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.

books

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….

run-clock

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.

Isagenix

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.

calendar

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.

blood-testing

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.

 

All kinds of tests

So my fourth grader told me today that her State Exam was “tricky,” but she thought she got only 2 wrong.

I have absolutely no idea if her assessment is accurate.  I am only grateful that for one afternoon, her anxiety was lower.

questions

Last night before she went to bed, we spoke a lot about testing, and my expectations for her.

As I have said before stress, and chronic illness just don’t mix, so I am careful with my words.

So, I explained to her that her best – regardless of the attached number – will ALWAYS be good enough for her father and I.

Wise beyond her years, she quoted a former teacher who apparently told them, “Your best is good enough for your parents. Your best is good enough for me. Now make sure your best is good enough for you.”  This followed by a cheery, “Chill out – You got this!”

As she lay her head down, last night, and tonight, she repeated those words to me.

There really are so many teachers who “get it.”  The kids are so much more than any number on a piece of paper.

It is such a challenge being on the parent end of things.

test prep

But, at the end of the day, these aren’t the tests that matter to me.   Not really.

On Monday the 1st of April there were 13 vials of blood.  On Saturday the 6th there were 15 more.

This weekend there was a 24 hour urine test, and 7 more vials of blood before school Monday.

These are the tests that keep me up at night.

These are the tests she has no control over.

These are the tests whose scores really do matter.

Hormones, Thyroid, neurotransmitters, immune function…etc… etc…

The results for the school tests won’t be in until August.

Some time in the next week I will have to deal with this latest lab panel, and determine if we have any new answers, or just more questions.

Perspective is a definite reality check sometimes.

She will go to school and do her best, and I know regardless – she is already successful.

I only wish I could hold onto that same confidence, as I await these lab tests.

blood-testing

Random Reflections – nothing profound today!

We tried another church today.  This time all three of us went.  A little different than what we are used to, or I should say WERE used to – but it holds some promise nonetheless.  Before we had even left we had been given a tour of the facility by the pastor, and Meghan was invited to a free music class Thursday afternoon.

Førde Church, a typical Protestant church in N...

God has a plan.  And while we did not head all the way to Norway where Wikipedia tells me this picture is from, we were away from “home.”  I am working to keep my eyes open and focused because to be quite honest some days God flat out confuses me.  So we will see.  At least we worshipped together as a family – for the first time in months!

It was gray and overcast a lot of the day.  Glad we got in a swim yesterday.  It may have been the last one.  We would close the pool tomorrow, but we need to call a man about some air bubbles in the liner.  Hoping its nothing too serious. 

We got to spend the afternoon with my grandparents and my parents.  Last minute plans are always a treat when we get to be with family.  Pop was 93 last week.  Grandma will be 92 in 2 weeks.  GGMa is not quite up there, but it is still always a reminder of how fortunate I truly am to see my grandparents interacting with my daughter.

The oncologist’s nurse called me Friday.  She wants a copy of an old abdominal sonogram on CD so they can sort out the spleen, and why it seems to suddenly be growing so many things.  I told her it was going to take me a bit of time to get it because it was 4:40 on the Friday before a holiday weekend.  She told me I could get it Tuesday.  I chuckled.

No matter how hard I try…  “I plan, God laughs.”

I explained to her that after 9 and a half weeks of summer vacation, I return to work Tuesday.  I will not physically be able to have the CD burned until Friday.  They will get it in about a week and a half.  At which point she nicely reminded me that it could be serious.  To which I replied quite simply, “No it can’t, because I don’t have time.”

She was appalled I think.  But, what I meant was, I have undergone 2 major surgeries in the last 6 months.  I have a colonoscopy scheduled for one of the days off this month, and an orthodontic visit with Meghan on the next one.  Unless you can prove to me my spleen is about to explode or damage some other remaining internal organ – HANDS OFF!

I am about done with all these doctors!

So as much as I did my best to plan to keep next week, the first days of school, free and empty of things to do – the yellow pad next to me gets more full by the minute.

I will at some point get that CD.  I will get the results of Meghan’s blood test and MRI.  I will call Meghan’s school and sort out the busing mess that is developing for the first day of school.  I will get the pool guy to show up when someone is home and tell me if I need to fix the pool before it can be closed.  I will get Meghan to swim class, the orthodontist, and that new music class, and to Physical Therapy too.

I will get back to work.  We will get back to homework, and a schedule that hopefully involves more kids and less doctors.

There will be stress, and tears, and nervous stomachs, and excitement.

And for Mommy – there will also be wine.  LOTS of wine!

Although I must admit sometimes it’s nice to reflect with a few “normal” worries mixed in!

“It’s not fair!”

“It’s NOT fair Daddy!”  Came the screech from the basement.  I held my breath. 

“You can’t do that Daddy!  It’s NOT fair!”

When I heard my husband return the challenge with an “Oh yeah? Watch this!”  I knew all was well.  The giggling that followed sealed the deal.

I couldn’t help but find it a bit ironic that of all the things that have gone on in her life, she chooses a helicopter game in the basement with her Dad, to shout the words,”IT’S NOT FAIR!”

She didn’t use those words once, all summer, when we spent what I equate to an OBSCENE amount of hours in doctor’s offices and waiting rooms.  She didn’t utter those words as she was poked and prodded and asked the same questions over and over. “They never find the answers anyway, Mommy.”

She didn’t tell me it wasn’t fair, when instead of planning playdates, or camp experiences we were trekking back and forth to Manhattan, for her, or for me.  She simply wiggled in the play time when there was room.

This morning, when I sprung on her the idea that she needed bloodwork, after the bank, and before the orthodontist, she could have EASILY told me. “It’s not fair!”  And I would have understood.  I know very few people who have given up more blood than she has.  And when the lab was full, and we had to come back later, so she could think about it all day, she definitely could have told me, “It’s not fair!”  But she didn’t.

This morning when we learned that her braces are imminent, and that she is going to need to contend with them in addition to her new grade and ever changing body – I expected a yell.  Nope.  “Won’t it be great to have them off before most of my friends even get theirs on?”

So as I scheduled one more MRI this week.  This one for her, to make sure the pituitary is its proper size with no extra features… I thought it would be a big foot stamping, “It’s not fair!”  Nothing.  Just the typical, “Can you stay, and will I need a needle?”  Followed by, “I hope I can watch a movie this time because I don’t like having my head done.”  How disturbing that this will be her third brain MRI.

This has been one hell of a summer, following one seriously wild spring.  I have lost count of the appointments, and it is probably better.  They aren’t going anywhere and we will continue to have to roll with it.  As the last week of summer vacation comes to a close, and I lament the lack of relaxation, the cleaning that never happened, the day trips that never came to pass, I want to shout, “IT”S NOT FAIR!”

But then I look at my 9 year old.  Wise beyond her years.  Content to live in this house where she is so loved and appreciated.  We have had many talks about the suffering of others through the years, and especially this year.  She knows she is not alone in having a tough path to travel.  She also knows it could be worse.

Maybe that contributes to the poise and grace under pressure.  Maybe that is why she is so insanely mature.  Or maybe, in the midst of the chaos that is Cowden’s Syndrome, we – her father and I – are just the luckiest parents in the world.

But God is good – all the time!