Wednesday Addams… a classic television character was the recent choice of a party we were invited to with an Addams Family Theme.
Wednesday, “the dreaded day” seemed fitting in many ways for Kelsey. The mention of the weekday sends a jolt of fear and frustration to Kelsey each week. We were surprised that she decided to dress the part, but being Wednesday “the worst day of the week” on Saturday made her smile.
Kelsey said that this was the first and probably last Wednesday she would enjoy talking about.
Wednesday on Wednesday does not have the same sentiment, but at least she found a way to smile for Wednesday (on Saturday).
Family is truly the epicenter of this foundation. Without the love, support, and generosity of our families, we would not be the organization we are today.
The love we feel from our family also lifts us up. We have met new families on our family support group site and pray for the families around the world afflicted with PAN and dada2. It is not always easy to digest the reality of this disease and the daily strife it causes for families.
Last week, we tapped into social media with another feeling; hope. We know that we are not alone in the rare disease community and we try to lift each other up as a result. Sometimes, when things get dark, you need to find strength in those around you.
A dear family member has been struggling with her own battle and for her birthday this year, she wanted to do something special for Kelsey’s Kaleidoscope, Inc. Inspiration can come when you least expect it. Though she already reached her goal, I invite you to view her fundraiser and want to thank her for spreading awareness and raising funding for our fight.
Love. Hope. Gratitude.
May your birthday wishes come true, Jessica.
Click on the link to see the cause or donate!
In a Field of Horses, be a Unicorn.
May you always be a Unicorn, following your spirit animal …
The bond between a brother and sister can be tough at times. Various interests, ages, and hobbies do not always create a harmonic environment. We work very hard to foster respect, love, and friendship regardless.
Kelsey’s brother worries about her. There is no question about that. Although he has seen her at her worst, he also sees her at her best. They compete, they laugh, and they play together at times in a way that warms my heart.
Every once in a while, I worry that he feels less special or just “less” because he does not have a medical condition that requires the monitoring and lengths we must go to for his sister.
Then sometimes, I really that he does understand and he is more concerned than I realize. He was reading a non fiction text and surprised me with the text from above. He said, “Mom, can you please read this?”
When I read about nanobots that can cure diseases, I stood still and listened. “Mom, do you think this could be the cure for Kelsey that we are looking for?”
“Whatever it takes,” I thought. Maybe someday big brother…
Here’s to hoping, wishing, and praying.
There’s something about a Sunday night outside. There’s something even more special about a Sunday night outside when your daughter says she has a surprise in store for you.
She grabs your phone and puts on There’s Something Special from Despicable Me 3. The lyrics, “there’s something special on the other side of this moment,” brings a tear to your eye as she comes to your side to hold your hand.
In my mind, the special moment is happening now.
She sways and sings with you for a minute before she releases and runs off. The moments are fleeting at times, but you still smile.
She runs back to you with six dandelions in her hands. “Let’s make a special wish, Mom,” she says and the moment now has you holding back tears from behind your sunglasses.
We each made two separate wishes and two in unison.
I will not write the wishes, but I am sure you can imagine what Kelsey wished for…
Something Special… indeed…
The power of a spirit animal is meant to depict a member of the animal kingdom that embodies and conveys your natural, wild soul. It also happens to be mentioned in a show Kelsey has been fond of recently. The title is Alexa and Katie and the series depicts two best friends, one battling cancer as a teenager. The show actually helps Kelsey feel better as she watches the struggles of these fictional characters. Though they are in High School, Kelsey finds a connection in each episode.
Thus, when we walked into Build A Bear for a birthday party recently, the struggle to select a furry companion was real. She contemplated and debated. She paced and wandered. She almost selected the colorful, rainbow bear like most of the other girls. And then, she saw the one.
The rainbow tailed unicorn, dressed in an ice cream dress was named Addison after the main character of Zombies. Before bed on the night we brought her home, Kelsey shared that Addison was, in fact, her spirit animal. She claimed that the free spirit and colorful tail of her new furry friend was indeed how she feels inside. Addison was “channeling her inner self.”
Unbelievable, I thought.
Though her imagination astounds me, I truly see the reflection.
When Anthony Urso and the Almoras join forces for a Pop Up charity event to celebrate Chicago the Chicago Cubs all while supporting Kelsey’s Kaleidoscope, Inc., the president jumps on a plane to attend the festivities.
We cannot thank Anthony Urso enough along with Albert and Krystal Almora for their support and generosity.
The clothing is incredible, the company is fantastic, and the support was overwhelming.
Thank you is not enough, but it will have to do for now
Anthony Rizzo, Albert Almora, Jr, and Krystal Almora pose with President, Mary Wagner, and Elizabeth Gregorio.
Anthony URSO family
Anthony Urso and President, Mary Wagner.
Field trips are a time for fun and discovery in elementary school. Kelsey went on her field trip today and her father was able to accompany her. He was proud to share the day with her.
Throughout the day, I received pictures and updates of the excitement. They had a wonderful time.
One memory from the day stuck out regarding inquiry and discovery.
The curiosity of snake venom led to a discussion with a museum employee. The knowledgeable exhibitor shared the common and less known uses of snake venom. It has led to scientific breakthroughs and enhances medication.
Kelsey looked inquisitively at her father after hearing these words and said, “Dad, snake venom helps make medicine. Did you hear that?”
“Yes. Very cool,” he replied.
“Snakes might help me with my disease someday? What do you think?”
A girl can dream…
Snakes… though I know little about them, I hope we can do better than venom.
Designer Bag Bingo ~ April 5, 2018
St. Charles Borromeo Church Hall * 175 Stagecoach Rd.* Sicklerville, NJ 08081
7:00 PM (Doors open at 6:00 PM)
$30 for 10 games, Raffle for baskets
If you bring your daughter to your office,
you will feel guilty.
You will want to make it up to her,
though she will happily explore the space.
If you bring your daughter to your office,
you will smile the next morning
when you read when she left for you to see.
If you bring your daughter to your office,
you will feel grateful that you did.
You will marvel at her thoughts.
You will savor the sweetness.
You will feel gratitude.
Spread kindness. Spread happiness. Spread love.
Though my girl steals my heart on a daily basis, I must admit that my son stole my heart on the day he was born.
He is serious. Though he is more reserved with his feelings than I, he quietly displays kindness, care, and thoughtfulness when you least expect it. His emotional caution makes me question my parental choices, and I always try to figure out what that handsome face is thinking.
He recently logged into his school account to submit an assignment. Though the task he logged in to create and submit was incredible, my heart broke a bit reading through his writing.
He always makes me proud, and I hope I tell him that enough. However, reading his free choice writing made me feel disappointed for my son and what he quietly endures. The two times he was asked to select a free choice narrative this year, he wrote about his sister and her disease. Of all of the topics and all of his options, he chose her.
His first writing was about the remarkable softball tournament the Britto Agency hosted in September. He wrote about all of the people who attended, the low skill set of our team, and the money we raised for Kelsey’s Kaleidoscope, Inc. He wrote about having fun.
In the second task, he described the day his sister was born. He wondered if he would ever be special again when he saw the attention she received. He discussed his sister’s disease, her hospital stays, and how the entire process is difficult for him at times. He assured me he feels special and that was just how he felt back then, and I will work harder every day ahead to assure that is the truth.
He is my heart, he is special, and today he is my Valentine.