First.

Everyone loves New Year's Eve and the first day of the new year.  Personally, I think they are both pretty anticlimactic.

In contrast, I think the 2nd of January is actually quite neglected.  And for that matter, so are the other days of January.  I don't understand why everyone feels that the first day of the new year is so shiny and different.

Let's be honest.  Nothing is really different on the first of January.  Nor does it yet challenge you on your new year's resolutions, but it's the subsequent days...  when the fat calories have finally settled into your waistline and the alcohol from celebrating has worn off.  It's the later days of January that are the meaningful ones.

I choose to do my reflecting on the less appreciated days of January in hopes that it will give me better insight and reflection as I head into the start of 2011.

Every year I put together a hard cover picture album of our family's year.  A pictorial memoir of the year's most precious and funny moments.  Or the little things that I know I will miss when the boys have grown up and are not the sweet little kids they are today.

I enjoy taking on large projects and always have a vision.  But this is a cumbersome project that I sigh my way through with each click of the mouse.  As I sift through and organize all 780 pictures, I have stumbled through a treasure trove of beautiful moments.  Unforgettable scenes.  Places and people that we want to remember.  I CHOOSE to replay for our special pictorial.  I explore and relive a series of firsts for our family.

A first birthday...  where everyone is sick and exhausted, but still has cake and party hats.

A first haircut...  with the thrill and excitement of a sweet, sticky red lollipop.


A first trainride...  to downtown Chicago on a cold December day to meet Santa for the first time.

A first garden...  to teach the beauty of nature, the wonder of growth, and the rewards of commitment.

A first day of school...  with a vibrant red shirt and twinkling eyes filled with wonderment.


I am taken back with other moments as I inhale the chlorine at the glistening aqua pool where the boys are splashing.  I hear the drone of the lawn mower with Michael cutting the grass behind Daddy for the first time in the misty spring air.  I feel the sweltering heat of summer during a super soaker stand-off in Lake Geneva.  I smell the cool autumn air at the pumpkin patch. Then,

I stop.

I stare at an image that is definitely a defining point in our year.  Most certainly, this is a first.

A first hospitalization...  to treat the first pulmonary exacerbation.

I see Michael sleeping in his hospital bed at Children's Memorial Hospital.  Dots of colors mix together on my computer screen to show my sweet sleeping angel in a hospital bed wearing his beloved Batman shirt...  an emblem of a superhero.  Awe, sadness, and healing all strike me at the same time.

I am completely stumped.  Humph.  This one picture sends me into a flurry of digital images.  Flashes of moments across my computer screen of another life, the CF life that has been lived in 2010.

Other memories.  The very real impatience boiling over by a three and half-year-old after five days living on the 9th floor in a 12 by 12 foot room of Children's Memorial Hospital?  Ungodly fluorescent lighting.  Electronic numbers crawling across screens.  Beeps from machines.  Glaringly ugly hospital floor tile.  The iconic Chicago skyline out our window.

Do I pretend that we have this picture perfect life that, with a little editing and cropping, doesn't involve weeks of antibiotics, days in the hospital, and hours and hours of breathing treatments?

My husband's proud smile shaking hands with our esteemed Representative in her Washington DC office on Capitol Hill.  Their locked eyes deep in discussion on legislation that would help thousands of CF patients and those with chronic disorders.  A father fighting for the best for his sons.  The Capitol building on a gray March day.

Do I put these on the pages that mark our lives for 2010?  Our continued fight and advocating our story to those who vote on the Senate and House of Representatives floors of the greatest country in the world.

The vibrant blue sky against Chicago's shimmering lakefront for the Cystic Fibrosis Foundation's annual walk to raise money for a cure.  Where our family and friends gather to reflect on where this ugly disease has been and how we can band together to better Michael and Dylan's days.  The kids playing on the lawn of famous Soldier Field, home of the Chicago Bears.  The balloons.  The food.  The music.  The fun.  The heartache.  And the healing.

Is it possible to *not* include these images?  This is who we are.

Forgetting to include these images is like a missing part of DNA in our lives and our history as a family.  Huh.  DNA.

The images flick through my mind as I sift through the highs and lows of the new year already.  We are only days into the new year and there are already some firsts of 2011, reminding me of the very real fight that we are in as we battle CF every day.

Last night brings us the first middle-of-the-night CF belly ache of the year.  I know parents all around the world wake up with their sick kids in the wee hours of the night.  This is not a headline.  But these late night belly aches are different, they are regular, and they are unwelcome.  As a parent, this is the disease creeping in.  It interrupts my sweet little boy's rest.  And I hate it.

Probably a score of times, Michael has woken up in his very young life to a irreparable stomach ache.  He bursts into our bedroom crying for us and heartbreakingly sharing that his tummy hurts.  I look at the clock.  It is 11:42.  I groggily roll over as my husband walks him back into his room.  We know the drill.  We take shifts to soothe and console him.  He writhes and groans a bit and tries to fall back to sleep in his battle stance whenever this happens.  He lays rolled up into a tight ball, his knees and legs firmly tucked under his belly with his head buried in his pillow.  Comfort is an impossibility.

My first time into his room, he is laying on his side shifted a bit from his ball position.  His eyes slightly crack when I come into his room.  "My belly hurts," he whispers.  I sit beside his bed and stroke his creamy cheek.  His sweet little pink mouth and closed eyes are still.  His nose is so perfect, he looks like a porcelain sculpted doll.  How can a sweet child deal with such discomfort, and so gracefully?

My longest shift is for an hour laying in his bed with him.  I rub his back and we whisper, "I love you's" back and forth periodically.  I try to convince him to take a Tums to try to help the acid churning in his stomach.  He bucks my attempts for a while but finally gives in.  He settles down back into his comfort position with his favorite blanket on his bare stomach hoping that the healing powers of his "blankie" will make it all better.  I ask him how he feels and he replies, "Almo better."  I think he tells me this for me to feel better, not him.

I stay with him as we listen to a lullabye version of Coldplay's greatest hits.  And when I think he is calm and quieted, I slip out after explaining that if he needs us to come get us or go into the bathroom and we would help him. 

It is 2:38 when he bounds into our room screaming that he is going to get sick.  FINALLY.  He is nervous and talking loudly.  But perhaps most welcomed "first" is that this little trooper makes it all the way to the bathroom and gets sick into the toilet successfully, which makes the clean up for Mommy and Daddy in the late night hours as simple as the push of a lever.  There have too many nights to count where we have stripped sheets and are performing a HAZMAT mission through our groggy states.  When he is done, he takes some small sips of cold water and climbs back into bed.  He calls on us periodically and we continue to check in on him until somewhere around 3 am where he finally falls asleep.

This is normal in our house.  And it stinks.  There is no explanation.  No stomach flu.  No food poisoning.  Nothing.  It's just the lurking evil of CF.

Another first, a frankly devastating first, to ring in the New Year is the announcement this week that a drug we had been following since Michael was diagnosed has failed Phase 3 Clinical Trials.  POOF!  This is one of the drugs in the "cure" category that was to fix the problems in CF lungs.  This is the drug that Michael had been part of the study prior to heading into the hospital in November.  This is the drug that all the experts we knew were nearly buying stock in... it was that close.  Medical executives with CF believed our boys would ultimately benefit from.  And we learn that the final results are in the best of terms, disappointing.  The drug performs almost the same as the placebo in the second Phase 3 study.  Furthermore, the company backing the drug has to drop it altogether with no more additional support or considerable follow up research in order to avoid bankruptcy.  There goes another miracle.  So close.  And it's the first missed shot that I have experienced in this waged war against CF.

I believe that ringing in a new year is less about new beginnings which can be tantalizing and attractive.  New beginnings are deceiving and rare if they happen truly at all.  Rather a new year is about learning from every experience from the previous year.  Every first.  Every last.  And every single one along the way for that matter.

While I struggle to balance our days with CF hanging around, I finally decide to include those pictures in our 2010 family album.  Afterall, they will tell a truly remarkable, wait, a truly miraculous story some day.