There is something fantastic about being in NYC during the holiday season. It is a feeling you get coupled with a sheer sense of adventure and excitement that seems electic.
Walking through the city and Rockefeller Center with my family would have been special in and of itself. However, we connected with The Garden of Hope. They read aboutKelsey and her disease, and they offered us an extra special treat following our show.
The curtain barely closed as an usher arrived at our row to gather Kelsey, her brother, and her cousin. She led us straight backstage through the hustle and bustle of the crowd. Awaiting our arrival were two Rockettes. One was a veteran in her seventeenth year and one was a rookie. Both were beautiful, kind, and genuine. While they dazzled us on stage during the show, they certainly made Kelsey feel like a star.
Their grace, patience, and kindness warmed my heart.
Thank you to The Garden of Hope for spreading kindess and helping my little girl feel special.
Enjoy a video summation of Kelsey’s experience below.
I must admit, I was feeling proud and full of holiday spirit when I came home from my son’s wrestling match. I was so proud of his efforts and his determination. I sat down with a cup of coffee and a smile. I beamed with pride as I thought about how my typically stoic and serious son confidentally taught two Rockettes the backpack dance.
Feeling truly proud of my son made the news I read on the dada2 support group even harder to read. I cannot honestly say what made me click on it at that moment. Needless to say, my mood shfted immediately and the tears still stream as I think through what I read in disbelief.
With a very heavy heart, I read that one of the young men who suffered from dada2 was cripled in pain to the point where his body required a bone marrow transplant.
As we prepared and planned for our second annual gala, this young man prepared for the fight of his life. His November transplant felt hopeful. However, his body did not make it through the risks and complications of such a procedure. He passed away less than a month after his transplant and less then a week before Christmas.
The warmth of December and hope I have felt for an entire month were shattered when I read the news his family shared along with their frustration, confusion, and pain.
For this family and all those who suffer from PAN and dada2, this day is the one we cannot sit around and watch quietly. This day is the reason we write, we raise awareness, and we fundraise as fiercly as we can. This young man’s battle will not be forgotten nor will his family’s grief.
This one is for you Trevor. May your family find peace in the New Year as I am sure they feel void of all emotion as this year comes to a close.
Tonight, Kelsey cried herself to sleep in fear of Mr. Needle and her Wendesday Woe. As I consoled my child and prayed for answers, I also felt a mixture of gratitude and anger for all that I know and all that I cannot understand.
It can be difficult to slow down during the hustle and bustle of the holiday season. However, I find that is what we need right now more than ever.
We try to mix in holiday fun, quiet reflection, and a sense of gratitude for all that we do have in our lives every chance we have to do so.
At times the balancing act of work, play, and family can be a challenge for us all.
I think back to this week six years ago when I held a febrile child void of energy in my arms. She was nine months old and she was in need of serious medical attention. Docs convinved me it was teething. I was easily persuaded because I wanted to be. I wanted balance and I wanted to believe.
Standing in the doctor’s office demanding more, demanding testing, demanding results was not easy. It took bravery and perserverance.
The sixteen days we endured in the hospital following that moment were even harder.
Finding courage, finding strength, and finding balance in all things has taken effort then and now.
Kelsey’s disease helps us evaluate priorities, give thanks for blessings, and pray for balance in all facets of life. We pray for answers and we pray that we connect families and help others so that balance can be found.
I hope this holiday season helps you find comfort, balance, and love.
While going about our bedtime routine, Kelsey asked me what was on my Christmas list.
I chuckled and said that the health of my family and friends were the only things I would write on mine. That is the truth.
She giggled and said, “Is that more important than hot new toys?” Then she thought about it for a minute and said, “I guess it is. Is it ok for kids to want the hot new toys, though?” as if she was speaking a ToysRUs commercial!
“Of course it is. Adults want children to have the hot new toys that make them smile,” I replied.
After another few mintues and a conversation change, she brought me paper and a pen. On it, she wrote:
My mom wants health for her family and friends. Maybe you could take away Mr. Needle, too?
She said all I needed to say. Santa, now you officially know my Christmas wish.