The things I know now…
Once we know something we are forever changed… forever aware. Once we know something we must share it, change it, fix it, prevent it, encourage it… whatever that situation needs… but we must not sit and pretend we don’t know it.
I remember when my girls were young and Madeline’s little boyfriend got VERY sick, he had E. Coli poisoning. It was a very memorable and scary moment in my life, he was so sick… and to go to a hospital and sit in a cafeteria and console his mom and to have no idea what it was like to be on the other side of that- but to know I must do something. That day I learned about PICU’s, Ronald McDonald Family rooms and a little bit of how to help a friend with their own ‘worst case scenario’- I became aware that children can die, children can get very sick and that I must change. From that moment on we became St Jude’s Donors, I gave blood (double red) every time my date came up and I tried to find way to help more. I knew that I could never be ok with myself if I knew that these things can happen to kids and I didn’t help… I knew that I could never be ok utilizing these resources, after knowing they were there, if I did not support them when I had it good… I didn’t even know how good I had it.
I became aware.
As many of you may know, September is Pediatric Cancer Awareness Month. September is a whole month dedicated to raising awareness for childhood cancers and what they do to a child, family and community. September is a month that, I believe, needs more people who are aware.
I was once a mother to 3 healthy, beautiful girls… that licked everything, shared sippy cups with kids and dogs and one time even licked the floor at Walmart. I had 3 very healthy little ‘Musto Chicks’. I had no idea that one day I would wake up, take my daughter to the doctor and then the Emergency Room… no idea that our Madeline would get a CT Scan and MRI that night… that I would sleep next to her and wake to a room full of Neurosurgeons telling us that our daughter had cancer. Our lovely, beautiful and unique- HEALTHY- Madeline had DIPG, Diffuse Intrinsic Pontine Glioma… a long way to say a rare, inoperable brainstem tumor that would take away her ability to function, speak, run and all too soon to breathe and live. Our daughter had cancer.
I am now VERY aware of what Pediatric Cancer does… what It does to the child that undergoes painful and sickening treatments and surgeries that would knock an adult our for a year… I am now VERY aware of the fear that those parents have every single scan or test- every bump or bruise… I am now VERY aware of the difference in family- loss of income, separation while treated and the emotional drain it is on a life. I am now VERY aware of the resources available to children, families and the lack of them… I am now VERY aware of the fact that many of these children die.
My family will always be ‘missing’ our Madeline… on this journey I have met so many others who have to miss their lovelies for forever. We don’t sit though. We move, we work- we will change this. We are all working to raise awareness, to share our stories and show people. We want you to know… we want you to move, change, create, tell and support. Across the country there are so many working to change this- to share the signs and symptoms, help families find a net to stay above water in these times and to raise money for funds to get new treatment. Most of the Childhood Cancer treatments are the same ones from 30 years ago… hard to believe that in this world full of medical miracles we are leaving behind tomorrow’s doctors, researchers, teachers… geniuses… we are losing our most valuable resource in this world.
Here in New York, around the Capital Region, we have a group to work with families, raise awareness and Go Gold in September… We are the Capital Region Childhood Cancer Coalition, CRCCC. We are a group of mountain moving, VERY aware people, we are all changed, very personally, by Pediatric Cancers.
Please check out our webpage (www.CRCCC.co), and if you are local to Albany, NY, area please come out and support us. If you aren’t local, find a way to share, to create awareness and know that you are changed- you are forever changed.
Erin is wife to Matthew, mom to three lovely ladies- one of which just happens to be an angel, a real true angel. Her daughter, Madeline, became an angel in February 2012 just 5 days after being diagnosed with DIPG, a rare inoperable brainstem tumor. Most days she chases her lovely ladies, Amelia and Lucy, around as they grow, play and learn. She loves running, being with family and friends and writing.
Her family has worked hard to create Maddie’s Mark Foundation to honor her lovely Maddie and to help other families faced with challenging illnesses. In all of this Erin became the President of Maddie’s Mark and makes it her mission to share Maddie and her spirit forever. The foundation has helped her family start to heal, meet families they needed to meet in this journey and remind the world to enjoy a life of ‘best days ever’.
Erin loves to write. She finds much therapy in writing her thoughts and sharing what she has learned. She used to pride herself in knowing much about life and mothering… but feels that life and living and mothering have changed- that she has a bigger grasp on understanding life and living and parenting on her new journey accompanied with grief.