Good to Have Goals…

And every time I sit down to write I get distracted.  Forgive my attention issues.  There seems to be too much to attend to at once – and I have issues.

I didn’t want to go today.  I didn’t.  But I had to.  Cause it’s time.  It’s actually way past time to address the chronic, throbbing, aching in my legs.  I saw a doctor last summer when I was near the end of my rope.  That was a mess, which ended with me quite sure that a doctor with a staff that obnoxious would never be operating on me.

end of my rope

And, maybe it was for the better.  Because I never felt quite right about him anyway.  So I pulled myself together and I went to another doctor.  A second opinion.  This one was worried about an abdominal aneurysm, which thankfully was not the case, but at least he paid some attention.  “You need a CT scan,” he said.  “I need to make sure nothing vascular is wrong in your abdomen triggering all these veins to go bad. ‘ (I’ve had 7 addressed so far.)

I explained that I should only have CT scans when absolutely necessary.  I told him about the radiation risk, which is especially dangerous for those of us with a PTEN mutation when cells can misbehave and develop into tumors of all sorts with ridiculous frequency – especially when provoked.  I even explained I was allergic to CT contrast dye.

I was sent for the scan – premedicated for the allergy.  Left only to pray that the radiation minded its own business.  And the report came, and there were unsettling omissions – like checking the box that my ovaries and uterus (gone now since May 2012) were doing fine, and ignoring the large tumors being carefully watched on my spleen, and the cyst on my kidney.  I was bothered.  The doctor called to go over the report with me but didn’t have my chart and couldn’t answer my questions.  I had the report amended.  I tried to find someone else to read the disk.  I thought I had struck gold in November when a doctor took an interest in our case, but that – like all other things – was not to be.  So I waited a few more months.  When January came and I was pretty sure Meghan would not be using the February week for surgery, I called to schedule mine.  It was time to get the vein removed – starting with the right one.  Triage.

I asked if I should see the doctor again since it had been a few months.  I was told no, and given a date for the surgery.

hand in a door

Today was Pre Admission Testing at the Hospital.  I think I’d enjoy getting my hand stuck in a door more than that.  It is a mess of people who know very little asking the same questions over and over when they don’t know the answer.  Instead of Pre testing, perhaps they should call it CYA – a way to prove to everyone you were healthy before they did whatever you needed.

Stop all your over the counter medications today.

Why?

Because some of them thin blood.

Which ones?

I don’t know – but they tell us to have you stop all of them.

My probiotic thins blood?

I just have to tell you to stop them all.

sigh

We were moving along until I read the consent form.  “Left leg.”

Um… right leg…

At first she questioned me.  Then she picked up the phone to question the doctor.  The answer came with a new consent form and a request for me to see the doctor.  Tomorrow between 9 and 2.  Um, no.  How about Tuesday?  That I can do.  Cause I LOVE spending my entire vacation – every time – in a doctor’s office of some type.

And as I was leaving she said, “You forgot your chest X-ray.”

Insert speech about radiation and Cowden’s here.  As well as, why would I need a chest X-ray if I am not sick and my lungs are clear?

Right.  You can get your x-ray down the hall.

radiation

No one asked for a supervisor.  No one checked in on anything.  This woman undoubtedly knew nothing of my condition, only told me my procedure would be cancelled if I didn’t go.  For a hot second I did wonder if that wasn’t a better idea.  But, there was a kid to get home to, and a dance she wanted to get to, and so many reasons to run away, and so many reasons it has to get done.  But, in the end the pain in the legs drove me down the hall.  Where I took another, albeit small, hit of radiation to the spot where my breasts that were removed harboring early stage breast cancer once lived.  But, for good measure they put a cape on my abdomen.  To protect the uterus and ovaries THAT AREN’T THERE!

I left angry.  Sad.  Mad.  Frustrated.  And grateful.

Grateful at least that the bungling was being practiced on me and not Meghan.

Next Thursday the 19th.  It’s a minor procedure.  But, wow.  I think I need some prayers.

And them Friday the 20th it’s off to the orthopedist for Meghan

You see the MRI she had January 22nd – that I battled to have read until February 2nd- showed a decent size residual AVM in the knee.  It’s not gone.  In reality, its not much smaller than it was.  Perhaps a bit less angry, without as intense of a blood flow, but yet still 2 x 1 cm embedded in the meniscus, and aggravating all sorts of other things.

ER 11/24
ER 11/24

And just for fun this MRI showed evidence of problems in the knee itself.  Too much messing around with loose blood flow for too long.  There is some deterioration and its time for an orthopedic surgeon, the chief at a Long Island Children’s hospital to take a look.

I didn’t write the week I was ready to string up the vascular surgeon for not getting back to me.  I thought it better to say nothing, because I could find NOTHING nice to say that week.  Now,  I am calmer.  And we need him.  So I breathe deeply.  And I told his PA in my calmest angry voice, that no matter how busy they get, they need not forget there are humans, with families and real pains, and anxieties on the other end of those CD images.

In reality it doesn’t matter, because I suspect there is no good solution.  They offered us another embolization.  She recovers poorly from them.  And truth be told, they aren’t working.  And since insanity is defined as doing the same thing over and over expecting a different result – we decided to hold off a bit.

Just-Tired

Plus, there is the whole endocrine thing to deal with.  Like the TSH level that again doubled in 6 weeks on a higher dose of synthroid.  And a kid who is functioning with numbers that would level me.  So the doctor said, “I can’t explain it.”  And he won’t prescribe an alternative medication.  But he acknowledged the idea of insanity, and raising her synthroid again with no plan is definitely insanity.  So we talked about T4 (Synthroid) and how she is at the upper dosing for her weight.  And then we talked about how its the body’s job to change T4 into T3 so it can be used.  So, I asked if it was possible that her blood levels of T4 were there, but her body was flubbing the conversion, which it has done before.  If that was the case, that would explain her symptoms.  So, we added some T3 to her existing dose of T4.  And then she gets to wait 6 weeks again for a chance she may feel a but human.

Thankfully we’ve chosen to surround ourselves with positive distractions.

Thankfully 163 people are coming on Sunday to the Jeans for Rare Genes fundraiser, benefiting the PTEN foundation and the Global Genes Project.

Fortunately, my girl had influenced lots of people, and motivated them to raise awareness and support her favorite charities.

Fortunately, we have places to look to besides ourselves.

As I sit here with the seating chart to my right, and raffle prices to be typed on my left, I am grateful that there is a project.  I am humbled by my girl and her determination to be “normal,” and a powerful advocate all at the same time.

photo 4 (1)

It will all work out.  It’s got to.

We’ve got things to do…

We are BEATINGCOWDENS!

Rare Disease Day Fundraiser

Coaches Change Lives

I know that teachers have the power to change lives, but as my girl gets to the middle school years, I am really starting to think the power is with the coaches.

I have always wanted my daughter to be an athlete, and truth be told, THAT didn’t take much convincing.  She is a natural competitor.  She loves the thrill of racing. competing, and performing.  She has done some time in soccer, with some fantastic coaches, who worked to nurture her.  She loved her time dancing.  But, her body, much to her chagrin, was not made for pounding.  The knees, and hips, and major joints couldn’t handle the impact.

So we headed to the pool.  Her first experience with any competitive swimming came at the age of 9, on a CYO team we were connected to through a friend.  Soon after that season she tried out, and was accepted to join a 12 month team.  She began with them in July of 2013.  And, while the desire to compete was always strong in her, it seemed there was constantly something standing in her way.

some days

We started the year with the goal of making 2-3 practices a week.  But, in the fall things took some wild turns, and there were migraines, and neurologist visits, viruses, and fatigue, and strep, and one obstacle after another.  There were weeks one practice seemed like a feat.  Meghan had a hard time finding her place, because she wasn’t there much.  And the cycle continued.  During the fall my father became ill and passed away quite suddenly in December.  That set her into a bit of a tailspin.  Then in the end of December a routine thyroid appointment told us there was much to be concerned about, and that she’d need her thyroid removed.

coach

Ironically this is about the time she started to enjoy going to practice.  The coaches were intelligent, and compassionate.  The kids were all finding their way.

Meghan responded so well to the two young women who coached her most often.  They understood her medical trials, but treated her no differently.  They pushed her just enough, but never too hard.  They listened when things hurt, and gave her ways to work through it.

She mustered the courage, and stayed healthy enough to make it to her first big meet in January.  She was awed by the whole experience, and truth be told, I don’t even remember what she swam.  Like so many firsts, it was about getting it done.

Thyroid surgery in February sidelined her for a few weeks.  And, long after her body had healed physically, her thyroid hormone levels never seemed to take to the synthetic replacements.  An emergency room trip in February – 10 days post op, led to an overnight stay and the elimination of the synthetic calcium from her diet completely.

But, by the beginning of March she headed back to practice.  Her coaches welcomed her, encouraged her, and built her up.  She started making regular practices, and swimming CYO at the same time.

Then, in May her body quit again.  Severe gastritis landed her in the local hospital for 6 days.  She missed her last CYO meet.  She underwent extensive testing, and the blame for the erosions in the esophagus, and the inflamed, bleeding ulcerations in her stomach lay with the Celebrex – the very medication that was allowing her to function through the chronic pain that plagues her.

Coaches-change-lives

Crossroads.

The elimination of Celebrex, and the discoveries of the damage it had caused in her GI tract, led to changes.  Her already Gluten, Dairy, Soy free diet, became also free of beef, spices, chocolate, and the other tastes that had carried her through.  Then there was the pain.  The constant awareness of pain in all her major joints was playing mind games with her.  The pain – very real – could be fed nothing to control it.  Oral pain meds were, and still are off limits.

Weak from her stay in the hospital, it took another week home before she could even consider a return to practice.  And when she did, she was angry.  She was angry at her body for the pain, and angry that she couldn’t keep her old pace.  She was just angry.

But the coaches, they were supportive.  They let her take the lead.  They let her take her time.  She rested when she needed to. She left early when she had to.  And finally, just about 3 weeks ago she started making full practices again.

The pain is a daily battle.  One she is fighting with mental power to overcome, and the best nutrition we can offer to her.

Last week she made 4 days of swim camp with the varsity swimming head coach at the local college.  6 hours a day.  She slept well.  She was sore.  But she was determined.

So, when we set off for the meet upstate yesterday, my expectations were low.  I was hoping she would finish without disqualifying.  100m of butterfly is not for the faint of heart, especially in a 50 meter pool.  But she did it.  And closed in with a time .67 seconds away from qualifying her for Junior Olympics.  Junior Olympics, the best of the best swimmers in her age group.  An honor just to make it in the door.

We went back today to give it one more try, but it wasn’t meant to be.  This year.

Close doesn’t cut it.  This I know.  Except when you consider that she got THIS close, despite all odds, it’s something to consider.  Meghan’s synthetic thyroid replacement is not working.  It’s just not.  At our last appointment we found out her TSH level – the Thyroid Stimulating hormone has increased by over 300% in 6 weeks.  Post operatively it remained about a 10, it took a brief dip to 6, and then over a 6 week span increased to 20.5.  ABNORMALLY HIGH is what it says on the lab report.  That, combined with her low levels of T4 means that the work of the thyroid, that can not be done by the gland that was removed, is not being done by the medication, which has just short of doubled since February.  The endocrinologist is baffled.  I’m concerned, but not shocked.  He agreed to research alternative medication, but he has, “never had to prescribe one before.”  For those of you not thyroid patients, you are considered hypothyroid, once the TSH goes above 5.  Most people feel human between 1 and 3.  I function best when mine is .5.  At 20.5 you would likely not find me out of my bed.  You would certainly not find me at swim practice.

“Mind over matter,” we say.

“Everyone has something,” we say.

“Show the world you are better than Cowden’s Syndrome,” we say.

And she does.  All the time.

On the way home we talked a lot.  We talked about obstacles, and overcoming.  She started to set goals.

swim_coach_journal

And then, there was this text from her coaches.

“”Hi Mrs. Ortega.  (We) just wanted to send you guys a text and let you know how proud we are of Meghan.  She is such a pleasure to coach and is always looking for ways to improve and be her best.  Swimming isn’t only about the times, it’s about the people and having the opportunity to create and share memories, good and bad.  Meghan has so much drive, and goes through more than we can even imagine.  She is truly amazing to go through everything she does and still push her body in the water.  Today was just the first time.  We know there will be plenty more opportunities for her to make cut times, and we know she will.  She has limitless potential and we want her to know that.  She is truly an amazing person, and we are lucky to be able to coach her.”

inspired-life

And in that moment, everything was OK.  Coaches have this incredible power.  They can motivate and heal and push in the same breath.  They are gifted with selflessness like no other.  My heart is grateful for these women who will continue to shape my daughter’s future.  May they always know the impact they are having on a life full of bumps, twists, and turns.

Snow Boots

The winter boots are still in the closet.

It’s June 12th.

Actually Meghan’s room has a basket of winter boots that are not only off-season, but are too small for her.

It’s June 12th, and that is definitely a new record for me.

june12

In my old life clothes got changed systematically in April, and early October.  Jackets got washed, shoes got put away.

That was my old life.  I don’t remember it much.

I don’t really have a big closet.  The spring shoes are upstairs in the hallway.  All over the floor.  I’ve been getting one pair at a time as I need them, but if I don’t hurry and make the switch soon winter shoes will take over my bedroom floor.

Thankfully, Mother Nature seems confused about the season.  That is buying me some time.

Mother-Nature

In my old life, nothing was really on the floor – ever.

We went to the doctor today.  Shocking news really, I know.

We went to the doctor today in hopes of replacing the endocrinologist with someone more open-minded, and “outside the box.”

EPIC FAIL.

What we got instead was a closed box, closed-minded,”I won’t take on your kid, so stay where you are” doctor, in a really bad suit.  (And I’m not much about fashion – so you know it was a REALLY bad suit.)

I had lots of time to look at her, and the suit while I used my hand to keep my mouth from spilling out my actual thoughts and embarrassing my daughter.

I brought the 3 page synopsis of tests, hospitalizations, and medications.

I brought the 3 INCH binder full of lab tests and pathology reports.

I brought the CD of the neck sonogram.

She glanced at her most recent blood work.  She told me her TSH was too high.  She told me she needed more Synthroid.  She told me her current team was just fine.  Then she told me twice they were better suited to treat a Cowden’s Syndrome patient than she.  Feel like a leper much?

I asked all sorts of questions.  I asked about T3, and potential problems with synthetic absorption.  I reminded her that in addition to PTEN she has an MTHFR mutation which impacts her ability to process B12.  I asked if there could be anything else she has trouble processing. (Hint Hint… synthetic thyroid hormone?)

“You’re very smart,” she tells me.  “You know a lot,” she says.  Yet, she deflects my questions like a goalie with a hockey puck.

Hockey-Stick-and-Puck-Photographic-Print-C11950881

News flash.  I don’t need stroking – just answers.

But I watch my tongue.  And I watch my tone, because my daughter is watching my every move, my body language, my attitude.  She is using my response to gauge whether she needs to be uptight.

I asked what was the upper limit for synthroid.  I was told there was none.  I was told that the dose would just continue to be increased.  I was told she would likely reach .200 mcg.  I expressed concern.  I was told not to worry.  The body only absorbs a percentage of the synthetics.  Um, that would be the point of my worry.  She doesn’t have a good history of secreting junk.

I got a lesson on the pituitary and the up and down regulation of TSH.  I was told when to dose the medicine.  I reminded her I have been on thyroid replacement for 27 years.

She asked me if she had answered all my questions.  In my old life I might have politely said, “yes.”  But, this is not my old life.  I smiled, shook her hand, and said “No, actually you didn’t, but I don’t think you know the answers.”  Then we left.

In my old life things were neater, and more orderly in every aspect.  Sometimes I miss the order.  But not for long.  There is nothing orderly about this kid, except her behavior (98% of the time,) and I am learning to embrace the chaos.

She woke this morning feeling like real crap.  Exhausted from swim practice (she made it almost through) and fifth grade trip yesterday.  She hurts.  She is mellow.  She has fun with the kids, but she’s not herself.

Maybe it will just take time, but hours and weeks and months of childhood seem to be ticking away.

I pushed her today to start making dates with friends for the summer.  Her friend’s parents must think I am weird.

It’s as important, or MORE important to plan pay time as it is to plan doctor’s appointments – for so many reasons.  And since we have so many appointments, I want to start with the friend time – NOW.

We live in the middle of New York City.  One would think finding pediatric endocrinology in the mood for a challenge would be much simpler than this.  Instead I am left to return to the surgeon on Monday, so he can validate himself by telling me he doesn’t feel anything in her neck.  And then, back to see the resident of her endocrinologist in July.  (The actual doctor takes off February, July and August – so he has yet to see her since the surgery.)

Life is not ours to plan.  But, we have to try to schedule the fun stuff before the days get away.

We RSVP while holding our breath.

There is more “One day at a time…” than I have ever known.

one day at a time

Maybe there will be some time to get those snow boots away.  In the mean time, if you do stop by- don’t judge the hallway.  Or the closet.  Or the dog fur.

I took a walk yesterday, and another one today.  I listened to music.  It’s a slow process, but I am working on my emotional health.

It seems to be the only thing I can control.

I am working on those foundation stones for Meghan’s bridge.

And in the mean time, if you happen to need any snow boots – I can get them for you in a hurry.  I know exactly where they are.

snow boots2

 

 

Passing time….

So here we sit.  Again.  For the second time post thyroidectomy, we are in the hospital. meg hospital May   The girl doesn’t feel well.  She just doesn’t.  End of story.  But, not too many people seem ready to listen until she’s in a full on physical crisis.  Even then sometimes the numbers are frighteningly low. Yesterday she knew.  She NEVER tells me to stay home from work.  She KNEW.  And my pediatrician heard it in my voice.  She was admitted soon after he saw her.  He wanted it to be the flu.  In some ways I did too.  A little Tamiflu and some rest.  Buts she’s negative for flu.  No real surprise.  Too simple a diagnosis for my girl. Since her surgery in February,  her TSH (Thyroid Stimulating Hormone) which is supposed to rest somewhere between 4. and 4.0 has been lingering well over 10, despite numerous medication adjustments. The TSH is supposed to be down regulated when the synthetic thyroid hormone takes the place of the T4 and T3.  Enough thyroid hormone and the TSH decreases.  Not enough and it increases causing hypo (under active) thyroid symptoms which can range from bone crushing fatigue, to generally feeling unwell and a whole host of issues in between. He medication has been adjusted upward with no effect – several times. I know it takes time.  I barely remember my own battle with thyroid hormones over 20 years ago.  The veterans of this surgery tell me 6 months, a year…  I get it.  I do. But then there is the reality of watching your kid feel crappy every day.  The reality of watching her FIGHT with all her might to do the normal things others take so easily for granted.  And then I get impatient. impatient smiley To complicate things it may not just be the thyroid hormones keeping us hopping. That “lymph node” turned “salivary gland” is now back to a lymph node in the neck.  We are awaiting the ultrasound that I feel should have been done with her appointment last Monday. And there is a fever.  She never gets fever.  Not really.  And yesterday it was 102.  Today around 100.  No answer why.  Not even the White Blood Cell Count gave a clear indicator. And the reflux.  Painful.  Like fire. Lack of desire to eat much of anything leads to weakness. fire And the throat clearing.  Reflux? or lymph node? or something totally different? So we temporarily stopped the celebrex to try to solve the GI issues.  The medical equivalent of robbing Peter to pay Paul.  The joint pain – managed for now – is rearing its head. And why does a 10-year-old, with no gall bladder and a week of the worst reflux of her life – with no dietary changes – begin vomiting bile? Maybe just maybe we will meet up with a decent GI.  Girls can hope. So I sit.  We sit.  Waiting for answers to questions.  Waiting for answers to more questions than we will ever get.  But we are hopeful.  Anxious. At least right this minute the worst part of being here is passing the time with the stupid IV.

They got it the second time!
They got it the second time!

It’s not a sprint… It’s a marathon

life-is-a-marathon

I’m not a runner.  At least not in the traditional way my sisters run.  I don’t really run unless I am being chased.  Tried it for a while but the knees and the back weren’t interested.  So the only running I do is from appointment to appointment.

I guess I run- in a metaphorical sense.

This has been a busy week at our house.  In addition to the host of emotions Friday, we spent the earlier part of the week addressing mandatory appointments – as it seems we do with every single vacation.  It’s old I tell you.  It’s old.

Monday was physical therapy, and then additional genetics for me.  THAT will be a follow-up in and of itself.

Tuesday was our Integrative Medicine doctor on Long Island.  The one who listens carefully and THINKS about my child before making a move.  He ordered a slew of tests.  He is concerned that ALL food seems to be bothering her stomach to some degree.  But, he didn’t rush us out to a GI.  He knew we’d get brushed off.  At 5 foot 2, and about 100 pounds, my tall, thin, beautiful girl is hardly the poster child for malabsorption.  But he knows me well enough to know that I am overloading her with nutrient rich foods to compensate.

We had a wonderful, long talk about nutritional cleansing, and how I would have given my eye teeth for products like the ones I use now to have been on the market 9 years ago when I began my journey with Meghan.  He will look, and sample.  We will talk.

But, he no longer blames one food for Meghan’s pain.  He thinks the balance of her gut, from years on edge – needs some help.  He has suggestions.  We will wait for the lab work.  Half done last Thursday – the rest tomorrow.  Then we will talk.  On the phone.  And we will make a plan.  Have I mentioned how nice it is when you have a doctor who is a fully compassionate human?

never give up

And Wednesday there was chaos.  A 9:00 for me at NYU with my oncologist.  She reviewed my MRI to tell me the spleen tumors are growing – slowly.  But, they can stay for a while.  Whew!  And the cysts on my kidney I forgot all about – stable as well.  WIN!

And then there was Sloan for Meghan.  Blood work first.  Then a follow up with the surgeon who cleared her from the thyroid with no need to return again.  Of course even after waiting almost 2 hours for that appointment – the blood wasn’t in.  And our endocrinologist was “otherwise engaged” and unable to see us on a Wednesday.  So rather than come up twice, we opted to have him just review the blood work.

Then we squeezed in a visit to the ENT who took her tonsils out- hoping he could shed some light on 6 months of throat clearing. We left with the assurance that he had no definitive diagnosis, and he doubled her reflux meds and prescribed a new nasal spray, for inflammation in the nose. That he wasn’t sure was allergy related… I have to call in 2 weeks. Anyone picking up a trend?

The call from the PA about the AM lab work came around 4:30 while Meghan was at swim.

“The thyroid numbers are essentially unchanged, so we are going to raise her medication.”

Me: “How could that be?  you raised her dose 6 weeks ago when the TSH was 10.69.” (reference range high is in the 4s)

“Obviously she needs a higher dose.”

“What was the TSH?”

“We are going to raise her dose to 125mcg” (Essentially my dose)

“WHAT WAS THE TSH?”

“The doctor feels this will help get her numbers in range.”

“WHAT WAS THE NUMBER OF THE TSH?!!?!?!?!??!”

Finally…. “10.54”

Me,” Down only .15 in 6 weeks?  What is the problem?  Did you test her T4 and T3?”

“Only the T4 and its normal.”

“Why not the T3?”

“It’s not relevant.”

“REALLY?  Why?…”  After no response I continued,”When you have a patient not responding traditionally I would think that you would run every test to get the greater picture.”

“We don’t believe in T3”  (To which I actually laughed.  It’s not like it’s Santa Claus or the Easter Bunny!)

“What do you mean you don’t believe in it?  Obviously Meghan is not absorbing the synthroid and there has to be a reason.  I think we need to start investigating before she is hypothyroid for too long.”

“Well, Mrs. Ortega I think you and I are saying the same thing.  She needs more medicine.”

“No, I am saying let’s figure out WHY the medicine is not working.  You are saying to continue to raise the dose of what is NOT working without looking at possible reasons why.”

“Well we will see in 6 weeks.”

Yep.  And for 6 more weeks she will drag her exhausted bottom around – so hypothyroid I know I would barely function.  Hopefully by then I will have found us an endocrinologist willing to accept that there is no “box” Meghan will fit it.  There is not rule her body will not defy.  I am appalled that I am supposedly with the best of the best.  Leaves a scary feeling in your heart.

Onward to the doctor search.

The mail arrived this morning, as we were headed to the orthodontist.  There was a script for Meghan’s next thyroid test.  There was no copy of the labs.  They HATE it when I ask for the labs.  So I called and insisted they be EMailed to me.  It was quickly clear why they didn’t send it, as another test was disconcertingly out of range.  A quick forward to my LI doctor… and we wait.

mc-alex-and-ani-its-not-a-sprint

As we headed out to the orthodontist the mood was light.  Meghan was ready to take impressions for the plan to remove the braces next month.  And when they called me o the back to tell me her bite had “over-corrected” and it would take some time to fix – I just about took the deep breath I needed to speak quietly.

Basically I was being told that because my daughter did EVERYTHING she was told to do religiously she had done TOO good of a job.  Now her overbite had been corrected into teeth that meet to closely.  She stared at me.  I attacked a bit.  I asked why they thought it was OK to month after month make promises that were not to be fulfilled.  Perhaps it was ok for her to get defensive.  Maybe I was attacking.  But, I don’t understand why you say so much to a child.  From the beginning she was flat-out promised her teeth would be ready before her 5th grade graduation.  Now she is getting a MAYBE for September?  Don’t misunderstand me.  I want them on until they are done.  But my issue is that SHE sees the doctor and his staff alone.  THEY say whatever without me being there.  It is NOT ok for you to INTEND to be ready for impressions, and then have things go so wrong in 5 weeks that we appear to be set back 3 months!

The doctor obviously got the message I had had enough.  I like him.  I really do.  And he came out to say to me he …wait for it… had NEVER seen anything like this.  How UNUSUAL it was.  And how 99% of the time things run according to plan.  He apologized.  I reminded him that I had already told him several times to be careful with my girl – she’s not a “typical” case of anything.  I asked them all to watch what they said moving forward.  But it was too late.

To Meghan the message was clear.  She was once again the “unusual” case, and once again.  And to make matters worse this time her GOOD behavior may have contributed.  What a tough message for any kid.

This is the part where I caution you – friends and family alike to withhold any comments about how it could be worse.  Or how its good the teeth are set right before the braces come off.  Or your friend/cousin/brother/kid had their braces on for 5 or 6 or 7 or 8  years and she should be happy it will only be 2.  Because really, at some point something should go her way.  At some point when the orthodontist (who mind you she has been working with on appliances since just after she turned 7 (4 years in August)) says 18 months for the braces, that it should just be 18 months.  Because that’s what happens to the “normal” kids.

We have not lost our grip on reality.  I promise.  We get it. But  some days… some days I have to wonder where the limit is.

Some days when she complains that she just wants to be “normal,” and I try to assure her she is.  I remember days like this at the orthodontist.  Or the 2 days it took her to recover from a 3 hour outdoor play date earlier this week.  Or the “fake spring break” that had more trips to doctors than anything else – again.  And the follow ups that will continue in the weeks ahead.

I cried when we left the orthodontist office.  I cried because I sometimes am just so frustrated at how much she is asked to endure.  And she sat.  Quietly.  Until we got home.  And she screamed a loud piercing scream.  And we hugged.  Because we know we are in this together.  And we know no matter how bad it gets, not matter how tough it is – we have to keep on keeping on.

Tonight I stopped at the mall and bought these.

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One for each of us.  A reminder about the meaning behind all that metaphorical running.

The car got towed today.  The old one.  I think its dead.  Permanently.  We have an appointment to get the oil changed on the new one at 8 am.  We’ll talk to the mechanic then.

Then there is that fasting blood test at 10:15.

The whole identity theft thing seems almost ages ago.

No wonder I don’t run for fun.  Too busy running as a way of life.

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No worries – We are BEATINGCOWDENS!