Today marks two years since you went to heaven. That number doesn’t seem real to me. It feels like just last night I was reading you “Goodnight Moon” as you drifted off to sleep. At the same time, that feels like forever ago. That’s why days like this are strange. I feel a mixture of sadness and comfort. Anger and sentimentality. All I know is that I miss you. I miss you every day, but certain days more than others. B, these are the six days that I’ve missed you the most over the past year.
On May 7th, 2018, we hosted the first Purple Lemonade Stand since your passing. It was important to me to continue this tradition because even though the fundraising couldn’t save you, we hoped that it could prevent other families from going through what we did. We had the whole stand planned out, with families from all over Florida coming to support us. Other families of children with Sanfilippo were planning to come to the stand and we couldn’t have been more excited! A few days before, we noticed a lot of rain on the weather forecast for that day. We tried to ignore it, until waking up to pouring rain the morning of. From 1-4 p.m., the time of the lemonade stand, the chance of rain was 90%. We frantically rearranged everything. We had never done this before, but the 2018 Purple Lemonade Stand would be indoors. As it continued to rain, it crossed my mind that the stand may be ruined. I tried to stay positive, posting on social media that the fundraiser was still on and encouraging people to stop by. I was expecting the worst, until 12:50 p.m., 10 minutes before the stand was scheduled to start, when the skies cleared. Suddenly pouring rain turned into clear blue skies… just in time for our first visitors. The community showed up bigger and better than ever before. I had the opportunity to visit with other Sanfilippo families and play with sweet kids who reminded me of you. I heard comments throughout the day of people trying to explain why the skies had cleared. We knew why. It was you. Thanks for always looking out for us, B.
The Fourth of July has always been a fun day for the Chapin family. We’ve always spent that week in Boca Grande, your favorite place, and made the most of time with family. The day starts early, decorating our golf carts for the annual Golf Cart Parade. Using all things red, white, and blue, we covered each golf cart, in hopes of being one of the best in the parade. Usually, we drove two golf carts, enough for most of the Chapin family to fit. You always sat in your signature front row seat, with the best view of the parade. While my job used to be picking the most patriotic music to play during the parade, now I’m the driver!! You’d love my driving skills, I’m a much more… fun… driver than mom or dad. I wish I could drive you around the island, but you were never the safest passenger to drive with. You always tried to grab the wheel and drive yourself!
Later that night, we usually went to the beach club for a Fourth of July cookout. The night consisted of eating, dancing, and the hula hoop contest (I always won). Most importantly, we ended the night with fireworks. You were always mesmerized as they lit up the sky… a beautiful ending to one of your favorite days.
Trick or treat! That day of the year that you could be anything you wanted to. Ladybug, fairy, and cat (twice) were only some of your favorite Halloween costumes. Even though Halloween is a holiday to dress up as something that you’re not, one year you embraced exactly what you were. One of my favorite photos of us is from Halloween when we dressed up as superheroes. You were wonder woman and I was some random pink superhero (lame). When I look back at photos of you from that day, I remember what a superhero you were in real life. Your courage, positivity, and strength are traits of a true hero.
And our favorite month begins! December is full of celebrations for the Chapin family, with three birthdays and Christmas. The celebrations begin on December 2nd, my birthday. This was also one of your favorite days because our joint parties as kids and family dinners started the month of fun. This year I turned 15, the age you were when you passed away. That idea doesn’t affect me too much, but it is weird to think that next year I will, in a way, be the older sibling. Although we always say that I acted as an older sibling to you, you’ll always be my big sister. 15 is a big number, so obviously, we had to celebrate. Mom, dad, and I went to New York City for the weekend!! We visited Loryn, one of your favorite babysitters, along with some family. On Sunday, we saw The Cursed Child Harry Potter play. It was amazing! You would have loved it and that’s a bold statement. You always had a hard time sitting through plays, especially boring ones. But with this play’s special effects, you would have had no problem. Even dad didn’t try to sneak out!! After our trip, I got my learner’s permit. I’ve been driving for a few months now and I’m a pretty good driver if I say so myself. Wish you could see my skills on the road!
To continue the best month of the year, your birthday is December 21st!! Most of the time, this day was also one of my first days of Christmas Break. I was always excited to get to spend more time at home with you and I know you loved having another crazy kid in the house. The energy was always high in the Chapin house around this time of the year, with no school, birthdays, and Christmas to be excited about. Mom, dad, and I would walk into your room that morning, celebrating something much bigger than just a number. We were celebrating another year that we got to spend with you, something that we couldn’t be more grateful for. December 21st was a day to celebrate you and all the love and joy you brought into our lives. Leading up to that day, we searched far and wide for a Barney episode that you hadn’t watched (an almost impossible task) or a bedtime story that you’d love. We woke you up that morning and opened presents, hoping to give you the best day ever. For your tenth birthday, we went above and beyond to reach that goal. Hundreds of people attended “Blair’s Believe Birthday”, a party in our front yard with bounce houses, ice sculptures, and snow (reminder… we live in Florida). While you had lots of fun that day, all you ever needed to have a great day was family. Most years, we had family dinners at home to celebrate your birthday. This day of the year meant so much to us while you were alive, which it that much more difficult when you were gone. The first birthday without you, my parents and I took a trip to Vail, Colorado. While the fun activities we did there helped distract us from reality, you also sent us many signs that made the day so special. On your birthday, you sent us the first snow of the trip. As we drove through the mountains and I watched the snow fall, I couldn’t help but be taken back to your snowy birthday party six years earlier. This year, your birthday was more of a normal day for our family. I went shopping with mom on Park Ave in the morning and we had family dinner that night. I know that no matter how I spend that day, skiing miles from home or laying in bed, I’ll always think of your birthday energy, bringing a smile to my face.
The Christmas music starts playing in the Chapin house as soon as we bring home the Christmas tree. I’m sure you could always feel the holiday cheer in the air. While we’ve always gotten our tree in Orlando, we decided to start a new tradition this year. We went to North Carolina for Thanksgiving (with the dogs!) and got our tree there. We picked our tree and drove it home to Orlando. When we put up the tree at home… let’s just say it wasn’t perfect. Some might even say that our tree was a failure, but I personally enjoyed the experience. I can’t say the same for the rest of the family… but we all know who’s in charge here. We will be doing it again next year.
I missed opening gifts with you most this year. It was always fun to help you unwrap presents and just as exciting for me to see what you got. I was excited for you to get gifts but also wanted to see what toys I could steal. Hopefully, you never thought about where that one big, pink stuffed animal went… it was really soft and eight year old me liked it a lot. After opening presents, we would head over to the Chapin grandparents house, and then the Chicone grandparents. The more family time, the more fun for you. That family time continued as we all went to Boca Grande the next day. Lots of laughs and boat time made for an amazing week.
This blog is by Chloey Rudy, an 8th grader that I met while competing at the Florida Future Problem Solving competition in March. While many people were interested in hearing about my project, Chloey had a special connection. After telling her about the website, she shared her experiences as a… Read More
Yesterday, the Cure Sanfilippo Foundation launched an awareness campaign about my dog, Henry, and his relationship with Blair. My sister, Blair, and Henry were best friends and he misses her so much ever since she passed away due to Sanfilippo in 2017. Learn more about their one of a kind bond in this video and share to raise awareness for Sanfilippo Syndrome. Read More