Overwhelmed

Someone tried to steal my credit card today.  Online purchase of almost $1000.  We are pros at this.  Text alert.  Call to Chase.  Charge suspended. Crisis averted.  We are pros at being hacked.  One day I’ll figure out why.  Right now I don’t have time.  I’ll be busy calling E-Zpass, and all the other automatic charges on our only real credit card.  Whatever.  I have to laugh.  Cause if I don’t I might cry.  And that would cause a headache and be counter-productive.

I have serious attention issues.  Probably because everything I touch seems to morph into a few more things to address.  More phone calls, more emails, more papers, more appointments.

stubbronness

My life is not that bad.  Truly.  I know I’m in good company.  Chaos abounds and if you don’t appreciate some of it, you’ll regret missing it.  But, the thought that someone would want to BE me makes me laugh a bit.  Or maybe they just think I’d be too busy to notice…

Yesterday Meghan was scheduled for a biopsy at 3:30 PM.  That is a rotten time for any surgical procedure.  It involves a full day of fasting, anxiety and the like.  We arrived at 2:30 and got checked in.  Then we waited.  And at 6PM when I finally walked with her to the OR she was dizzy and light headed from nerves and a day of not eating.  Hours delayed.  Cause, why not?

reason for everything

It sucks that my 12-year-old knows what a biopsy is.  It really, super sucks that she has had so many.  It’s helpful that they’ve all been negative so far, but the notion that “luck” will run out at some point looms.  She knows all about pathology and wonders if it will be back before Christmas.  I am often struck by the notion that all of this is unfair.  But, I have always hated the people, young and old, that whine about things that are “not fair.”  The struggle not to become THAT person is real.

help

I write to bring back my focus.  I write to get the thoughts swirling around in my head back into good order.  I write because it makes it less awkward for the people who actually want to hear about our lives, but don’t know what to say.  Some days the task of organizing these thoughts is much easier than others.

We are at a point that our lives are overwhelming.  I don’t just mean busy, like in a typical, school, activities, homework, sports, etc. kind of overwhelming.  I mean they are overwhelming in the medical sense.  We are past the point where we can even really talk to most people about what’s going on.  I get to kid around a little when I talk about needing my spleen tumors scanned again, or my implant lifted, but it’s hard to share the true tears of frustration I feel that I will have to do that with a new surgeon because mine sold her practice and is now out of network.  I keep the tears I cried about that tucked away.

In fairness, what do you say when you are discussing the umpteenth medical procedure of your 12-year-old, when most adults you know have only had one or two surgeries or procedures in their lives?

How could I expect someone to even respond?

How do you explain that we have “operating room routines?”

What can you say to soothe the lonely pain of recovery.  Again?

Nothing silences a conversation faster than a discussion about the uterine biopsy of your 12-year-old daughter.

Nothing silences her cell phone faster than trying to just share a little of that enormity.

path destination

Truth is, we know.  We know we are loved.  We know we are thought of, and virtually hugged, and prayed for.  We know.

But, when so much of your life is swallowed up in medical procedures that you really can’t talk about – it gets lonely.

She’ll need another day on the couch.  To recover fully.  Her Dad will stay home tomorrow.  They will watch some TV, and talk without speaking.  They are good at it.

And Monday, she’ll head back to school, awkwardly searching for the fine line of politely ignoring the enormity of her life, and sharing just a little with those who are brave enough to ask.

Please don’t take any of this the wrong way.  We appreciate the love, and texts, and Facebook messages, and Emails.  We love all of you.  And we are sure we’ve missed some key things in your lives too.

elephant and dog sit under the rain

It’s just, well, the reality of this Cowden’s Syndrome, the enormity of the 5 surgeries in a bit over a year, the gut wrenching notion that it won’t quit – ever, the frustrating planning of two scans and a doctor’s appointment already eating up the next “vacation,” the waiting for the pathology report for the polyps that just don’t belong in the uterus of a 12-year-old, well, honestly… It’s just overwhelming.

I think that’s the word that describes my thoughts best.  Overwhelmed.

Now that I’ve got that organized, I’ll get back to the business of

BEATINGCOWDENS!

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…