Tragedy Surrounded by Love

My cousin Kim stood, graveside, holding 2 flowers over the 7 month baby bump under her black dress.  Two roses.  One was red and the other was pink.  One was for her, and the other for baby Mackenzie.  It was time to lay to rest her husband, and the father Mackenzie will only know through the stories and photos a strong community will share with her forever.

Exactly a week earlier we gathered together in joyful celebration to shower Kim and Nando with love for Baby Mackenzie, due in November.  Little pink clothes, laughter, anticipation and love for a baby they waited so long to have.

The next day he was gone.  That fast.

He was one of five children, and part of a large family.

My family, Kim’s family is large as well.  Our fathers were brothers, in a family of 9 children, and although mine passed away in 2013, the love shared by all runs deep.  We are close to 30 first cousins thick.  The second cousins are starting to increase in number.

I sat in the funeral home in stunned silence most of the time.  But, the room was crowded, the lines were long, and the hugs and tears were all genuine.

I didn’t know Nando as well as many others.  As a matter of fact, I wish I had known him better.  Clearly, judging by community response and turnout, he carried the same heart as my cousin Kim in his larger than life body.

I can’t make a bit of sense out of any of it.  So I have to lean on my faith, and do whatever I can to offer support.  Sometimes tragedy just is…

Kim is strong, almost stoic.  She is a mother already, carefully shielding my newest little cousin from the anguish in her heart.  This beautiful baby will bring joy to so many.

We do not know the hour…

Tomorrow is not promised on this earth…

When we talk about #beatingcowdens, we talk about vigilance.  We talk about a warning system.  We already know what we are up against.  So often I can’t help but wonder how many people would give anything to have had warning.

It’s all perspective.  Sometimes I have to pause here and tell a story that is not about us.  That is not about Cowden’s Syndrome.

There is a generosity of spirit that lives in so many.  I witnessed it last week in a community outpouring of love.

My Uncle put it into words about his son-in-law.

Although I am not surprised.

I have received that generosity of spirit from Kim and Nando, and the family so many times.

Pay it forward.  The idea that you do good things with no expectation of repayment.  That’s how they live.  This week we got to witness a little bit of the good that comes from living life for others.

More than one person my cousin works with, sat with me at the funeral parlor to ask about Meghan and I.  I didn’t know them.  They knew of our story through Kim.

Currently our fundraiser for the PTEN Foundation is scheduled for 10/28.  I contacted my Aunt, and asked if we should cancel.  I needed to know if it was too close.  I would never ever want to be disrespectful.

The response?

Don’t cancel.  Kim plans to be there.

I guess that’s just what family does for each other.  And there is always plenty of room at our table.

Pull up a chair.  We’re in it for the long haul- together.

 

Random Acts of Kindness

 

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With the recent ALS Ice Bucket Challenge, we have seen ingenuity lead to a spike in funds and awareness for a horrendous disease.  Fundraising for the organization is at an all-time high.  I hope, sincerely and with my whole heart, that this influx of funds is well-managed, that it gets into the hands of researchers, and that is yields major steps towards a cure for this heart-breaking syndrome.

All this awareness raising got to me this week.  We donate what we can to our church, and various charities near to us, but this week I got reflective.  I donated to ALS and three charities that were not ALS, and have nothing to do with PTEN.  My donations will not impact the world in an earth-shattering way, yet it felt good.

I’m getting my gold porch light ready for September – Childhood Cancer Awareness month.

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Other people suffer, and all of us – disease specifics not to be debated, could stand to have a cure around

But, regardless of your opinion, I think this ALS Ice Bucket thing did more than raise awareness for ALS.  I think, it increased our awareness of humanity and other people’s struggles.

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A few days ago in Costco I had over estimated my strength.  And as I wondered how I would get the chair into the car, two gentlemen came from nowhere.  Different places I might add, to work together to fit the chair into my car.

Then I received a card in the mail.  It had a check enclosed for us the for a charity of our choice, or something fun.   The handwritten note told me that Meghan and my story was impacting at least one life.  The need to keep sharing was renewed.

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And I connected on Facebook to a man who we met in Disney last year.  He and his wife and Meghan struck up a conversation on a long bus ride.  He had a service dog.  She was enthralled.  She was raising awareness of Cowden’s Syndrome.  He tried several times to send me a link to a song that made him think of Meghan.  He was finally able to get it through.  I cried.  My little girl is making a difference and this man took the time to let us know.

In the mail was a package from a friend, a former student, with a “big sister” type of compassion for my girl.  There was a letter (which wasn’t for me to read,) and a key chain for Meghan, and one for me too.

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None of these people could have known I was having a pretty tough time.  I don’t so well in chaos, and the house was absolutely upended.  In the year that everything broke, the bay window was being replaced, the house needed new… lots of things, and the leak in the pool was becoming evident.

Random acts of kindness.

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That’s why they matter.  So much.

We try to pay it forward as much as we can.  So special to be on the receiving end as well.

Whatever the cause.  Whatever the reason.  An increased awareness of others will make the world a better place.

Do something nice for no reason.  With no expectation of anything in return.  Just because.

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“It is only with the heart that one can see rightly…”

There is something about having a kid who struggles, whether physically, mentally, emotionally, or in any other capacity, that forces you to open your heart and mind to things you may never have “seen” otherwise.

little prince

We are blessed.

We have a beautiful, witty, articulate, charismatic and spunky young lady.

She knows pain, and she knows it well.  And some days that pain is like plowing through a stone wall, while others its like walking across a pebbly yard barefoot.  But, there is sparsely a day with no pain.

She knows competitiveness.  Although she would like to be the fastest runner, she is starting to work towards a more reasonable goal in a no impact zone – the pool.

She knows intelligence that book smart children know, and she knows the perspective that few adults can master.  She can look at other people and want to talk to them.  She can wonder about them.  She can empathize with them.

She knows what its like to be sick.  And in surgery.  With IVs, and needles, and scars, and recoveries.  She knows what it’s like to never be “well” only watched.

She is learning, step by step, that “well” is more of a state of mind, than a state of being, when each week is peppered with some type of appointment.

Yet, she knows that even at the depths of her own Cowden’s Syndrome battles, there are others.  With and without our syndrome – who fight a battle unbeknownst to us.

Meghan doesn’t use a wheelchair at home.  For this I am grateful.  Although as I teach my daughter about homelessness, and how we can never be too sure from where they came, or whether it could through a series of unfortunate events, become us.  We practice a deep understanding of reality in Disney World.

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Meghan’s pain, so much of it, stems from repetitive motion.  Too much walking, any running, too many stairs, too much kicking or pulling in the pool… all of it has repercussions.  So Disney, by it’s very nature, and its wide landscapes requires much walking.  And, as we try every year, even with a little here and there – the pain is deep and inevitable.

So for that week every summer she gains an even greater perspective.  She lives in a wheelchair.  With all the inconveniences that come along with it, in an effort to save the needs from irreparable pain, and the trip from being a wipeout…she rides.

And on the first night after the vomiting I watched from a distance, as Felix helped her onto the handicapped ramp on the bus.  And there was a knot in my stomach as I watched my girl get strapped into the bus in the wheelchair.  This beast, this Cowden’s Syndrome we fight.  Well we fight to win.  But who can know?

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I stop myself from wondering too far ahead and I reflect.  On the old me.  The me who used to look at people in wheelchairs riding buses as an inconvenience.  A delay in my precious time.  The me who used to judge and try to guess why they would need a wheelchair.  The same me who used to judge a lot of things.

We will unpack.

The wheelchair will be stored.  Hopefully for a very long time.  But, it will be there, in the basement.  In case.  In case we need it for anything.  Because the pain, well it’s always there.

Fortunately, she is in a position where her stubbornness still has the power.

And I will think, as I drive her back to swim practice in a few weeks, about the other mothers.  About the ones who wish their child’s wheelchair use was temporary.

And I will think about the phone call I got this week.  The one about the AVM growing in the knee again.  Timed on the same day she was vomiting in the hotel room.  And I will be grateful that we don’t need surgery right now.  And I will be grateful that it is not in her head, or any other life threatening spot.

I am humbled.

By her grit.  By her stamina.  By her determination.

I am grateful.

For the opportunities afforded to my girl.

We will find the balance.  We will pay it forward.

I don’t even really remember the judgmental me.

I am too busy working on

BEATINGCOWDENS!

 

What if every day was a snow day?

Now before you jump through the page – hear me out.

The kid in you may be cheering.  “SNOW!  FUN!  PLAY! ”

And the grown up in you may be growling.  “TIRED OF SHOVELING AND GETTING STUCK AND BEING COLD.”

But actually, neither is exactly what I meant.

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I got a message around noon that my daughter was hurting.  The pain has been bad again.  The weather doesn’t help.  I fought through a wicked virus last week, and there is always the possibility of it eating at her.  Her nerves are shot.  The thyroid consult is Thursday.  Consciously or not – she is worried.  I’d be shocked if she wasn’t.  I am too.

And between the weather, and the stress, there is the pain.  It started a few weeks ago in the shoulder.  It found its way to the ankle.  Physical therapy in between.  Swim practice ends up being haphazard and inconsistent.  My heart breaks.  I am distracted.  Most of the time.

But this afternoon, when we left school together, and there were 8 inches of snow on the ground where it hadn’t been a few hours earlier – no one we were about to meet would have had any real idea of what I wrote in the last 2 paragraphs.

After settling Meghan into the warming car I set about clearing it off.  Its a decent car, but a sedan,not an SUV, and while it can handle 2 or 3 inches, it is NOT designed to drive in 8 inches of anything.  I ended up on my bottom twice as I finally got the windows and roof clear enough to be safe and legal.

Then, I decided to pull out.  Well I went through all the motions anyway.  There was lots of spinning and not much moving.

Then there were people all around my car.  Some I knew, others I don’t think I ever met.  And for a moment getting my car out of the spot was the most important thing on their agenda.  They guided me as I behaved like a ditsy distracted woman.  They had no idea how full my head was, and they passed no judgement.  They were patient.  I got free.

I kept driving, ready to make the first right when a woman waved me away.  Someone was stuck.

I proceeded straight slowly, and when I tried to move slightly to the left to be sure I cleared someone in the road, I quickly ended up on the curb.

Fortunately no cars were in the way.  But I was not moving.

And then… there were people.  New people.  Surrounding my car.  Strategizing.  Thoughts of Thursdays appointment still waffling around in my head, I desperately tried to focus.  They worked at it.  I did as they said.  And in a few moments, I was free again.

I kept to the main roads for as much of the rest of the trip as I could manage.  And I was doing well until I had to stop to let a car pass at the service road.  Stuck again.  This time I had the wherewithal to free the car on my own.  And as I turned down my block, there was a sense of relief.

So I pulled up alongside our other car to quickly shovel out the spot in front of our house.  Then I got in the car to back it up.  Spinning wheels.  Sliding.

Then there was a neighbor.  Then another.  People I have lived near for 13 years, but I am embarrassed to say I formally met for the first time today.

They aren't actually touching - but it's 2 inches at best.

This time the predicament was a bit more dicey.  My new car was literally inches from the old one.  A slide in the wrong direction was going to cost me the front corner panel of one, OR BOTH, of my cars.

Hesitant I called my parents house.  I knew my Dad would make it down and help me make sense of it.  I frantically shoveled until I could see the blacktop of the street, looking over my shoulder and holding my breath as a few cars sporadically made their way down the street.  Our other neighbor, a former bus driver, came over and strategized a bit.  Before I knew it the two of them were moving my Saturn out of the way.  As my stepdad’s familiar smile greeted my from the window of his truck – my neighbors had safely parked both of my cars – without them ever touching!

Relieved.  Grateful.  Exhausted.  I gleefully accepted my Dad’s news that he’d be using the snow blower on the back of our property and I busily got to work on the front.  Street to street property is nice… most of the time.

Guess we should have taken the flower pot in?

Some time close to five – a few minutes before my husband got home, I walked my sore back into the house to greet the face of my wiped out “I’ve totally had it.” kid.

Close to two hours after I had left my job, I had to stop for a minute and reflect.  The chaos of my mind was still swirling about my head.

I chatted with “The Captain” for about 15 minutes in awe of exactly how many angels had crossed my path today.  By my count at least 15 people had in some way “paid it forward” to me and my girl.

And I work less than a mile from my house.

So what if every day was a snow day?  Well we may have lots more chances to find out.  But, more importantly, what if we TREATED each other, EVERY day, as if it was a snow day.  What a wonderful world it would be.

PAYING IT FORWARD LOGO

Generous Heart

I’m not exactly sure how the idea got into her head.  At some point Meghan learned it to be possible to donate your hair to make wigs for people who had no hair.  And she decided that she wanted to do it.

For a bit of time it was talk.  We spoke about when it would be a good time, if her hair was long enough, and how it would feel to lose so much hair.  Then she got serious.

Sometime right after school ended she decided it was time.  So, we went to a new hair salon and had her hair measured.

“Close,” they said.  “Come back in about 2 months.”

And, as summers go, time passes and 2 months is gone.  We made the appointment for today so she would have time to “adjust” to the new hair if she wasn’t happy.

Before...
Before…
Almost ready...
Almost ready…

 

She was anxious but determined.  Confident that it was the right thing to do – she bravely sat in the chair.  Her hair was measured to ensure it reached the necessary 10 inches.

Then, even I held my breath as the pony tail was cut off.

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And as the hair fell down, the smile of relief sprang up.  She saw the life bounce into her hair.  She knew it would all be OK.

As she looked at her new cut, and adjusted to the reality that she had just done something HUGE for someone in need, I couldn’t help be overwhelmed with pride.

Once again, my girl led me by example.  Once again her bravery is unmatched.

You see last Friday we found a small bald spot on the top of her head.

Yesterday Meghan got the formal diagnosis of “Alopecia Areata.”  It hasn’t got a blessed thing to do with Cowden’s Syndrome.  Although being affected BY Cowden’s Syndrome has made us all more aware of the needs of others who suffer.  The denim ribbon we wear each day is a reminder of the Global Genes Project, and a search for cures, or at least awareness of ALL rare diseases.

Stress can trigger this unpredictable autoimmune hair loss.

We can hope the spot was a reality check for all of us.  A reminder to try to take some deep breaths along the bumpy road we travel.

We kept it from Meghan for the weekend, but as we headed to the dermatologist Tuesday the conversation had to happen.  We go through too much here not to have each other’s trust.  I answer questions as briefly as she allows, but I always answer honestly.

There is no way to know what path it will take, if this will (hopefully) be the end, or the beginning.  Alopecia Areata is a life-long condition.  It may stop now and rest forever.  Or maybe it won’t.  We just don’t know.

But we are kind of used to that around here.  There are no “plans” anymore.  Only guesses, and hopes, and prayers.

And thankfully we live with the confidence that there is a greater plan than any of us can wrap our heads around.

For now, some beautiful little girl will soon receive a wig made in part by Meghan’s beautiful, curly hair.

My beautiful, BRAVE, GENEROUS girl!
My beautiful, BRAVE, GENEROUS girl!

No such thing as coincidence

I woke up this morning earlier than normal, and that is not like me.  Worry had taken its toll on me through the night.  I was up and showered with plenty of time to get Meghan to Sunday School.

She woke up sore and stiff – some combination of a difficult swim class, and her body’s realization that it had been two days without Celebrex.  That is her “wonder drug,” the one that keeps her moving pain free.  She needs to be off of it until it is determined if she will need thyroid surgery.  The pain will progress.

Still, determined, she struggled through getting dressed and found her smile before heading out the door.  She looks forward to church – the lessons, the children, the teachers.  She adores them all.

As I headed home to wait out her class I heard a song on the radio that I have heard many times before, but today Matthew West‘s “Strong Enough”  spoke to my heart.

If you don’t know the song, its worth listening to, but some of the words that spoke to me; “I know I’m not strong enough to be everything that I am supposed to be.  I give up.  I’m not strong enough… Hands of mercy won’t you cover me, Lord right now I’m askign you to be Strong Enough for the both of us…”

Tears streaming down my face I headed home.  I am always thankful and amazed when the song  I “need” hits at exactly the right time.

As Felix and I headed back for the 11 AM service I reflected on the week in front of us.  The biopsy looms large.  The results even larger.  Sandwiched in between is an appointment for my spleen.  Busy week for the Ortegas and their ever troubled organs.

I had Emailed the pastors to let them know of Meghan’s biopsy.  They have done such a wonderful job helping us feel at home, even as we are technically “guests,” that they have made it known to us they appreciate being kept “in the loop.”

This morning during Church I was introduced to a Moravian Custom.  Appranetly early in the year everyone chooses a scripture verse from a large basket.  They called it, jokingly,” Fortune Cookies, Moravian style.”

We were told that this passage would be our “watchword” for the year, and that we would would see God’s work in our lives through the scripture.

I said a quick prayer to God to send us something good.

As usual, He did not disappoint.

For Meghan – Hebrews 11:1 – “Now faith is the assurance of things hoped for, the conviction of things not seen.”  For my Meghan, a verse to define the abstract “faith” that yielded lots of good discussion today.

For Felix, a verse from Job 37:5 “God thunders wondrously with His voice.  He does great things we can not comprehend.”  A reminder to the strength of our family, from Job who suffered so.

For me, Psalm 116:2 – “What shall I return to the Lord for all His bounty to me?”  The reminder to continue to “Pay it Forward,” and to remember even on the tough days, I am so blessed.

The prayers of the church lifted up my little girl, and she sighed.  So pleased to know the larger community sees her needs.  She has such a long prayer list of her own, that to be remembered and prayed for clearly touched her soul.

I left church to a hug from the pastor, who is also a mom.  As I looked into her eyes no words were needed, and meaning was clearly conveyed.

Despite our rough times… God is good to us.

I heard the Matthew West song again today.  I didn’t cry this time.  I just took a deep breath.  “I don’t have to be Strong Enough….”

There are no coincidences.  Only the hand of God through the power of the Holy Spirit, ready with exactly what we need, when we need it.  Truly amazing.

God’s got us covered.

By this time Tuesday we will be awaiting results.

Christmas Letter 2012, and some unexpected happenings

Disney – August 2012

This is the letter I send in my Christmas cards… shared for my “on line” friends.

“So do not worry about tomorrow, for tomorrow will bring worries of its own.” Matthew 6:34

December 2012,

Dear Friends,

It is hard to imagine another year has passed, and here we are again – eagerly anticipating Christmas and the birth of the baby Jesus.  This year the Christmas season is peppered with even more emotion, as we watch our friends and neighbors rebuild from the effects of “Super storm Sandy.”  Those of us whose homes were unaffected live in a state of uneasy gratitude, as we do what we can to “Pay it Forward,” to those who have lost so much.

Life in the Ortega house continues to be one of adventure.  We are blessed.  Meghan excels in school, and loves to swim and dance.  Medication allows her to move her body without pain.  We are grateful each day for each other, as it is that bond that allows us to weather the storms of life.  And there have been some this year!  Some time in early spring, Felix joked that I should start on my Christmas letter.  He wasn’t kidding.

We began the year, Meghan and I, addressing all the preliminary appointments connected to our new diagnosis of “Cowden’s Syndrome.”

We needed to be set up with oncologists, endocrinologists, the geneticist, and for me, a beast surgeon, an endocrine surgeon, and a GYN oncologist.  We can’t use the same doctors, because she needs pediatrics, and in most cases we can not even use the same facilities because our insurance carriers differ.  We have been scanned repeatedly – each MRI separate.  Sonograms of every body part you can imagine.  All of this to learn that this testing will take place in 6 month cycles pretty much indefinitely.

There is so much overlap as to how everything came together this year that it is even hard to summarize.  I feel like sparsely a week went by without an appointment – many of them in NYC.  I laugh now at the days I swore I would NEVER drive in the city.  I don’t use the word “NEVER” much anymore.

In February, Meghan endured her 4th surgery for the arteriovenous malformation (AVM) in her knee.  The recovery this time included crutches, and the realization that there was blood leaking behind her kneecap.  We were sent to Boston Children’s Hospital where she had a consultation in April with “the doctor who will do the next surgery.”  Again, not if, but when.  So we wait.  She will be scanned again in February to determine the status of the very stubborn AVM.  Cowden’s Syndrome complicates any vascular anomalies.

In March I underwent a “prophylactic” bilateral mastectomy.  After consultation with several doctors, it was determined that the 85% risk of breast cancer that Cowden’s carries with it, coupled with my personal and family history, made the surgery a necessary next step.  Both the surgeon and the plastic surgeon were on site as I opted for immediate reconstruction.  The surgery turned out not to be so prophylactic, as my pathology showed I already had cancer in the left breast.  The best thing that came out of the surgery was having my mom hanging out in my house for a week – just chatting and giving me a much needed hand. Thankful to God, and for my surgeon, and my husband, for pushing me to get it done – we caught it in plenty of time, and no treatment was needed.

Continuing with all the initial appointments and scans, a suspicious polyp was found in my uterus a few weeks later.  A trip to the GYN oncologist led to a conversation that left me with little other option than a complete hysterectomy.  So, about 10 weeks after my breast surgery, I headed back to NYU for a complete hysterectomy.

A month later we took Meghan for her thyroid scan to Sloan Kettering.  We were told that one of her many thyroid nodules was close to a centimeter and starting to dominate the area.  So, our initial “return in a year,” changed to – “we will rescan her in 6 months.” December 27th we go.

Subsequent scans of my interior, (I keep telling them to leave well enough alone – but they believe in taking the used car to the mechanic,) have revealed 4 hamartomas on my spleen, and a small cyst on my kidney.  Those are benign, and common in Cowden’s Syndrome, but need to be watched because the potential for other complications exists.  I will also be rescanned the last week in December – but after losing so many organs this year, I warned them that I am rather attached to my spleen!

In the midst of our medical “stuff,” life continued around us.  In June our hearts were broken by the loss of Ken’s dad, or GGPa, as he was known to Meghan.  A man of such compassion, and love – a gentleman, and a GENTLE man – will be truly missed.  Our hearts will never be quite the same.

Meghan and GGpa

Just to keep things interesting, as “Super storm Sandy” raged around us in October, Grandma Edith, Mom’s mom took a fall down the basement steps.  No one is quite sure exactly what happened, but it is evident that the angels held her that day.  She suffered a serious head wound, and severe bruising, but broke nothing!  She spent days in ICU, and returned home the end of that week.  With the help of a high quality staff of physical and occupational therapists, as well as the never-ending love and care she receives from Pop and my Mom, she is getting physically stronger every day.  I admire my grandparents.  As they approach their 67th wedding anniversary, they stand together as examples of marriage as God intended it.  They are role models to us all.

Love my Grandparents!

Their marriage reminds me that God gave me a great gift when he sent me Felix.  I can say that we share such love through God’s grace – that I can not imagine my life without him.  He is my soul mate – and my sanity!

I guess I leave you with – to be continued.  No words of wisdom this year.  We are trying our best to take it one day at a time.  The tree is up.  We have our hearts and our heads focused on what matters.  We certainly have had plenty of lessons!

We would love to hear all the things that are new in your home!

Warm Christmas Blessings,

Lori, Felix, Meghan, Allie & Lucky Ortega

“Sometimes your blessings come through raindrops, sometimes your healing comes through tears….Sometimes trials of this life; the rain the snow the darkest nights, are your mercies in disguise.” –Laura Story

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See, and just when I thought it was safe…

The cards were in the mail Sunday night.  I was getting it together.

Monday I was leaving work, ready to make one stop at a friend’d house before getting Meghan.

I stopped at the stop sign.  I looked to my left down the one way street I have traveled so many times before.

I was clear… and I drove.

3/4 of the way through the intersection…

I really did love my Hyundai

I didn’t see the SUV until it was in my rear driver side door.  I spun like an unwanted ride on the teacups and ended up on the grass and curb facing the wrong way.

His car ended up a block away.  There had been no braking.  No horn.  The impact shut his car down.

As I managed my way out of the passenger seat I was clearly stunned – full of so many thoughts.

The trip in the ambulance with an “angel” from Meghan’s school who happened to live in the neighborhood was surreal.

I have laughed and cried a lot over the last 24 hours.  I am grateful that I am walking and moving.  I am tolerating the muscle spasms and bruising.

As I spoke to the claims adjuster today and they explained that the claim would be backlogged due to the hurricane… I understood.  What I didn’t understand is how the guy speeding through the school zone is right, and I am wrong… but I may never understand that.

The thought that gave me peace tonight… in a year that has been so tumultuous, was that maybe – since it was dismissal time so close to my school… maybe I had to take the hit so someone’s kid didn’t have to.  Maybe… just maybe.

So I think of my little love.. and I am so happy she is safe.  And maybe that thought is where I will draw my peace.

“Sometimes your blessings come through raindrops…”

Now, if you’ll excuse me – I need to head out for a sonogram of my spleen… seems they need to make sure those hamartomas weren’t impacted by the crash….

Anyone else looking forward to 2013?