Tuesday, March 19, 2013


**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!

...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.


Quinn's Ideawomanmommy, 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 Ideawomanmommy

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 IdeawomanGrandpa & Ann

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


  1. Glad to hear Quinn and your family enjoyed Disney World. Quinn looks so happy. As a parent you want nothing more than to see your baby happy. Your family are so brave and it is great you are doing all these wonderful things for Quinn. We recently lost our little princess Sienna to NPA. It has been almost 9 months and not a minute goes by without us thinking about her and missing her. We knew we only had a short time with our baby girl so we loved and cherish her every second of the day. We also took her traveling and she enjoyed DIsneyland. The smiles' kisses and cuddles you get from your children are the best gifts in the world. Our thoughts and prayers are with you and your family. King Family from Perth Western Australia.

    1. I am so sorry you lost your sweet Sienna, that breaks my heart. We lost Trek to NPA 9 months ago also, I agree, no minute goes by without missing him. sending you so much love, Chelsea

  2. I know Eileen, you should be able to keep your baby. It's not ok and never will be, I am so so so sorry. sweet baby girl.
    I love all of your disney love, I love how Disney does everything over the top, it makes it all so magical. I am glad Quinn will be firmly planted in those magical memories. The boys looked like they were in little boy heaven, I know they will never forget this time with their sister. On a lighter note, I am totally all about taking a snuggle bath with Quinn:) but if you need a tub, we used the Puj tub with Trek on our travels b/c it packs flat, plus we just loved it b/c it was so easy to put under the sink:)I am IN LOVE with all of the photos, they tell the most beautiful story. so much love from Thailand, Chelsea

  3. I am so glad that you had such a wonderful vacation and made more beautiful memories with your family! I lost my son Alexander at only 21 months - he had cancer, but his death was very unexpected. I WISH I had the chance to make so many of the memories that you are doing with your family! Keep it up and enjoy every MOMENT of it!

    Nancy - mom to Angel Alexander the Great

  4. The article in People is what brought me to the door of your story. I have found it to be to be the most heartbreaking and inspiring story.

    I am not an overly emotional person, but your story envokes so many emotions. Happy tears and sad tears. Her smiles melt my heart, and my heart absolutely breaks that you cannot keep her.

    It inspires me to not take my children for granted. To make each day count, as every day is a gift.

    Much Love from Green Bay, WI

  5. The People article is what brought me to your story as well. My heart breaks for you, Quinn, and your family. I cannot even begin to imagine what you are going through. Quinn is such a beautiful little girl with a contagious smile. Please know that you are in my thoughts daily.


  6. I love looking at all of the magical Disney moments you shared! My favorite picture of all is the last photo of Quinn's big smile!

    Sending lots of love & prayers from the other side of Long Island (Babylon),
    Erin :)

  7. What a beautiful trip full of precious memories for your family. I am so happy you were able to have this time together. Quinn is beautiful. So heartwarming and heartbreaking all at the same time... I wish you could keep her too, Eileen.

    Love, hugs and prayers from Austin, Texas -

  8. I'm so terribly sorry, Eileen. Seeing Joseph naked is distressing for us too (he has just dropped a few pounds below the 2nd percentile line) but you are dealing with so much more besides fragile little limbs. Still, I understand only that little part of it and I really feel crushed for and with you for the rest that I cannot fully understand. I keep praying for you- I believe that the Lord does have a beautiful plan, somehow - that belief is all that sustained me through my days of near-loss and unanswered questions with Joseph. Quinn is such a beautiful little soul - she is touching so many people in spite of and BECAUSE OF this horrible burden she carries. And so are you. May you be given so much joy in these coming months - with strength and peace to get through bath time and all the other challenges you face daily.

  9. Oh, Eileen. I am so happy you all had a great trip and so many sweet photos and memories. Quinn's BeachBaby photo is gorgeous and her awe of Minnie and being a pirate princess are priceless (say that 10 times fast!)....but those last three photos...wow! I just want to reach out and give her a tickle and a hug...and a big hug to you parents. I know we are strangers and far away, but I'm sending a big hug out to you. I wish I could bottle some extra strength and energy to send to you, because I dont know how you do it...you are amazing. You have surely been the best thing those three kids could ever ask for, and it makes both an inspiring and a heartbreaking read. No need to reply to anything I write...just give those three a hug...enjoy that time together.

  10. The photos are so beautiful Eileen!! They really show the love your family has ... And the memories you will have to cherish forever. Disney really does remind us all a dream is a wish your heart makes. I am so sorry that little Quinn is sick, I am just so sorry. I wish I could take your sadness away and that you could just have your family forever. Sending love always, Shannon xoxo

  11. The Dellaconas and so so so many others love you guys. xo

  12. This post makes me so happy for your family. I know you must be aching to think of losing your beautiful daughter...but look at that smile she gives her mama. She loves you so, so much. You are doing the best thing you can. I am so glad to see an update. You are a wonderful mother, and Quinn is so lucky to have you, along with her daddy and big brothers. Sending prayers, love and hugs your way. Quinn is so, so beautiful. xo

  13. The people story also brought me here, but I hate the pain it caused your family. I think what you're doing is amazing and a great idea. because those are the experiences that create lasting memories and even though Quinn won't, you'll always remember. I sat & read every blog post you've made and am in awe of your family's strength. I have a 6 month old, my 1st, and I hug her tighter every day now. I don't usually read comments because they can be so mean, so it's funny that I'm leaving one myself. sending prayers your way. keep doing what you're doing, it's awesome. laurel

  14. Your daughter is beautiful and she has awesome brothers. I read your story in people and was inspired by what you are doing. Quinn so lucky to have a mommy like you.

    Enke, Mongolia

  15. Let me start by saying your blog brought me to tears today , no parent should ever have to go through what you and your family are facing but I think that you have given and will give Quinn the most AMAZING life. I am so happy that all of you got to enjoy Disney and a cruise two of our families favorite things to do. My favorite pics were all of them all of your smiles and being together as a family were really heart warming. Thank you for inviting us all in and sharing your wonderful family with the world. The pic that stood out the most happens to be the beach baby one Quinn is so precious and the most beautiful baby.

  16. This comment has been removed by the author.

  17. Sorry - I accidentally deleted my comments from earlier. Here's what I posted before.

    I learned about your family a few weeks ago and since then I have been thinking a lot about all of you and hoping you were okay after the People article. I'm so glad you were able to get away and enjoy some wonderful family time in Disney and on the cruise. What an awesome trip. Quinn is the perfect little princess. Her smile just melts my heart. I love the butterfly kiss too. Thank you for sharing your trip with us. Your family is truly amazing and a wonderful example of what love is all about. Sending lots of love and hugs from Buffalo, NY.

  18. I am so happy to see all of the wonderful places you went and all of the tremendous experiences you had. Such beautiful memories. The butterfly kiss is especially special! Blue morphos are very hard to photograph - they don't light for very long and when they do, they usually have their wings folded. The underside is brown, not that beautiful blue. That very wise butterfly knows just exactly how special Quinn is! :) I am so, so very sorry for your sadness and for what your family is facing. Please know how much love comes to all of you from so very many people. Every single one of us would give anything to be able to make it not so. xoxoxo

  19. I stumbled upon your blog and have read all your posts from day one! You and your family's story is truly inspiring! I couldn't imagine what you go through day to day. You are truly an amazingly brave person. As I read through everything,I began praying for you and your family. I honestly wish there was a cure and that you could always have your baby. I sit her in awe of the life you have given Quinn. She is truly blessed to have a loving family that cares for her. You have an amazing family. Just know there is always someone praying and thinking about you and your family. Thank you for sharing your love. xoxo

  20. I have read your blog from beginning to end, some entries more than once. You are such an amazing family and Miss Quinn is so lucky to have the support from so many people that love her. Your strength, love, grace and courage inspire me in a way that I have never felt before. I am so sorry your family has to experience this, but I really do admire the way you are giving your baby the fullest life possible.

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