Saturday, August 9, 2014

My Aching Hip

Many hours of most days I am able to seem normal.  Act normal.  Even feel normal.  There are the stolen moments during those days, when seeming, acting and feeling normal is simply not possible; moments which are generally contained to my alone time.

And then there are days like today.  Days when I am physically ill with the weight of my grief.  When I don't even realize I have been crying until I feel the tears drying on my face.  When I walk about in a daze, unable to understand the beautiful day around me when it feels like my entire world is gone.

Days like Quinn's first anniversary in heaven.

August 9th, 2013 was not the worst day of my life.  For 17 hours and 7 minutes of the 24 that comprised that day, Quinn was here.  In my arms.  Wrapped to me.  Even grabbing my arm with the teeny bit of energy that she had left.  For 71% of that day, I heard her breath and felt her heartbeat.  I snuggled her body and sang Twinkle Twinkle Little Star.  I bathed her and clothed her and medicated her so things were tolerable - for her and for me.

It was the remaining 6 hours and 53 minutes of August 9th, 2013, and every succeeding day that now comprise 'the worst day(s) of my life'.  

August 10th, when I broke down in a random jewelry store after learning they may not be able to fix my mommy necklace immediately. (They did.)  

August 11th, when Brett and I left the boys with my mom and my sister so we could go to the funeral home and make the absolute final arrangements for Quinn's life.

August 12th, when we hosted our daughter's final fete - an unbelievably well-attended wake.

August 13th, when we saw her face for the last time, and laid her to rest.

November 11th, when I had to turn 35 going backwards to two children, from three on my 34th birthday.

December 25th, when Santa Claus only left four piles under our tree instead of five.

May 16th, when we 'celebrated' Quinn's birthday - at her cemetery plot instead of at a bounce house.

July 23rd, when 17 of us went on a family vacation built for 18 of us two years prior.


Every Wednesday, when I could run the boys to swim lessons without worrying about Quinn's feeding or napping schedule; 

Every Saturday when soccer practice and art class was not further complicated by dragging an almost 2 year old out in the snow, sleet and rain; 

Every.Damn.Day that she is no longer here.


When Quinn died, I waited to hear from the other parents who had gone before us to this unholy land - waited for the sage advice, the tips and tricks on how to manage what was left of our life.  And I received what was simultaneously the most sound and most heartbreaking piece of advice:

There is no secret.  It doesn't get better, it just gets different.

One year later, I can confirm the truthfulness.  It does not get better.  And actually sometimes, like today, it does not even get different.  

Life simply goes on, and it takes you with it.  

That is not to say that there are not happy moments.  I am not in deep dark despair 24 hours a day, 7 days a week.  

It is to say, though, that there are no more purely happy moments.  Everything is tinged with sadness.  With the bittersweet notion of "Oh, this is fun!... But we shouldn't be able to do this right now.  I would never do [x,y,z] with a two year old."

I long for her - mentally, emotionally and yes, even physically.  I have found myself, on more than one occasion, standing and swaying for a moment, lost in thought - until I remember that she is no longer on my hip, I no longer have a baby to soothe with the motion.  

The boys have been sweet and allowed me to pick them up and hold them far more often than a 5 and 6 year old really want to be held by mom.  And I take any opportunity I can to pick up someone else's baby or toddler and swoop them right into the same position I held Quinn - legs wrapped around my right hip, facing out to the world.  

I'm still not sure what I believe about what's after this world.  But if I can put in my order for one single thing whenever I do get there, it's to have her back in her rightful place - on my hip, and in my arms.







Friday, May 16, 2014

Happy 2nd Birthday, Sweet Girl

Quinny,

You have not left my thoughts for more than a nanosecond since you left my arms more than nine months ago.  I wish I had been wrong when I wrote your first birthday letter, but I knew even then that by today, I'd be sending your message to a place without a zip code.

I miss you.  I miss you I miss you Imissyou.  I don't know what more to say because that is what fills my heart.

What I should be doing is planning a birthday party and fighting some other mom for the last Anna and Elsa merchandise on Long Island.  I should be placating Colin and Reid for allowing you to watch Frozen for the 1,804,847th time.  I should be running around stressed about the weather, wondering if it will hold out for your backyard blowout.

Should.  Such a sucky word, always wanting for more than what we have.  But, in this instance, I can't think of a better one, for Quinn, you should be turning two today.  Here.  In this house, in our family, in my arms.

But you're not.  You're celebrating with your new friends, living your new life.  Hopefully you and Wylder get to have separate parties and not have to do the joint party thing.  I'm pretty sure they allow two parties in a row in heaven.

And since you're not, I'm not.  So instead of planning your birthday party, daddy and I and some other people who love you so much have been planning how to honor you in the biggest and best way.  

And so today, on your second birthday sweet girl, we mark the start of something new, something great, something that will be tremendous.

We launch Quinn Madeleine Inc.  


visit us at www.quinnmadeleine.org
follow us on Facebook at facebook.com/quinnmadeleineinc
follow us on Twitter @quinnmadinc #GetYourQuinnOn
follow us on Instagram @quinnmadinc
We will use your name, use your image, use your spirit to inspire as many people as we can to help us help other babies just like you, Quinn.

Babies who won't live to see their 2nd or third birthdays - and even some who won't live to see their first.  Sweet children under the age of three who have been slammed with the same fate - though the name of the disease may be different, the fate is the same.  The incredible memories we were so fortunate as to create with you, we will help these families make.

And babies who are just like you, who have not even been born yet, whose parents are blissfully unaware of the horror that lays ahead of them when they too will be told their child has Niemann-Pick Disease, Type A.  We'll be working to make sure as few of them as possible are told to go home and love their child, and instead are told about an amazing new advance in treatment - and one day, a cure.

So, sweet girl, we can't be together.  Not for a long time.  But we also can't be apart.  We're intrinsically linked, you and I - now moreso than ever.  

And I wouldn't have it any other way.

I love you so much.  Thank you for picking me to be your mommy!






Thursday, May 1, 2014

Go

Since the moment Quinn died, I have had an insatiable need to be outside, and an unquenchable thirst to just Go.  

Quinn loved the outside - the breeze on her face was literally her happiest time.  We spent a lot of her life trying to attain it for her - many many trips to the beach, to the park, to the deck in our backyard.  Early morning of the day she died, I wrapped her to me and Brett and I took her outside, to her happy place.  I truly believed that it would be where she would pass.  But little miss had more fight left in her than we thought, hanging on for literally 12 hours more.

I spent much of Quinn's life in a sedentary state, as I basically bore another appendage (cute as she was) by the name of Quinn.  When I wasn't carrying her, I was often holding her in her power hour.  Or hustling her many loads of laundry to and from her room.  Or setting up her feeds.  Or thinking about setting up her feeds.  Or meds.  Or any number of things she needed.  But none of this required much of me physically.  When she died, that was the most jarring change - this idea that I could do ... whatever.  

For better or worse, it didn't last long since my diagnosis came on the heels of her death.

For eight months more, I was relegated to the sidelines.  Wanting again to get outside, to just Go.  But a double mastectomy and four months of chemo kicked my ass enough to push any notion of that aside.

Until now.  Today.  I had my final reconstruction surgery last Friday.  I got the drains out today.  And, except for the Tamoxifen I have to take daily for the next ten years, my cancer treatments are over.

Done.

And I can... Go.  And be outside - just in time for the torrential downpour this morning to turn into precisely what May 1 should be - gorgeous, warm and sunny.  With, of course, a slight breeze ;)

I abandoned this blog for the most part during the course of my treatment.  I was never really sure how to intimate that the breast cancer just wasn't me.  It was a terrible nuisance, to be sure.  And very hard at times - at least twice during chemo Brett and I had serious discussions about just stopping it because of the severity of my body's response to the ACT.  But, I have learned that I Can Do Hard Things.  (For those of you unfamiliar with Glennon Doyle Melton and her blog Momastery, check it out.  She has all sorts of these should-be-obvious but most-women-fail-to-recognize truths.)  And quite literally the last thing I wanted to do - on the blog or in real life - was whine.  

What I went through was a blip.  A big fat pain in the ass blip. It is nothing in comparison to what others in my life have gone through and are going through - with breast cancer, and with cancer in general.  

And it hardly registers compared to what we will forever go through with the loss of Quinn, and what she handled in her short life.  

Because my cancer has an end date.  Today.  Quinn's loss continues on forever.  

It wasn't all terrible, the last eight months.  There were a number of highlights, especially during the month of April.  

Brett and I got away to Mexico.  By ourselves.  For.A.Week!!  (My mom is getting the best Christmas present EVER this year.)





The weekend after we came back, we were away again - this time with the boys.  To Boston we went for what can only be described as an indescribable weekend with the Genzyme Running for Rare Diseases team - including my old college friend Kai - for the Boston Marathon.  I am still processing what the weekend meant to us, and based on the blog entries for the RFRD blog, so is everyone else.  The people we connected with are truly amazing and inspiring beyond words.  And I'm always a sucker for a marathon - I cry even when I don't know anyone running so imagine how well I did when I was asked to speak at the dinner about what the experience meant to us haha.  We raised almost $4800 in Kai and Quinn's name for NORD, who will use it and the rest of the $120k raised by the RFRD team this year to establish a family support fund for undiagnosed patients.

pre-race breakfast with the team
this, believe it or not, is their best attempt at "smile!"
Kai hugging Reid when she saw us at mile 14

Phil, who ran for another of our babies - Wylder James <3
off-center photo of the entire RFRD team, on their way to Hopkinton
not really fair to look this beautiful after running a marathon!
Quinn has been honored in a number of other ways this month, too.  Sticking with the college connection, a number of my college friends got together and donated a beautiful rocker to Nunley's Carousel (where Quinn had her first birthday party!) in her name.

my niece was home from college and went with us to check it out :)

A team of beautiful ladies from my book club walked with the March of Dimes in Quinn's honor to raise money for that organization.  That same book club has donated a bench to our local public library with a plaque for Quinn, which will be placed this weekend.

And, a song written for Quinn by Danny Weinkauf of They Might Be Giants was published on his first solo album - a children's album titled "No School Today" (which, by the way, is fab-u-lous!).  The final track is called Lullaby for Quinn and is so sweet!!!  You can purchase the cd or download on Amazon or download it from the iTunes store.  And, as part of the KickStarter project for this cd, we had the opportunity to have Quinn's picture added to the video created for the super fun song "Marsupial".  Look for our special guest at 1:46 (bottom left) and 2:01 (second from left).  

rocking out to Lullaby for Quinn in the minivan

I know, I know - how freaking cool, right?!  (And don't blame me when you're walking around all day singing "I am I am I am I am I'm a marsupial".  We were lucky enough to have gotten the cd early so I've been singing this for weeks ;) )

We got big confirmation (or rather, a big sign from our girl) today after I returned home from the doctor's that we're heading in the right direction.  We have a tremendous project that has been worked on for MONTHS that finally got the green light today.  I hope to be able to share full details on that soon, because this is my true Go moment.  The thing that's going to take me from this point to the rest of my life.

#tbt almost one year ago today
a blurry mess of goodness (also 1 year ago)


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.

smoosh
taking it in
laughing 
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 :)

bedhead

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