Who is in charge?

Meghan slept until 11:20 this morning.  She woke only to the sound of the hammering as her father works to trim out the upstairs rooms – a project that had an intended completion date of about 2005, but hey, life gets in the way sometimes.

We had woken earlier, Felix and I – but not too much earlier.  We had wanted to go to church this morning, but learned a long time ago NEVER to wake Meghan.  She had gone to sleep at 8 PM last night, and if she was still sleeping soundly in her own bed at that hour – well her body was clearly telling us to back off.  We have a lot of respect for her body.  It gets VERY cranky if you don’t listen carefully.

My three girls... resting together.
My three girls… resting together.

But, by 11 – we had become so ingrained in what we were going to do, that it wasn’t too hard to forget that our 9 year old was still sound asleep under her covers.

When she came stumbling out of her room to the sound of the hammer she was dazed but smiling.  After a good morning hug she asked what we had to do today.  When I told her that we were going to stay home all day she leaped into my arms.

Can I read?   Yes…of course.


Can I watch some TV?  Sure.

Can I take my shower later, and stay in my PJs? Absolutely.

While part of me was tempted to lecture her about getting up and showered and dressed, I refrained.  Just because I could never bring myself to spend the day in my PJs, doesn’t mean she can’t.

In so many ways Meghan and I are somewhat different, but also a good deal alike.

Our bodies eventually shut down if they are always on the go.  We need our down time.

energizer bunny

Growing up with a sister and a mother who could move like Energizer Bunnies, I always felt a bit odd that I couldn’t keep up.  They still move like that.  And I still need to stop sometimes.

Now, I have a mini -me.  (And my sister has two! :-))

Me and my girl!
Me and my girl!

So when I looked at the April calendar earlier in the month I had had some serious reservations about whether we could pull it off.  For most of the month we were on a 7 day schedule.

Meghan switched schools.

We had PT twice a week, dance class, music class, swim practice, swim meets, test prep, doctor’s appointments….


But, we did it.  A small hiccup last week when she started with an ear infection, but a quick run to the pediatrician (after the orthodontist, and before it transformed into a full-blown feverish mess) and we got it under control.

State tests – 6 days of them in the last 2 weeks.  Stress – all of them.  But they are over too.

test prep

Yesterday I pulled out Meghan’s spring clothes.  There wasn’t much we could use.  The sandals from last year were a size 6.  She is a 7.5.  The same was true for the clothes.  We put even less away for the fall.  Nothing really.  But we will cross that bridge then.  Right now she is almost 5 feet tall and every inch of her beautiful inside and out.

No wonder she needs to rest sometimes.  Her body is certainly hurrying its way through its growth.

I spent the entire day at my desk.  I just finished about an hour ago when I began to write.  There were bills to file, papers to sort, letters to write.  There is a letter writing campaign I am working on for a stop sign by my school.

There were some Emails to answer about Isagenix – the nutritional system that is changing my husband’s life.


http://meghanleigh8903.isagenix.com/us/en/landing_toxic.html (check that out here)

There were gifts to order, some lists to make, and I can now just about see the desk calendar, as it is ready to turn to May.


I probably should have gotten outside to enjoy the beautiful day too, but I guess this was my respite.  I thrive on order and organization.  I showered early – like I always do, but I relaxed by creating order.

You see Mom taught me a long time ago – that the more you look for order in life, the less you will find it.  “You plan – God Laughs.”  And I know she is right.

I really should listen to my Mom...
I really should listen to my Mom…

However, in this world where so many things are so far out of my control – I have a compulsion to control what I can.  I can make sure the floor is clean, and the bills are paid, and the laundry is done.  I can make sure there are always cupcakes for Meghan in the freezer in case there is a party.  I can buy the cards, and order the gifts, and endeavor valiantly to balance my checkbook.

Crazy?  Maybe.  But I take satisfaction and solace in knowing that there are a few precious things left in my life I can control.

The last of a long series of lab tests ordered by my friend Dr. Elice was done Saturday morning.  This is the week where I will find out what 37 vials of blood and 2 24 hour urine tests turned up.  I will ask the 5,000 questions in my mind about endocrine function, and hormone levels, and ratios, and vitamin absorption.  And, no matter how much I try to anticipate the answer, something will knock me flat on my ass.


That is how it goes.  Cowden’s Syndrome keeps us hopping.  And with Meghan there is an immune system deficiency, the chronic viral infections, and so many more things we are yet to figure out.

So – for tonight, the floor is clean, the list is made, the desk is organized.  For tonight I can rest, and gear up for whatever this week has in store.  And somehow, after dance class, and PT, and swim practice, and 2 meets… somehow it will all be OK.

I’m not in charge of this.  It’s in the hands of a power far greater than any of us.

God's got this

I’m only in charge of keeping the fur off the kitchen floor.


“The Waiting Place…”

Oh, the Places You'll Go!

 “…You can get so confused
that you’ll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place…

…for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or a No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting…” –  Dr. Seuss


There is more to the book.  Lots more, but this is the part that keeps running through my mind, right now, at 1 AM, as I sit buried under a pile of papers.  There is some combination of house bills, medical bills, medical errors that need to be corrected, and “this just has to wait because I can’t deal with it right now.”

I successfully organized a lot, and have a bag of shredding to prove it.  This makes me happy.  I like order.  I strive on structure.  I can sometimes be a little difficult to live with because in my house every toy, every item, has a “home.”  Nothing is left laying around.  I will confess to being a bit compulsive.

Why?  People ask all the time.  Why, with all you have been through, why after the breast cancer, the hysterectomy, Meghan’s surgeries, WHY does it matter if your floor is mopped and your counter is clean?  All the time I hear – LET IT GO!

Well, the truth is – I can’t.

I need control.  I need to control what I can control, which these past few months hasn’t been a whole heck of a lot.  So, if having control over my clean floor and my clutter free desk makes me happy, people are going to have to go with that.

I have mentioned several times that my Mom always says, “You plan, God laughs.”  Well we have joked that He has had a few good chuckles this year.  While I feel INCREDIBLY blessed for the countless things that have gone well, sometimes the fact that Cowden’s Syndrome invaded our house and stripped me of the ability to plan, schedule, control, and order just about anything really gets under my skin.

After Meghan’s AVM surgery in February, we were told she was likely to need additional surgery in a few months.  I did not sign her up for camp, WAITING.  We had the MRI last Thursday.  She spent 2 hours in the tube WAITING for them to take 5,000 images.  I will call again tomorrow, but I will likely spend the week WAITING for the report, and the decision as the whether the next surgery is to happen now or later.

I signed her up for dance once a week, and swimming once a week, but we are WAITING on the MRI results to know if she will complete either of those classes.

Then, with the lack of a structured day she spends her time WAITING and hoping someone will come and swim with her. (That is when we are not WAITING at doctor’s appointments!) Her mother is WAITING for the lingering bleeding from the hysterectomy 7 weeks ago to stop before I head back into the pool.

I feel like these last few months have been full of WAITING.  WAITING for surgery, WAITING to go home, WAITING for pathology, WAITING …

I have no control over any of this.  I do believe GOD is in charge, and I am so comforted by that belief.  It is my human frailty that keeps me searching for ownership and control where it is not mine to have.

I will WAIT.  And I will do it as patiently as I can.  Cowden’s Syndrome will be full of WAITING – forever it seems.

But, I will wait with a clean, organized house.  I can not control this PTEN mutation, or the Cowden’s Syndrome that resulted, but I CAN certainly control the clean counters, and the dog fur… well, most of the time!           

Towards the end of his book Dr. Seuss reminds me, and all of us…

“And will you succeed?
Yes! You will, indeed!
(98 and 3/4 percent guaranteed.)

Signature of Dr. Seuss
Signature of Dr. Seuss (Photo credit: Wikipedia)