I walk the same path of amazing and strong parents who have lost their children to DIPG and other rare Pediatric brain cancers. I see what the future looks like for me. Those behind me, I am a storyteller, advocate, someone removed to help guide families through life and death decisions.
I see and hear the optimism that their child may be the one. The child who will beat DIPG. We all hope and pray.
I see and hear the terror and indecisiveness families wrestle with. How do parents want to manage their child's care and well being. How do families before, during and after cope and manage the loss. CANCER DOES NOT DISCRIMINATE.
I see thousands of children's pictures, (who are suffering from brain cancer) taken by families...meeting celebrities, thumbs up, big smiles, community rallies, road races. Childhood fantasies lived out over 15 Months vs Normal 15 years. I see faded smiles of fearful parents. The uncertainly regarding the amount of time these families have left with their wonderful children. It is all consuming. I see the innocence of children who believe they will recover and the secrets families hold onto in and effort to protect their child about the inevitable loss they will have to forever live with. I see families with regret and many without. Did we do enough? What could we have done differently? Reliving their past and hoping for a better future.
I see the painful aftermath of families who create alternative lives with startup foundations, working tireless to raise money, evangelize their children's memory and maintain a level of engagement with the cancer community for if not, then the fear of the loss will be real.
Families who suffer great loss need to hold on to something. Something that reminds, that comforts, that honors. Something that prevents the inevitable. There is nothing more tragic than not only losing a child but losing the memories families make as though the life together was a blur. Families NEED to hold onto old memories and NEW memories that maintain the connection between them and their child.
So what can you do to truly help...
Never Forget - Remind these families often how much their child is missed or what impact their child had on your life.
Donate - When you donate to a families foundation...yes, the money is used for all the right reasons but additionally it provides something more tangible. It provides proof that their child's existence was real and it matters. Many families see the growth of their foundation like the growth of their child. The more it grows...the more proud they become.
Wear it on your sleeve - often families and foundations create tee-shirts, write books, create bracelets, hats, mugs, or other logo items that bares the foundation and Childs name. Please consider wearing or displaying their child's name. It needs to stand for something.
Volunteer - parents look for communities to offer their time and support in an effort to grow their foundation or event. Please consider being part of the mission. It may be a simple ask but the gesture will go a long way.
Smile - the worst thing a parent wants to see is a community member come up to them and ask "how are you doing?" with a said face or simple touch. Parents are very much aware of their situation. They don't want pity. They want normal. They want to hear about your day, normal everyday community affairs. If there is something that is relevant about the loss of their child or foundations business, be straight and direct. They are used to hearing the facts.
That was then...this is now - My son Zachary has been gone for the past 2 years. Prior to that, weekends were filled the jovial Sat nights, possible martinis at 6:00 pm and dinner at 7:30. It amazes me how often the things we used to do seems less and less important. Plans change as often as the wind. Daily activities trigger flashbacks that could change the mood In a moment. This behavior is not by design. Whether 2 months, 2 years or 20 years, the behavior changes in parents are fluid.
It will take time. Time for families to edge back to a new norm. Reprioritize what is important. Redefining what the new norm is. There is no playbook how to manage and cope with the loss. Just remember....whether you are part of the journey or watching from a far...parents think and remember everything. We are consumed by the past, present and future. The one thing that we need consistent is the reminder our children are not forgotten. "It takes a village."