“Music, … When it hits you, you feel no pain.”

Since Meghan’s surgery last Tuesday, she and her wrapped hand, and foam “Carter’s Block,” have been sleeping in the king size bed with me, while Daddy has slept in the twin in Meghan’s room.

She usually needs a little bit of room, as she isn’t the calmest sleeper, but we knew with the new foam addition, there would be no way the three of us could fit.  So, with Meghan came her pillows, and her iPad.

no sleep

Her iPad has a playlist that she plays through the night when she sleeps.  I always knew it was on, but this past week, as life has made sleep a bit elusive, I have gotten opportunity to listen to this 23 minute segment several times.  Yesterday I looked up the lyrics, and as usual I was in awe of what she had assembled.

In our house we listen mostly to Contemporary Christian music.  We are Christian, yes.  But typically the type that tries to spread the love by example rather than with a Bible in your face.  That being said, the move to Contemporary Christian music evolved after Meghan became old enough to hear, sing, and understand the lyrics, and the DJs on the radio.

I was, on more than one occasion, appalled at the level of exposure my then 5 or 6 year old child had to things I wanted her sheltered from a bit longer.  So, I switched the station.  And I kept it there.

Now, don’t misunderstand,  She is not bound to listen only to Christian music.  She can pretty much listen to whatever she wants.  She has an Itunes account and downloads music of her choosing, with our permission.  And, there are plenty of afternoons you will hear a good Classic Rock station blaring out our car windows.  But, like anything else, my initial changing of the radio station led to conversations.  And I like conversations.

Meghan became aware that many of her friends at school were familiar with other musical artists that she had never heard of.  So, it became practice that every time she brought home the name of an artist or song, as long as it wasn’t overly offensive – we would buy it.  But I loved that our conversations got her looking at lyrics, hearing what she was singing along to, and taking responsibility for her choices.

I know that music is a very personal thing. I will not be the Mom who is in denial, or tries to over regulate.  It will lead to rebellion and there is no need.  I will talk to my daughter regularly about valuing herself, her body, and other people.  We will talk about what lyrics mean.  Then, she will, as preteens do – do as she likes.

But for now- the “sleep” selection on her iPad is a powerful collection of 6 Contemporary Christian songs.

The first is “Stronger” by Mandisa that begins…

“Stronger”

Hey, heard you were up all night
Thinking about how your world ain’t right
And you wonder if things will ever get better
And you’re asking why is it always raining on you
When all you want is just a little good news
Instead of standing there stuck out in the weather
Oh, don’t hang your head
It’s gonna end
God’s right there
Even if it’s hard to see Him
I promise you that He still cares
Then, it  moves on to Kutless, “That’s What Faith Can Do”
Anyone can feel the ache
You think it’s more than you can take
But you’re stronger
Stronger than you knowDon’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason
For someone not to tryEverybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright

Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

Followed by “Courageous” by Casting Crowns
Seek justice
Love mercy
Walk humbly with your GodIn the war of the mind
I will make my stand
In the battle of the heart
And the battle of the handIn the war of the mind
I will make my stand
In the battle of the heart
And the battle of the handWe were made to be courageous
And we’re taking back the fight
We were made to be courageous
And it starts with us tonight

Fourth up is “Blessings” by Laura Story
We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we’d have faith to believe’
Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It’s not our home
And the last 2 are by a somewhat spunky artist called Francesa Batistelli
“Motion of Mercy”
That’s the motion of mercy
Changing the way and the why we are
That’s the motion of mercy
Moving my heartLiving for the lost
Loving ‘til it hurts
No matter what the cost
Like You loved me first
That’s the motion of mercy
God give me strength to give something for nothing
I wanna be a glimpse of the Kingdom that’s coming soon
And finally – “This is the Stuff”
I lost my keys in the great unknown
And call me please ’cause I can’t find my phone
This is the stuff that drives me crazy
This is the stuff that’s getting to me lately
In the middle of my little mess
I forget how big I’m blessed
This is the stuff that gets under my skin
But I’ve gotta trust You know exactly what You’re doing
Might not be what I would choose
But this the stuff You use…
…So break me of impatience
Conquer my frustrations
I’ve got a new appreciation
It’s not the end of the world…
I know everyone’s taste in music differs greatly, and I do not expect that anyone will listen to all 6 of these.  But I encourage you- choose one.  Any one that speaks to you.
I have been struggling to get to sleep, but I will miss the soothing repetition of some of the most powerful songs I know when the stitches come out tomorrow.  One more night.  Then everyone gets back to their own beds!
music no pain

Bravery/ Courage

Brave

Bravery – Ready to face and endure pain; showing couragecourage
Courage – strength in the face of pain or grief
It’s not a secret how I feel about my girl.  It’s not a secret at all that I hands down find her to be one of the bravest and most courageous children I have ever known.  She faces adversity better than most adults I know.  She presses onward with determination, not drama.
I don’t mean for a minute that there is never a hiccup on the path.  That would be delusional, and even unfair for a child who has yet to pass her 10th birthday.  But I mean, that despite the pebbles, rocks, and sometimes boulders tossed in her path, she keeps her head up and stays focused on what matters.
Yesterday we has testing at MSKCC in NYC.  We were told to arrive by 8:30 AM for testing at 9.  It was to be a 2 hour pituitary function test, followed by an ultrasound at 12:30.  Then we would be home by about 2.
So we woke at the crack of dawn – a nasty habit this summer – and arrived in our designated spot by 8:20.  As we were meeting the oncology nurse, a truly LOVELY and compassionate woman- a representative from the doctor’s office came bustling in to tell us the medication needed to start her test had not arrived at the hospital, and should be there by about 3.  She then proceeded to tell me maybe I wanted to reschedule.
Let’s say succinctly that the conversation that followed took place out of Meghan’s earshot.  The medication would arrive at 3.  We would have our ultrasound at 2.  And everything we left the house for bright and early WOULD be accomplished, before we headed home.
I can be a calm and rational person, at the right time.  But, the right time is NOT after you confirm an appointment at 4:30 PM the night before and FAIL TO SEE IF THE NECESSARY MEDICINE IS ON SITE!
So, I saw the woman off on her tasks to fix what had been broken, and I took the cues of my girl who thought, “We are in Manhattan – Let’s see Daddy.”
We took the shuttle to 53rd street and 3rd Ave.  Then we WALKED to 42nd and 7th.  Just in case there was even the slightest doubt that Meghan needs her wheelchair in Disney – it has officially been confirmed.  The 25 minute walk each way did more damage to her legs than I could have imagined.
Toys R US times square
But, we did get to Toys R US.  Meghan has been there before, as it is one of the stores her Daddy helped light before it was open, and it is so close to his office, but a toy store of that size is a huge thrill nonetheless.
She left with a Merida doll from the movie “Brave.”  Ever so fitting in so many ways.  I knew Daddy would have to take the Barbie size one home with him, so we surprised her with a Polly Pocket sized one when we got back to the hospital.
brave 2
Why did you like this doll, Mom?        
Because YOU are the BRAVEST girl I know.
The shuttle took us back to MSKCC by 1:30.  We promptly bought Tylenol for legs that could barely carry her and went to endure a 40 minute ultrasound.  Then it was back up to the floor for the test.  The medicine arrived – barely, just barely, but it arrived in time so that after an IV was placed, and a super painful injection given – we began the 9AM test at 3:15.
And there she sat, for 2 hours, in her chair.  Reading, playing with her iPad, watching movies.  Uncomfortable.  Exhausted.  Brave.  Courageous.
It may take a week or more to have the test results, and I will pray as I always do, that they return without any evidence of a problem.  But, time will tell, and the waiting game is one we are well practiced at.
So as we arrived home at about 7 last night – 12 hours after we left for the day- we consumed a giant dinner prepared by Daddy, and my poor exhausted girl took some more Tylenol and fell fast asleep.
Only to be woken this morning by the ring of the alarm clock.
run-clock
An 11 AM MRI/MRA of the wrist was waiting for us at 1st Ave and 38th Street.  The June 4th injury never healed, and it was finally time to get some answers.  The doctors we have seen all have differing opinions.  AVM? Arthritis?
When I tell you I have actually lost count of the number of MRIs my girl has had, you may find that odd, but there truly have been THAT many.  We have the pattern pretty much down.
We let the (hopefully) nice nurse pick the IV spot.
courage 2
Of course this time, since it was a scan of her RIGHT wrist and hand, the really solid veins in the RIGHT side were off-limits.  So, after two painful sticks to the left, she ended up with the IV on the side of her wrist.  And even with the discomfort she was in, she listened intently as the camera was placed in the MRI room, and absorbed her directions on positioning.
My cursory question of “How long?”  Was answered with “Less than 45 minutes.”  It’s almost a silly question to ask because I have no watch, no radio, and no means of telling time in the room.  But, somehow it makes me feel better.
Ear plugs in place, the door closed us in, and she headed into the tube.  My hands remained on her ankles, and I could hear the deep breathing.  It was just her and Merida inside the tube now.  Bravery at its best.
couraqge 1
It was 11:25.
It was well past 12:30 when we were told to wait it out while they ran through the images to be sure the doctor saw them.
time-warp
And then it was 12:45, and some time after 1:00 we were taken to another room.  Another room with a smaller tube and a stronger magnet – for a few more pictures.
This doctor, this attending, at the hospital reviewed her images, and wanted more.  This doctor I will never meet, who is not the radiologist who will read the images, who somehow got called by the tech doing the exam.  This doctor wanted more pictures.
So as Meghan laid on her belly in the tiny tube with Merida by her side, she sensed things weren’t quite right.  I gave her an abridged version of my inferences.
Then I chuckled at her response.
If something is wrong with my wrist, how will I do the archery we signed up for in Disney?
We will make it work Meg.  No worries.
And she laid, quiet and still as could be as 5 minutes became 20 before we were done.
So that’s it?  You aren’t going to tell me anything?  I asked the tech.
I am not a doctor was the painful reply.
Understanding they can’t, it didn’t help the growing pit in my stomach.
Your doctor will have the results  Monday afternoon or Tuesday morning.
Meghan got dressed and I held her up as she limped the 6 blocks to the parking garage, an all too familiar summer scene replaying itself. It was 1:45 PM.
Last night I asked when I was going to get a break.
I take it all back.
BEATING COWDEN’S will require stamina and strength I never imagined I could have.
I will continue at this pace forever, and as I wait for the test results I will be buoyed by the Bravery and Courage of my favorite 9-year-old.
brave 3

Overwhelmed

overwhlemed 1

Yep.  Totally and completely overwhelmed.

I know I am not the only one.  But I think sometimes the first step is admitting it.

Maybe it was overzealous to try to synchronize mine and Meghan’s 6 month follow-up appointments to coincide with the first 2 weeks in July and the February break.

My initial attempt scheduled 12 doctors , plus one MRI and one sonogram between June 27th and July 16th, (for both of us combined.)

overwhelmed 2

It has mushroomed to include a Pituitary Stimulation Test and another ultrasound, 2 more MRIs yet to be scheduled, a possible muscle biopsy – pending a conversation between 2 specialists, a full day of work for me one day next week, Physical therapy 1-2x a week as we can fit it, 3 nights a week of swim practice, and 2 dentist appointments (that I PRAY don’t need follow-up!)

So, I waffle in between resenting the loss of my summer, and being grateful that I have July to get all this done.

The entire month of June I salivated for July.  I couldn’t wait for schedule free days.  Now I am frantically overtaxing my shredder as I organize all the tasks I label for “summer,” during the year.  The July calendar makes me nauseous.  Literally.

swim overcome

I mean we might have gotten bored eventually, but we have barely been near the pool.  I say bring on the boredom.

Most of our appointments are in Manhattan.  That can be a 45 minute trip or a 2.5 hour trip – depending on… well, the humidity?  day of the week?  air pressure?  There is ABSOLUTELY no predicting.

We could take the bus.  But that often involves the need for the subway, which I won’t do with Meghan, and lots of walking, which honestly she can’t do.  So, we drive, fill the car with gas, head over a bridge and through a tunnel to a carefully pre-selected parking garage.

And, since there is no predicting, there is always a meal to pack.  Never want to be caught off guard with a hungry Gluten, Dairy, Soy allergic kid.

Sometimes we are on time.  Sometimes we are late.  Always we wait, and wait.

overwhelmed 3

Meghan is the most well-behaved child.  I don’t lie because there is no need.  I am sure she was a gift to me – while we can at times butt heads, her personality allows her to pack a book, her iPad, or something, and sit.  For hours and hours.  I couldn’t pull this off if she was any other way.

But, I don’t know if I would have a choice.  There is no traveling to Manhattan at 4 pm, on a school night.  It just can’t be for either of us.  So we do what we must.

Today, before 8AM she was in the park, running the “fun run” of a local race that has been dedicated to our “Angel Meghan” for over 20 years.  She ran for a quarter-mile – 2 and a half minutes, came in a close 2nd, and has been nursing her knees ever since.

Meghan july413

I am in the basement, shredding, and writing while I wait for my overworked shredder to cool.  Trying to get a few things off the “to do” list.

My head is constantly going – processing new information learned this week.  Thinking.  Asking.  Wondering.  Worrying.

Today is a good day.  Daddy is home.  The ultimate distraction for her.

We had a long talk this morning, me and my girl.  I tried to push her to reach out to some friends.  To go and be carefree like she should be.  Even if its only for a while.  Everyone has something we reminded each other.

I still can’t shake my need for order.  I don’t need a psychiatrist to tell me my obsession with a clean house is tied to the inability to control much else in my life.

Cowden’s Syndrome – our curse, and our blessing.  Sucking away hours that should be spent on the beach or in camp.  Forcing a little love to grow up way too fast.  Torn between my guilt that this mutation came from me, and my gratitude that she saved my life.

I lost my driver’s license today.  Just the license.  It fell out of my pocket.  For $17.50 I ordered a new one on-line.  Here’s to hoping that whoever tries to be me has a strong stomach, and a decent amount of stamina.  They don’t know what they are up against.

overwhelmed 4

The beach… and all her other plans – I will do my best.

Just trying to get by one day at a time.

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend 🙂
The thought for the day...
The thought for the day…