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

 

 

Building Bridges…

It’s been a while since I’ve written.  If I have my way I’m about to get so focused that you’ll get tired of hearing from me.

Life has become a bit overwhelming.  And some days all of this, this whole chronic illness thing, is just too much to handle.

There are days the path looks like this.

broken bridgeThere are days when it is easy to wonder, “What now?”  or, “What next?”

But that is the very mindset that can find us in a heap of trouble.

So we are trying to work on shifting our focus.  Instead of panicking when the bottom feels like it’s falling out, we are working on reinforcing the structure.

We all need a bridge, a support system of sorts.

With two members of the house who are the 1 in 200,000 unique that comes with having a RARE Disease like Cowden’s Syndrome, it’s so easy to let the illness try to creep into your identity.

I don’t talk too much about me.  Mostly because as any Mom, my needs are second to those of my girl.  But, I too get overwhelmed.  And when I feel like Cowden’s is trying to choke me out – it’s time to pause and reclaim.

I am more than the paperwork and medical records.  I am more than the bills and prescriptions.  I am more than the scheduling and the appointments.  I am more than the mastectomy scars.  I am more than the synthetic thyroid hormone.

I am a mom.

hope stone

I am a wife.

hope stone

I am a friend.

hope stone

I am a Christian.

hope stone

I am a teacher.

hope stone

 I like music.  I like reading John Grisham. I enjoy Law and Order.  I like to laugh.  I CAN’T get by without my Isagenix, and my Ionix.  I appreciate photography, and I really, really like to sleep.

And with each piece of my identity, the pieces of my foundation get stronger.

 

There are things I have to do as a person with Cowden’s Syndrome.  There are things I have to endure.  There are an unnerving amount of tests and appointments and the constant nagging notion that things may spin out on a dime.  But if I am honest – isn’t that what life really is – for everyone?  While the issues may not always be medical, the reality is that despite our best efforts, we have no control.  So, we do “the best we can with what we have where we are.”

And as I get my foundation in place.  As my stones are strategically placed – so they can be stepping stones along the way if needed, I can work on helping Meghan build her bridge.

wooden bridge

I figure once I have it together enough that I can catch her if she falls… she’s free to establish her own pace, and find her own way.

We will forever do outreach work.  We will forever share our story.  We will forever create fund-raising opportunities for research.  That will be part of our lives.  Cowden’s Syndrome will be part of our lives.  But it will not BE our lives.

My daughter has seen more in 10 and a half years than most adults see in a life time.  She has been medically poked, prodded, and cut.  She has been in and out of hospitals.  She has seen doctors hired and fired.  She has been listened to and she has been ignored.  She has had arteries ablated, and a body parts removed.  She has vomited pure bile from a stomach torn apart from pain medicine.  And she has pushed each day through that pain.  She tries to be like the other fifth graders, but she struggles.  She struggles to be understood and to fit in.

But, from my stones, my own developing identity,  I can see her clearly.  Perhaps more clearly than she sees herself some days.

I don’t profess to know all things.  She’s a bright preteen.  There are things I’ll never know, and that in and of itself is OK, and normal, and even healthy.

What I see when I look at Meghan is not Cowden’s Syndrome.

I see a beautiful smile.  I see a kind heart.  I see compassion.  I see love.  I see competitiveness.  I see a swimmer.  I see a singer.  I see a reader.  I see someone who loves to play hard, and relax just as hard.  I see raw determination.  I see high standards.  I see someone, a young woman who makes me proud to be her mom.

This summer we are going to work on building.  I want to be able to provide her stepping-stones.  And then I want to help her build her bridge, with a healthy mix of guidance and independence.

I want her to see she has Cowden’s Syndrome, but it does not have her.  It is an inconvenient part of our lives – but not our entire lives.

We are going to make memories.  We are going to create situations that have nothing to do with doctors or hospitals.  We are going to laugh and play.  We are going to continue to “Live Deliberately.”

And we are going to write it down.  It sounds so silly to think that we have to write down having time for fun, but we do – for now.  Maybe one day it will become so automatic that life’s adventures will become common, and our medical world will fit in the empty spaces.

It’s not going to happen all at once.  There will be days we have to remind each other.  But, we will get there.

And along the way we will slowly build the team of medical professionals who look at us as people, and keep our best interests at the forefront of their practice.

Because as we become empowered, we will be rid of the others.  Positive influences only.  We deserve that.

She made swim practice tonight.  No small feat.

The pain – evident, but managed.

applause

Endocrinology consult Thursday.

Hopeful.

A balanced thyroid certainly would help a few (dozen) things…