Happy Birthday, Baby Girl

Quinn had a fan-tabulous birthday party on Saturday at an historical carousel in our area, where I (and my siblings, mom, aunts, uncles, cousins, friends... basically everyone I know) used to go as a kid.  More to come on the party itself later - we're still gathering photos from the party, and still have celebrations to come :)

Despite the proclamation on the invites - "Your presence is Quinn's present" - our overly generous family and friends showered her with beautiful, thoughtful gifts.  The most incredible was a special project created by my best friend of 28 years (?!?!) - a book of beautiful letters from so many of our family and friends, to Quinn on her First Birthday.  It is something I will treasure forever.

And in its spirit, I wanted to write and share my letter to Quinn on this, her First Birthday.


Dear Quinn(y),

It's hard to write to you, right now, on your First Birthday.  My instinct is to bemoan all the things you'll miss, curse what ails you, and rage against the unfairness of it all.  But what you'll be cheated of is not for now.  Now is for what you have incredibly managed to do thus far.

The whole time you were in my belly, I knew you were a girl.  I'd deny it, even to myself, because admitting what I thought would be recognizing that I yearned for you.  For someone to share mani-pedis with, to dress in pretty dresses, to teach about boys and their silliness and girls and their strength, to spar with during your teenage years, to befriend in your adult years.  

And then you were given to me.  "You have a Female" was the announcement.  And my first action as your official mama was to apologize for ever thinking I didn't want a girl in the first place.

Recounting your medical concerns and everything you have managed to overcome in such a short time, in such a tiny body, seems bad form on such a celebratory day.  Instead, it's your spirit I'd rather capture.  The spirit of a 13-year old trapped in this teeny baby body.  You give the world's best diva looks, shortly before (or after) rocking the world's most amazing, engaging smiles - both of which equally melt my heart.

You have elevated me, and everyone else around you, to a new and better plane.  Your simple presence - and eminent wisdom behind those wide blue eyes - make us all better people.  I have been told stories upon stories of how you - you tiny little thing - have inspired people to become better parents, better spouses, better friends.  Better People.  How you and your strength are lending strength to a woman who has recently lost everything - her home, her husband.  You, Baby Girl, help her get out of bed in the morning.  And she hasn't even met you.

That may be one of my favorite things to do with you.  Introducing you to people who have heard of the famous Quinn Linzer, but who haven't previously met you.  How you manage to surprise - no, shock - them every time.  How they hear of this "poor, sick little baby" and expect to basically find a blob in cute human form.  And then there you are, with your grins, your bored looks, your playful demeanor, your old soul.  And they are astounded.  And I swear we both giggle a little bit on the inside, complete with a shared knowing look.  They should be astounded.  You're pretty freaking amazing.

A First Birthday letter should contain promises of what's to come, mention all the fun things expected in the next year.  Sweet baby, I can make no such promises.  This will, very likely, be the only birthday letter I get to write to you while you are here, sleeping right above me.

What I can promise is that we're going to continue treasuring you, every single minute - every single second - we get with you.  We're going to laugh with you and stand on our heads to make sure you laugh with us.  And we're going to love you - we're going to love the hell out of you, Little Girl.  Because you deserve nothing less, and so much more.

So like I end every night laying with you in your bed, I will close this letter.

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

Happy Birthday, Baby Girl!

I'll love you forever
I'll like you for always
As long as I'm living
My baby you'll be

A Tree Grows in Lynbrook

Two beautiful trees graced our backyard until last Fall.  The first was unfortunately diseased and Brett & co cut it down - thankfully prior to Sandy (it was pretty small but it would have done some damage to the house if it had come down in the winds).  We lost half of the other tree in the Nor'easter that followed two days after Sandy.  What a fun time it was to live on the south shore of Long Island...

our sad little dirt patch

The little tree shaded our (little) deck, so we definitely wanted to replace it, and the idea of planting a tree as a family really appealed to us on a number of levels.  As with everything we seem to do lately, it took on a much more significant meaning than just a fun weekend activity.

So we began researching trees.  Asking those around us with the proverbial green thumb. Observing trees on our street, in the park, and on the parkway.

And the one thing that became clear was that we had some pretty specific requirements.  

In addition to being viable in zone 7 (apparently our zone - thank you Google for that information!), the tree needed to be:

Unique

Beautiful

And most importantly, flower in mid-May

See, it's the last request that had people puzzling at us.  The man at the nursery finally said, "uh is there a special reason you need it to bloom in May?"

One Quinn Madeleine Linzer was born on May 16, 2012.  And this tree that we were to plant as a family of five, that is to live in our backyard for many years to come, should come to life and bloom as beautifully as she did during the month of May.

So, YUP!  There is the most special of reasons for it to flower in mid-May.

reasons don't come more special than this!

And without knowing the circumstances, this man led us to the perfect tree.  The Eastern Redbud.

It's fairly unique (most of the flowering trees in our area are some type of cherry blossom or dogwood).

It's really beautiful - the color (a pink that is almost purple - Quinn's color :) ), the shape, and the way the blossoms hang on the tree as though they're on a wire.

what they look like now

what they will look like eventually

It's well-timed - it is May 7th and the buds are getting a bit bigger and stronger, but it has not blossomed yet.  At this point we seem perfectly on target for a mid-May bloom.

And - this was the kicker - the leaves.  After the tree blooms, and the petals have all fallen to the ground, it was the leaves that truly assured us we had our tree.  Every leaf, per the man who knew nothing of why we wanted this tree, will be in the shape of a perfect heart.

<3
(photo credit: extension.iastate.edu)

We bought the tree and planted it, as a family, on Sunday.  Looking forward to many blooms - and leaves - over the coming years.

the Linzer men, prepping the site

showing off her teeth

smiling because she doesn't have to do the grunt work

Daddy finishing the job

view of the tree from inside the kitchen

Eleven Months

Quinn recently turned 11 months.  Eleven months!!!  

With the boys I remember thinking wow, that really went fast - how exciting!!

With Quinn I keep thinking wow, that really went fast - this sucks!

happy birthday kisses from Colin <3

But not to Quinn.  Nope - in true Quinn fashion, she did up her 11 month birthday in style.  We celebrated with not one, not two, but three different bashes!

After her regular Feeding Therapy session, we packed up finger sandwiches, a box of tea and some special decorations courtesy of andreap|designs and flitted off to Quinn's great-great aunt Shirley and great-great uncle Murray's house so she may host her very first Tea Party.

(It's right - I counted twice to make sure I had the correct number of 'greats'!!)

We were also joined by GiGi (great-grandma Rae) and Grandma.  We had sandwiches of cucumber & hummus, tuna & arugula, chicken salad & craisins, cream cheese & jelly...  We had yummy tea... We had a delicious chocolate cake, provided by our venue hosts - aunt Shirley and uncle Murray.  And a lovely time was had by all - which is just about the highest praise for a tea party, of course!  

super cute banner made by andreap|designs

the table is set

dessert.  yum!!

Quinn always has the perfect dress for the occasion!

having so much fun!!

After a (not-so) quick exchange of car seats, Grandma was off to pick up Colin & Reid at school and Quinn and I were headed to aunt Michele and uncle Ricky's house for a super special ceremony.  

Quinn became ...

...wait for it...

...a Brownie!!!!  I always wanted to be a Brownie, but they weren't doing it in our area back then for some reason (or so my mom says lol).  A friend of my sister-in-law's contacted her to see if we would be interested and we (I) definitely were (was).  The original plan was to have Quinn come to a regularly scheduled Brownie meeting back in the beginning of April.  But then that pesky flu cropped up, and Quinn's hospital stay, and everything was put on hold.  I was so glad to have a second shot, and this one probably worked out for the better.  Six adorable little Brownies were waiting with their moms at my brother and sister-in-law's house for us to indoctrinate Quinn into the age-old tradition of the Girl Scouts.  She looked adorable, and all these little girls and their moms did was so touching.  They even went to Build a Bear together to create a special Girl Scout bear just for Quinn <3

she even wore the beenie :)

with the whole troop, plus cousin Katie and aunt Michele

the world's cutest Brownie!!

But that was not all.  Oh no - that was not all.

The Brownie meeting was set up to coincide with our trip out to the island for Quinn's first concert!!  My very talented niece Katie was competing in an American Idol-type competition at her high school and she asked Quinn to come see her sing for her very first concert.  (I was a mere add on.  It's ok - I'm used to being her chauffeur; it gets me into some very cool places!)

Katie.was.AWESOME!!!  There were 14 students and only 7 made it into the second round - she was one of them :)  Only three advanced to the finals and unfortunately that didn't include Katie (though truth be told, I think she was gypped - but that's neither here nor there, I suppose haha).  But it was so much fun and apparently the entire high school had been apprised of Quinn's impending presence.  At intermission we were surrounded by about 20+ kids - seriously.  Maybe more.  They kept swapping - someone would leave and a new one would pop in their place.  We also got to meet my niece's (in)famous best friend and my nephew's adorable girlfriend - it was really a fun, fun day and a great way to spend an 11(mon)th birthday :)

screenshot of the video of Katie singing Love the Way You Lie

What ensued the following two weeks was not so much.  That night, Quinn was up all night long with a very high fever.  I took her to the pediatrician the next day to get her checked out.  She had a double ear infection, which accounted for the fever.  But, as with every doctor's appointment Quinn has, her lungs were checked.  And the dreaded news was delivered.

We had a crackle.

It was localized to the upper left lobe. The ped even gave me the stethoscope and let me hear where it was, and where it wasn't.

There was no question, even to me.

This is quite literally some of the worst news an NPA child can hear.  And to hear it now, at 11 months, is just awful.  

So home we went, Augmentin in hand, all forthcoming plans cancelled (DC trip, NYPD Harbor Seals boat ride, playdates - the works).  Quinn, for better or worse, did not seem to register the additional stress the pneumonia was putting on her little tiny body.  Once the ear discomfort was cleared up, she was basically back to her old self.  Which is great.  

And not so great.  Her body is so ravaged that pneumonia - pneu-mon-IA - isn't much different from how she normally feels.  That's just a bunch of bullshit right there.

I am happy to report that the Augmentin has seemed to work. Her lungs were clear when we returned to the doctor last week, which is fantastic news.  But we know.  We know that every thing that Quinn goes through takes a little more out of her.  And at a whopping 14lbs, 8oz (approximately 20-25% of which is now estimated to be her abdominal mass), she doesn't have much left in reserve.  

But we're getting what we wanted - within our current context.  From day 1 both Brett and I made our hopes and wishes clear.  We would rather see her physically frail but mentally sound right up until the end.  And we have it - Quinn is so very much a one year old.  And for that we are very grateful.  

Silver linings, right?

BFFs

Frick y Frack

Today is Trek Day!  

On April 11, 2011 Trek Atlas Ingram was born in his driveway to Chelsea and Jarrett, and big brothers Peyton and Conner.  An incredible baby that led his family to take a most amazing journey, Trek passed away from Niemann-Pick Type A in Thailand on June 21, 2012.  Today would have been his second birthday.

beautiful Trek on his first birthday
(photo from Our Sonny Life.com)

In honor of his birthday, Trek's mama Chelsea asked her friends and supporters to do something to celebrate their children today.  

The boys were informed of Trek Day yesterday.  Colin - ever inquisitive - did ask what it was.  I told him that Trek was an amazingly special little boy who is no longer with us, and we are to celebrate his life on Trek Day.  That (thankfully!) was enough of a response.  

Today, they each had an oreo with breakfast.  I picked them up about 45 minutes early from school so we could go get frozen yogurt.  Then they had their choice of dinner (is there really ever a choice when you're 3 and 5?  I think not; McDonald's it was).  We came home to eat, had an early bath and then did Mommy Night Movie Night (The Brave Little Toaster to the Rescue was on order tonight).  And finally we ended the day with an extra story - "because it's a special day, right mommy?".

fro-yo after school.  good thing this 'celebrating' isn't all the time -
their choices of celebrating adds an automatic 10lbs on mommy!

We had so much fun - they each even said "Happy Trek Day!" when they were going to sleep <3

Then I got to realizing that in trying to protect their privacy - whatever it may be at this age - I haven't really celebrated them much on the blog.  

I haven't discussed Colin's incredible individualistic attitude - how he does what he likes and doesn't seem to have a care in the world what "everyone else is doing". (I sooooo hope it stays this way!!) I haven't talked much about Reid's ridiculous comedic timing, apparent from the time he was speaking in full sentences at 18 months.

this would definitely qualify as "individual", I think

the best description of Reid I've heard is
"the kid who will burn your house down,
but smile at you while he's doing it"

Not really a word about the adoration they have for one another, for our family, or for their little sister.  About how unbelievably selfless they are when it comes to Quinn.  Quinn's special needs.  Quinn's bajillion presents that show up at our house.  Quinn taking mommy and daddy away on an all-too-often basis.

They simply accept it as it is and celebrate her as much as we do.  Colin all but accosted some of the neighbor kids to tell them that his sister was eating food.  REAL food.  (They were suitably unimpressed.)

I've mentioned only in passing how their inane questions, their ridiculous (age-appropriate) tantrums, their knack for knowing just quite what we don't have time for - and then doing that very thing.  How all of that is really the only reason we're still standing.  The only reason we're not in that ditch we (I?) ever so often fantasize about, the corner of that couch in fetal position. 

They make navigating these circumstances infinitely harder. 

Surviving these circumstances would be entirely impossible without them.

They are best friends with each other, and best friends with us.  Colin is the Original Big Brother - he watches out for Reid and Quinn in the sweet way only a five year old can.  He 'explains' the world to Reid, and makes sure no small toys enter Quinn's universe for fear of choking.  Reid has taken his dual role as Big and Little brother very seriously.  He is the kid who bursts into tears as he enters the kitchen as I'm taking Quinn out of the bath because he just spent the past 10 minutes (while she was in the bath) gathering up all of his Umi Zoomi bath toys so Quinny can play with them.  

seen in the monitor while in the kitchen making lunch.
yeah - that's Reid.  IN her crib haha

I worry about them in every way every mother does.  How will they fare when they get to 'real' school? Are the other kids nice to them?  Will he be able to keep up with the other kids in math/reading/tee ball?

And I worry about them in all the ways no mother should.  How will they fare when Quinn is nearing the end at home?  Is someone else going to accidentally say something to tip them off to our future?  Will they be able to ever get over this?

Will they remember her?

But today was not a day for worry, it was a day for love.  And love we did.  Lots of hugs and kisses (and lots of tackles for group hugs and kisses :) ).

Thank you Ingrams - once again you have helped us remember to step back and Embrace Life.

Happy Trek Day!

that's Colin under there
(excuse me, Super-Spider-Colin)

just another Target trip

There's No I in Crazy

Another weekend, another hospital trip for Quinn.

Following the week from hell in our house - very high fevers in all three kids, a few pediatrician visits and some antibiotics for Quinn to resolve an ear infection - on Easter Sunday morning Quinn had 2 bloody stools.  Our horrid scare from early February too fresh in our minds, Brett and I shuttled the boys off to my mom's to have some semblance of an Easter and ran Quinn to the ER.  While there, her oxygen levels were low - upper 80's, low 90's - so we began blow-by oxygen.  She mainly self-corrected but the oxygen gave her a quick pick-me-up so we kept administering it as necessary.  

Against our better judgment, and for a lack of a medical professional to back us up, we allowed them to admit Quinn for observation.  Quinn was incredibly congested, leading her to desat (lower oxygen numbers).  Although at home we handle her congestion with Benadryl to dry her out, a humidifier to keep her wet and a few pounds on the back to keep her loose the hospital took a far more aggressive approach and put her on oxygen full-time.  

ever resourceful, Quinn turned the o2 tube into a teether

We were insistent that Quinn be released yesterday, after our agreed-to terms of a 24-hour observation.  And we are adults and her parents, and could have acted of our own free will.  But the coercion of the team of physicians effectively scaring the crap out of us led to a decision we knew was wrong at the time, and yet we made it anyway.  We let her stay another night.

At 11:00 last night, a swab - done more on protocol than on hunch in the ER - came back.  Quinn has the flu.  Has had the flu for a week now.  As apparently did Colin.  And actually, probably Reid too (we didn't bring him in to the doctor as his symptoms appeared less severe than the others and we had been told it was just a virus).  

Kind of a big miss.

our life last week.  some spring break!

she does 'pathetic' really well :(

Even outside of this pretty crappy, definitely avoidable situation with the flu, the hospital stay this time was incredibly stressful.  We were made to feel as though we were craaaaazy.  Crazy to want to take a less aggressive approach to the oxygen levels (i.e. treat the source - the congestion, rather than the symptom - the desat-ing).  Crazy to say we had a palliative care team appointment lined up for Tuesday and that was the most important thing to us.  Crazy to say we want to take her home, the hospital really is no place for a sick baby to get well.

Crazy to continually insist that Quinn's comfort and happiness are paramount to whatever the standard protocol is in situations like these.  In other words, crazy to concentrate on Palliative care.

Though it is sometimes difficult to separate ourselves and objectively view the situation from the perspective of these physicians, we do get it.  

We get that they are deathly afraid of Quinn. That they truly are uncomfortable treating a child entirely in the present tense and not being so concerned with 'later'.  That the overarching theme in Quinn's care in this setting is "Not on my watch!"  

All they are able to see is a terminally ill child.  Not a ten month old with some pretty severe congestion who's really uncomfortable and could use a hand in correcting the source.

Though we barely made it out in time, Quinn was released late Tuesday morning.  I dropped her at home with her newly acquired oxygen paraphernalia to 6 (lol - SIX!!!) people to take care of her at home (Nanny, Grandma, aunt Mary and cousins Megan, Kristin and Erin - with two cameo appearances by daddy) while I made it into the city just four minutes late for the Pall Care Team meeting.

Ever since we decided not to pursue the stem cell transplant we have been ambling about, trying to figure out the best way to handle Quinn's care.  It all seemed so very abstract and early, so there was no real rush - until her crash 2 months ago.  We really started the ball rolling after that, but what we found is there truly is a lack of pediatric palliative care programs in our area.  Like a puppy chasing its tail, we have been running in circles sent from one doctor to another only to be told the best person to speak to is the person we already met with two people before.

Programs are either on hiatus due to lack of demand, or in the very early planning stages as they hadn't been established before.  What we've gleaned from it is that like everything else, Quinn's situation - even in the world of very sick children - is unique and rare.  Most pediatric illnesses go from curative care to hospice care.  There is a way to fight - and when there's a fight to be had, especially when it involves a child, fight you do.  There is even a whole new scope of care - Pediatric Concurrent Care, which allows children to receive Palliative and Hospice care while still pursuing treatment (another awesome advance made possible by the Affordable Health Care Act ... just sayin'!).  Which is great - soooo great!!  But different - soooo different - from Quinn.  It is very hard for people to grasp that there are times when there really is nothing.to.do.

Today, however, I did meet a team of incredible women who focus on just that.  They work with many groups, including the metabolic disorders team (so other children like Quinn - with NPA as well as illnesses like Tay Sachs, Hurler's and PKU).  The team consisted of a physician, a nurse, a social worker, a child life specialist and a chaplain.  And they all wanted to help Quinn.  

All of them.  A whole TEAM of people!!!  

They 'got' our goals.  They asked me for our ideal scenario (within the current context, of course!).  And they said they will be there for us to make sure it happens.

A team of people, assuring me we are NOT crazy.  And that Quinn will live out her life as we wish it to happen.  

A good friend of mine from high school is now a physician, and has reached out a number of times.  Of course, it's about Quinn - how she's doing, how we're doing.  But it's also been in a different vein.  It has been to thank us for opening people's minds to discussions about end of life care.  About how to live out whatever remaining time we have.  That it is NOT a foregone conclusion that you must act within the standard protocol of fight fight fight until the very end before comfort can be considered the primary goal.  

I thanked her for her kind words - she's so intelligent and such a good person so any praise is really meaningful - but I didn't entirely get what she was talking about until these past couple of days.  When she said no one talks about it - she literally meant NO.ONE.  Not even physicians.

So all of you wonderful souls who keep asking "what can we do, I'd like to help" can start here.  Think about yourself.  Think about the fact that not one of us is going to live forever.  And then think about how you would envision living out the remaining time, what your priorities are, what is most important to you.  

And then talk.  Have a dialogue with yourself.  With your family and loved ones.  With your priest, rabbi, counselor.  Talk about what you may want and ask them to think about what they may want, understanding it is ever evolving but ever important.

Do it in honor of Quinn.  That is What You Can Do to Help.

an amazingly peaceful message and image
captured by an incredible woman and friend.
thank you Chelsea - this really gave me peace of mind when I needed it most

M-I-C-K-E-Y M-O-U-S-E

**We want to thank you all - the hundreds upon hundreds of comments, emails, FaceBook messages, packages, cards, calls... literally every possible communication you can imagine... You have all been fantastic and have really helped Brett and I remember the goodness that has shown itself since Quinn's diagnosis.  People.com did refuse to pull the story and comments - and it was picked up in a few other outlets, as it was, but it doesn't matter any longer - we know where our hearts are, and apparently so do the vast majority of people who have heard, and continue to share, Quinn's story.

And, we are still getting through the emails and messages - so my sincerest apologies for the delay!!  I am trying to get back to every one - but phew! it is tough work being Miss Q's press secretary :) **


Brett and I have had a few very untimely trips in our 11+ years together.  Two weeks ago, though, we had the good fortune of have the world's timeliest trip.  Ever.  

Four days following The Ordeal of The Comments, Brett, Colin, Reid, Quinn and I boarded a plane for Florida for a whirlwind Family-Disney-Family extravaganza!!

leavin' on a jet plane

Our first stop was Nana Carney's house.  This woman is a fireball, I have to tell you!  She's 91 (and a HALF!) and we went out to lunch and dinner.  Came home to a "nice cup of tea" and some dessert - at 9:30 at night!  And she was like, ok - I'll let you guys get some sleep.  (Good thing - we were done.  So sad when my 91 year old grandmother can lap us in a day!)

what a difference a year makes! but only in the kids -
Nana still looks ridiculously good!

On our second day of the trip, we headed to the Mecca of all children - Walt Disney World!  (Colin wanted to know why Nana wasn't coming with us haha)  

We spent the next two days and nights having so much fun!!!  We did Magic Kingdom only since we there for just the two days, and to us that is Disney.  

There were lots of rides, lots of food and lots & lots of fun.

arrival at our hotel

captured by Zurg!

the new Dumbo circus tent play area

a little cold weather didn't stop us!

Princess Quinn-ie Mouse

Colin & Quinn making eyes at each other over lunch

tea cups

capped it all off with a ride on It's a Small World :)

We had breakfast at Chef Mickey's - where we were greeted by such a simple yet cool reminder of why we were there.

Linzer, Party of Five

We also had a sweet hostess who asked us what we were 'celebrating' (see above - the ambiguous "Quinn's Personal Triumph" under the Celebrations heading).  Brett and I stumbled and sputtered - the boys directly underfoot - and bless Mabel's heart, she 'got it' pretty quickly.  She announced we had three special children with us that day, and marked them all down for birthdays at the breakfast :)  That meant a song and dance by all the characters (Mickey, Minnie, Goofy, Donald and Pluto) AND - more importantly - a cupcake.  At 8:15am.  LOL.

a kiss from Mickey

celebrating three "birthdays"

Reid is so excited about Pluto!

Some sweet friends also sent us a gift certificate for haircuts at the Barber Shop on Main Street.  The boys got great cuts and a generous dose of pixie dust, which caused Colin to run full speed and jump for a full hour afterwards.  When we finally told him to STOP!, he very earnestly replied that he was trying to fly - after all, he had been doused with pixie dust!

(He will believe in Santa Claus until Reid tells him it's not true)

And Quinn received her first cut, along with the cutest First Haircut Mickey Mouse Ears - so sweet.  And, it was really a great cut for her wild mane!

before...

...and after

Colin's 'do

Reid showing off his pixie dust

On Thursday, we hightailed it out of our hotel to hop on a plane to Miami.  (Ok - we didn't quite hightail it, because that would assume we actually made our Disney bus back to the airport.  Which wouldn't quite be true.  But our luggage did, so at least we didn't have to schlep that in a cab.  Nope - just us and three kids, dopes that we are!).  Regardless of how we got there, we did get to the next leg of the trip with plenty of time to spare - our Disney cruise!  

our ship

(When we made the trip plans four months ago, we had nooooo idea what our life would be like at this point.  Logistically, it just seemed to make the most sense to do something Disney-related but a bit more low-key than a week at the parks.  The Magic Kingdom stop was actually an add on later - how could we be in Florida and not bring her to actual Disney World?!)

We spent the next 3 days / 4 nights on board the Disney Wonder and it was great!  Brett and I are not really cruise people - we like to go to a destination and really get to know it - but it was so perfect for this trip with Quinn and the boys.  We had two pretty small ports (Key West and Castaway Cay - Disney's private island) in addition to Nassau, which we made into a small-port-feel by jumping on a ferry to a private island - Blue Lagoon Island - for swimming with the dolphins!!  

Reid,  fast asleep at dinner - our first night on the ship

Quinn, very much not asleep at dinner - our first night on the ship

out of focus and extremely lovely - look at those smiles!!

a nice relaxing lunch in Key West -
boys played in the sand right in front of us while we ate,
had a refreshing drink and played with Quinn

running on the property of Hemmingway's house

Unfortunately the weather has been chilly in Florida and the Bahamas the past few weeks, so the water was unseasonably cold.  Quinn would have none of it haha.  She was kissed by Andy - our dolphin - but I'm pretty sure she didn't even know it, she was just flipping out because of the cold water.  I sat out with her after the one shot while Brett, Colin and Reid danced with, hugged and kissed the puppy dolphin.  It was really super cool and I'm so glad they got to experience it and Quinn and I got to watch!!  

Quinn is excited to meet the dolphins!!

Colin's first kiss <3

Reid hugging Andy the Dolphin

even Quinn and I were able to get in on the action for a bit :)

hanging with some dolphins can tire a girl out!

The most special port we visited was Disney's Castaway Cay.  We had our own cabana there and it was so wonderful.  Brett and I agreed we could spend an entire vacation right in that little cabana!

now we know where Pluto vacations - Castaway Cay!

the view from our cabana porch (those dots are Colin & Reid)

Reid got the hang of a hammock very quickly!

a true beach baby - she was so content at the cabana

I am so glad that we made the cruise the crux of our trip.  We still got a lot of "Disney" out of it but it allowed us to relax a little bit and not be scrambling through hoards of people, waiting on line for rides for a whole week.

we even got a special meeting with Minnie on board!

Quinn looooooved her!!

aye aye, Captain(s)!

Colin & Reid in the captain's chair

not sure who was more excited for the navigational bridge tour
(yes I am - definitely Brett!)

pirate night on the ship - look at Quinn's face!!! lol

We wound up the trip with a visit to Brett's dad and his wife.  It was very special to have Quinn visit since it will almost definitely be her only one.  We had a nice relaxing down day our first day with them.  Our last day the boys got to go bowling (both scored a 60, which truth be told, I find very impressive lol) and we all went to Butterfly World!

with Grandpa David

Oh wow - it was really a great place!  It's in Coconut Creek if you're ever in the vicinity (outside Fort Lauderdale and Boca Raton).  Quinn even had a butterfly land on her - you might even say she was Kissed by a Butterfly :)  And the boys - though butterfly-landing-less - did get to feed some really crazy birds, and had a great time doing it!

a gorgeous butterfly couldn't resist Quinn

crazy birds!

smiles at Butterfly World

love everything about this photo!!

It was without a doubt a great trip.  Quinn had a fabulous week - smiles, laughing, truly enjoyed herself - and so did the boys, which in turn made us have a fabulous week as well.

It was also a very emotional week.  I semi-expected it to be, but for what turned out to be the wrong reasons.

I thought all the little girls - in their princess garb, their running to daddy, their little pigtails - I thought they would make me swoon and wish mightly for all the things I am just not going to have with Quinn.  Don't get me wrong - they did, of course - but it wasn't them so much as Quinn herself.

She's so fragile.  So very very very fragile :(  It's still winter weather here in NY, so she's generally bundled up - at least in long pants and shirts.  Outside of a quick bath or change of clothes and diaper, we're not seeing her body very much at any given time.  

While we were away, she was in bathing suits and shorts and tiny rompers.  And she is beautiful - she is SO beautiful.  But she is also so skinny.  And so distended.  

And so sick :(

I had to bathe with her while holding her in the tub because we couldn't bring the baby bath with us and Quinn can't sit up.  It was always after a long day of fun - smiles and leg kicking and lit up eyes.  All followed by a bath where the entire time I felt like I was going to break her every time I moved her. 

And I just kept thinking, 

I want to keep her.  
I just want to keep her.

Because you should be able to keep your baby.

This caused many a late showing for dinner, but thankfully everyone was a good sport and in great spirits.  I managed to catch my breath and we did go on to have a good time, but I would have traded every second of it to be sitting home in NY, cursing the snow and bitching about the following morning's commute - because that would have meant I was able to keep my baby.

Disney

Quinn's Ideawoman: mommy, daddy, Colin & Reid

Quinn's Benefactors: Lynbrook garage sale + A Benefit for Quinn

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


Swimming with the dolphins

Quinn's Ideawoman: mommy

Quinn's Benefactors: Play for Quinn at Le Play Cafe

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


Kissed by a Butterfly

Quinn's Ideawoman: Grandpa & Ann

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