From a very early age, Kirby impressed us. She’s always brought joy to the toughest situations and inspired us as she overcomes limitations. This June, family and friends came together to watch Kirby reach an incredible goal: cruise across the stage to accept her high school diploma.
Photo by Katie Kenny Frisbie
Kirby with her Family
Once we started celebrating her achievement, Kirby’s long-time friends, Kathi and Rich (Nick – As Kirby called him) Brummet, shared a poem they wrote that brought the whole room to tears. Grab a tissue box.
Everyday, I take the train into downtown Chicago and walk nearly a mile to get into my Michigan Avenue office. Although some days I have to dodge the unruly cab driver, here or elbow my way through Union Station, the city’s beauty never ceases to amaze me.
However, what amazed me more was the passion Kirby’s special ed teacher showed toward her students. I don’t know if I could name another person who’d be willing to take a class full of wheelchair-bound students downtown on public transportation. Yes, that means loading all the students on a train, navigating through the bustling Union Station, and making that mile-long trek to Michigan Avenue. All so that each of these students could enjoy the beauty of Millennium Park. So, naturally I took the opportunity to step out of the office and enjoy the afternoon with her.
It felt so incredible to know that Kirby spends her days with a teacher who is so devoted to her students experiencing life like any other high school student. So, as I walk to work each day, I’m so grateful that Kirby is in the hands of a woman that helps her explore this beautiful city.
From the early days when we found only one researcher in the world working on a cure for Sanfilippo, to today when we face an exceptional opportunity, our mission to find a cure has never been more defined. Please join us in our mission to find a cure for Kirby and other afflicted children. We chose to fight this disease. Let’s take our biggest step together. Donate what you can, whether it be a dollar, five dollars, or one hundred. Then, tell friends and ask them to do the same. Help us to make a cure for Sanfilippo the next YouTube sensation.
This past week we celebrated Kirby’s 20th birthday. As the day approached, I couldn’t help but have some bittersweet feelings. I thought back to the story my parents tell about Kirby’s diagnosis, when the doctor told my parents, well, enjoy her while you have her. On that day, none of us knew what to expect or how long Kirby would be with us. After that day, we were all scared as to what the future may hold.
However, over the years we learned to celebrate Kirby’s achievements and shift our definition of success. We learned to celebrate all that we have learned from Kirby, and find happiness in the time we share with her. So, on April 15, 2011 we did just that. We celebrated with friends new and old.
Kirby gained a new friend, Abi who shared her passion for baking with our family. It felt wonderful to know that even a person who has only known of Kirby for a short time, wanted to make her day special. Abi’s Scrumdidiliumptious cupcakes filled all our bellies and really got the party started.
While in Kirby’s classroom, it was wonderful to see how hard her teacher, Jackie Gay worked to include Kirby in activities that other kids her age would enjoy. With that said, I must confess that after 13 years of competitive tennis, Kirby did beat me in Wii Tennis. But really, who would have thought that a special education classroom would have a Nintendo Wii and an iPad for the students to use in classroom activities? Kirby is truly in an amazing place. Jackie, also surprised us by giving Kirby’s wheelchair a birthday makeover, with pink sparkles everywhere. After that, Kirby really looked like a true birthday princess.
Kirby’s birthday celebration continued that evening with a pizza party and even more baked goods from our wonderful neighbor, Claudia. The evening’s celebration was wonderful as our whole family came together to just spend time relaxing with Kirby.
At the end of the night, I looked back on the day. It was incredible to see how many people came together to make sure Kirby had a wonderful day. Kirby had a house full of flowers, gifts and cards, a decorated wheelchair, baked goods from new and old friends, and a group of friends and family that were willing to do anything to make her day special. On that one day, I didn’t think a second about the uncertain future. All I thought about was Kirby, and I was truly happy.
Over the past few months, I have compiled a huge collection of photos of Kirby. I looked at the pictures of her in her younger years and saw a vivacious and energetic girl smiling back at me. I remembered spending hours with her, treatment letting our imaginations run wild as we made fun for ourselves. We had a connection that bridged the gap between sisters and friends, and our support for each other never waned.
As I continued to look at photos, I was saddened as I saw her body and brain deteriorate. It scared me to think about how much had been lost as the disease attacked her brain. Now that she is confined to a wheelchair and severely mentally handicapped, does she remember the bond we had? Does she remember all the fun and carefree time we spent together?
It was that fear that led me to think about faith. Not necessarily faith in God, but faith that when our eyes meet, she is remembering. Faith that regardless of the disease, she knows I am her sister and her best friend. Although a doctor couldn’t tell me for certain whether she has the mental capacity to remember, I must believe she does. That belief motivates me to continue to be the best sister I can be, and support Kirby throughout her daily fight with Sanfilippo. It has taken so much from my sister, but I have faith that it will never take away the relationship Kirby and I have always had.
This has been one of the busiest holidays for me – leaving a job, starting a new one, moving to a new apartment, leaving my family and friends, and throw a wedding, Christmas and New Years in there. However, amidst all of the craziness of the holidays, Kirby came through again to show me what they are all about.
They say Kirby is a “special needs” child, which makes one think that she is challenging to care for and keep happy. But really, Kirby loves and appreciates all the things that we overlook, particularly during the holidays. Kirby appreciates it when I get down on the floor to her level and hold her hand while I watch a Christmas special on TV. She appreciates holiday shopping trips with me. In fact, I bet she even appreciates the little sip of champagne she had from my mom on Christmas Eve. Her life is her relationship with other people.
So for the rest of the holidays, my focus is relationships. I have an opportunity to spend my last few days at home with all the people I care about. I am not going to let myself be consumed by the holiday chaos, I am just going to look around at how lucky I am to be surrounded by such wonderful people. Thanks Kirbs for showing me how to enjoy the holidays!