There are times in life when the highest honor, the greatest love is paid to another by simply bearing witness to his or her experience. Bearing witness is largely nonverbal. It is the choice to give the gift of a pure expression of love and respect — being a compassionate observer to the unfolding of another person’s life or a particular moment or event.
When we bear witness, we lovingly give our attention to the other without judgment. We comfort without smothering. We play a supporting role — powerfully upholding the other starring in his or her life. It is not about us. It is about them. Yet, we make a profound decision when we do not try to fix their pain and suffering or share in their experience by telling how we had a similar experience. Bearing witness says, “You are not alone. I see you. I witness what you are experiencing. What you are experiencing matters to me. I surround you with my love.” -Judith Johnson
From the looks of it, today is a beautiful day. The sun is shining. The air is warm. New life is sprouting up all around us… and all I feel is darkness, sadness, anger, grief, and a whole lot of nausea.
This time last year I was planning Lea’s six birthday party. A day to celebrate her life.
This year, we are planning her funeral and figuring out how to navigate her last days with us.
This week was filled with things my nightmares used to be made of. We figure out the funeral home we want to use. We sign a DNR. We meet with the pediatric hospice team. We figure out how to make Lea the most comfortable so she can die peacefully, without pain. They call this “end of life care.”
When I think about “end-of-life care”” I think about someone who actually had a chance to live. Their face weathered, worn and wrinkled from time spent laughing, smiling and crying. Their hair white from the aging process. Their stories rich from life experience and the wisdom and knowledge they gained from time spent on this earth.
It crushes me every time I see her former classmates skipping into school, excited for the summer to arrive, the pool, summer camp, vacation, and moving up to the next grade. It crushes me every time every time I get an invitation to another seven year old birthday celebration. I don’t think Lea will make it to her seventh birthday on May 25.
People tell me “I can imagine…” I assure you, this is far worse than anything you can imagine. Watching your child slowly die in front of you with absolutely no way to save them is a form of sick and twisted torture.
As a result of her rapidly growing DIPG tumor, the cerebrospinal fluid in Lea’s brain has no way to exit causing increased pressure, or hydrocephalus. This is causing her headaches, seizures, vomiting and nosebleeds at various times throughout the day, and will eventually be her cause of death. At the advice of our team of incredible doctors, we have decided not to intervene and let this run it’s course as it is the quickest and least painful for her. We have morphine and Ativan on hand, and the hospice team starts tomorrow.
I have decided not to sugar coat any part of this journey in my hopes to raise awareness, and in turn, research dollars, for this horrific disease. It also is therapeutic for me to get it all out there, in it’s rarest and truest form. I am not ok. We are not ok. And that is ok.
There are days when I experience the gut wrenching, soul shattering, heartbreaking feelings worse than others. There are days when I feel numb, not caring about much. There are days when I feel stronger and able to handle this, process it, and believe that we will be ok. Then there are the hardest days, when I want the world to end because it feels as if mine already is.
This morning, right after a seizure, Lea told Mike she felt like she was dying. We talked a lot about cancer, death, and heaven today. Lea is grateful that there are no shots in heaven, but maybe there is candy. I believe she knows what is happening to her, and this is her way of telling us that.
I am asking you to allow us to say goodbye, and not intervene or question our decisions. We don’t need a diet to try, or an experimental treatment suggestion, the name of this doctor, or that clinic. If there was something out there that actually worked for DIPG, we would know about it. We have made the decision we feel is right for Lea and our family based on our own research and the advice from an incredible team we trust implicitly.
Thank you for providing more ice cream than we can fit in our freezer, more flowers than we have counter space, and more food than we have room in our refrigerator. Thank you for the bottles of wine, soft stuffed animals, generous gift cards and kind words of prayer and support. You continue to bless us and blow us away by your love and support for our family and we are so grateful for you.
Anyone can show up when you are happy. But the ones who stay by your side when your heart falls apart. They are your true friends. -Brigitte Nicole
I believe in miracles, and I believe in the power of prayer. Please continue to pray for grace, mercy, peace and understanding.