Sometimes I sit and stare at Kelsey in amazement. I am continuously amazed by her beauty, her wisdom, and her poise. More often than not, it is because aside from being truly dazzled by the fact that she is my daughter, I am in amazement that she could possibly have this hidden condition that so few people can truly understand.
Dr. Chip Chambers helped explained the terror or the rare disease dada2, which manifests as PAN for Kelsey, at our Second Annual Gala. I will share his speech in the near future, but one of the sentiments he shared has particularly stuck with me.
How would you feel when your five year old is having strokes and the doctors cannot tell you why or tell you what to expect next?
Having lived through that pain while my daughter was three and living that question on a daily basis, I can tell you the answer. The answer is fear of the unknown, fear of what you will wake up to every morning, and fear that you are not and have not done enough as a parent.
For those of you who attended our Gala, thank you from the bottom of my heart. No parent wants to live in fear or to feel helpless for their child. Your support, generosity, and love helps my family feel more hopeful than helpless.
We doubled our efforts from last year and will continue to fundraise, speak out, and help anyone else who finds themselves affected by PAN and dada2.
Our Third Annual Gala will be even bigger and better. Save the date, November 23, 2018.
Gratitude and generosity seem to find us all a bit more in November. Talking with Dr. Chip Chambers of the dada2 Foundation about his visit to our Second Annual Gala this week put a great deal into perspective for me.
Partially, the severity of Kelsey’s diagnosis hit me as it does when we start to talk about it more frequently. It’s easier to keep it hidden and hide the worry. Then we learn about other children, other patients, and feel both sadness and gratitude to be facing these challenges in 2017 with the variety of support around us. We are reminded of the fierce mission of both Kelsey’s Kaleidescope, Inc. and the dada2 Foundation.
Friday will be a night full of insight, festivities, and fun. Above and beyond the event, the support and love we feel from those who follow us is incredible.
Thank you for your contributions, your prayers, and your support. We are truly grateful.
If you are coming on Friday night, get ready for an open bar, food stations, gifts-a-plenty, and country line dancing. The room will be set, the photo booth ready, and your presence will mean the world to us.
At six, I cannot imagine the complexity Kelsey feels at times. Explaining to her that we needed to take pictures of her brain was a challenge. I tried to explain the “boo boos” that have been noticed on her brain and how we wanted to monitor them and make sure that no new ones appeared.
It was hard to get those words out.
Then we took a risk and thought we would try to approach the test without sedation. Kelsey is brave and strong but laying for an hour calm and still at six seemed daunting. We gave her the options and felt relief and worry when she choose to approach this sans sedation. No IV, no pain from another needle made me less anxious, but still at six years old…
I sat and watched her sweet little body lay there for one solid hour. She was calm, still, and patient for the duration. She did not move once.
To know she understands.
To know she was brave enough to do it.
An unsettling finding leaves worry, fear, and the deceptive face of PAN as a fresh imprint on the brains of those who know worry most.
We pray. We hope. We are still.
Please join us on November 24, 2017 for our 2nd annual Gala. Tickets can be purchased here.
Rosemary Connors and NBC10 @Issue, we thank you once again for your dedication to issues that matter most in the Delaware Valley. We were grateful for the time, grateful for your assistance, and grateful for giving our organization a voice.
An overwhelming week it has been. The truth is, the high of earning a segment on @Issue with Rosemary Connors this weekend on NBC10 was a true highlight. The professionalism of the entire experience was truly impressive and the incredible support we have received as a result are overwhelming. When you have a bright spot, you want to celebrate it and savor it.
At first thought, I wanted to share all about that with you. My initial thoughts were to describe the lights, the sounds, the excitement of TV and having a show care enough about our issue and the international mission we hope to tackle. It was truly an experience.
However, life with a rare disease takes you to emotions that vary. When medication is not issued and you feel a point of frustration that you cannot actually put into words, you feel more helpless than words can describe. You cannot understand how a true need can become a transaction, and you cannot describe the anger, frustration, and emotion that goes into the phone calls you have to make. Though you know it is a business, it also happens to be your life.
As you hang up filled with tears and check Facebook for a dose of reality, your son puts his hand on your shoulder. The “reality” you hoped for was happy family photos or uplifting messages. Instead, you read about Manhattan and your son reads over your shoulder.
You cry unsure as to why. You cry for all you face. You cry for all you hope. You cry for all you know. You cry as you pray about the change you hope to see in the world so that you can once again smile like you mean it.