Latest Journey

This past week, I was asked to be the alumna speaker at the 94th Convocation at Conn College. It was such a great honor to have been asked, and some of the people in attendance emailed me to say I was the best alumnae speaker they had heard (aww...!! So nice!). The Director of Alumni gave Joli and Jada these cute sweatshirts!

Funny picture of Jada -- Joli had dressed her up as Master Shifu. I'm not sure how exactly this qualifies as Master Shifu's costume, but, heck!, they had fun!


Let's see, here is a list of funny stuff that happens in our house:

• Joli loves the Cheetah Girls in India. She loves to say she's Aqua, the one with the "brown skin" (hurray!)

• Jada is obsessed with calling herself Master Shifu or Kitty Kat

• When it's time to go anywhere, Jada says, "C'mon, Cheetahs! It's time to get to work!"

• Yes, Jada still has a boobie obessession, which I'm simply blogging about so we can look back on this and laugh! I'm trying to get her to move from a boobie obsession to a "belly" obsession

• Joli loves to watch A Baby Story in the morning with me.
  

• Jada is just about potty trained - she spends most of her day in "big girl undies" and Joli likes to call Jorge's underwear his "manties"

• Joli starts full time Kindergarten on Tuesday -- and will wear a uniform 5 days a week

• Jada loves the Jonas Brothers and asks for Jorge to play their songs every time they get into the car

• Joli and Jada have discovered "friendship bracelets" and love wearing them on their ankles

• Jada still enjoys saying "Gordon DIIIEEDD!! he's never coming Baaaccckkk!!!"

• Jada is very loving to "the baby" in the morning and greets it every day with "Hello, baaaahhby. I'm your sister, Jada!"

• Jada has developed a funny little laugh that she gives off when knows she's in trouble. It sounds like this, "ahh heeeeiii heiiii yayaaa." It freaks Mari out.

Gonna have to come out with a new website name.... again.....

Well, the superstitious 3 months have not quite passed yet, but it seems everyone -- whether by accident, purpose, or by the excitement of a 2 and 5 year old -- has already found out. And, with Jenny's posting of her own pregnancy test on her website, the proverbial cat's out of the bag.

Yup, we're expecting again! And, we're actually agreeing, so far, on baby names.... more to come on that in about 6 months. Due date: late March/early April

Hurray!!

Pregnant with Joli (found out on November 23, 2002)

Pregnant with Jada (found out on September 4, 2005)

Pregnant with....??? (yes, it's positive.. just very light) - found out on July 30, 2008

Joli's 3 year anniversary

It's hard to believe we have officially celebrated life as a predominantly cancer family. This year, August 17, 2008, marked Joli's 3 years since her diagnosis -- that means, she has now had a prosthesis longer than she had her "seeing eye."

As I mentioned before, I was incredibly sad not to have celebrated her anniversary at Sesame Place like we had done in the past. But, this year, I couldn't have imagined a better way to celebrate.

We met up at Lake Compounce with 3 other Retinoblastoma families we met at Camp Sunshine. There were a total of 5 Rb survivors (one family, bless them, had 2 kids with Rb). It was a very special day because we were spending it with kids who had survived Rb, and we all knew how very fortunate we were to be able to celebrate together.

Here are some great photos of the girls with their friends!


Joli and Jada with their friend Julia (diagnosed at 7 months old, and is now 8 1/2 years old)


The girls with Alia, age 6 (diagnosed as a toddler - can't remember exactly when) and Maryam age 18 months (diagnosed just after being born because of the family history)

Not pictured is their friend Abby who, though has bilateral Rb and only central vision left, was with her older brothers at the water park! Go, Abby!

here are some other cute pictures of the gals:


Oh, Jada....
Jorge and Joli on one of those "free fall" rides -- yikes!

One of my favorite photos of Joli pre-diagnosis. This was when we went to Sesame Place in August 2005, just 4 days before diagnosis, and she has just seen Elmo coming down the street.

Thinking of Joli tonight

This time of the year is always the hardest for me as Joli's mom. I don't think she quite gets it yet, but August 16-18th, I'm a wreck.

August 16, 2005 was the last day of our non-cancer lives. It was a the night before we went to New England Medical Center. It was the night before all of our lives changed. It was the night before Joli was diagnosed with cancer. And, while we now look back on that day, 3 years ago, and we know exactly how the story ends, I still find myself sleepless and teary for the past few August 16ths.

As I was driving around trying to get some weekend errands done with Joli, we drove by a long stretch of women in pink t-shirts who were in the middle of the Avon 3-Day walk. I looked in my rearview mirror and caught Joli waving at the women as we drove by.

"Joli, who are you waving at?"
"I'm waving at those people wearing pink."
"Why are you waving to them?"
"They just look like their having fun."
"Do you know why they are all walking together?"
"Because they are friends?"
"Yes, but also because they want to raise money so that people don't have to have cancer."

silence
"Mom. I wish I didn't have cancer."

silence
"Me too, Joli. Me too."

silence "Mom? I'm brave."

"I know, Joli. You are brave. When I think of the word 'brave', I think of you."

For the past few years, we have celebrated Joli's anniversary at Sesame Place. It was our last family vacation just before she was diagnosed, so we celebrated her journey by going back the past few years. Well, thanks to rising gas prices, we didn't get to go this year. I was really emotional about this because it was such a special place for us and usually served as a nice distraction away from our home.

Thankfully, as all things happen, an even better idea came through from one of the Rb families we have grown to know from Camp. We'll be celebrating Joli's diagnosis day with 2 other families who have also survived Retinoblastoma, and I hope that this becomes a new tradition, too!

More on that when we get back, I'm sure.

But, tonight, I'm thinking of Joli. I'm thinking about how truly lucky I am to have been given the opportunity to be her mother, and how thankful I am that she is my inspiration.

I love you, Joli. Happy Survivor Day!

Joli on her 2nd birthday - 1 month before diagnosis


Joli on her 5th birthday - 3 years post-diagnosis

In my "free time"...

Recently, the social worker at MGH gave a new Rb family my contact information (I volunteered it). They had just been diagnosed, and they were in that very confused/scared/terrified mode. Talking to this family brought me back to August 17, 2005, when Joli was diagnosed. We were terrified, and reading the internet, just got more and more scared. When I did a search for retinoblastoma (almost 3 years later -- can you believe it?), I still came up with the same scary sites. I also came up with a list of support organizations that I know do not exist anymore. When we were diagnosed, I had emailed those local ones and never heard anything back :( Which, of course, made me more anxious.

So, in my "spare time", I've decided to host a website called Retinoblastoma New England. (there is currently another Retinoblastoma of New England group, but they aren't active at all!). The website is www.rbne.org and I'm hoping that it serves as a source of encouragement for new families in our area. It will eventually feature more stories from our friends in the New England area, but for now, it's a lot of Joli info.

Hopefully, somewhere down the line, I hope to make it into a fundraising group that can help families pay for Camp Sunshine travel or maybe even a little bit to help with medical expenses. But, I can't commit to that now... for now, it'll be an online source of encouragement.

Check it out when you get a chance!

Happy birthday grammy!!!

Recognize that cute little face??

Check out Joli who is the poster child for the Tagalog and Spanish posters for Daisy Eye Cancer Fund - an organization based in the United Kingdon for awareness of retinoblastoma.

While we have, literally, hundreds of photos of Joli as a child, we have only a handful of photos with leukoria in it. Most of the leukoria photos were actually taken the night before her surgery -- and, understandably, the camera was always shaky, or the pictures came out blurry, or they were just not well composed. So, I only have a few where I could find pictures of leukoria that were good enough to send to Daisy Eye Cancer Fund. So, this'll have to do!

We're just so happy that Joli (inadvertendly) can give back to the Retinblastoma community and hopefully save the eye - or life - of a child.

Goodbye Hyundai and Hellooo..... Hyundai.

Jorge said "goodbye" to his first car. His first major purchase. For the past 10 years, the old grey Hyundai has served him well -- a drive to Florida, multiple drives from New York to Boston, commuting 2 minutes to work in Long Island, and commuting sometimes 2 HOURS in Boston.

The Hyundai has carried both of our children as infants and has transported our dog, Gordon, multiple times.


And, HELLOOOO HYUNDAI!

Yes, that's how we roll.... Jorge is big baller', shot caller'n in his new blue Hyundai! But, this is slightly tricked out more than his grey one. XFM radio. Super Glow-in-the-Dark dashboard, CUP holders AND BOTTLE holders, and this one actually accelerates. And, it holds more than 1 person in the backseat without cutting their legs off.


Congratulations, Jorge!!

(here, the girls are saying: "Oh, yeah! This is definitely the car we'll learn to drive in one day! -- or take for a joy ride when we're 13....")

FUN WEEKEND!


Finally, some good weather around here! On Saturday, the girls and I went blueberry picking, and they were such professionals at it! We filled up a 4 lb bucket, and there wasn't a "green" berry in sight! Jada and Joli were meticulous about only picking the biggest and bluest berries! They did great!
On Saturday afternoon, we went to our favorite Dim Sum place. The girls love going there and often ask if we can "go to China." In fact, some mornings, I can tell that Jada is dreaming about going because, in a still sleeping state, I can hear her say, "I really want to go to China please."

Joli is starting to ask some good cultural questions, too. This past trip, she asked, "Mom, why are we the only ones who don't speak Chinese there?" That was really interesting. As a side note, the girls and I have also been going out for Vietnamese food (which, they LOVE) and I'm waiting for the day when Joli asks me if they are the same or different.

In my professional work (which some of you may not know about) I write a lot about raising anti-racist children and ways that I expose the children to cultural diversity. So, yes, this latest series of questions will soon make an appearance on one of the online sites soon.

Jada eating her favorite -- sweet tofu!

When we went to Toronto, Lola bought the girls these cute Chinese dresses at the "Largest Indoor Asian Mall". The girls look so cute in these!

Operation Swan Dive

We finally got some pictures of Jorge's flight out of the airplane for Operation Swan Dive!

Getting ready to suit up...

No turning back now, Jorge!
Jorge said this is the moment when he actually felt a little scared, "Humans weren't meant to jump out of planes...."
Karate Kung Fu action at 13,000 feet




Screaming with fun!

Operation Swan Dive and Joli's Rock Star Moment!

Yesterday, we were asked to be the guest speakers at Operation Swan Dive, an event to raise money for cancer research and support. Part of the event was for Jorge to sky dive -- thanks to all the friends and family who donated GENEROUSLY to this event! In 4 days, we were able to raise nearly $600!!





In the afternoon, we got to hang out on the swings. And, in the evening, I gave my speech just after Sister Hazel performed. Joli and I got a standing ovation, lots of people coming up to us at the end, and many many men and women saying they were crying during our speech. The Camp Sunshine folks were happy that people were so touched by our story!

Jorge -- coming in for the landing!


While it's hard for us to give financially to cancer programs (and, heck, we feel like we've given lots of sacrifices along the way), being able to speak about our story and of Camp Sunshine is our way of giving back to a community that helped us so much.

At the end of the night, Joli went to wave goodbye to Sister Hazel (Ken Block) while they were on stage. In the middle of the song, Ken Block came off stage and gave Joli a big hug and kiss on the cheek. She was giddy all the way to the car -- so cute!

My Birthday Weekend!

Hi everyone! It's me, Joli. I had a fun birthday weekend. Here are some of the things we did.

On my birthday, I went to the park with Mia, Jada, Aunt Jenny and my mom. I did a really good job balancing on this beam, climbing, and playing on the slides and swings!


At night, we had my birthday cake and ice cream. It was yummy! The grown ups played rock band.


On Friday, I had a birthday party at my school. And, on Saturday, I had another birthday party at my house. Here are two of my friends from school and my cousins. Jada was asleep and she missed the picture. Nina was with her mommy but I spent lots of time holding her!This is another cake! My parents couldn't find the "5" candle, so instead, they found a "2" and "3" and told me that added up to "5." Sounds good to me!

This is my baby, Nina. Not really MY baby. But, she's my cousin. I love her so much, and Aunt Marie and Uncle Andy let me hold her whenever I want.

Thank you for all my presents and for coming to my parties! I'm so excited to be Five Years Old!

An Intersection of A Life Well Lived and Living Well


A Life Well Lived
This evening, we said goodbye to our buddy, Gordon. Gordon was our "first child", a four-legged one, but one who weighs about 2x more than our daughters combined. Gordon died between Sunday night and Monday morning of last week (July 6-7) while we were on vacation. Gordon's body was brought out of our house before we could see him, and so today was the first day we saw him since we left for Canada. It was a difficult time for us -- struggling between wanting to hold on to our last memory of Gordon, saying "goodbye... be a good boy.. don't make a mess" as we left the house. But now, our last memory of Gordon is of peace.

We held a ceremony this evening for Gordon, and thankfully, most of the family was there. We said goodbye, we love you, and thank you to our loyal companion.

Joli said, "God, please remember to feed Gordon 2 cups of food every day."
Gavin, who is usually terrified of Gordon, said, "Tita Liza, Gordon looks beautiful."
Jada said, "Gordon died. He's never coming back. He's going to go into a box."

Our family then had some quiet time at the end to thank Gordon for protecting us all these years and for loving us. We asked Gordon to watch over us while he's up in Heaven.

Grace had some quiet time with Gordon, too. We know she felt a strong connection to him, and so we wanted her to have some time with him.

After we all said our Goodbyes, we watched as they placed Gordon into the crematory. Approximately 2 hours later, Jorge was able to bring our friend home.



On living.....

This is the eve before Joli's 5th birthday. We spent this evening talking about when she was born, and some of our favorite highlights of her years. We shared some of our favorite memories of her growing up. It's hard to believe she'll be 5 years old....

Joli at 3 weeks old -- her first "Tigger photo" with our buddy, Gordon.
Joli's 1st birthday
Joli's 2nd birthday
The eve of Joli's 3rd birthday
The eve of Joli's 4th birthday

The eve of Joli's 5th birthday

Happy Birthday, Joli! We love you!!

This could be Jorge...

(photo: courtesy of SkyDive Pepperell)

I have been asked to be the guest speaker at the Operation Swan Dive (http://www.operationswandive.org/) event featuring Sister Hazel - a band that I hadn't really heard of, but apparently the rest of the world has (yes, I'm lame). Anyways, I was asked to speak on behalf of Camp Sunshine and the impact the camp has made on our family. Jorge, Joli and I get to have a meet-and-greet with Sister Hazel along with some key Boston Celtics folks! Hurray! Then, we get to stay for the Sister Hazel concert, too, with prime seating, I'm guessing.

So, when I found out all this was taking place at a Sky Diving location, I asked if there was an opportunity for someone to sky dive while there. They said, "Yes! In fact, we're looking for a Camp Sunshine family member to skydive!" So, naturally, I volunteered my loving, wonderful husband...

Do you want Jorge to go skydiving?? Well, if so, he needs to do the impossible -- we need to raise $1,500 by Saturday! I mean, truth be told, they will let Jorge skydive for much less than that -- but it would mean that Camp Sunshine would have to make up the financial difference. Now, wouldn't that just defeat the purpose???

So, get those checkbooks out and give it to one of us or send it to our home address. If you don't know our home address, just comment and I'll email it to you! But, while you're waiting..... write away!

Any donation, of course, is accepted? Got $10? $20? $50?

Shout out to the good people at Flights Travel who donated $300! Guess Lola really wants her "#1 son-in-law" to take the leap!

Fun Weekend!

The whole family went to Marcella Runell and Dave Hall's (aka DJ Trends!) wedding celebration - it was so much fun! Joli and Jada certainly were a hit as the youngest people (by about 30 years) on the dance floor. But, they held their own and tore up the floor!

Jada was doing a fierce dance earlier and just tired herself out. Jorge and I took turns dancing while carrying a sleeping toddler (yes, very responsible of us....). Jada slept through it all, though, and probably loved being "rocked" to sleep!

Miss Joli, on the other hand, danced the night away! She stayed up long after the party was over, too!



At the end of the night, we were all exhausted and even felt old as we slept before the after-party even started!
On the way home, we stopped by the Mystic Aquarium where the girls had a ball. We also went to Neon Chicken -- just about our favorite restaurant on the planet.

Oh, Canada!

Well, prior to the sad Gordon news, our family was having a great time in Canada. We went to Sue and George's wedding (congrats, newlyweds!) and visited lots of our family. Here are some of the highlights:

At Niagra Falls on the way to Toronto

The family took a trip to the Harbourfront Centre in Toronto
The kids had been killing ants, and so we began to call them "God's Creatures" so that they wouldn't do it. Here they are looking at "God's Creatures." We thought it was all innocent until we heard Jada saying, "Okay, God's Creatures. Time to go to bed." And we caught her squishing them between her fingers saying she was putting them to sleep.
When we came home, Joli saw this paw print that the people at the animal hospital had made. So, naturally, that opened the door to talking about Gordon. Joli was very quiet, and then asked if she could remove her necklace (the fancy one she bought in Canada) and place it on Gordon's pawprint. Jorge and Joli had just done a lesson at the cemetary about a month ago, so she knew what "died" meant already. She said, "My heart hurts. I feel sad. Gordon is never coming back."

Joli took this picture of her tribute to Gordon. We also had just found a picture in our car of Gordon that the kennel took last time he was there.
We had Joli explain to Jada what happened to Gordon. This morning, Jada came into my room and said, "Mommy, Gordon died. He's never coming back."

So far so good with the girls and Gordon. I think Jorge and I are having a tougher time with it, though. I almost put food in his bowl this morning.....