Costco Appreciation Day at Connecticut Children’s Medical Center

Olivia was invited to the medical center to talk in front of the CT Costco employees today. They had a birthday party, celebrating the Medical Center’s Sweet 16. Olivia did a great job sharing her story to the 10 Costco employees. We then had the pleasure of a tour of the PICU (holy moly, MEMORIES). I was quite uncomfortable to be honest, because it brought EVERYTHING BACK for me. Olivia was most fascinated by the family suites, which she had never seen before ;).

I mentioned to the PICU staff that Olivia had stayed with them 3 times, and they were THRILLED to find out she was a patient of Dr Mello’s.

Interesting tidbit about Connecticut Children’s – they filter the air 4 times as often as a “regular” hospital. And that’s why it never smells “like a hospital”.

We stopped in to see Felice Heller (LOVE HER). It was so great to be able to visit under good circumstances.

Welcome Home Rockcats event

We were invited to the Welcome Home dinner for the Rock Cats. It was held at the New Britain Elks Club.

We arrived and asked for Amy, who was our contact for both evenings.

Rocky the mascot was hysterical. He came over, grabbed my camera, took pics of Arnie, Olivia and I and then posed for pics with Olivia. He took someone’s napkin and polished Arnie’s head with it and then PUT THE NAPKIN BACK! He motioned that he was also bald. He took over my camera later in the evening and I found some crazy shots on there!

We were seated at table 15, with the coach’s wife, their two sons, the “voice of the Rock Cats” son, Amy and Bobby, a relief pitcher for the Rock Cats.

Bobby was in a word, AMAZING. He sat and talked to Arnie about baseball. He warmed Olivia up, asking her what she liked and what she didn’t. He really was great. He even offered to throw the ball around with her the next night before she threw out the first pitch. Truly a LOVE.

Dinner was salad, roast beef, corn and potatoes.

Livvy and I both spoke after dinner and thanked the Rockcats for all that they do for Connecticut Children’s Medical Center.

Mill Foundation Dance

We had the pleasure of attending the 2012 Shamrockin for the Kids event. The The Mill Foundation for Kids is a local organization that raises funds for toys to be donated to local hospitals as well as fund research to eradicate pediatric disease.

We actually know quite a few people involved with this organization through town and the club, but hadn’t really been involved in it.

Olivia was nervous before we went and actually cried that she was going to mess up. I reminded her again that unless she tells them her name is Sally, she’s 16 and is a breast cancer survivor – she can’t mess up . I had told her there would be 200+ people there and there were actually 550+. (whoops!) She knew that she had a choice to not speak, but chose at the last minute to talk.

What an AMAZING EVENING! It’s a casual event in that you wear “green and jeans”. (Maddie was THRILLED with that!) My sister goes every year but she was down with the stomach bug, so my parents came in her place. The event was held at the Aqua Turf Club which is always a great time and CLOSE (5 minutes down the road).

When we arrived, we had our friend Buffy introduce us to all the folks on the foundation board. They were so happy to have us, and we were SO THRILLED to be there. My dad walks in, grabs Olivia and walks off with her. He comes back and tells me he met someone who had “heard Olivia speak before, and that’s why they requested her”. Seriously, she’s 7. It made me laugh though.

The Mill Foundation was so kind and had gifts for both Olivia & Maddie. That they recognize that this is just as hard (if not harder) on the siblings, was so nice of them. I know Maddie truly appreciated being remembered.

We were seated with the Executive VP and Chief Operating Officer at the hospital (Theresa). This was our first time meeting her, as we typically see the president of the Medical Center at events. We were also seated with the Above & Beyond award winner for CT Children’s. This is a special award The Mill Foundation presents to someone from each of the hospitals they work with (Yale, CT Children’s, Hospital of Central CT, Children’s Hospital of Boston and Dana Farber).

They had a cocktail hour with a cheese table and open bar. Right before dinner we got up to speak. Olivia did GREAT and even paused when she was supposed to (after saying “I was born with half a heart”). I thought my speech was probably the best written one I’ve given. I really focused on what the organization is about and how Olivia benefited from what they’re doing. I sped through it though. It’s a lot harder when you know people there (and there were a LOT of people there that we knew!). I had sweaty palms and a stomach ache prior. NERVOUS!

So it went well. We sat down and had dinner (salad, pasta, then family style chicken, roast beef, carrots & mashed potatoes). There was a silent auction. After dinner we danced and danced. This was the first event where the girls were done and ready to go home before US! I said to Arnie “we need to get these kids home before they call DCF on us that we’re keeping them out so late”. Not 5 minutes after I said that, they asked to go home.

So many people came up to us, introduced themselves and thanked us for speaking. They complimented Olivia on her speaking and Maddie on being a great big sister. There were school families there who came up and said “I had NO IDEA” to which I cheered internally for myself, because I feel like maybe I talk about it too much. If they didn’t know, I’m doing an ok job with not over-sharing.

Huskython 2012

Huskython 2012. Every year it gets BETTER and BETTER.

We truly look forward to this event EVERY year, ALL of us. For Arnie to give up his birthday willingly says a lot about how much it means to us.

To start, Huskython is an 18 hour dance marathon run by UCONN students. All proceeds go directly to the CT Children’s Medical Center. The event is held on campus at the Field House. It starts at 6pm and goes until 12:00PM the next day.

This year we had to get a bit creative, as Maddie had a basketball game in Southington at 3pm and we had to be at the Family Dinner in Storrs by 4PM. Arnie took Maddie to basketball and met us up on campus after. Olivia and I checked into the hotel early ( She was a bit bummed that the pool was being refurbished. Once I pulled out Netflix on the laptop, there was no more complaining.

Prior to arrival, we were presented with a schedule of events for the entire 18 hours PLUS a list of the themes for each hour of the dance a thon. The themes included Husky Pride, and Disney among others. Olivia LOVES to dress up, so we packed her outfits for all the hours we could possibly be there for. At this point we can make it until 11PM before heading back tot he hotel.

Olivia and I packed her bag and walked to the Student Union, where the family dinner was held. This was a big improvement in location over past years as we could walk from the hotel AND it was directly across the street from the Field House. We didn’t feel rushed and the timing of dinner vs when we had to be across the street was perfect.

They lined us up to go across the street in a particular order. Katie P, UCONN Student, Delta Gamma member, and Family Relations Director for Huskython walked us over. Olivia was first and held Katie’s hand. The family entrance into the Field House was THE BEST in the 4 years we’ve been attending. I thought my heart would burst from all the love we felt walking in there. I don’t want it to seem that we didn’t appreciate every other entrance, just that this year’s was unreal. I don’t know how they can top it, short of fireworks HA! I will add a video shortly, but they had 1700 students creating a pathway for us to walk in the field house. They opened the door, and it was pandemonium. Students SCREAMING, pep band playing, DJ playing music and the emcee announcing each child. It was EVERYTHING I could do not to cry. I cannot imagine how overwhelming it was for Liv. All the families were in tears after the entrance.

New this year was a “Fast Pass” which was a great touch. The kids were given a “fast pass” to skip ANY line at any time. So no waiting an hour for the bounce house, or even FOOD! They really made sure the kids felt like celebrities.

We are truly blessed to be matched with Delta Gamma every year. Not only do they shower Olivia with gifts, but they ALWAYS remember Maddie. The girls were super excited to get all their gifts, but the most special item for both was a sailor hat with their names on it. This is something Delta Gamma does for their “sisters” once they become members of the sorority, so it was a very special gift we will treasure forever. Arnie and I have been laughing that Olivia is going to walk into that sorority house in 10 years and say “I’m here, where do I put my stuff?”. She truly believes she’s a DG girl :).

I say this every year and every year I forget. It gets SO HOT in the field house and we really need to remember to lay the clothing and bring capri’s / shorts for the kids.

During every hour a family would share their story about CT Children’s Medical Center. New this year, the students would get down on one knee to honor the family and show respect. It was VERY moving to see them all like that. Olivia spoke during the 17th hour of the event. She was a bit nervous, but there were 1700 people kneeling there, listening to her. She did a great job and I was so proud of her.

The students ended up raising over $304,000 for the hospital. This is now the second biggest fundraiser the Medical Center has and it’s now in the top 10 for dance marathons for Children’s Miracle Network Hospitals.

We cannot WAIT for Huskython 2013.

Published April 10, 2012, but backdated to February 19, 2012 for historical purposes

Pre-Huskython event

Today we went to CT Children’s Medical Center to have the kids decorate a banner for the students. They also decorated “awards” for the awards ceremony which will be presented for the highest fundraiser / most team participation / etc / etc).

These awards will be used at the Huskython event as well as the first annual Quinnipiac-a thon. Both are dance marathons benefiting CT Children’s Medical Center and Children’s Miracle Network Hospitals.

Posted April 10, 2012, but backdated to February 12, 2012 for historical purposes

2012 Champion representing CT Children’s Medical Center for Children’s Miracle Network Hospitals

We were informed the last week in January, 2012 that Miss Olivia had been selected as the 2012 Champion representing CT Children’s Medical Center for Children’s Miracle Network Hospitals. What this means is that she’ll be representing our great state of CT throughout the entire year at many events for the Medical Center. In September she will be going to Washington, DC to meet with legislatures and then to Orlando, FL for a Children’s Miracle Network Hospital conference in Walt Disney World!

We have attended many events already in this capacity and I will be catching everyone up on these events now that this is “public”

(published April 10, 2012, but backdated to February 1, 2012 for historical purposes)

Champion Pizza Party

We were invited to the Champion pizza party at the Foundation. This is where Olivia was officially introduced into the CT Champion family. We got to catch up with some families we already knew and meet a bunch of older champions. I am so proud of her, that she’s part of this “elite” group of miracles. She spent the evening with her “hospital” buddy, Becca. Becca was a micro-preemie and is now 8 years old. They were never in the hospital together but have gotten close from all the events we do together.

While Children’s Miracle Network Hospitals hasn’t approved Olivia yet and therefore it’s not official, Olivia took over the reins from Marcquille who was the 2011 Champion representing CT and CT Children’s Medical Center.

Published April 10, 2012, but backdated to December 27, 2011 for historical purposes

June 2011 catchup!

I’m promising to update more frequently. We have a LOT going on and I want to document it all for when I ever get a chance to scrapbook ;)

June was a busy month.

Maddie graduated from St. Dominic School on June 15th. It was a beautiful day and I’ll admit to having shed a few (thousand) tears.

June 17 was a VERY big evening for Olivia. We were invited to the Aqua Turf to share Olivia’s story at the Miss CT Gala. This is the kickoff to the Miss CT pageant. Maddie had her annual end of school party at Mountain Grove which she chose to attend instead. Olivia was in her GLORY with all the pretty ladies, their gorgeous dresses and of course, all those CROWNS! Olivia made us incredibly proud when she chose to give a speech herself. There was not a dry eye in the room when she was finished and she received a standing ovation. The directors of the pageant were so impressed they actually made Olivia an honorary “diamond” and gave her a crown. It was truly a shining moment for Olivia and “the hands” were going a mile a minute. She asked me after getting her crown if she would get a sash too? LOL. She then spent the rest of the evening dancing with the other girls. She made fast friends with a little girl who had the same dress on as her.

This was such good timing, as the next morning I woke up Maddie and took her to Disney as her graduation present! It was just the two of us. We went from June 18 – June 22 and stayed at the Port Orleans – French Quarter. How I told her: I had been telling her we were going to start getting up early in the morning and running. We had also been telling her that her graduation gift wouldn’t be arriving until Saturday. On that morning I woke her up at 5AM and asked her to come downstairs. We handed her a graduation card that told her to look in the trunk of my car for her gift. She opened the trunk where two suitcases were in there (with the bright yellow Magical Express luggage tags on them), along with her Mickey ears and a small Mickey Mouse. She couldn’t believe it and kept saying “Really? Now?”

Maddie actually planned the entire trip – from dining to park days for my “client”. We did a lot of “new to us” things – such as water parks (which she had last been to at the age of 3), Disney Quest and closing the Magic Kingdom at 2AM. It was a great time for just the two of us to spend time together and bond.

June 25 I took the girls and Maddie’s best friend to the Miss CT pageant in New London. The Miss CT organization had invited us to attend after Olivia’s speech. Olivia got to see some of the new friends again and we got to see Miss Southington, Morgan Amarone, become Miss CT. Olivia went on stage with our friend, Scott, from the CT Children’s Medical Center Foundation to help him present the outgoing Miss CT, Brittany Decker, with a thank you for all that she did for the Hospital in the past year.