April 25, 2012 - The day life fell apart for our family and the day this picture of Wayland was taken. We knew it was bad, but didn't know how bad until that afternoon at Riley Children's hospital. You have all heard our story before - DIPG was the diagnosis. An incurable brain stem tumor. There was a deadly brain tumor in our child's head and no way to heal it or take it out. We were given no plan; nothing but the stark reality of "12 months to live" and then sent home to figure it all out on our own. I cry as I write this because that reality is just unimaginable, but it was our reality. It is our memory and now Wayland too is a memory. Wayland's battle was fought and he lost.
There are times of the year when the sounds, smells and temperature of a season haunt me. The emotions of the past creep in and remind me that my pain is real and is still inside. I've just learned how to live with them, but the haunting brings on a new challenge of feeling and remembering again. April is no exception. The week Wayland was diagnosed, I was planting my garden, we had so much spring rain that month, and it was mild just like this year. We were up to the same activity this year - outside working on the yard, Amelia was playing at the park, and I wondered what it would feel like if Wayland was here to play with her. I wish I could see them grow up together, but Amelia has now lived longer without him. This month she has also physically aged more than Wayland. He was 4 years, 9 months and 15 days old when he passed. Amelia is 4 years, 10 months, and 10 days old. Amelia has surpassed Wayland's age. It feels so strange to see this happen. Experiencing so many firsts with Amelia when we should have experienced them with Wayland. It almost feels like we are in the twilight zone at times.
Oddly enough we were introduced to another family affected by DIPG this week. A little girl named, Phoebe. She is 3, the same age that Wayland was at diagnois. They are fighting the same battle that we fought. They are overwhelmed, discouraged, scared, and wanting to give their daughter time. They hope for a cure and a fighting chance for Phoebe. We remember what it is like, so little options to treat this deadly disease. That is why the "Wayland Villars DIPG Foundation" exists and why we still fight. We hate knowing that parents like Phoebe's are still told there is no cure, only the glimmer of hope that you can give your child time with radiation and maybe a clinical trial. So we will fight for Phoebe.
You can fight too. This Saturday, April 30 at 6pm we will host a Matilda Jane Trunk Show at our house and 20% of the proceeds will come back to "The Wayland Villars DIPG Foundation," We will give the money to continued DIPG research. It will be a fun night with food and drinks, a chance to shop and visit. Our cookbooks are still available and will be available that night as well. If you are not local to Indy or can't make the trunk show, you can shop online at www.matildajaneclothing.com, you can email me your wish list at email@example.com. If you get it to me by the time of the party, your purchase will count towards our grand total. What an easy way to fight for a cure - Simply by "shopping" for a cure! We want Phoebe's family to hear the message of hope that new research is there ready to help her. So please join us in our continued fight!