Today marks the end of Kelsey’s first grade school year. We have seen her soar with confidence and wisdom this year. It seems she has also learned to dream big. We will always encourage her dreams and hope to help her reach them.
Author: New View for PAN
Birthday Wishes
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!
Tucked Away in Dreams
The end of a school year is near. This end mark is causing reflection, pride, and accomplishment in our household. Though we are weeks away from the close, my children seem particularly anxious about the last day of this school year.
Along with the kindness and respect my children have gained by their experiences this year, wisdom is also evident in their daily instruction. The lessons of the year are adding up to a sum of happiness and joy overall.
These lessons do not come without disappointment, too. Whether the disappointment is missing a question on a test, a conflict with a friend, or a scheduling dilemma, disappointment comes when we care the most.
My son and daughter went to bed feeling disappointed tonight. Sadly, Kelsey was saddened by her peers not understanding her disease (something she brings up almost daily before she closes her eyes). My son was disappointed in a scheduling conflict.
Neither felt satisfied with our parental responses though we always try our best to explain matters in clear terms.
A part of love, however, is resolution and though our conflicts may continue to exist in the morning, our fears and emotions are tucked away in dreams for now.
In a field… part 2
Artistic talent and creativity are two gifts I admire. When those two gifts are combined with thoughtfulness and kindness, the possibilities are endless.
A caring colleague saw Kelsey’s take on the phrase that matches her spirit animal, Uni, last week: in a field of horses, be a unicorn.
She took it upon herself to create the above image for Kelsey. I was beyond touched by the gesture and the beautiful image that now captures Kelsey’s new catchphrase.
Kind and caring individuals surround us every day. I am grateful to work in such dedicated and sweet community.
Thank you for depicting Kelsey’s image, inspiring her artistic talents, and reminding her that prayers and thoughts extend beyond her imagination and her dreams.
We will frame this and hang in a location of Kelsey’s choice.
Kindness…pass it on…
In a Field of Horses…
In a Field of Horses, be a Unicorn.
May you always be a Unicorn, following your spirit animal …
Teacher Appreciation
There are many amazing facets of my daughter’s teacher this year. She is thoughtful, kind, generous, and loving. The students in her room feel loved, appreciated, and special every day they are in her care. You sense it in the room and hear it in the children’s words.
This weekend, Kelsey came home beaming with pride over the “special” day that would happen on Wednesday. Though it may have been an absolute coincidence to couple stuffed animal day (she’s bringing her Spirit Animal, of course) with a snack on Wednesday, the fact that this would be happening on Kelsey’s needle day made her smile all weekend long.
“This will give me something to smile about in the morning rather than cry my eyes out as usual,” she said, loud and clear.
To all of the teachers who brighten their students lives with thoughtfulness, empathy, and dedication, I thank you.
Mrs. P, YOU have been a remarkable influence on my daughter’s life this year. It is no surprise she idolizes you, but more than that, you have given her reasons to smile often, inspired her curiosity, and fostered an environment that respects all learners.
Mrs. P, YOU ARE OUT OF THIS WORLD!
Mrs. P, we are grateful for you and all you have done this year for our girl.
Nanobots
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.
Strength
The brave words below are from a young woman with dada2 (Kelsey’s PAN is a manifestation of dada2). She is an inspiration to me, and I am proud and honored to share her words with you. Thank you, Anna Maria.
My name is Anna Maria. I’m 24 years old and in February, I had a bone marrow transplant. I can say what I experienced and what I live by myself. In July 2017, I was told that I had to undergo bone marrow transplant therapy and that I would have no other solutions other than that.
I found myself facing two paths: one was to decide to continue in the disease which would soon bring me to death, or decide to fight for a living and then undergo the bone marrow transplant. If I am still here, it is because I have decided the second way. When I was told all this, I was very scared because it meant postponing my degree, university exams, enrollment in specialist university, the carefree age, the outings with friends, and many other things.
I cried a lot, then I told myself that without health and the transplant, I would have renounced all these things and much else, I would have renounced life itself. In short, I would have faced a few years, always spent in hospital to feel bad. While with the transplant, I would have made some sacrifices in this first year, but then I would have had a beautiful life and I would have enjoyed all the things I lost.
So with courage, I took this choice or the choice to live. I immediately understood that it was an important step in my life and I am very happy with this choice. I will always keep it in my heart and I will be able to tell it to others. Of course now my path is not finished yet. I’m halfway, but I can tell you that I’m very well. I came to a point where the white blood cells were no longer produced because the lymphocytes had taken over. I suffered from very strong vasculitic episodes. All these problems had invalidated my life, I was not really well.
Transplantation is the best weapon currently available to eliminate vasculitic episodes due to DADA2 and is strongly necessary, if not indispensable, to refurbish the immune system. To give courage regarding the issue of hair loss: I obviously lost them too, but if I have to be honest, I find myself much more beautiful like that!
After about two months from chemotherapy, my hair is already growing back. We who face all this, the pain, the suffering, we are special, and we are brave. This gives us a march more than the others. I can tell you that I’ve never been so happy in all my life.
There’s Something Special
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…
Spirit Animal
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.
