J-E-T-S

As we are long-suffering Mets fans, so are we longer suffering Jets fans. (We like the underdog, what can I say?). Every Sunday, September to December (and January, too if we're reeeeally lucky), we hope against hope and tune in to watch Gang Green.

It has become almost ritualistic at this point, as any football fan will tell you, and we were so excited to get to share this tradition with Quinn ... Live and In Person!

Uncle John had tickets to the game against the 49ers that he so graciously gave to us. While the prospect of the drive to Jersey and hanging with the Jets fan regulars with three little people was an intimidating proposition, New and Improved Brett and Eileen shunned all logic and proceeded to pack up tailgating supplies and all three kids amidst nap time and brave the GW to get to the stadium.

After all, Quinn had spawned a walk-off win for the Mets a mere 7 days prior. Surely her very presence would produce similar results for the Jets. Right?

Um yeah, not so much. Nada. That's what the Jets scored; thirty-four (that's 3-4) is what the Niners scored.

Ouch.

(We actually came to find out the next day that this constituted the third worst loss in Jets history. Hey - if you're going to lose, may as well make it memorable, right?)

hilarious meme I saw the day after the game
(credit: twitter.com/JetsMemes)

Despite this most unfortunate outcome, we had a ton of fun! Quinn and the boys had their first tailgating experience (Linzer-style - complete with shrimp, quinoa salad and Oktoberfest for mommy and daddy. In our defense, we did have hot dogs too!). The boys were very impressed with cooking, eating and throwing a football in a parking lot and Quinn garnered a number of "Now that's dedication" comments.

horray!

sleepy Quinn, covered with daddy's Santana Moss jersey

The seats were awesome and this was actually my first game at the new stadium. What an improvement!

Now if only we could get MetLife to design the team...

uncle John's great seats

admittedly we forgot Quinn's new Jets hat at home
(see pretty pink hat above).  This pic was taken later.

Quinn's Ideaman: uncle John

Quinn's Wing(wo)men: mommy, daddy, Colin, Reid

It's a Beautiful Day in the Neighborhood

Four and a half years ago, Brett and I made the decision that it was time to move to the 'burbs.  It took three lost houses and a year and a half of looking before we found our house.  

The house is adorable.  Built in 1922, it has a ton of charm and very little room.  The previous owners opened up the walls on the first floor, and we redid the basement last year, but the bedrooms.  Oh the bedrooms.  Teeny tiny bedrooms.  So we bought the house with the thought that within five years we'd either do construction (if you've ever been to western Nassau county, you know there's not really a lot of room to expand) or buy a new house within the same school district.

Then we met our neighbors.  One by one, we made newer and better friends.  We calculated that within the nine houses on our direct block alone, there were 13 children age seven and under.  New traditions started as we traded hosting duties for the holiday cocktail party, enjoyed Girls Nights Out and began what we hope to be an annual block party.  Brett and I knew we were destined for permit fights, contractor woes and months of "slumber parties" with the kids in the basement, construction being the only option.  Moving our family away from this street could be defined only as an act of cruelty.

We've been here less than three years.  That's less than 1/11th of our lifetime.  So, not a terribly long time. And we have known we're so lucky to have such great people around. But really, we had no idea.  Seriously.  NO. IDEA.

Today, our neighbors held a garage sale in honor of Quinn, to raise funds to help with her list.  The original intent was a low-key neighbor garage sale that we would learn about afterwards.  What happened was what happens when you live in an amazing town. The garage sale went viral.  A friend of a friend contacted our local Patch, where an article was written.  The PTA presidents of all three elementary schools, two middle schools and the high school wanted to take part.  The mayor's office called.  Little boys rode bicycles over to offer up old toys they wanted Quinn to have.  A neighbor we have never met brought a $100 bill that was given to her to spend when her cancer went into remission.  Her cancer is in remission. She wants Quinn to have her lucky $100 bill.

People are amazing.  INCREDIBLE.  The amount raised today was enough to substantially fund Quinn's Disney to do.   

So Mr. Rogers, hats off.  You were right.  

I have always wanted to have a neighbor just like you, 

I've always wanted to live in a neighborhood, with you

Michelle. Candace. Lauren. Janessa. Therese. Maria. Nicole. Marie.

Lynbrook, U.S.A.

Thank you.  A million (trillion) times, thank you.

"Our Sonny Life"

Because NPA is so incredibly rare, there is very little information to be found - even in the medical literature, to which I have direct access.  The only place we really were able to turn were the blogs of those children who have come before Quinn - Kaitlyn. Wylder. Faith & Riley. Jacob. Mia.  

And Trek.  

Each family had their own story, their own way of handling any parent's worst nightmare.  And one of the most awe inspiring is the story that the Ingrams have to tell.  

Trek Atlas Ingram, like Quinn, was born into a family of two big brothers (Peyton and Conner) and two parents (Chelsea and Jarrett).  And also like Quinn, Trek had Niemann-Pick Disease, Type A.  Trek's family took him on a most amazing journey - literally!  He received four stamps on his passport before ultimately - and peacefully - succumbing to NPA in Thailand, where his family currently resides.  

I am so sad that I never got to meet Trek.  But I talk to Quinn about him.  A lot.  I tell her that Trek and all the other children will help her when she's ready.  That she has friends who are playing together now and with whom she will play until mommy and daddy can be with her again once her time here has ended.

Chelsea and her family have been an awesome source of comfort, inspiration and support since we first 'met' just about a month ago.  And true to her nature, Chelsea wanted to introduce our family and our story to her readers and supporters that have helped them during this most unfortunate journey.  Thanks to modern technology, Chelsea conducted an interview over email and published it on her blog this morning.  Now, mind you, Chelsea and Jarrett are also in the throes of final edits on the forthcoming book Following After Trek.  And raising two boys.  And grieving for their son, who lost his battle less than four months ago.  And somehow, someway, she has made the time and effort to reach out to us, to share our story, to ask me how I am doing.  She is truly amazing and we are already so much better for knowing Chelsea and her brave, amazing, loving family.

Please visit Our Sonny Life and learn about Trek and his wonderful family.  Jarrett's book comes out next month - I'll post here and let you all know when it's available for purchase!

Ya Gotta Believe

A few weeks ago, Quinn ticked a family tradition off her List - enduring enjoying a Mets game!

We are long suffering fans of the NY Mets and try as we might, we simply cannot shake the habit of rooting for them. Every win is that much sweeter, right? My side of the family is enormous and in years past we had big family Mets games (I'm talking a block of 100 tickets!). It was so much fun and is a big part of the collective memory of our family. So it was no surprise when a Mets game showed up a number of times in the suggestions we received - including mommy's and daddy's!

My cousin Chris(topher) was awesome handling all of the arrangements and in only 10 days had gathered a group of 25 to chaperone Miss Quinn, lest she get too rowdy.

some of those charged with keeping Quinn in line

The whole group (+ uncle John - a fan of the Yankees, or "the bad guys" as they're known in my house) met at McFadden's before the game to fill up and mosey on in together.

daddy and Quinn, pre-gaming at McFaddens

The day was beautiful and it's so much fun to be at CitiField. Aunt Kathy lavished candy and loads of fun activities on Colin and Reid and everyone paid them so much attention that I think they were having withdrawal for days afterward.

an oh-so happy Reid, wearing cousin Katelyn's ice cream helmet

Quinn scored a 'First Mets Game' certificate, snagged by our friends the Hortons (whose son Gabriel also attended his first Mets game that day and is 9days Quinn's senior). And - this was so cool - they even put her name on the board!!

welcome Quinn!

It was a ton of fun and it was a great game! Walk-off base hit by Ruben Tejada capped off the day.

daddy, mommy and Quinn - Let's Go Mets!

thanks Tejada!
(photo credit: http://metsmerizedonline.com/2012/09/tejada-comes-through-in-the-ninth-in-mets-3-2-win.html)

Hey, ya gotta believe, right ;)

Special thanks to all those who made completing this list item so special!

Quinn's Idea(wo)men: cousin Brian, cousin Colleen, cousin Chris, mommy, daddy

Quinn's Wing(wo)men: cousin Chris, Ashley, aunt Anne, aunt Kathy, uncle Kevin, cousin Kelly, Steve, cousin Katelyn, Patryck, cousin Sean, cousin Meghan, cousin Erin, aunt Colleen, uncle Gerry, cousin Allison, cousin Billy, uncle Tommy, aunt Elaine, Nanny, cousin Erin, Rob, Crystal, uncle John, Dave, Allison, Charlie, Gabriel, mommy, daddy, Colin and Reid

Hey, Soul Sister

Quinn was the product of some serious negotiations.  Brett was content with two kids.  I love the boys tremendously but felt like our family just wasn't quite complete yet.  We talked, I relinquished some responsibilities at work, we talked some more, we compromised.  And so was created my little Soul Sister. 

As with Colin and Reid, we opted not to find out Quinn's gender until she arrived in the world.  I had a suspicion my entire pregnancy that she was, in fact, a She but kept thinking that couldn't be true - we make boys!  Plus I was scared of girls.  I remember how ahem, pleasant I was from the ages of 10-18.  I was also rebelling against the ridiculous notion that was so often professed by complete strangers - that we "went for the girl" with this third pregnancy, as if my boys weren't quite what we wanted - being boys.  Utter stupidity.  

When Quinn was born, my OB announced "you have a Female!" and proceeded to bring her around the curtain of sterility to prove it.  And a female she was.

welcome, baby girl! 

still in the hospital - got into the girl thing pretty quickly!

Quinn's swallow issues started immediately so literally from birth, she was in my arms 24hours a day.  She and I lived in a corner of the sectional in our living room where she ate and slept on my chest every day and night for the first 7 weeks of her life.  It was difficult recovering from my c-section and trying to rule over a 2.5 and 4 year old from my perch there, but it also made for some incredible bonding time, for which I am especially thankful now.

Quinn is a happy baby - she readily smiles, she's beginning even to squeal!, she manages to get herself pretty comfy in most everyone's arms.  But I am (not-so-)secretly thrilled to admit that she does have a special sort of excitement when she hears my voice or sees me come into a room.  

one of my new favorite videos

mommy and quinn

The feeling is mutual ;)

And while I'm fairly certain Train was not thinking of mommy and daughter when they recorded "Hey, Soul Sister", it has become our Anthem, me and Quinn.  The words (almost) exactly match how I feel about this amazing little girl.  The almost referring to perhaps "You're so gangsta, I'm so thug".  Really, it's the other way around.  

(Oh, and "my untrimmed chest".  That doesn't quite jive either.)

I knew I wouldn't forget you
And so I went and let you blow my mind

Num num num

Something that was notably absent from Quinn's List were foodie additions.  That was because it was the one restriction we put on our request - nothing to do with food because Quinn has a very severe swallowing issue.


Well, today Quinn said "Screw THAT!".

Miss Q had her first food.  And none of that baby food stuff either.  A sweet potato.  A FOR REAL sweet potato.  And she did great!  

Her wonderful feeding therapist was very supportive of us trying out solids, largely because Quinn's issues center mainly around thin liquids so thicker=better.  The FT was also happy to oblige when I tearfully requested we skip over baby cereals and baby foods and go right to the real thing.  This is going to be fleeting so if we can offer Quinn the opportunity to eat real food for however long we can, all the better.

Below is a video of her first couple of spoonfuls.  

So proud :)

Quinn's first food

and a still shot too :)

Quinn's List

Once we made our decision to concentrate on palliative care rather than attempting a stem cell transplant for Quinn, we were on a mission.  A mission to give her as wonderFULL a life as we could possibly give her.  

To do so, we reached out to our families and our very closest friends and asked them to come up with things that everyone should do in their lifetime.  Quinn's adventures will be catalogued here on the blog - credit to those who came up with the ideas! - so that everyone can 'participate' in her fun.

So without further adieu, below is Quinn's List (in no particular order).

**bold items were completed, blog post pending**

Every girl should wear a wedding gown
Every American should vote
Every American should visit our nation's Capitol
Every little girl should dance with her daddy
Every girl should get a manicure/pedicure
Every little girl should visit the American Girl Doll store
Every child should visit FAO Schwartz
Every little girl should have a slumber party
Every little girl should dress up like a princess
Every Linzer child should visit Maine on a family trip
Everyone should watch a sunrise
Everyone should star gaze
Everyone should swim with dolphins
Everyone should admire art at The Met
Every Long Islander should see the Big Duck in Flanders
Every little girl should host a tea party
Everyone should play with (and get licked by) a puppy
Everyone should go to a baseball game
Everyone should go to a football game
Everyone should visit the zoo
Everyone should be kissed by a butterfly
Every child should go pumpkin picking
Every child should sit on Santa's lap
Every child should play in the snow
Every child should go apple picking
Everyone should ride a horse
Everyone should do Disney
Everyone should dip their toes in the ocean
Every child should play in the sand and build sand castles
Every child should splash in a puddle 
Every child should jump in a pile of leaves
Everyone should watch the chefs at Inatome
Every child should go to the circus
Everyone should experience a sunset on the beach
Everyone should feel the wind on their face at the top of the Empire State Building
Every child should dress up for Halloween
Every child should fly a kite
Everyone should drive a car
Everyone should ride in a convertible
Everyone should experience a Circle Line Cruise
Every child should visit the Land of Make Believe
Every child should ride on the Nunley's carousel
Every child should play peek-a-boo
Everyone should have a picnic in Central Park
Every child should swing on a swing and slide down a slide
Every little girl should have Tea at the Plaza hotel
Every girl should have her ears pierced
Everyone should do the polar plunge on new year's day

Everyone should LOVE and BE LOVED as much as possible, each and every day