Here's a cute picture Grace found of me when I was about 4 years old (circa 1979) ... Yes, Jada is "mini-me".

End-Of-June Fun!

June is rapidly coming to an end (where is all the time!).

We had Nina, Lily, Marie and Andy over today and had to get the swing down from the attic. Unfortunately, territorial-Jada decided that Baby Nina was NOT allowed to sit in her swing....

This is a picture of Jada exactly 2 years ago in July 2006! Hahha!!
This seems to be the favorite Vega Girls photo -- sitting on Uncle Jorge/Daddy. Looks like Nina is quickly learning the Vega traditions!


Sometimes, Jada sneaks into Joli's bed to snuggle. When I went to check on them, they were all in this weird tangled mess! Joli's arms are trapped under Jada's head and chest, but then Jada is pinned down my Joli's head!


Happy Birthday, Uncle Paulie! Aunt Kirsten and Lola got him an electric drum set.
Cute Daddy and Joli moment in the swimming pool! Joli is going to take more swim lessons this summer with Teetah Grace.

Because appearances by Uncle Paul are so infrequent, he gets to appear 2x in this blog! He shared his birthday cake with the girls and we thank him for the massive sugar high those kids felt....
The Vega grandgirls. Joli LOVES holding Baby Nina. It's all she talks about. Jada misses Lily all the time. Lily, Nina, Andy and Marie live in a brick building, and whenever Jada sees ANY brick building, she screams, "We're at LILY'S house!!!"

Dimone, Jamaiya, Hayley, Brittney, Tacey, Maycie

No, I'm not having sextuplets .... we have bunnies in the backyard again!

See, there are l-o-n-g stretches when Jorge doesn't get a chance to mow the back lawn. So, the long grass is an ideal nesting ground for rabbits. When he finally bought a ride on mower, he disclosed their nest. The girls went out and checked out the babies (6 of them) while also devising a way to keep the bunnies safe from Gordon. Check out one of the babies poking through the nest!

YouTube video

Just uploaded a video that I made a few months ago about Joli's journey with Rb. When I searched for "retinoblastoma" on YouTube, there was hardly anything there. I can only imagine, as a new parent, how helpful it would be to have a video like Joli's to watch.

Summing up her experience in less than 10 minutes (a YouTube limit) is nearly impossible. We do a longer version (15 minutes) when we speak to the college classes, and Joli is on hand to answer questions.

In other great awareness news, because Joli and I have spoken to a few college classes about her experience with Rb and with my family's experience being BRCA +, awareness and education is spreading! I got news the other day that two of the professors are writing a Biology of Cancer book and are including Retinoblastoma in there! Wow!! That's really big news! That means, anyone using that textbook will learn about Rb, and as we know, knowledge is key! They've also asked to use a picture of Joli with her leukoria, so I'm going back and scouring my thousands of photos to find a textbook-appropriate one.

Back from Camp Sunshine

With well over 1,000 pictures from Camp Sunshine (a compilation of lots of people taking pictures and already burning them to disc!), it would be nearly impossible to summarize our experiences here. So, hopefully you can get a chance to ask Joli how it was! But, overall, here are some highlights:

• Of course, Joli was looking forward to seeing Tacey and Mayci, Leah, and Julia, and those were some of the first girls she saw.

• Joli finally got to perform a Hannah Montana song with Tacey and Mayci -- she's been honestly practicing all year for this very moment.

• I found out that Joli WROTE the song that her group performed at the celebration show! She wrote a Camp Sunshine version of "Wheels on the Bus" and even got a "song, written by Joli!" at the end of the performance

• Teetah helped me out the first half of the week (thanks, Grace) and Jorge came and joined us just in time for the celebration show

• Jada and I took out a paddle boat onto Lake Sebago - that was awesome!

• We went to Storyland at the end of camp, and will definitely do a repeat visit there. It was so much fun!

This is Joli with her wish-boat. At the end of camp, the kids "make a wish", send it into the lake, and then blow out their wish. Joli told me that she doesn't wish for anything.....
Jada and I dared the lake and took out a paddle boat. Joli didn't want to go on because she "didn't like the life jacket". Jada did a great job steering the boat while I paddled. It was totally fun! Jada kept saying, "Oh, Mommy. This is just sooo beautiful!"
Jada and Joli were in the same room most of the day (separated by a moveable wall). Jada's age group was infant-3 years old; Joli was in the 3-5 group. But, there were lots of times when they did activities together. It was so nice to have them in "school" together for this week.


Joli and Jada all snug in the bunk bed -- which they stayed in for about 5 minutes. After that, they made me sleep in the awfully uncomfortable futon with them for 5 nights. Ouuwwww....

Joli was older and more mature this year, and she was able to work well with Mayci and Tacey. Both Mayci and Tacey are blind - they both had enucleations from bilateral retinoblastoma around age 2 1/2 (Mayci) and 6 years old (Tacey). The girls have amazing parents and families, and they all encouraged Joli to be with the girls as much as possible. And, Joli was in heaven.... she loves these two girls so much!!
Miss Jada's personality really developed this week. She is straight up sassy-frassy. I feel like Jada's vocabulary soared this week, and she was so much fun (and exhausting....). Jada is obsessed with bugs, and and she kept following around every single bug (which, there are thousands of them in the woods of Maine). Prior to this week, though, Jada would say, "I kill bugs" and stomp on them. We finally got her to say, "Ooh! Little bug! I won't hurt you. Go back to your Mommy." Then, she'd say, "I won't kill you. You are God's creeeetuuures."


Best friends... Joli didn't interact much with Mayci and Tacey last year. But, after camp last year, she couldn't stop talking about Mayci and Tacey. This year, she was old enough to hang out with them, and the three of them were pretty much inseparable. By the way these girls run around and are fearless, you'd never ever ever know they were both blind. Their parents were really great about teaching Joli how to guide them, how to introduce them to her sister, etc. Joli got to learn that she had to announce her name when she showed to see them. What was so cute was that Joli has been feeling bad about her hair -- she says it's too big or it's too puffy, etc. But, Tacey and Mayci said that they know it's Joli when they can feel her hair!! So, by the end of the week, Joli was loving her hair and would say, "Mom, Tacey and Mayci know it's me, Joli, because I'm the one with the curly hair."


In addition to the kids all developing more self confidence around having retinoblastoma, having prosthetic eyes, etc., also comes all the "Stupid Human Tricks" that they share. One adult (who had Rb as a kid, and then went on to have an Rb son) told the kids that he used to take his eye out, stick it to his forehead, and go out for Halloween. Joli, naturally, thought this was hysterical, and went back to our cabin and tried it.... nice.

Check out this great video of Joli (and watch the cool moves she has!). Listen at the end -- she gives a shout-out to her Texan friends by closing with "Yee-haw!"

You'll hear at the end of the camp song, the counselor says, "Written by Joli!"

Having a Great Time at Camp! The girls are having the time of their lives at Camp! I'll write more later, but wanted to at least get some photos up there! Enjoy!

Joli rocking her camp sweatshirt -- it is COLD up here!
Jada has found a new "sister". This little girl has Rb and was diagnosed at 1 day old (but doing well now). The girls are on the 'wheelchair' swing because they couldn't stand to be separated on 2 of the baby swings.
Miss JoJo during "costume night".

Summer Birthdays

Not sure how it all happened, but many of the Talusan-Vega-Lacanlale-Nichols men were all born in a 6-week time span of each other (in different years, of course). So, we decided to start this year with the Summer Birthdays for the Men Celebration.

Happy Birthday (in order of birthday date) to Jon, Jorge, JP, Andy (Vega), Paul and Alonso!



The weather finally broke out of the 90's and we had a beautiful sunny day in the mid-70s for our birthday celebration. What's missing from this picture is that Mia and Jada are about to ram into Uncle Paulie....they look very serious here!
This picture is hilarious! Joli is looking reflectful and praying (what do you expect from a Pastor's granddaughter) and Mia is looking to party down! I'm gonna love this photo when they hit their teenage years ....
Yeah, that's our Mia. Sassy frassy.
A rare appearance by Uncle Paul (Uncle DooDoo) doing wheelbarrow with Gavie.

We're heading to Camp so look out for some great stories when we get back!

A great time....

It's been mighty, mighty, mighty hot out here. We bought a little kiddie pool the other day and the kiddies had a great time. Miss Joli was very spoiled and spent the weekend with her friends Hayley and Brittney. Really .. insanely spoiled. They stayed at the hotel, went swimming, went to the beach, out to dinner at a restaurant even Jorge and I have never been to, and played, played, played! We missed her!

Joli's eye seems to be bothering her a bit. I think it's all the pollen. She's gotten SO GREAT at just advocating for herself and taking out her eye and washing it. I still have to put it in, but it's so easy these days. Joli is SUCH a pro (and I also think I've gotten better at it. In retrospect, I think I was really poking her socket too much. Now, I know just how far to slide it in, etc.).


We're gearing up for Camp Sunshine next week. Joli is so excited! It's really such a wonderful place that just absolutely affirms her as a beautiful young person. She knows some of the kids there who don't like to take out there eyes, and when Joli took hers out she said to me, "Mommy, I'm going to tell my friends not to be scared of their special eyes." We also have been preparing her for how to behave around blind children. Some of the things include:

• Never grab the arm or hand of a blind child. Instead, say, "Hello! I'm Joli. I am standing in front of you."
• If they touch your face, do not move. They are trying to see what you look like by feeling your face.
• If you see something that could trip or hurt someone, move it out of the way or call that person's name.
  
• If you are answering a question, you have to speak the answer. You can't just nod your head.

It's all the little things that we take for granted as sighted people. And, I'm so glad Joli (and Jada) are learning it at this age.

Looking forward to blogging about camp!!

It's Sleepover Time Again...

Happy Birthday to Jonathan! His present was that we had Mia sleep over. It's always a crazy adventure when you get these girls to sleepover....

Jorge successfully put them to in their separate beds after a nice warm bath. Then, I heard lots of gigging and found this:

That bed is the size of an infant crib.

Why do I get the sense this is the beginning of a long night?
(as I type this, I can hear the girls yelling, "Give me that bra!!")

A Moment in History (hopefully lasting years and years)
Barack Obama has secured the nomination for the Presidency. We even let the girls stay up until 11:00pm in order to see him speak. And, yes, there is a mighty mighty difference between "Yes, we can" and "Yes, she will." Quite appropriate that Jorge's shirt says, "Got privilege?" on it...

Even Jada realizes the historical importance of today.....

It's been a crazy week!

Last week, I had breakfast with Deval Patrick (and 400 of his closest friends, of course) to talk about diversity in Massachusetts. That was awesome....


After a very long week in Orlando, I came home and spent a wonderful day at the beach with Joli and Jada. The water was freezing but the girls didn't mind one bit!
Jada sat on this rock and kept saying, "I'm a mermaid! I'm a mermaid!"
Action shot of the girls playing in the water.
I didn't go to any of the Disney parks, but I promised the girls I would take a picture with Sleeping Beauty. So, here it is, girls!
I am SO happy to be home and incredibly thankful for Jorge who spent time with the girls doing the daily routine!