Tear Soup

Tear Soup

So here I am.... still learning how to handle my emotions, my grief, and my pain. I struggle because I try to assume the role of pretending I am “okay” because that is easier for people to deal with, it’s an uncomfortable space to be around someone who is suffering. I want to protect the people around me by being strong and putting on a brave face. I don’t blame anyone for this because it is just part of who I am. Whenever I am happy or laughing or find a moment of peace I am so appreciative. I want to cling to it, so it does not disappear.

So the blog has sat quiet. I haven’t been able to find the words. I have been feeling unsure if I have anything to say anymore. I have been in a dark place, not a place I wanted to invite anyone in to join me. I like the quote, “if you don’t have anything nice to say, say nothing at all.” Well, that is essentially how I have been feeling. After Evelyn went to play with the angels, I mentioned that I was leaving the blog for her, to remember her and that I would not post often, occasionally for Evelyn Grace Foundation activities and other random thoughts from me. So, today here are some random thoughts from me.

There is a children's book called “Tear Soup” - A recipe for healing after loss.

I’ll quote a few paragraphs from the book, to give you an idea how I have been feeling...

“She put on her apron because she knew it would get messy,

It seems that grief is never clean. People feel misunderstood, feelings get hurt and wrong assumptions are made all over the place.

To make matters worse, grief always takes longer to cook than anyone wants it to.

And then..

Grandy started to cry.

At first she sobbed.

Sometimes she wept quietly.

And sometimes when she was in a safe place where no one could hear her...

she even wailed.”

I’ve noticed that some people disappear........some people don’t and those bonds and friendships grow stronger. It is a sad truth, often we don’t just lose our loved one, there is more loss and destruction as the journey unfolds.

I am missing my baby girl so much. I think about her constantly throughout the day, when I go to bed, thoughts and images of her run through my mind and when I wake she is my first thought. Sometimes I replay the difficult days over and over. I can still remember so vividly how I felt walking along side her crib as we went to surgery for yet another lumbar puncture with chemotherapy. As I walked along holding on to a piece of her crib, passing people in the hallway, they would give that look of pity and it made me so sad. I know their intention was good, but I remember thinking, is this really happening? Then I would walk alone back to her room, down the long hallway of the 3rd floor hematology oncology unit - entering the quiet room, empty without the crib and beeping monitors. I would sit and cry in disbelief every time. Then, about an hour later, I would hear the voices of the surgical nurse and anesthesiologist pushing her crib and monitors down the hall toward the room. I would hear her cry. I could recognize her cry a mile away. I was so happy to see her but so devastated because I knew that was not the last time. I knew life would never be the same. All I wanted was for Evelyn to somehow miraculously beat this disease.

Thoughts replay over and over in my mind of Evelyn’s final days and hours. It haunts me. I see visions of her of swollen face and body, the shallow breaths with long pauses in between each breath, wondering was that her last, then a great relief when she would inhale again. I can’t turn it off in my mind, I lay in bed thinking of her. Was she in pain? In my heart I know she was being consumed by that warm beautiful glow from heaven? I felt it in the room. It was truly miraculous how she waited for everyone to arrive- flying in from all over the country. She was so strong, even facing death, she waited for a calmness to descend upon the room. Everyone so exhausted after 3 days of being awake, they scattered about to catch a few minutes of sleep. It was just she and I cuddled together in bed, my breath with hers and I listened and held her close until I drifted off to sleep and then her beautiful little spirit floated away.

A few weekends ago, on Father’s Day, I went to the beach to relax and read a book on a sunny weekend afternoon. As I was riding my beach cruiser towards the ocean, the breeze in my face, it felt nice and I appreciated this life, the fact that I could get on my bike and go the beach for a few hours, that I was lucky enough to do that. When I settled on the sand, I thought of Evelyn and how I had envisioned her first time at the beach. Last summer as she lay in the hematology/oncology unit fighting for her life, that was supposed to be the summer I dressed her in her first pink baby bathing suit. The summer we watched her play with the sand in her fingers, dipped her cute little toes in the water for the very first time. So I had images of all of this going through my mind. I watched another couple with their baby, down by the water taking pictures. Then I thought of my Dad and I wondered how different life would be if he were still here. I said a little prayer and thought of my Dad and Evelyn together. I could see my Dad making her laugh and carrying her on his shoulders as they walked along the waters edge of a beautiful beach in heaven.

Okay, now I am crying tears the size of Texas. I hope this is good therapy for me.......

Why is cancer a monkey on my back? Am I destined to lose everyone I love to this dreadful disease? Today I was at the Veterinary Cancer Group of Los Angeles. My dog, Yogi is kicking cancer’s ass right now! He was diagnosed with a soft tissue sarcoma about six weeks ago. He is being treated with 22 rounds of radiation. We are taking him to the radiation oncology vet in Culver City 5 days a week for 4 1/2 weeks. Each time he has anesthesia with radiation to the region where the sarcoma was surgically removed. I thought of Evelyn as I sat in the waiting room. I heard a few dogs whimpering today and it made me so sad. Again, I said to myself, “REALLY?” Now I am watching these dogs come in and out for their chemotherapy or radiation treatments. It’s hard to find words to describe the feeling. It’s just sickening! If cancer were a physical object, I would become a raving lunatic, pulverizing it with every ounce of my strength. The good news is Yogi is battling his cancer like a champ. He is my first baby and we are not about to lose him, so we fight on!

I still have the “WHY” moments. Just when you think it can’t get worse....

A new low...how did this become my life? Why did this happen to us? Why was Evelyn taken away and by such a cruel and vicious disease? Why did she have to suffer? Why Why Why? But then I get a grip and realize there is NO ANSWER. I can’t torment myself with a question that has NO ANSWER!

Maybe if God came in stood in front of me and asked, “Why do you think?” Perhaps I would feel compelled to come up with a response... I would say, “It happened because we are mortal and bad things just happen sometimes for no good reason but it has given me a feeling of grace.” Not just any old grace, but the kind of Grace one receives from the despair of watching your child suffer and ultimately die. That pain brings you to your knees, as there is nothing in this life that is worse.

So because of God’s Grace, I am hopeful for brighter days. I see life so differently and for this I am grateful. It is bizarre that from something so retched and awful you can learn and find something good in it. Everything in my life has new meaning, new purpose and clarity. I am blessed that Evelyn brought so much good to the world in her short time. She helped parents love and cherish their children even more. She brought people together, to unite and fight against pediatric cancer. It is my hope, that through the Evelyn Grace Foundation, you will continue to remember her, honor her battle against leukemia and fight on for other children and families affected by cancer. This is the Grace that has been bestowed upon us, to offer love, kindness, mercy and favor to serve others through Evelyn. This is now my journey.

In closing - more Tear Soup.......

“I’ve learned that grief, like a pot of soup, changes the longer it simmers and the more things you put into it. I’ve learned that sometimes people say unkind things, but they really don’t mean to hurt you.’

“And most importantly, I’ve learned that there is something down deep within all of us ready to help us survive the things we think we can’t survive.”

This is Life. Whatever is done to us, whatever happens to us, we must face it. I am trying my best to face it with grace, to be strong, and to make a difference.