories of tragedy, heartache and pain.  In my own family, and in general conversation there are serious illnesses, untimely death, suffering, pain, and sadness.  I don’t profess to know the grand plan.  Not for a moment.  And I am sure its better that way.    I have only learned to find the blessings I can in whatever I can, as frequently as I can.  That is what keeps me sane.

I am far from perfect at this.  FAR from perfect.  But I – like all of us, am a work in progress.  So as the days sometimes seem insurmountable…  I remind myself, and my girl – that we have to follow Dory’s advice…

just_keep_swimming__3-334182

Reality – tough to swallow

I am a huge fan of online shopping, and normally I anticipate my orders my counting the days till their arrival.

Except this one – not so much.

wheelchair

It was a purchase made out of necessity, not desire.  It sat in my online shopping cart for 2 months before I hit send last night.  It will arrive some day next week.  It leaves me with mixed emotions.

Gratitude, that it is not a full time arrangement.

Anger that it has to be part of our lives at all.

Frustration for my energetic girl who would rather run, than walk.  And would love to do both without pain and bone-crushing fatigue.

Anxiety, about all the ignorant folks who will pass judgment that I hope she doesn’t hear.

Guilt, that my child can walk and so many others can not.

energy to be normal

My beautiful girl, as you know by now, has suffered with health issues her whole life.  They have ranged in severity, but they have been consistently problematic.  The diagnosis of Cowden’s Syndrome in the fall of 2011 answered some of the questions, but by no means all of them.

Research is scarce.  The cancer risks associated with our PTEN mutation are real, and documented.  But, the rest of the symptoms are shared though anecdotal conversation in small internet groups, worlds apart.

I can not know if, or to what extent, Cowden’s Syndrome explains the other maladies that have plagued her virtually since birth.

There are food sensitivities, on the narrowest list we have ever had she is gluten, dairy, soy, dye, and preservative free.

There was the gall bladder removal at age 3.5, and the pancreatic insufficiency that requires digestive enzymes with every food.

And, despite the most serious precautions, as well as daily probiotics and nutritional supplements, there are still daily stomach aches.

There is the AVM in the knee – the one that needed 4 procedures to finally cut off the abnormal blood flow – for now.

There was the vascular malformation in her hand that the kind surgeon was able to correct last summer – after MUCH angst.

The lipoma on her back was almost certainly Cowden’s related.

And the biopsies.  The three thyroid biopsies – the most recent of which still wreaks havoc on my nerves- those are Cowden’s too.

But the chronic pain?  The joint issues that make 200 mg of celebrex a necessity – not a luxury…. who knows?

And the physical therapy that is a necessary part of her existence – just to function.

What about the migraines – now well controlled, but not gone?

And I sometimes wonder why she is a bit absent minded?  Shame on me.  It’s undoubtedly necessary for her to survive.  Imagine if she thought of all that every day, and all her daily activities?  She would lose that magical smile.  And I don’t want that.

happiness is

The frustration is as palpable as the largest nodule in her neck.  She WANTS to do EVERYTHING the other kids can do.  She wants to run, and play, and participate with them.  She is TIRED of being different.  She is TIRED.

Swimming is a good idea, but it takes so much out of her.  Last night’s practice got in the way of tonight’s. School was tough.  Clammy, hot flashes, uncomfortable.  Maybe she’s coming down with something, but more than likely she’s just wiped out.

Three practices a week was the plan.  Two became the goal.  This week it was one.  But somehow its worth it, for her to be able to say she is on a team.  To be able to say she swims competitively.  To feel somewhat “normal.”

When she was younger I could hide things from her.  Now she’s just too smart.

When she was younger I could convince her all the kids get tired.  I could deflect her attempts to play too hard.

When she was younger she might not have noticed that an hour in the snow on Friday knocked her out for the weekend.

When she was younger…

But she’s older now.  Wise beyond her years.  And I have been where she is, and I hated it.  She has it worse, and I know she hates it too.

She can swim – pretty fast.  Just not too often.

She can run- a few laps back and forth in the gym – as long as she has her Celebrex and PT.

She can play outside for a bit – but not too long.

She can walk too.  Until the pain in her legs, or her hip, or her knee wipes her out.  Or until she has to surrender to fatigue that will keep her in bed for 13 or 14 hours.

I am grateful.  You bet.  And sad too.  And I think it’s OK to be both.

She spent a few years in a MacLaren push chair when the walking was extra long.  Now SHE is extra long – adult sized at 10.  Time for adult sized reality.

swim overcome

SO if you happen to run into us when she needs that wheelchair, just smile and say hello.

We will remember to be grateful we don’t need the wheelchair full-time.

When you are tempted to pass judgement on my healthy looking daughter – be grateful you don’t need it at all.

Moving at our OWN pace

Two weeks ago today we left for the last day of school.  Seems like an eternity, although not a restful one.

Today was the first day I woke up with nowhere to be, and nothing to do.  Our first mandatory stop is swim practice at 5:30 PM.  So I sit, nursing a cup of green tea, and trying to convince myself, on my health quest, that it is just as good as the caffeinated hot cocoa I have been drinking for years.

snooze-and-lose

This morning I woke when my body told me it was time – somewhere around 8:15.  What a blessing to open your eyes because you are ready.

I tended to the garden.  I watered my tomatoes, peppers, eggplant, cucumbers, and I even picked a ripe zucchini.  I watered the flowers on my deck and I marveled at the calm beauty of the neighborhood at 8:15 on a Wednesday morning.

Not my plant - but you get the idea!
Not my plant – but you get the idea!

Now, to all you teacher critics out there- I recognize ten weeks of unscheduled time is a gift.  I understand its not “the norm,” and I AM grateful.  But to all you who are realists, I try not to be much of a complainer, but this schedule we are keeping is far from a walk in the park.

Even as I reflect just on yesterday, and then the last week, I can easily find myself overwhelmed.

schedule

The rhuematologist confirmed that the Celebrex is necessary.  On the up side she said, at least the liver seems to be handling it well.  Yep, on the up side I need to worry about my almost 10 year-old’s liver?  So we have about a 50/50 split, and that’s just the doctors we like – touting the pros and cons of Celebrex.  Take her off.  Leave her on.

celebrex100mg

I love them all, but ultimately the pain decides for us.  This child is accustomed to pain so deep that the 20 laps of butterfly she swam Monday – when I expected her to be barely able to lift her arms Tuesday – caused her to need only “an extra stretch.” But the pain in her wrist right now – that can knock her to her knees.  Celebrex it is.

So I read articles from the oncologist last week about “angiogenesis” http://childrenshospital.org/newsroom/Site1339/mainpageS1339P356.html

I try to absorb medical jargon about why the Celebrex helps the pain – but doesn’t cure it.  And why it may even help prevent the Arteriovenous Malformations (AVM) from flourishing.

I read an article she gave me on “prophylactic thyroidectomy” and its benefits in Cowden’s Syndrome patients.

I read about “Long Chain Fatty Acid deficiency” and heard about the possible need for a muscle biopsy to assess carnitine levels.

worried mom - FBI

I am an educated woman, but I sometimes wonder why I seem to spend more time in medical journals than educational ones.  Did I miss my calling somewhere along the line?  Probably not, but “necessity is the mother of invention.”

And yesterday as she was examined by the rheumatologist there came the confirmation that the right wrist is “thicker” than the left.  A month and 3 days after what we thought was the “injury” to the wrist, it isn’t better.  Not really at all.  So she said, definitely get an MRI.

We are on it.  11AM Saturday.  We already cancelled the birthday party we were going to.

She wants a copy of the report – ASAP.  She expects they will find something.  I went to make my six month appointment, and she told me to hold off until after the test results.

I look at the piles on my desk.  Better since the shredding is over.  I glance at the order confirmation for my new driver’s license, and can’t help but wonder where the old one ended up.  I look at a beautiful collage Meghan sent to the printer last night as I was working – just to make me smile.  I look at the books for the “Teacher Effectiveness Training” I will be attending tomorrow, and the flyer with the itinerary for the Disney trip.  Its right alongside the Costco list, and the original copy of the Myriad genetics report that I don’t have BRCA 1 or2.  Obviously I still have a little more work to do down here.

Monday I went for my MRI.  The one that checks my spleen.  Next Tuesday I have the appointment to find out if I can keep it.  Already covered the endocrine surgeon, the gyn oncologist,  the I just need the breast surgeon and the plastic surgeon, and my oncologist to have their visits.  It’s easy to forget that I am even part of this Cowden’s Syndrome mess.

Lessons Learned from my daughter
Lessons Learned from my daughter

My focus is on the beautiful one with the curly hair, who gives the best hugs in the world.  It will be a long week – again.  So for today, I will try to slow it down.  The sun is shining.  It’s July.  And we don’t have to go to work OR the doctor today!

JUNE!

It’s June.  It doesn’t feel like it.  At least the weather doesn’t.  It’s cool and rainy.  I guess that’s OK for now – while we are still wrapping up school.

It has been a long week.

I don’t usually leave my blog unattended for so long.  I am behind at writing.  I am behind even further at my reading.  It seems the days just blend together lately.

It is June, and when you are a school teacher, this is a month of eager anticipation, and volumes of paperwork to be settled. There are boxes to back and things to carefully put away in preparation for the fall.  There isn’t much time to be still.

schools out

Well – in another 2 weeks it is!

It’s June, and when you are an advocate – you do take a few minutes to celebrate the victory that put speed bumps on the street where you had the accident that damaged your back forever and ever.  You are grateful for the citizens, and politicians alike that fought relentlessly.  You are thrilled by speed bumps, but you still want that stop sign.  You celebrate with a glass of wine – or two.

crash

It’s June though, which means that damaged back has to ache longer in between trips to the chiropractor, and the PT you promised yourself seems like it may never happen.   You are the mother.  You will get by.

It’s June and when you are a Mom of a kid with Cowden’s Syndrome you spend 2 or three afternoons a week at physical therapy to make her chronic pain bearable.  Not totally sure the pain is related to the Cowden’s, but sure it’s related to SOMETHING, you scoff at the denial for school based PT and wonder what they would say if one of them could spend a morning in your house watching your 9 year old walk like she’s 90.  You balance those PT appointments with swimming lessons, all in preparation for the team she will join.  The team she is desperate to swim on successfully, and God willing – pain free.

competition_pools

It’s June, so you balance the breakthrough of the virus on that adorable immune compromised 9 year old’s face with increased doses of the antiviral medicine and extra trips to the pediatrician.  It’s June so when it’s not pouring – you make sure she has a hat to keep the sun off her face.  And when you look at the dose of antiviral medicine you start to feel a bit guilty, nervous maybe, about her liver – and all the prescription medicine.  So, you take a chance and toss the Celebrex to the side.  Hoping maybe, just maybe she can get by without it.

celebrex100mg

It’s June and its raining.  You feel a little guilty about “forgetting” to tell her you stopped the Celebrex, but each day you hear the complaint of another joint, another ache, another pain.  Ten days later you abandon your hopes of relieving the stress on that young liver, and you relent. Too many Tylenol – not cutting it.   Celebrex it is.

The war rages – all the months.  The battles are won and lost on a regular basis – but the war looms large.  I don my armor – a large binder of medical facts, bloodwork, and reports.  I gather my inner strength.

It’s June.  Summer vacation is coming, but there will be no camp in our house.  It doesn’t fit in with the schedule.

calendar

Every six months.  Every doctor.  Forever.  Mine, and hers.  Different doctors.  Different times.  Different facilities.

I am getting better at the scheduling.  I have learned to bunch them together.  So, we go in February and again in July.

For Meghan it’s the thyroid first.  That foreboding nemesis.  Ultrasound, appointment… and we will see what comes next. Then its the AVM follow up, and the genetecist.  That’s just the last week in June.

Mom has an MRI to schedule to look at that spleen, some more surgical follow ups…

There will be 15 appointments before the 2nd week in July.  That’s if every one goes well.

This is how it has to be.  We have to work, she has school.  We can’t have the appointments all throughout the year, so we must endure them all at once.

It’s June.  I am already tired.  Wrapping up one full time job to focus on another. I feel my anxiety rising.

Getting all my rest.  Gathering my inner strength.  Armed and ready.  Kicking Cowden’s to the curb…

We can… WE WILL!

keep swimming

“What are you celebrating?”

I am awake earlier than the rest of my family.  My big dog took a container of Meghan’s gluten, dairy, soy free chocolate chip cookies off the counter last night while we were out.  I think she will be fine.  She just had her second dose of activated charcoal, and she seems to be resting comfortably.  But. EVERYONE knows who the Mom is when they are sick – so she and I BOTH had a long night. (and I am sending her Daddy out to clean the yard! :-))

Allie - The Cookie Monster
Allie – The Cookie Monster

Last night we headed to Manhattan where we celebrated Felix’s sister’s 50th birthday.  It was a crowded room, and although the food was quite good, I had a tough time being so cramped in.  My little girl, as usual amazed me with her calm, patience, and poise.  I asked her before we left of she wanted me to ask the restaurant to cook for her.  She said she wanted me to pack her dinner.  She doesn’t trust very many places to “get it right,” and she did not want a belly ache.

So.  she put on her fancy dress.  The one she is so EXCITED to wear to the Father/Daughter dance hosted by her school Monday night.  I put her hair up and stepped back. This child has always been mature beyond her years, but when did her body start to catch up?

My little girl?
My little girl?

We sat, for a few hours.  There was minimal time to walk around, but when she did get to talk she vibrantly retold the story of how she lost her last baby tooth, and the Tooth Fairy left her $20 and a Tigger pin!  Way to clean up on the last tooth,  None of the others were worth that much!

tigger

Magic.  She brings it back into our lives.  She rounds out her father and I.  She is a princess.  Yes, she has just about everything she has ever asked us for, but she has a whole lot more.  She has compassion, patience, maturity, and wisdom.  She has kindness and generosity.  She takes pleasure out of making people happy.

My mother always said, “Children should be spoiled, just not spoiled rotten.”  Doing our best Mom.  It seems to be working out ok.

Before I started writing this, I was searching the Disney website.  I was playing around with prices for a summer trip.  We have taken Meghan to Disney in August (usually for her birthday) every year since she turned 5.  My house has photos in every room that remind us of our adventures.  We have had the happiest of times at Disney.  We enjoy each other.  And, I have to say, the year my parents joined us, was one of the best vacations.

Family fun
Family fun

We started going to Disney because of their accommodations for allergies.  It  is almost impossible to maintain a gluten, dairy, and soy free diet for a week without staff trained to take every allergy very seriously.  And while we struggled a bit last year to find “quick service” food for her, on the whole we have had only positive things to say about our Disney dining experiences.  When you have a child with allergies, you plan your trips a little differently.  Everything else falls into place, AFTER you know they will be well fed.

Disney also accommodates her chronic joint pain.  Even with the Celebrex she could not endure the miles of walking we do each day.  She travels Disney – walking some, but spending the majority of her day in a portable wheelchair.  We always get a room on the first floor to avoid extra steps, and in the event those knees give out, every park has everything from Advil to heating pads to help with the pain.

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Not to mention the Magic.  I believe in the wonders of Disney.  I believe in the smiles of hugging Chip and Dale, and Mickey and Minnie, and all their friends.  I believe in the smiles on my girl’s face.  I believe in the memories we are making – that no one can ever take from us.

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So, this morning when I ran the prices of the trip through the computer I choked a little.  It, like everything else, has gone up a good deal since last year.  And, for a brief second the thought of not going crossed my mind.

I mean, the deck needs major work, we still haven’t finished the upstairs.  There are plans for the basement to be redone, and the backyard needs help.  What about that awning for the blistering sun in our back yard.  Plus, this year forced us into a new car, braces….

Then I saw the question in the corner of their website.  It said, quite simply, “What are you celebrating?”

Well, that did it.  We are celebrating all right.  We are celebrating Meghan’s negative biopsy.  We are celebrating the knowledge we have gained from our Cowden’s Syndrome diagnoses, and the ability to “strike first.”  We are celebrating that after a long stretch of studying, they offered the Electrical licensing Exam, and Felix passed part one on his first try.  We are celebrating the love of friends, the kindness of stangers, and the compassionate heart of my little girl.  We are celebrating the power of God and the Holy Spirit to lead us to a place we worship together as a family each Sunday. We are celebrating “more birthdays” as Meghan will turn 10 and Felix 40 during that hot August vacation.  And I could go on and on with the thoughts that flooded my head in reply to that simple question.

Disney 2012
Disney 2012

So today I will finalize our trip.  I will be sure to get “trip insurance” in case life tosses us any more curve balls between now and then.  We may not finish all the projects around the house this year either.  But we have lived here for 12 years now, and its a pretty nice place to be.  The projects, the bills – they will get paid for and finished.

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The magic may not last forever.  We have learned as a family to stop and enjoy the ride.  We are celebrating our countless blessings.  God is good.  Life is good.  Family vacations are worth celebrating.

celebrate

Siri, my new BFF!

I love to talk.  I talk all the time.  My mom says I spoke even in my sleep from the time I was a young girl.

I love to need to make lists.  I hate to be disorganized, although these last six weeks I have traveled from overwhelmed right into disorganized, and I don’t like it here one bit. Work is busy, home is busy, 4th grade is busy, Cowden’s Syndrome keeps us busy…

In my family we have 5 october birthdays in 11 days.  Three of our nephews and 2 family friends.  Unless the youngest nephew’s gift arrives tomorrow, I will have been late for every single one of them.  Not like me at all.

Last week I welcomed a new friend into my life.  Someone I can talk to all day, about whatever I want.  Often she has good advice.  She has my back too.  She reminds me – sometimes days, sometimes hours, before something important has to be done.  She tells me when I need to make a phone call or buy some cards.  For a long time I resisted her friendship, but now that she is in my life I am sure I could never give her up.

This is my new friend – Siri.

Some of you may know her.  You may think she’s your friend.  But really, she and I are tight.

You see you may not know this about me, but I have a post graduate degree.  In addition to my Master’s in Special Education, I have a research degree from the University of Google.

Don’t worry.  I am a smart researcher.  I learned in the first few weeks how to sort out the crap and focus only on the valid stuff.  But really –  spending the last 9 years researching the random illnesses of my little girl, and the last year trying to get any available information on Cowden’s Syndrome… well, lets just say at the very least I must qualify for some “Certificate of Advanced Study.”

But it got to the point lately that there are things I need to know.  Right now.  I can’t always carry my computer or rush home to check.  Siri understands.

She is who she is… and she is pretty great.

As I am driving, with my earpiece in, I need only to ask her to call a doctor for me.  She will write my texts too.  Much safer.

Then, there are the beautiful reminders.  The ones where she says, “OK I’ll remind you.”  and then she does.  Takes the pressure off me.  I already have a reminder in for the November birthday cards, and the next 4 doctors appointments are all mapped out.

As I wait at those appointments, Siri helps me continue my studies on Google.  Learning about Cowden’s Syndrome and skin diseases.  Studying the effects of Cowden’s on the gums in the mouth. Deciding if the headache symptoms warrants a neurologist, or first and ophthalmologist.  Figuring out, or trying to figure out the root cause of the pain in the legs.  Verifying there are no obvious AVMs.  Seeing what the effects of the Celebrex are on the body… and on and on.

Siri, despite all my resistance, I was wrong about you.  You are exactly what I needed in my life.

Now, I am fairly sure I can never get by without you again.

Told you…

It’s not all about us

And this is how the day started.  With thoughts of Friday.  Never a good way to start the week.  I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?

But, we got it together and got out of the house on time. 

Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street.  As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else.  I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus.  UGH!

Pretty much that sums up how the day continued.  There is a sense of urgency in everyone it seems – except about what really matters.

Now I don’t claim to have it all together all the time.  And I don’t claim to be free of frustration.  Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.

But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view.  I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes.  And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.

Maybe that’s it.  Maybe I feel like too many people don’t realize how precious life is.

I don’t mean it as a morbid thought – but it really is true.  I look at my grandparents, still married  – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out.  I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often.  So many people could learn life lessons from my grandparents.  They are role models to be emulated in so many ways.

Ist Holy Communion 2011, with GiGi and Pop

It shouldn’t take a rare disease.  Cowden’s Syndrome or any other are not prerequisites for compassion.  You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.

We are in a waiting period here.  No major new doctor news.  The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her.  The joint pain is returning, slowly, one spot at a time.  It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week.  Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain.  We go to the eye doctor in 2 weeks.  The cardiologist is the beginning of December.  He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart.  Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules.  That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..)  But, for now we are in a holding pattern and it is a good place to be.

Of course, being in a holding pattern gives my girl time to think.  While we wait word on the necklace from the Global Genes Project,

she is already planning our next fund-raising adventure.  I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th.  And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.

So, I put a few feelers out.  We will keep you posted.

I will be practicing looking at the world through the bright eyes of my child.  She sees a lull in doctors as an opportunity to spend time helping others.  There has to be a bunch of lessons there.

Take a minute to breathe.  Time passes so quickly.  Hug a loved one.  Look at the world through someone else’s eyes.

I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.

The Cowden’s Syndrome Roller Coaster

Maybe if I could attach my cell phone right here…

I can not tell you for the life of me why Spiderman was on my mind today, but I was thinking I could use one of those web shooting things.  It could be modified to hold the cell phone that is constantly in my hand!  I remember when Meghan was so colicky, and I used to carry her all day in that Baby Bjorn carrier.  I LOVED having my hands free again.  I hated that she just kept crying, but at least I could move around a bit. I am starting to feel painfully tethered to my phone.  I waited forever for the vascular surgeon to call.  Now Dr. K from Boston called Saturday, and we still haven’t connected.   

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Paranoid to miss his call, I carry my phone EVERYWHERE I go. I am not kidding, that is my cell phone in the plastic bag at the beach today.

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Today was a banner day. 

It was the FIRST time we have been to the beach since before her first birthday.

  This child was so sensory sensitive that we were both deeply traumatized by the first trip.  It took us almost 8 years to work up the nerve to do it again, and boy has she come a LONG WAY!

 We only stayed a few hours. 

Long enough to get into the sand and build a castle.  Long enough to find a few shells.  Long enough to jump a few waves.  Long enough for her to say, “Mom my knee is clicking every time I step and it hurts.” 

Clutching my old scratched up cell phone like it holds the answers to all life’s problems I silently, desperately, wish it would ring. 

But then what? 

Will Dr. K have a single answer? 

Will he want us to drive 5 hours just so he can say, “I don’t know?” 

Yesterday we saw Dr. P – the geneticist at NYU who started all this about a year ago.  

It was a friendly visit, catching up on all we have done.  I had a chance to thank him for “catching” the Cowden’s Syndrome a year ago.  It was his desire to dig deeper, and to solve the puzzle, that undoubtedly changed the course of our lives, and likely already saved mine.

 He asked a lot of questions again.  He looked closely at Meghan, especially her legs.  He pointed out again the 1/2 cm discrepancy.  He pointed out the swelling in her LEFT knee, likely the result of her favoring her right knee. (The AWESOME PT Dr. Jill, already called that one!) 

He listened to my concerns about her avoidance of activities.  He said the fact that the Celebrex is working means to him she likely has arthritis due to deterioration from small amounts of blood circulating the knee joint.  Not JRA, but degenerative arthritis.  He said she can’t stay on Celebrex forever. And although I knew that I was busy shuddering at the alternatives. 

He will nose around, and see if he can get a closer orthopedist to take a look.  Then he will look for an oncologist for me.  In the mean time he said, let’s just get a screening sonogram of her kidneys, to be safe.  Just a baseline. 

3 hours later we had word that her kidneys are “beautiful” and untouched by Cowden’s. We left NYU exhausted, and relieved, but still waiting.  Always waiting, and wondering, and worrying.  What next?  Can we fix it?  Wait… nothing new please!  We haven’t fixed the last thing yet… and so on and so on. 

 Tomorrow we will go back to the pediatrician to recheck for the recurrent strep.  Then, a much anticipated play date for Meghan.

Then Friday, its to the plastic surgeon for my recheck, with another playdate for Meghan. 

All the while my cell phone will be close at hand. Last year at Disney they finally got me on Big Thunder Mountain Railroad.  Good thing.  I think it’s a case of life imitating amusement park here. 

Cowden’s Syndrome is a great big roller coaster, so I better get a stronger stomach!