As summer winded down, we were able to soak in a beach day. The sun was blazing and the calm surrounded us. Kels wanted to try to catch a wave.
The surf was (happily) light and little movement occurred within the ocean. As her typical self, perseverance kicked in and she waited patiently. Kelsey asked her mom to watch her in the water. Of course, she did. Though she had to wade in the cold awaiting her wave, the excitement Kelsey felt with each lost wave and each thumb’s up upon her fall was captured warmed her mother’s heart.
After at least thirty failed waves, Kelsey caught the wave.
She rode it into shore beaming ear to ear.
Her mother’s calves were frozen, but Kelsey surrounded her mother with a huge (and ice cold) hug regardless.
Kelsey continued to tell her mother about how long it may take to catch the right wave, but how it would always be worth it.
Lessons learned and absorbed right there on the surf.
Kelsey’s wisdom, perseverance, bravery, and patience never cease to amaze us.
Stay strong and catch the wave. It will always be worth it, according to Kels.
Kelsey’s school has a wonderful evening where students create a business plan, make or create items, and sell their items at a marketplace. It is a fantastic experience for students and a highlight for the community. This year, the event returned and was held outside on a gorgeous spring night.
Kelsey and her cherished friend created a partnership and sold two creative items. At the end of the night, all proceeds went to Kelsey’s Kaleidoscope, Inc.
It is our family, friends, and circle of support that keeps us moving forward.
This weekend, Kelsey attended her first wedding. The stunning bride and her handsome groom are family, and the occasion was very special for each of us.
Filled with emotion and joy for the couple, we realized how long it has been for a family wedding overall.
Perhaps it is because Kelsey resembles the bride or just because Kelsey was present, but for a few moments, a conversation returned to make the day even more emotional for our family.
When Kelsey was two years old and we were still unsure of her body’s pain, we had a specific biopsy planned. It was scheduled for an upper thigh lymph node. However, when we met with the pediatric surgeon for our pre-surgical visit, he started reviewing her neck and talking to us about how he would try to use a natural fold in that area.
Young and afraid parents, we remember vividly asking a naive question about the scar and it’s constant reminder of Kelsey’s battle. “What about her wedding day,” we questioned.
He turned to us and said one the most powerful responses of our lives. It was a statement that changed our perspective overall.
“Keep in mind, our goal is to get her to see her wedding day.”
Our efforts remain strong and progress for her disease has been made. When Kelsey has great days and weeks, it is easy to want to forget about that day.
We can never actually forget that line nor our commitment to that milestone and many more…
A lifelong dream of Kelsey’s mother and advocate has been to write a children’s book. Her dreams have turned into reality with the support of the president of Kelsey’s Kaleidoscope, Inc., Mary, and the artistic talents of Krystal Almora.
Please consider supporting Kelsey’s Kaliedoscope, Inc. with the purchase of José Saves the Day. The story is one of understanding and acceptance of an allergy injection for children who endure life-threatening allergies. A Halloween setting makes this the perfect addition to your library this fall.
To all who face life-threatening allergies, stay brave.
This fall, with the world at odds and isolation orders increasing by the day, our family made the decision to keep Kelsey safe as a remote learner. We were uncertain, we were unsure, and we were scared. We can only imagine that so were her teacher and all of the school staff involved in making the decision to offer fully remote instruction.
Kelsey is social by nature, the helper in class, and an engaged learner. How would she learn from a computer? How would the teacher engage her students? How would she cultivate friendships and a sense of community? How would this work?
We trusted our educators and we believed in Kelsey. We spoke positively and openly when struggles emerged. We learned about her classmates at dinner and watched new friendships develop in breakout rooms and snack breaks.
We watched confidence soar in reading and had a difficult time keeping her bookshelf stocked. We watched a social child happy across the screen. We realize there were imperfect days and moments, but we watched a year on a Chromebook provide access, conversation, and content.
In-person projects were mimicked or recorded, and remote classrooms were also considered as part of the school.
As we close this elective remote year, we reflect often on learning leaps and gains. This year has shown a year of resilience and progress for Kelsey. We hear about the challenges many have faced this year, and we are grateful that our choice for remote instruction was a gift for Kelsey. We appreciate her teacher and all efforts made to effectively teach our daughter in a way we never thought possible before 2020.
To educators everywhere, we thank you and we appreciate you.
Be brave and enjoy your well-deserved break ahead!
Mark Zuckerberg, Facebook Founder, and his wife, Dr. Priscilla Chan, committed to the challenge, “Can we cure all diseases in our children’s lifetime?” Daunting. Amazing. Fantastic idea! Can they do it? Here is to #hope…
On Monday, the couple announced one step in the right direction to conquer the challenge set forth in 2016. They will offer grants to 30 recipients to advance research, training, and awareness. Of the 30 selected, the dada2 foundation is one of the recipients to benefit from this large grant along with other resources over a two-year time period.
Wow. We only hope our small community of dada2 patients grows and the resources lead to a cure for our girl and the many others we know with dada2. Here is to hope and generosity in 2020…