I always knew that without a cure, my sister’s time with us would be limited. And with this inevitable loss of my sweet Blair, there would be a funeral. While our family always aimed to think positively about Blair’s illness, this is the only detail about the end of her life that came to my mind often in the years before her passing. After all, as a little kid, all you know about when someone dies is that there’s a funeral. I learned this early on when attending relatives’ funerals but for some reason, I always imagined Blair’s differently. She was a crazy, energetic kid… she wouldn’t want her funeral to be like theirs. Blair wouldn’t want a dark room full of sad people wearing black. Instead, she would want it to be a celebration of her life because parties were her favorite. When I was younger, I had dreams about what it would be like. For some reason, part of me felt obligated to make Blair’s funeral everything that she would want it to be. Several years ago, I had a dream that I stood at the entrance to her service and passed out a sheet of lyrics to each of the kids. Then, I walked up the stairs to a stage, sat down on the piano, and began to play “A Thousand Years” by Christina Perri. One by one, all of the kids stood up and walked to the stage, singing along. The only thing that Blair loved more than parties was music. Years later, as I sat next to Blair in her final days, I remembered this vision. I asked if I could create the slideshow of Blair to play before her service. I worked hard to make it perfect and when I started to put the photos to music, “A Thousand Years” was the first song that came to mind. As the six songs that we chose played on my computer over and over again while I edited, I’m sure Blair didn’t mind. She knew her final “party” was in good hands. This was the strange part of Blair’s funeral, how we were preparing for it when she was still alive.
Writing my speech, at Blair’s bedside.
When I told my parents that I’ve always wanted to speak at her service, they were surprised. I sat in Blair’s bedroom and the words just flowed out. At the time, I thought I’d be the only one speaking in my family so I knew it had to be perfect. My dad ended up speaking too and we both took the time to tell funny stories about our funny girl.
Choosing a venue, at Blair’s bedside.
The only thing that we knew about the venue is that it would have to be big. Blair inspired more people in 15 years than most do in a century. All of these people would want to attend her funeral and show their love and support for our family. The only venue that would meet these requirements in our area was somewhere that I went every day… my school. At first, I thought that this would make the next year and a half on that campus miserable, being a reminder of what I’ve lost. Although this day wasn’t about me, it was about Blair. My video production teacher ran the slideshows and several of my teachers went to the service. Lake Highland was such a big part of Blair’s life, even though she didn’t go to school there. My parents chose the school because they knew I would be taken care of when they were focused on Blair. In first grade, I had my first fundraiser at school to raise money for Sanfilippo. My class and I sold awareness wristbands and it became an annual event. Once a year, my school showed their support for Blair. Year-round, my close friends and teachers showed their love for Blair. The day before her service, the whole school wore purple. So in the end, Lake Highland was the perfect venue.
Shopping for dresses, at Blair’s bedside.
Everyone wore purple, not only the MPS awareness color but also the color of Barney. As I looked around at the sea of purple that day, I thought of one of Blair’s favorite Barney songs.
“Oh, the loveliest color that I’ve ever found
Is purple – perfectly purple!
I see it everywhere if I look around
On a perfectly purple day!”
That’s exactly what it was… a perfectly purple day. I woke up in the morning surrounded by family. When everyone was ready, we all packed into two cars and took the same route I take each morning to school. I was nervously reading over my speech and wondering exactly what was to come in the next couple hours. My parents and I waited in a classroom as friends and family began to arrive. They all sat down to watch the slideshow, emotions running high already. All of my closest friends greeted them and passed out programs at the door. Blair adored them, so it was important that they were apart of the service. More of Blair’s favorite people took the stage to begin the service. Her babysitters gave the readings, family friends sang a song, and before I knew it… it was my turn. My nerves disappeared once I started speaking and the story I told about thinking Blair was a spy broke the silence in the room. Everyone laughed and I felt like I had succeeded, that’s what Blair would have wanted. I knew she was smiling down from heaven. After my speech, another slideshow played; this one was photos of just Blair and me. I chose the song “Breathe” by Taylor Swift because the lyrics matched my emotions at that moment.
“Music starts playin’ like the end of a sad movie,
It’s the kinda ending you don’t really wanna see
‘Cause it’s tragedy and it’ll only bring you down,
Now I don’t know what to be without you around
And I can’t,
After the service, I could breathe again. Blair’s funeral felt like the end of a significant chapter of my life. This day was also the beginning of a new chapter, one which is dedicated to discovering who I am without my sister. No matter how many difficult decisions I have to make during this next chapter, Blair will always be there to guide me. April 8th, 2017, is a day I will remember forever as the ‘perfectly purple day’ in celebration of my sister’s inspiring life.
Watch Blair’s memorial: (my speech is 11:20 – 18:00)
Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store flood my mind. Read More