My Emotional Wall

It all started Christmas Eve four years ago. The day our lives changed forever. Over these years I have built a solid wall that protects me emotionally. You see, I am that person. The one who cries at a song or a movie or a video of a soldier coming home. I am the one who cries with you at the funeral and sits next to your broken heart mirroring the action in my own heart. I have always felt deeply. The day that I had to leave Emma in the OR for brain surgery I knew my time with open emotional spending had come to an end. Although it is a blessing to wear your heart openly you cannot go into war without armour. So I built a wall and inside my fortress I could protect myself...until the wall springs a leak.

Our car was PACKED!

Yesterday we were at Stanford for appointments and our annual toy donation. In the days leading up to that day I knew that bad news was coming from Jenna about Ari. She is rarely silent and in our world I know that silence after a scan means you had bad news and you are either processing or trying to find the next step. We don't share right away because that begins the flood of text messages and Facebook Messenger alerts with well meaning people asking too many questions. Questions you cannot answer, answers you do not want to give. Sometimes we do not want to talk. So when Jenna stopped talking I started building. Up goes the wall higher and higher preparing for battle.

We dropped off the toys with a team of amazing social workers. Their smiles and gasps of awe in the amount of toys was heartwarming. It was our largest donation in these three years we have made it our mission to bring cheer to our fellow warriors. I left the hospital with

Our largest donation to date!

an empty car and prepared for the long hours of Bay Area traffic. About four hours later I was finally home and poured myself a glass of wine. Since I rarely drink I have no tolerance. When the first tear fell I realized that the wine broke down my wall as I was surrounded by a flood of emotions. Suddenly I was sobbing and could not stop.

We walk hand in hand with death. Emma and I have sent several balloons into heaven to our friends who left before us. We have books on hand to read to her about death, we have coping mechanisms, we have greiving down to a science. But what do you do when it hits too close to home? When it is someone you have talked to and shared deep thoughts and feelings and opened up to about the darkest moments? So much of cancer is dumb luck. You lost the genetic lottery. Out of millions of people cancer picked you and your family. No amount of clean eating or prayer could have saved you, it was just dumb luck. Sometimes I think I must be the most unlucky person ever. There is another level to our grief, on the surface we grieve the unfairness and horror and loss that surrounds the early death of a child and friend. Under the surface we grieve that it could have been us. We know that it could have easily been our turn and that someday it might be us. That scares the shit out of me.

Many of you have turned to me asking what to do, what to say. You think I have the answers. I don't. I have never watched my child die slowly from cancer. I am lost too. I can only tell you what I know from those who have gone before me; give the family space and offer solid support (examples are meals, gas cards, and monetary donations) do not bother them with questions but instead ask people who know them for an address and just deliver it. Make sure meals are able to be frozen. Do not ask questions, do not bring God into it (offering prayer is fine), do not tell them what you think will save them (Cancer moms are the most fierce researching team you will ever encounter), and do not under any circumstances ever, ever, EVER tell them to pull the plug. Jenna said yesterday that a friend who lost her child to the same cancer told her not to mourn her while she was still alive. Let's let Ari live and do not treat her like she is already gone.

Jenna if you read this please know we will do anything to help that is within our capacity.

For now my plan is to get myself together so I can be strong for Jenna and offer support. If I hear of any specific needs I will pass them along. Thank you so much to everyone who has helped us help Ari, you truly are the best community of Emma supporters! We love you all.