Monet.

Scenic Chicago.  On this day, I don't think I have ever seen it so gorgeous.  I have lived my whole life in the suburbs and even worked at a Michigan Avenue address for seven years.  But for some reason the sky is bluer, the skyline more defined, and the view more astounding than ever before.

To the right, turquoise sparkling waters where crisp white silhouettes of sailboats mark the waters.  Straight ahead in the distance the iconic Sears Tower (to those Chicago natives it will never be Willis Tower, sorry).  Two long white spindles above the land.   To the immediate left, I am passing the Field Museum.  A building of treasures that glitter and glimmer and also ones that are dark and dusty.  Each artifact telling a story of amazement and wonder.  Just two days ago, we brought met my brother and neice to spend the day ooh-ing and ahh-ing at Sue the T. Rex, the most complete T. Rex skeleton on earth.  Dylan walked into the dinosaur exhibit and exclaimed over and over (for the whole room to hear), "Oh.  My.  GOSH!"  pause for 10 seconds and repeat.  "Oh.  My.  GOSH!"  This would go on a good five or so times.

I follow the path where the flowers are tumbling out of the planters and the shade is so inviting on this May afternoon, folks are stopping along the way to sit.  Tomorrow we shall embark on our 12 hour looooooooong journey back home.  Two kiddos, a Labrador Retriever, and a hard-top luggage carrier.  I don't which I will need more tomorrow at 6 am...  a shot of espresso or a shot of whiskey.  Either way, we will soon be heading back to our own beds.

But not until we have finished one last mission.

Great Strides.  Our annual walk to cure Cystic Fibrosis.  Where each step is for a cure.  For our beautiful sons.  And so many others.

The scene is something to behold.  Each year I see this scene and have my quiet moment.  I don't share it with anyone.   I keep it deep in my heart and keep a smile across my face to mask my feelings.  Our friends, our supporters, our army gathers at the white tent where our banners hang proudly.  There is mingling and laughter.  But deep inside, I want to cry.  For the good in people and for the reason we are all here today.  I look around and see the same thing at so many other tents...  just different colored t-shirts and different stories about battles with this insidious disease.  Our friends and their little girl in the green shirts.  Our friends in the grey for their little boy.  Our friends in the blue shirts for the memory of their sweet son.  All the colors paint a Monet with movement and vibrance.  Dots of strength.  Dots of grief.  Dots of joy.  And many dots of love.  I can never fully take in the art.  Sometimes it's just too much.

I am yanked out of my moment by military helicopters zooming loudly overhead.  Luck would have it that our nation's President is passing by.  He has been in Chicago for fundraising for his upcoming campaign and his helicopters slice through the piercing blue skies directly over our heads.  The boys are entranced as the behemoth choppers power overhead.  A fourth helicopter follows the original three.  They head out over Lake Michigan and turn south toward Soldier Field.

I refocus after the thundering whir of the choppers has passed.  I find my grit and my hope.  There is more chatting and running after Dylan.  An appropriate family welcome to a new puppy as my brother-in-law and sister-in-law arrive.  The lovable pooch has floppy ears and big paws and she is the bell of the Great Strides ball at our tent.  Everyone adores her.  Then a bigger welcome as our new nephew, only ten-weeks-old also arrives with Mommy and Daddy.  Adorable and blinking away the light through his shaded stroller.  My heart swells with love and sunshine as more family and friends descend on our tent.

We head out after our mingling and the pooling tears in my eyes have faded.  Our family and friends break up and throughout the crowd of other Great Strides walkers and we are on a mission.  In stride with our loved ones we juggle the stroller where Dylan relaxes.  My husband is on the path minutes behind walking with Michael.

I inhale the warm breeze and eye the bobbing sailboats on Lake Michigan.  The walk is enjoyable, and I pan across the amazing skyline to the left as we walk north.  Time passes, and we turn south to return to our tent.  As we are nearing our last third of our journey, I am yanked out of my nostalgic gaze and thoughtful conversation with my best friend from college when psychotic screaming in the distance is now approaching quickly.  My eyes lock in on a cyclist who is yelling at the top of her lungs, "You IDIOTS.  Move outta the way!  You IDIOTS!  WHAT THE HELL?!  BIKE COMING THROUGH.  IDIOOOOTS!"  She is coming toward us on the bike path, riding the opposite way our crowd is walking.  And as we had been trying to for the duration of the walk, we try our best to move to the side...  That is, without stepping into the oncoming traffic of, um, LAKESHORE DRIVE.  I keep shaking my head.  What.  A.  Fool.

I halt my daydream of stopping my stroller, diving in front of her bike, and reading her a scathing lecture in humanity.  "Hey, lady, I know you are trying to go for a bike ride, but we are trying to save my boys' lives.  YOU IDIOOOOOT!"

Wow.  There is a whole lotta attitude in this world.  Even barreling through a charitable walk where to put it simply we are trying to help others BREATHE AND LIVE.  This insane woman has punctuated my experience in a remarkable way.  I tell myself that she is just a dot.  She is JUST A DOT in the whole picture.

Sometimes it's not easy to see the good in the world.  It's often a challenge to step back and see the amazement and beauty of the Monet, instead of the specific dots of color.  I don't ever want to get caught up seeing only the brushstrokes and missing the dazzling entirety of painting.

Luck.

Merriam Webster Dictionary defines "luck" as...

1 a : a force that brings good fortune or adversity
    b : the events or circumstances that operate for or against an individual

2:  favoring chance; also : success <had great luck growing orchids>

*  *  *

We are standing before a room filled with some of the most amazing people in our lives.  Yet we  only know a fraction of them.  The souls that stare back at us are fighters and friends, scientists and survivors, doctors and dads, miracle-workers and moms.  They are the volunteers, staff, and executives of the Cystic Fibrosis Foundation all gathered in one room.  We are attending the meetings that bring these brilliant minds together to share the ideas, the change, the hope and the mission ahead...

We are all here to cure Cystic Fibrosis.

For Michael.  For Dylan.  For Wells.  For Colin.  For Rosie.  And Kevin and Brady and Brock and Addy and Nathaniel and Francis and Luke.  For Eli and Savannah and Megan and so so so many more...


The individuals in this room are the extraordinary people who give me hope every night I put my head on my pillow and pray that the boys will have a better life with each passing day.  On this momentous occasion, my husband and I have the distinct honor of speaking before these individuals, who all connected together by one insidious disease.

All focused.  All with the same unwavering vision.  All staring at me.  500 people staring back at me.  The ballroom is vast and the lights are blaring their intensity as we stand on stage.  My hands are shaking.  Quickly, I hide them with my notes.  Flutters are bounding through my stomach.  I lick my lips, and I am praying that when I speak something comes out.  Not tears.  Not silence.  Words would be good.

My charismatic husband, always good with words and people, makes me even more nervous.  Five years ago, I had no problems speaking in front of crowds.  I was in sales for God's sakes!  But time passting of chasing kids, pouring juice in sippy cups and changing diapers has altered my confidence a tad.  My husband introduces me and I am humbled by his kind words and I see the interested faces in the audience.   Listening.  Thoughtfully.


As he turns the mic over to me, I step to the podium.  My hands are shaking uncontrollably and my self-consciousness takes over.  Oh please, words...  words... words.  Where are you now?  I rest my hands firmly in front of me to override the shaking. and I begin to talk.  Much to my satisfaction, the words do in fact come out.  I choke down hard as I talk about our boys and how we are very much in this fight with everyone in the room.  I share how inspired I am after hearing about the promise of the science, the strategy of the Foundation, and about the heart of each person in the room.  I explain, "As I was hooking up our boys to the machines for their daily grind of CF treatments, sweet and sensitive Dylan proceeded to ask me in his adorable three-year-old  lisp, 'Is it time to do vet and max?'  It was his way of asking of an ordinary thing...  was it time to do "vest and mask?"  For him, nothing had changed.  Today was the same as yesterday.  Same drill.  Nothing was different.  But for me in that moment, I swallowed hard and smiled at him knowing that today was, in fact, different.  There is hope that things will be different.  But our work is nowhere near finished.  There is still much to be done..."

I continue on with the actionable steps everyone can take as they move on in their own fights and fundraising.  I wrap up and  I feel my shoulders relax a bit as I step back away from the podium.  Phew!  I didn't melt in a puddle of tears.  And I don't think I fumbled.  I am fairly certain that the words all came out.  Oh good!  The words all came out!  Deep breath and smile.

Next my husband wraps the meeting with his insightful thoughts.

"Every year I look forward to this meeting because I always walk away inspired and motivated to go back to my home market and try to make a difference.  It's no secret that the success of this organization can be attributed to the passion of its people.  That clearly starts with the leadership team at the Foundation, but it runs deep through our volunteer network. I've spent a lot of time over the past few years thinking about some of our volunteers who inspire me.  Certain ones who have been asked to lead and I marvel at what they were able to achieve (and how the organization has achieved thanks to their leadership.)  After having the honor of hearing many of them speak at this conference in the past, I instantly knew why they (and WE) have been fortunate enough to celebrate some great successes.  I've often asked myself, how did we get so lucky to have such amazing leaders like this at our organization? I would like to conclude today by sharing an epiphany I had over the past year, which I think offers one possible answer to this question.  

As volunteers, we share a commonality that I believe drives our collective passion.  That commonality is, quite simply, that we have come to understand the struggle of those who are affected by this disease. No matter what your connection is, whether you are a father or mother, a grandparent or other relative, a friend or neighbor, or just an acquaintance. You have been touched by the story of someone who has Cystic Fibrosis.  And you've come to understand their daily battle with this maddening disease. I believe it is our unique understanding of this struggle that fuels our passion.  And there's no doubt that our passion is infectious.  It has the power to inspire, it is responsible for our past successes  and continues to be our beacon of hope, lighting an optimistic path into the future. In the end, my realization was that luck has got nothing to do with it." 

*  *  *

His words linger in my head two weeks later.  He gives me reflection on luck.  That little leprechaun  sneaking about life leaving a trail of luck and green glitter.

On this gorgeous pre-spring afternoon at home, I have a few moments to think, "What should I do with myself?"  Not a regular thought, certainly, and on this breezy, sunny afternoon I am appreciating all my luck and good fortune.  Michael is at school a few hours longer this day and my house is surprisingly tidy, given we had friends visiting yesterday afternoon.  I really don't want to fuss with laundry and all the loads that will inevitably come with it.  They can wait.

I decide to head outside to our expansive patio where Dylan is toddling around and exploring without his big brother smothering him.  I recognize the time for Dylan to do things in his space without a big brother interfering is a treasured moment sometimes.  I pause and inhale the buds starting to bloom and the warmth of the sun on my cheeks.  Bright and illuminating.  Early spring.

I decide to get our rambunctious dog in the yard to play fetch.  What could be a better way to soak in the time.  I glance at my watch as I release the insanity that we call our dog into the yard.  Quarter after two.  Huh, I have about thirty minutes before I need to get Michael.  Haley paces and swirls around me, shaking anxiously for me to throw her rubber orange ball, her favorite ball for fetch.  She cries and she tries jumping on me.  I grab the blue launcher for her ball and head into the yard.

After a good ten throws she is wiped out.  I send her inside for a drink of water and a treat to sit and get a breather.  Hmm, I think.  Quick minute to call my husband and check in.  Once, I hang up from the call, Haley is back on her feet crying at the sliding glass door to go back out for another round.  She stares at me intently and whines her angst to me that she wants one more session before she knows we'll be leaving the house to get Michael.

Begrudgingly, I let her outside again.  She bursts through the cracked sliding glass door like it's her last chance at freedom.  She races to her orange ball and snatches it in her jaw.  She paws at the ground and drops the ball.  And looks up eagerly at me.

I guide her to another part of the yard to launch the ball in a different direction.  She agrees and follows.  On the third throw, I release the ball.  The bright sun is painful in my eyes and I squint with horror on the direction where the ball is tracking.  My throw is off because of the intensity of the sun. Usually, Haley figures out when a balll is overthrown, underthrown or off.  In this case, the ball is off.  IN A VERY UNLUCKY WAY.

I begin cringing as I see my beautiful pup running full speed trying to catch a ball toward a tree.  I can't watch so I close my eyes.  She HAS to realize that she is so close to the tree.  Dogs JUST SENSE these things.  I open my eyes to see her collide with the tree.  The yelp is startling.  My stomach turns and I start screaming and running toward her.  No no no no no!!  She had hit the tree snout first and was thrust backwards.  I am running toward her and begin frantically assessing what happened.  Haley lay still on the ground for a few moments, then she picks herself up and slowly circles the tree.  I approach her bloodied face and gently take her chin in my hands.  She slowly sits and plops her head in my hands.  She closes her eyes from the immense pain.   I try to see where the gushing of blood is coming from, to no avail.


Dylan is on the porch watching everything.  I close my own eyes tightly and take a deep breath.  I open my eyes.  Yep, same scene.  I quickly usher Haley up to the house and press a towel to her wounds.  I frantically dial the vet's office, a friend to pick up Michael from school and my husband.  He is flabbergasted and concerned.  It had only been minutes since he just talked to cheery me.  And now I have a full blown doggie 911 on my hands.  It's go time.


Only one problem.  The dog is not going.  Anywhere.  She firmly plants her butt down on the patio and fiercely pulls back on her leash as if to tell me, "No way.  Not goin'!  Never."  She is hurting and needs help and NOW she wants to argue with me.  I gently and sweetly pet her and talk to her.  Stand up and pretending nothing has occurred, I begin walking forward.  She stays planted and yanks back against me.  I begin loudly pleading with the dog (like it's going to help).


It's then that I hear Dylan muttering, "Haywee hurrt.  She has a boo boo."  I feel the urgency of getting her to the vet's office.  I begin pulling with all my strength against the dog.  Thank GOD!  The motion and the movement of my pulling lifts her butt up and she begins her momentum in the same direction.  My poor dog.  She realizes she is in pain and she knows that I am unrelenting.  She has given in.  She needs help.  And frankly, probably wants to be done with me.


Minutes later we are in the car and it is eerily quiet.  No yelling kids.  No radio.  No cell phone ringing.  Q U I E T.  The silence makes me more edgy.  I wonder if this is strangely how I got my quiet afternoon back?

We race into the office where the tech greets us immediately and takes Haley to the waiting doctor.  We would spend nearly an hour in that waiting room to find out that with some bumps and some cuts, our beloved dog is okay.  The vet advises how lucky Haley is and how much worse it could have been.  She is a kind woman and hands me a bunch of medications with directions.   The front office as we pay and head out hand Dylan a green balloon.  (Read all about Dylan's adventure with the Red Balloon here.)

Green.  How appropriate today.

*  *  *

It is a few days later that we find ourselves with friends at our kitchen table partaking in corned beef and cabbage.  It is St. Patrick's Day, the most celebrated day of shamrocks, pots of gold and luck.  As we are eating, the children giggle at how a leprechaun left a trail of green evidence around our friends' house.  Michael shares how a leprechaun's tiny green footprints and "green magic glitter" were scattered about their classroom at school this week.

I smirk and think about luck.  Though I have personally never seen the trail of glitter, it does make me wonder.

Later the kids are playing outside in the yard.  They are running and laughing.  The dog is feeling better and is ecstatic to be playing fetch with Dylan again.  And of course, with her favorite orange rubber ball.  She takes a pause in the yard and relaxes.

Dylan calls loudly for me and runs over to me.  I lean over to kiss him and he says, "I want dat!  I need dat!"  And he points to my necklace.  It is a bauble where one side is a picture of a four-leaf clover and the other in archaic calligraphy reads, "Lucky girl".  I laugh as he tugs at the pendant around my neck, and I hug him... one of my little leprechauns.   Lucky girl, eh?

Cystic Fibrosis.     Progress.

Family.     Friends.     Man's best friend.

Tragedy.     Triumph.     Hurt.     Healing.
Hope.

It's not about luck...it never is.

Cracking the Code.

N1303K.  and Delta I507.

Pretty meaningless code to most people, but this combination is the one, two punch of Cystic Fibrosis in our house.  These are the two genetic mutations that reside on the boys' Chromosome 7 and misdirect the protein that causes CF.  It is these two bits of data stored in Michael and Dylan's double helix that causes us to spend tons of time cleaning up after it.  One mutation from me and one from my husband.  They were meaningless to me at one point in my life.  But are no longer.

I barely remember high school science classes...  earth science, biology, chemistry.  I vaguely recall my monotone, white-haired teacher talking about recessive genetic disorders.  The most I can recall from the topic are X-chromosome disorders like hemophilia, and that hemophilia typically is more prevalent with males than females.  I can also visualize the 4-square diagram that the teacher would demonstrate the probability of 'carriers' having offspring with genetic disorders.

There it is.  That is pretty much the extent of what I absorbed.  That's all.

I was more likely swooning over my latest crush or visualizing my performance at my volleyball game after school.  I never really embedded the science in my brain.  Why would I need it afterall?  I blew it off as I got older as something that I needed to learn for school and would never need to 'retrieve' from my brain's file folders again.  Let's face it, as an adult, I worked in sales and marketing for a media conglomerate.  My job was brands and persuading people.  My brain's filing system had tucked any science that I did once know way back in a dusty old manila file somewhere near the files for trigonometry (groan) and French rolling jeans (double groan).

There are moments in my life that are completely unreal.  There are the times that I reflect on these moments and start to connect the dots, even back to that unnecessary science lesson.  It is then that I realize the astounding coincidences and ironies around me.  They transcend explanation.

After college, I became close to a friend who was getting her Masters Degree in nutrition.  She and I lived together for a year and we both stood up in each other's weddings.  Our husband's both graduated with the same degree from the same esteemed university and went on to work (and still do 11 years later!) for the same big accounting firm.  To say the least, I have trusted her from the very first day I met her.  She is a true, caring friend, who is also now the mother of two little ones.

I recall sitting at my desk at work in between conference calls and sales planning meetings when I receive an email from my friend.  She had become a dietitian at Children's Memorial Hospital in Chicago, and on this particular occasion, the email is not about dinner plans or a bachelorette party.  Instead, she was requesting donations to support her participation in a fundraising walk.  It was for money to cure this thing called...

Cystic Fibrosis.  

Humph.  Shrug of the shoulders.  What's that?  It sounds pretty ominous, I think, but I have no clue.  I just know that my friend is doing good and I decide instantly that I will support her.  My phone rings and I swivel my chair around for my next marketing call from New York.  I gaze out my window at the quintessential Chicago view.  The Wrigley Building dead center of my office window emanating its beautiful architecture.  It's iconic clock staring back at me.  The void of the Chicago Sun-Times Building now starting to be filled with Donald Trump's ego, still only a few stories tall.  As voices join the call, I peer out at the western view of the Chicago River and Wacker Drive as it bends around South to travel past more colossal skyscrapers like the Sears Tower.  "Is everyone on the phone?  Who are we still waiting on?"  And the call surges forward focusing on whatever marketing plan is necessary or whatever fire drill is scorching from our executives. In my work distraction, my friend's email remains quietly in my inbox.

It isn't until weeks later that I remember, "Oh crud!", I forgot to make that donation...  for whatever it was that she was fundraising...  what was that again?  It sounded medical, sort of familiar.  I open the email to refresh myself and click through quickly to make the donation.  I don't want to forget again or get distracted from this task.  I click through the menus...  I don't know.  Do I "join the team" or do I "make a donation"?  I think it's a donation...  oh, I don't know.  After I make the donation, I call my friend to ask her to make sure that I did it correctly.  I curiously ask her how she got interested in this cause and she casually mentions that she has a colleague who treats kids at the hospital for this condition...  Cystic Fibrosis.  "Oh, cool.  Sounds like a good cause," I respond.  Then I follow it up with, "What nights can you guys catch dinner next month?"

A meaningless memory.  I have many of those that are buried deep in my brain never filed in my archaic system where the history notes and the high school gossip now reside.  These memories are in unorganized stacks, piles of different colored papers, scribbled with notes.  Some typed neatly, some are memo-style, and some are faxes.  But this donation memory gets lopped on the to the top of the pile and slowly gets buried with time under more useless information.

I never think about it.  I don't even hear that term again...  well until about a year later, when I get a call from my doctor early in my pregnancy to tell me that I am a genetic carrier for this thing called Cystic Fibrosis.   Again, I don't even recognize the term when he says it.  I am juggling my new promotion, which throws me back into the world of sales.  I am recalibrating my career and have a lot going on.  Oh, yeah, and now I am pregnant.

"It's the most commonly carried gene among Caucasians for genetic disorders, but it's rare and unlikely that your husband is also a carrier.  It's probably nothing, but you should have your husband tested, just so we are sure.  No hurry."  I hang up and have a lump in my throat.  What was he just talking about?  I call my husband and am starting to cry.  His positivity and no-worry attitude puts me ease.

When his test results a couple weeks later come back, I get the call.  He is also positive as a carrier.  I just don't know what to do with this information...  and after some Googling, is when the high school probability table comes back to me.  25% chance that our baby with have this thing called Cystic Fibrosis.  Where in the world have I heard that before?!  After a few days of heartache and my brain going to worst possible places, my husband reassures me that everything will be fine.  "There's a 75% chance that our baby won't have this... CF," he points out.

Huh.  75% huh.

For whatever reason though, this is still unsettling for me.

As time passes, there are more intersections and ironies.  After Michael is born, there are things passed over.  Doctors who dismiss the CF carrier conversations.  There are glaringly obvious symptoms that we wonder about, but as new parents don't know better.  But my gut keeps telling me to continue asking and pressing for more answers.  It is when Michael is 10 weeks old that we finally proactively have him sweat-tested for CF.  Not a real shocker for me, since as many moms can attest to...  you just have instincts about things.  Forget probability.  Maternal instinct trumps probability.  He tests positive, and that's when I choke down my ignorance.  Quickly, it is replaced by heartache.

We walk into the small medical exam room with sweet Michael in the baby carrier.  I am washed away in tears and my husband is quiet.  We spend time talking with the doctor, who explains everything about the clinical aspects of what this this diagnosis means.  She provides the comfort and support we need and also reveals the immediate steps that need to be taken to ensure our baby's best days ahead.  When we are through talking to the doctor, we speak with nurses, a social worker, and finally, a CF dietitian.

"Hi, I hate that we are meeting under these circumstances," the dietitian says as she comes in and sits down.  What did she just say?  I am confused.  There is both sadness and heartfelt kindness in her eyes.  "I am friends with your friend..." and states her name.  I am stunned.  That email...  I stammer in my head.  That donation from last year...  She is my friend's colleague.  And now, we are all connected in an inexplicable way.  My friend had walked last year to raise money for her patients who have Cystic Fibrosis.  And now, my baby boy is one of her patients.  It is all too much, along with the fact I am shell shocked purely from the diagnosis.

She sees my blank expression on my face as the wheels turn in my head.  I explain that I donated last year to the walk.  She smiles, but I can tell that she is already knew the foreshadowing of our connection.  "Everything will be okay.  Michael will be fine.  There are some things that we should discuss.  I know the doctor had mentioned to you that he needs to start enzyme pills with his bottles and I want to show you how to give them to him.  We will have a plan to help gain weight back.  Everything will be okay."  She can see that I am now past the inconceivable connection that we share and I am now drowning again in my grieving.  She realizes she needs to work fast to ensure that I get all the critical information before my head goes below the water level as despair and coping wash over me.  I can barely tread any longer.

It's these moments peppered throughout my life that make me do double-takes.  There are so many of them, I can't piece them all together.  I wonder what special, insightful moment is next and how the the surprise will be wrapped?  Will the the next moment tell me more about my future or more about my past?

Back to that code, within the immediate weeks following Michael's diagnosis, we learn more about these genetic blips.   First, our boys have rare mutations for a rare disease.  The odds are just crazy, but I guess I am not surprised.

• There is a CF gene called Delta F508 that accounts for about 70% of all CF mutation gene copies in the world.
• About 85% of those with CF carry at least one copy of this mutation.
• Approximately 50% of the CF population have both copies being this mutation.

To take a step back, our boys do not carry this mutation... at all.  Neither of their two copies are Delta F508, making them unique in an already unique group of people.

Since my basic science class from sophomore year of high school, I have since learned so much more about these CF mutations.  These bits of genetic code have run through history and along family lines for many generations unnoticed.  That is how it went in our families.  A silent gene carries on through the centuries.  Now as I study and learn more today, I can share a couple specific things about our code.  It has given me wisdom and insight greater than me.  We know that the N1303K mutation tends to follow Mediterranean lineage.  Not shocking since my husband is Italian.  And as I start to uncover information, the only thing I can find published in multiple academic medical journal abstracts shows a a higher concentration of CF population with this mutation living in Lower Normandy France.  France?  My family is Scottish and German.  I can't for the life me process... French.  My mutation is French?

Years pass, and we refocus our lives away from genes that we can't change, but we work on how we live every day to stay healthy.  Michael becomes a toddler and then a preschooler.  We have another baby boy, Dylan, who is a busy body and 'active' doesn't even describe his inability to sit still ever.

Just before Michael turns three, I decide it would be a fine idea to start to untangle our ancestry.  Nice, neat books filled with artifacts and information for our boys to understand their ancestors' stories.   I start with my family history on my father's side.  I spend days combing ancestry websites and doing web searches looking for information.  I begin compiling documents and the family tree where some generations span as many as 13 siblings.  As I research, I become intrigued with my ancestors further up the generations, those hard-working people who came to America and I want to understand why they chose to come here.

I find a blurb by someone who also carries my maiden name and has researched our family clan.  He tells the story of our Scottish clan that moved to Ireland and then on to America to start a new life away from religious persecution.  But the author goes beyond and takes even further back.  It is this that immediately catches my attention.  "The surname (my Maiden name) is one of great antiquity. It originated in the area of the Picts, the eastern portion of Scotland, where they (Picts) were allowed to settle on condition that all their Kings agree to marry an Irish Princess. The Picts are considered to be among the most ancient of the founding races of Scotland. Bede, a respected historian (born 673), estimated that they came to Scotland some fifteen centuries BC...

from France."

The hairs stand up on my arms and back of my neck.  There is my answer.  I have no doubt that this little genetic blip has traveled from France before Christ's time all the way to Scotland, to Ireland, to Philadelphia, to Virginia, to West Virginia, and then to Chicago.  I read further and find the my ancestor's motto was "J'ai bonne esperance."  In English,

"I have good hope."

That says it all.

I understand that this gene has passed through the generations since an estimated few hundred years before Christ.  It has been part of my family and been there all along.  It is part of me.  It is part of us.  Remarkable and unmistakable.  I now look very differently at this teeny tiny gene.

My brain has since refiled this information about genetic disorders and how the work.  I have pulled them out of the filing system, dusted them off, and planted them at the front of the filing cabinet.  I have also added to the file more information that spans the centuries.  These special bits of information I will no longer need to sift through piles of memories to retrieve.  Instead, they are burned into my brain, my heart, and my soul.  Forever.

These two strings of letters and numbers have led us in a new direction in our lives and given us beautiful context of survival and life.  And HOPE... or direct translation, "good hope".   They certainly make our daily lives tricky and staying healthy for the boys but there are blessings hidden inside.

Meeting new friends and caregivers that have forever changed our lives with their wisdom, support and grace...

Connecting with incredible stories of heroism of individuals battling against their own genetic blips, which we would not have truly heard otherwise...

Uncovering family history about ancestors who also carried this genetic code deep inside of them.

Most of all, these two genetic mutations are challenging us to look at the before, the now, and the some day to learn more about ourselves.  Without this code forever altering our lives, my story just would not be quite what it is today.