Sunday, January 26, 2014

It's a Small World After All

Last spring while tooling around on Facebook, I came across a status in which Shannon Laffoon - mom to the ultimate Warrior, Wylder James - was tagged.  Shannon was in Boston to cheer on Philip Maderia and the Running for Rare Disease team from Genzyme as they ran the Boston Marathon.  At the same dinner, according to the weird world that is Facebook, was another name that I recognized - Kailene Simon. 

Kai and I went to college together, and she had just friended me a few days prior to my discovery. Kai was also apparently part of the Running for Rare Diseases (RFRD) team.  I couldn't handle the coincidences and responded, making the connection for everyone.

Sometimes I'm very naive lol.  Obviously, they had already figured it all out.

the RFRD team (Kai is 2nd from left on the bottom)

We all know what happened next.  Two cowards planted and exploded bombs.  Lives were lost, others irrevocably changed.  Thankfully all of the runners and patient partners of the RFRD team were safe, but they were certainly not unscathed.

In spite of it all (or perhaps because of it),these same folks are doing it again.  They are giving their all as they always have, but this time there's an edge to it.  A determination that permeates the entire city of Boston - to come back together on Patriots' Day this April and run the marathon, this time safely and in its entirety.

Boston Strong.

This year's marathon will also carry a special meaning for our family.  Kai will again be running, and this time has declared "I Run For Quinn" (click the link to see Kai's beautiful blog post!).  She has asked us to be the patient partner family in honor of Quinn, to raise awareness, support and funds for research on Niemann-Pick Disease, Type A.  

She is running 26.2 miles.  

In honor of a little girl she never got to meet.

Mere months after giving birth to her own beautiful little girl.

For a friend she hasn't seen in 14 (ack!) years.

Returning to a site filled with emotion and sadness, but also strength and grit (have you met any Bostonians??).

That, ladies and gentleman, is a hero.  And I am so honored to know her.

a photo of Kai running the 2013 marathon graced the front page
of NORD's most recent newsletter
(and look up to the right for a cameo appearance by Shannon with Phil!)

**Interested in donating to support Kai's run?  Click here

**Follow the entire Running for Rare Diseases team!  Like them on Facebook and sign up to receive updates on their blog

Tuesday, December 31, 2013

Goodbye to The Best Year of My Life

2013.  A year that will live in infamy, no doubt.  And yet I am having a tremendously hard time letting it go.  

Probably because while the worst thing that we could possibly endure happened on August 9th, the best thing that we could possibly hope for happened for the preceding 221 days of the same year.

Our family was complete, and Quinn was our shining star.  

summertime pops on the stoop
so proud of their platter for daddy's father's day gift
Quinn's got the whole world in her hands (aka mommy's sunglasses and Colin's face)
this was an HUGE deal - she hadn't allowed anyone else to hold her in a long time :)
during our Maine trip

I head into 2014 knowing that never will a year in my life be as good as this one was.  Never will I hold Quinn on my left side, her face smooshed into my shoulder, or on my right hip to face out to the world and enjoy the sights and, most of all, the breeze.  Never again will I hear her laugh in person, see her grimace when she didn't get her way, or see her eyes light up with any of us walk into the room.  I won't have the hope of just one more milestone, or one more chance to do x, y or z.

taking it in
clearly something didn't go precisely her way lol
one of my favorites - so in love :)
spreading her love around... this grin was for Reid and Reid alone <3

2013 also brought us - largely by way of Quinn - the most intimate knowledge of goodness I have ever had the pleasure of encountering, which in turn has increased the goodness in us.  The year opened with the unbelievable benefit my family and our friends hosted back in January and continued throughout the year via well-wishes in the mail, on Facebook, comments on the blog.  

The unexpected mentions of others who have thought of Quinn and unprovoked acts of kindness of friends, family and strangers alike.  

The group of women, most of whom I have never and may never meet in person, who banded together and have provided our family with home cooked meals every week since my surgery in September.  Who most recently surprised us by picking up the tab on a Poconos getaway the four of us took for a few days after Christmas.  

The incredible photographs captured by those wonderful photographers.

The goodness of our friends and family helping out with the boys while I am physically down and out, with nary a complaint.

Of course, this year has brought more than its share of bad times.  Too many diagnoses of cancer - mine, my uncle, additional scares with an aunt and the loss of a cousin too soon.  Friends who are learning they may never dig their way out of the debt they incurred, through no fault of their own, because of Hurricane Sandy.  Typhoons, Hurricanes, shootings - much unnecessary heartache and violence.

And of course, the loss of Quinn.  For me, that loss is not something that ends with the passing of December 31st, with some calendar's determination of a new beginning.  It is a loss that will stay with me forever.  But 2013 was the year in which we really had her.  And for that reason, I could never bid it good riddance or be glad to see it go.

So instead of Happy New Year, I bid you all Happy Every Day.

Quinn loved to grab our noses and faces.
There was actually a good month where she would.NOT fall asleep
without her hand squeezing the crap out of my nose lol
first night in her big girl bed!
loving all that space to roll :)


look-a me, so pretty!
so happy on her only birthday

Friday, November 22, 2013

A Thousand Words

We have been the recipients of generosity untold over the past 18 months.  One of the greatest gifts we've been given - besides the almost 15 months we had with Quinn - was her lasting image.  While iPhones and Instagram work wonders, nothing takes the place of a professional photographer and we were lucky enough to be offered the time and talents of a veritable consortium of them, some individuals and a group gathered at the behest of one primo lady - Heather of Forever Fireflies.

Heather and I were on the periphery of multiple groups but had not actually met before last Fall, when she contacted me to offer a shoot of Quinn and the boys.  The day of the shoot, she broke the news that it was not just that shoot, and not just her photography business - it was a host of shoots set up for Quinn to document her life and capture her image for as long as she was with us.  Shira of Shira Z Photography. Jen of Lightful Photography.  Angela of Angela Marshall Photography.  Lori of AvaJack Photography.  Nicole of Nicole Renee Photography.

And one of my best friends from high school who does photography on the side (and painting, murals, drawing, cake design... oh yeah, and working and raising three kids - you know, a real lazy lady) did two shoots with Quinn - what actually wound up being her first post-diagnosis, and her last just a week and a half before we lost her.  Jen of A Mother's Touch Photography.

So, without further adieu, a deluge of Quinn photos (which is a mere sampling of what we were actually presented), and a looooooooong overdue public THANK YOU to each of these incredible ladies. There is nothing that I can say that will ever relay to you what you have done for us.   So I will have to leave it to a very trite thank you.

September 2012, A Mother's Touch Photography

October 2012, Forever Fireflies

November 2012, Angela Marshall Photography (Quinn's Blessing)

November 2012, Shira Z Photography

December 2012, Lightful Photography

January 2013, Angela Marshall Photography (Quinn's Benefit)

this is the trifecta... this photo was by Angela of Angela Marshall,
of a drawing by Jen from A Mother's Touch,
of a photo taken by Shira of Shira Z

February 2013, Forever Fireflies

May 2013, Nicole Renee Photography (Quinn's Birthday Party)

May 2013, Forever Fireflies

June 2013, AvaJack Photography

July 2013, A Mother's Touch Photography