Sunday, July 29, 2012

The Dark Side

There's a place that I know
it's not pretty there, and few have ever gone.
If I show it to you now
will it make you run away?

Or will you stay?



Even if it hurts,
even if I try to push you out,
will you return?
And remind me who i really am...
Please remind me who i really am.

Everybody's got a dark side.
Do you love me?
Can you love mine?
Nobody's a picture perfect,
but we're worth it..
you know that we're worth it.
Will you love me?
Even with my dark side?
~Kelly Clarkson

I'm a pretty strong person.  I haven't always been that way.  But trials and just plain life has molded me into who I am.  Lately, sometimes, I get told how strong I am by other people, and I get told how "inspiring" I am that I can keep the faith during times as hard as these.


And sometimes I partly agree with those people.  Sometimes I marvel how I keep myself walking upright, and I think how much strength I have to function and keep the family strong and happy during times like these.

But as much as I don't want to admit it...I'm not always strong.  And today especially, I feel so weak.  I feel like the world sits on my shoulders made of glass, and at any moment I will shatter under the pressure. 

I know a lot of the time, (maybe even all the time,) Ryan feels this way, too.  He doesn't always articulate it, but I know that we are living our lives on the fine line of pretended normalcy and complete chaos.

Last week's bad news was a punch in the gut.  Ryan's meds aren't working anymore.  The tumors are growing.  We were moving forward at a good clip and now we have lost our footing and have to find our momentum all over again.

It isn't easy.

Part of me wants to crumble. 

Part of me is questioning everything. 

Part of me is really angry right now. 

Part of me is so scared it is literally paralyzed.

Thankfully, the greater part of me is staying strong.  It is continually nursing my weaker parts, encouraging myself to keep the faith.  The greater part of me believes in miracles, and angels, and that some things are meant to be.

For Ryan and I, one of the harder parts of all this is not being able to articulate our fears to one another.  I told Ryan the other day if he just needed to tourettes syndrome out all his fears and anger that I can take it...let it out.  He gave me a smirk and said, "I'm okay."  And instead of lamenting of what could be, or how completely scared out of our minds we are...we talk about how blessed we are.  We talk about how despite it all...we have each other and four amazing boys.  We talk about the undeniable feelings we have had in the past telling us that all will be well.

We talk about our faith.

We all have a dark pieces.  I don't know if it takes up an entire side of us...but somewhere in us lay the dark days...the sadness, the bitterness, the loss.

But just because I have a dark day, or a dark week, doesn't mean all is lost.  It doesn't define who I am...it's just part of the process.  I've felt a lot of guilt the past couple days...guilt that I'm faltering and not the pillar of strength that I need to be for my husband, or my family, or my God.

I like to think that it is normal...or at least I hope it is.  When one is punched in the gut with bad news, one steps back for a moment to catch their bearings, right?

I'll fell better soon...and when I do...I'll be stronger.  I know it.  I'll tell the dark side to take a long walk off a short cliff and the only thing left will be my faith.

What other choice do I have?  Can I let the dark side win? 

Hell no.

You all are so kind to me.  I know many of you are saying to your screen, "Meri, be kinder to yourself!  It is ok to have bad days for crying out loud!"

And my response to that is this...

It goes both ways.  Can't you be kinder to YOURSELF too?  It's ok to have a bad day, a bad week or a bad month.  True strength comes from overcoming the bad days...not from pretending they don't exist.

This post is my small way of taking my own advice.

Thanks for the prayers by the way...I know they are part of what keeps me upright each and every day.  They make me stronger, and that is a blessing for sure.
(PS  I don't know why my font got suddenly bigger mid-blog, mid-sentence.  And now this PS is even bigger...I'm too exhausted to figure out why.)


Wednesday, July 25, 2012

Let it be.

Let it be.

Let it happen.

Let it alone.

Just BE.

My husband and had the rare opportunity to have dinner with some friends in the city.  On the way home the sun was setting and the Bay Area glowed in yellow haze, carpeted by reflective pools of water. 

Almost intuitively the radio began to play "Let it Be" by the Beatles.

The words pierced my heart.  I tried to internalize exactly what they meant to me.  To us.

Let it be.

Let it be...as in, Let it happen?   Life doesn't stop for anything.  It is a crazy ride and when something big shakes up our world my first instinct is to think, when will this end?  How long must we endure?  Maybe I need to step into the calmness of "letting it happen."  These hard moments are changing us, and someday I'll have the benefit of hindsight to see what miracles were wrought in our life.  Someday I'll be wiser and the bigger picture will be clearer.  Instead of punching mindlessly at the storm...maybe just acceptance is what I need.  Storms blow through, and they are scary.  But it waters our fields and the rainbow follows.

Let it be...as in, let it alone?  Sometimes I let the question creep in.  Why?  There is no answer to why.  Why is only there to make me miserable.  There is no strength in why.  Why is there to take my mind away from the things that are really important, like my blessings.  Why wants to preoccupy me with its time so there is no room for anything else.  Why is extremely needy.  So leaving it alone...alienating the why may be my only option right now.

Let it be...as in, just be?  Just LIVE.  Make the most of every day.  Enjoy all of the little moments.  I read a quote the other day that said happiness is not in the destination, but in the journey.  I can't look ahead and say, "someday this will be over and then we'll all be happy."  That isn't fair to my family, and not fair to my soul.  I/we need to find happiness in today. 

A few days ago our family received a miracle.  My husband who has been suffering from nausea, exhaustion, pain and weakness, woke up last Thursday and said, "I feel amazing."  For the first time since his diagnosis Ryan feels "normal."  He can eat again.  He has energy again.  Gone are the days of two naps and constant misery.  He can sleep well at night again.  It's like we've all woken up from a coma.  How long will this last?  I don't know...but we'll enjoy each wonderful day we have...and "let it be."

Yesterday when I was up all night with a rouge 400, the words echoed in my swelly brain...."let it be."

Today when the boys had breakfast and then an hour an half later ate again at Costco, (because apparently it's sacrilege to NOT eat a hot dog when we're at Costco,)..."let it be."

And tomorrow, when Ryan has another diagnostic appointment to give us results of yet another chest scan..."let it be."

It's sticking for a reason.  If diabetes has taught me anything...it's that acceptance is the fastest way to happiness.

"And when the night is cloudy, there is still a light that shines on me, shine until tomorrow, let it be." ~The Beatles

Monday, July 23, 2012

When numbers take over the night.



Deep in the nighttime when children are dreaming,


When parents are snoring and resting their minds.

The numbers march into our homes never failing,

And dictate the peace that our bodies will find.



A wave of emotion they bring with each blinking,

The numbers they know how to hurt and be kind.

They bounce up and down like a young child flailing,

And soothe us to sleep with their one hundred and nine.



When we dose we are hopeful that we are securing

A strong healthy number to keep the calm night.

But that number will turn when we're least expecting,

No choice but give up our sleep for the fight.



Some numbers are brutal, they'll fight until morning

taking bits of our life 'long the way.

With lows taking pleasure in seeing us foraging

for carbs to keep crueler numbers at bay.



And the highs with their clattering,

They joy in the panic of our worrying about insulin on board.

Our hearts work with resolve to keep up their pattering,

But our sanity falls on the sword.



The numbers they are forever weaving

their quantities into our heads.

There is never a night that we are not dreaming

of meters with dots crimson red.



On those nights that the numbers cause up their stirring,

We hold our breath:  Three.  Two.  One.

And keep in check emotions that surely are surging

To prove to these numbers, we've won.



Because life marches on, the numbers will shift,

The one hundreds sympathetic to our plight.

Peace always returns...there's an end to the rifts,

When the numbers take over the night.



Saturday, July 14, 2012

Holding on by a bracelet...


Yesterday was a big day.  14 hours from beginning to end at the hospital for Ryan's Gamma Knife Radiation.  As thankful as I am for the technology that will surely help my husband, I am so glad that yesterday is over.

It's hard to explain what feeling helpless is like.  It mentally hurts so much that your body viscerally responds to it.  It is an aching anger that comes from the gut, and a quiet hurt that haunts your heart. 

Needless to say, feeling helpless is not my favorite.

One would think I would be used to it.  When it comes to diabetes I often feel helpless.  But when you see someone in front of you miserable...that is a different story.  My boys are very rarely miserable.  They are happy and busy kids.

But cancer is a totally other animal.  Yesterday we had to look that cancer in the eye.  We had to let it take over our day.  We had to let it hurt.

Helpless.

Many many hours of waiting at the hospital, I set my focus on my wrist.
(The orange FFL bracelet fell off a couple days ago. Super sad face.)

I read these words yesterday a thousand times:  You can do this.  And, COURAGE.

The You Can do This bracelet taken from Sara's wrist and put onto mine during Richard Rubin's Diabetes Overwhelmus course at FFL.

The Courage bracelet given to me in a tender moment from Wendy, another mother who is like a sister to me.

And in the palm of my hand I held the third bracelet, also given to me from Sara.  It is a cancer awareness bracelet with a heart inscribed:  Together we can make a difference.

I was able to take all the love out there and bring it all to one place.  And to be honest, I drew strength from it, and it helped.

One of the most important lessons I've learned from this journey so far is:  small gestures make a big difference.  Most often it isn't the grand things that are needed but rather a small token of love, a meal, or even a kind word.  We have been recipients of so many kind gestures and I'm ashamed to say I never knew.

I never knew that bringing a meal to someone who is having a hard time could cause them such complete relief.  (And really, it isn't a small gesture when you're cooking for a family of 6.)

I never knew that just saying, "I'm sorry, I hear you, god bless."  can heal a heart so.

I never knew that bracelets, probably monetarily worth very little...could be equal to the mansions in heaven for my soul.

I never knew that when  a person is having a hard time, just writing on their facebook wall or sending them a text or an email could make them feel BETTER, and lift them up out of the fog.

If you ever feel prompted to call someone, or text someone, or help someone...

Do it.

It makes all the difference in the world.

My heart...my surviving all of this...is living proof that it is so.


Wednesday, July 11, 2012

Have diabetes, will travel


Four oversized swollen suitcases.

Four backpacks, one for each boy.

One large tote bag for me.

One carry on that looked like this.


We were ready.

As we made our way to the security lines at the airport I searched for the "family and medical assistance line."  When I found it I explained that I had three boys wearing insulin pumps and they couldn't go through the metal detector/scanner.

"Don't tell me...tell the next guy."

The next guy checked our ID's and waved us through.  He didn't want to hear it either.  "Tell the next guy."

As we arranged all our bags on the x ray conveyor belt, I explained to the gentleman standing there that three of my boys could not go through the scanner.

"That's ok...just have them walk through here," as he gestured to the scanner.

"I'm sorry, their insulin pumps could break.  They'll need a pat down. They are not walking through there."

He gestured again..."No, it is ok...have them walk through here." 

"I'm sorry, they can't."

He was frustrated now. "I've never heard of this before.  Never."

"I read on your website, they have the right to request a swab or a pat down.  They are not going through that scanner.  I can't risk it."

"OUR website?  The TSA website?"

"Yes...YOUR website."  I answered as I fumbled through my paperwork looking for the section I printed out just in case I was questioned.

I pointed to this section that I had highlighted:

"If you are concerned or uncomfortable about going through the walk-through metal detector with your insulin pump, notify the Security Officer that you are wearing an insulin pump and would like a full-body pat-down and a visual inspection of your pump instead." ~TSA website/hidden disabilities/diabetes

He glanced at it impatiently.   "OK, I'll call security."

A few minutes later three very large, very seriously looking Samoan men in uniform came to gather the boys.  I explained I wanted to stay with them at all times and they said no problem.

It was quick and efficient.  They gave J a swift half hearted pat down and had the two younger boys touch their insulin pumps and then swab their fingers. 

Five minutes and we were ready to go.  Except for the initial conversation, everything ran pretty smoothly and efficiently.

Florida on the other hand...well they are a little more militant about it all.

Returning home was a bit more complicated.

It included a long conversation with the guy at the scanner.  He wanted the boys to go through the new full body scanner.

"I'm not familiar with the technology.  I don't feel comfortable with their pumps going through there."

Honestly, I had no idea if it was ok or not...but my gut said it wasn't.

The TSA agent went on and on and on about how it doesn't have magnets and it was safe for the boys to go through.

I looked him in the eye and said, "We are requesting pat downs or swabs.  The boys will not be going through any scanner.  I know we have the right to request this, and we are."

He nodded and called security.

Three men eventually approached us and waited for a manager to join them before they began their work.  In Florida, it is protocol for minors under 12 who are searched or swabbed to have a manager there to witness.  J was whisked away.  They didn't ask if I wanted to witness, and I had to follow the littles that were taken in a different direction.  I found my husband and pointed two fingers towards my eyes and then pointed the two fingers towards J, signaling to Ryan to keep an eye on him.

They swabbed the littles hands and feet and shoes.  They swabbed my hands and feet and shoes.  Why I was included, I do not know.  I went through the security scanner like everyone else.  I found it interesting they didn't ask them to take out, or even touch their insulin pumps.  I'm not even sure they knew they were wearing them.  To make it less invasive for children, if they are under 12 they no longer do pat downs on them.

After a slew of radioed calls to the upper management they apparently did some kind of background check and then insisted on searching the boys backpacks.  The backpacks had gone through the scanner, but regardless, everything was taken out and swabbed to see if there was explosive residue.  Again, we were asked to wait for the final ok.  Another 10 minutes passed and we were given the ok to go.

While all this was going on I glanced to the other side of the room to see J.  Wide eyed, he gave me that look like, 'What the heck!"  Let's just say his pat down was very, VERY thorough. 

All in all it took a good 30 minutes to get through security in Orlando.

I want to say at this point I think the boys could have walked through the scanners and everything would have been ok.  I think MOST of the time nothing happens to the pump...but I have heard too many stories to risk having three pumps going haywire on our vacation.  When J flew to see my brother last year he didn't even tell them he had a pump and walked through the scanner and the alarm didn't go off.  On the way home it did go off because he had starbursts in his pocket and starbursts are lined with a foil liner.  Unfortunately, I know some people have had pumps completely stop working, and some stories of pump settings being completely erased.  I made sure to have all the boys settings written down before we left.  (Last year all three boys jumped into the pool at Disney and I had no idea what their basals or sensitivities were.)

The word is Animas pumps have metal inside, usually setting the scanner off, and Medtronic doesn't.  I think it has a lot to do with the setting the scanner is set at.  Some airports set the scanner to higher sensitivity than others.  Both pump manufactures recommend NOT going through the scanner, though...so there's that.

I don't know what the right answer is, I just know in our situation it was better to be safe than sorry.

What helped us most was being firm in what we wanted.  Don't let them sway you...because they can be pretty persuasive with their permissive tones and crisp uniforms.  It is your right NOT to go through the scanner.  They can't say no. 

All in all the people with TSA were kind enough.  They are in a hurry and try to find a harried solution to get you out of their way initially.  I went to the airport expecting it to be complicated so I could be pleasantly surprised if it wasn't. 

It all works out in the end...vacations still happen...the airplane still takes off...memories are still made...and that is what's important.

Don't let diabetes stop you from traveling.  You can do it!  And it is so worth it in the end!

Monday, July 9, 2012

Learning what it means to be a Friend for Life.

Sometimes life has a way of throwing us curve balls. Things happen that we don't expect and it takes the will of a thousand prayers to keep us walking upright.

Last week I was taken to the edge of my will. I pushed the envelope so hard I almost lost my ability to think in the process. Worry has a funny way of making you feel vulnerable and alone. Its easy to shut out the rest of the world and wallow in our own cave of misery.

I tried to do that on Saturday at the Friends For Life Conference.

I failed.

But first, a little back story...

We left for the Children With Diabetes Friends for Life Conference on Tuesday evening. We got to our flight no problems and settled into our seats excitedly. Well, most of us did. J sat there pale and shivering.

Was I expecting my 14 year old to have a wicked case of the chills as our plane took off? Was I expecting to stay up all night with him as the Advil wouldn't quell the heat of his fever? Did I expect to turn to Jeff Hitchcock for help to find an urgent care facility and then wait at the said urgent care facility for 5 hours to finally see a doctor for strep?

No.  Wasn't expecting that at all.

Did I expect to see lovely faces from the interwebz and hug them tight?

Yes, absolutely.

Did I expect they would encircle me with the love and friendship that they did?

To be honest, I don't know what I was expecting. But what I do know is the sincere kindness and love we were shown went far beyond casual Internet connections. It was more of a family reunion with people that don't know what it means to be artificial. They are real in more than just a tangible sense. They are everything they pour out onto their blogs, they are all the support they post on Facebook, they are every bit as fun and funny as they are in the twitter-verse.

Corny-ly enough, they are friends for life.

Did I expect to take Ryan to the emergency room in Florida?

Seriously, I didn't expect it...but I secretly feared it. 8 hours of waiting just to hear the doctor tell us his cancer has spread to one of his adrenal glands. The severe pain he was experiencing in his back came from a tumor that had bled, as melanoma tumors like to do...

And as word spread of our situation, people jumped at the chance to help. People from the DOC that I know and love...and strangers....STRANGERS who didn't know me.  They came out of the woodwork to drive us to hospitals and pharmacies, to feed us, to pray for us...to show us what a friend for life really is.

We may all be different. We may have political views that are polarizing...we may care for ourselves and our families differently, but there is a common thread that connects us. That thread is love, and it is spun from the spirit of sameness and understanding.

As I sat encircled by beautiful people in the DOC offering prayers on our behalf, I sobbed deeply in a place that I haven't allowed myself to go in awhile.  And after I let myself mourn. I felt the peace return.  I know it is going to be ok.

It seems impossible, but when I was sitting in the emergency room with Ryan the phrase, "God can make a way when there is no way," came to my mind.  Over and over again.

I don't know how everything is going to be ok again, but I don't think it's my job to question that right now.  My job is to hold onto my faith...and my hope.

In between all the hoopla, we did enjoy a couple days of classes and bonding with friends.  I have volumes to write and I know it will be cathartic to get it all down on virtual paper.

To all my friends at Friends for Life that offered support and love to us...thank you. 
I love you.

To all of you that read my blog and send love, prayers and good thoughts or way...thank you.
I love you.

It is from your example I'm learning what being a Friend for Life is all about.





Monday, July 2, 2012

WE ARE GOING TO FFL!


You all have no idea how hard it was to keep all this in.  Secrets are HARD to keep!

Last year I entered the Once Upon a Time Contest sponsored by Lilly and Disney.  To enter, I wrote a short essay about our life with diabetes.  (Not easy.  It's no secret that short is not my forte.)

I found out in January that I won!  I won a trip for our family to attend the Children With Diabetes Friends for Life Conference in Orlando.  (This was before we found out about Ryan's cancer...so it wasn't a pity win.  Or maybe it was. I do have three boys with Type 1, right?)

When we got the news in March about Ryan, we thought the trip wasn't going to happen.  Then Ryan said, "We are going to make this happen no matter what!"  So the game was afoot!  Ryan went through all his radiation and the doctors all told us it was a great idea to go!  Even with the one tumor that popped up, they were going to move things around so we could get the radiation done before we left on the trip.

And then last week...after I wrote my last blog post...we received more bad news.

More tumors have popped up, and some of the old ones have grown.  He now has nine brain tumors that need to be taken care of.  We were sent to UCSF to the head of Radiology Oncology. 

Last Friday we sat in the UCSF office on pins and needles.  We knew that we were there to schedule Gamma Knife Radiation.  But we didn't know when.  Would they do it the following week?  Would we have to cancel our trip for him to receive his care.  (Ryan first...trip second...we knew this.)  But miracles happened and mountains were moved and Ryan will receive the special radiation the day after we return.  When we asked if it was safe to go they said, "He can have tumors here, or he can have tumors there...it's all the same."

So here we are...GOING TO FRIENDS FOR LIFE!   Are you reading these words that I am typing on the screen?????  It is happening!

Do you want to read my winning essay?  It is HERE.

And here is one of the press releases about our win HERE.

If you are going to #FFL12, please leave a comment.  I'll be easy to find...I'll be the hot mess with the purse that says, "HOPE."