Celebrating the holidays with our second family at the annual Jack's Kids Holiday Brunch!
Phoebe being a Jack's Kid has truly meant the world to us. They opened their arms and welcomed us into the Jack's Kids family. When they said "we've got you", they meant it. They offer love, compassion, support, and encouragement through every step of your journey. On the good days, the bad days and every day in between. Reminding you that you are not alone.
Christmas is a time to celebrate family, and we are so blessed to have the Jack's Kids family to celebrate with every year!
Happy Thanksgiving from our family to yours!
Our family tradition is to get our trees and decorate them! There is nothing like the fragrance of pine tree floating through the house!
There is nothing more magical than beginning the Holiday Season at Disney World! Mickey's Very Merry Christmas Party has become the time of year our family looks forward to the most! It combines two of our favorite things....Christmas and Disney! Being on Main Street watching Santa arrive in the snow, meeting Princesses in their holiday attire, sampling special holiday treats, walking through the decorated Trail of Trees, seeing the Castle adorned in glistening icicle lights and getting once in a lifetime memories captured in special magic shots! Disney is magical every day, but Christmastime at Disney....that is when you see the magic is truly limitless!
This year, a photographer knew Phoebe was a fighter the minute he saw her. One look and he knew exactly what magic shot would best depict her roar!
Happy 9th Birthday to my rare gem! Phoebe, for someone so young you have the most unwavering courage and strength I have ever seen! You greet each day with wonder and amazement in your eyes. Always seeing the magic and possibilities that exist. That is such a special gift, my sweet girl. One I hope you never lose. I look at how you go through all that you do and you inspire me! You are teaching so many people along your journey and giving a voice to rare diseases everywhere! You are a champion, my little fighter! I am honored to be your mommy! I love you puddin!
Ready to Roar in 3rd Grade!
Phoebe is so excited to start a new school at LCS. Especially with the teachers she has this year. Her main teacher and her support teachers are all amazing educators who not only want to help Phoebe feel more confident with her school work, but also want to include her in as many activities as possible by making accommodations for her health and safety! Even on field trips!
This is a huge relief to us, especially Phoebe, because she doesn't want to miss doing these fun things with her classmates and friends. While she knows there are things she cannot do and there are limitations that her body has, she so desperately wants to be like everyone else. Knowing she will have more chances to participate this year, because of these accommodations, has made her very excited and ready to start this school year!
Phoebe has had 1 wish since watching the movie Moana...to meet her. To see Phoebe's strength and determination to have this dream become a reality is inspiring. Leading up to this meeting you could see Phoebe struggling, scared her health and limitations were going to keep her form meeting one of her heroes. But nothing was going to stop her from meeting Moana. And today, when she finally did, you could see the fire ignite within her soul.
In a world full of doctors, tests, hospitals, and unknowns it can be easy to grow tired of the fight. To feel you will never have the answers you need. But in meeting Moana, you could see the fire burn bright through Phoebe's eyes. It doesn't matter how many times she has heard "I don't know", she will keep going until hears diagnoses, treatments, options, and policies that help her and the entire rare disease community.
*You can meet Moana at Disney World only during Mickey's Not So Scary Halloween Party and Mickey's Very Merry Christmas Party. We met Moana during the Halloween Party and as you can see, Phoebe dressed up as Moana
Today we were invited to participate in the Hillsborough Rotary Fair's Family Day for families of children with special needs. This day is one the girls look forward to every year. For a few hours they get to experience the joys and excitement of a fair that has made sensory adjustments so everyone can enjoy the games and rides.
Our township police officers held a National Night Out event this evening. Because we have received so much support from them and the other first aid responders we couldn't wait to go show our support for them. Upon walking up to the event we saw the local stables had set up pony rides. Pony rides are one of Phoebe's favorite things to do! She loves the grace and beauty of the horses. And to be completely honest, she is obsessed with unicorns. Horses are the closest she can get to a unicorn in real life. So if she gets a chance to ride one of these majestic creatures, she is jumping at the opportunity!
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.