Thursday, November 19, 2009

The beauty of our life..

January 29, 2009
Subject: The beauty of our life…

I recognize that my recent emails have detailed the harder parts of our life as we contend with the constant barrage of trials associated with cancer treatment. I fear, however, that I may have misled you little. It is no lie that the negatives we deal with on a daily basis related to Aria and the oncology clinic in general are massive. Sometimes they are overwhelming and daunting. Sometimes they feel all encompassing but I know they are not. It is exactly like being on mountain and suddenly finding yourself thinking of nothing but the mountain; how high it is, how steep, how monotonous, how lonely, how tiring, how difficult, how seemingly barren, how harsh and brutal. Then like magic, your eye catches a glimpse of a single rare mountain flower in full bloom. It's color and magnificence envelope your soul against this haunting landscape. You take a long look at this wonder-- neither disturb it or touch it. You let it be and you let in its essence. Suddenly, you are restored and somehow the mountain is less harsh, less lonely, and less difficult. You are reminded once again that it is so often the little things of life that have the greatest affect.

And so it is with me. Upon this mountain I call cancer, we have so much magic-- so many brilliant little moments. In the clinic on Tuesday surrounded by the brutality of raging disease, Aria and Rianna brought a smile to a mother filled with worry, not able to play, wanting to but not able. My girls were lions on a savanna and I was talking to this mother as they were growling at her and taking little lion swipes at her legs. I didn't want them to be too intrusive of her space, knowing that it's hard not to be playful around playful kids. It is the ultimate icky feeling. So as we were chatting I said, "Excuse me a minute. Lions! Oh lions! How about a juuuuiccccy......ZEBRA LEG!" and from my imaginary pocket I pulled out a beefy bloody zebra leg that those lions dove for and chomped on a while. She looked at me with a combination of utter amazement, amusement and confusion. I received a note from her later telling me how much she loved that interaction and I have to say, I was relieved. There’s nothing like being weird and then being even weirder and feeling completely self-conscious about it!

Yesterday, Aria was able to go to school and had an absolute blast. When I went to pick her up, she was so jazzed that she was, literally, running circles around my girlfriend, Shelly, and I. I haven't seen Aria do this in over a year. She hasn't had that much energy in all this time. Her joy was positively bursting from within her. She was giggling and I swear I thought I saw glimpses of glitter flying from her skin. The spirit of my Fairy Aria was in full form yesterday.

When Reo got home from school, Doc got all the kids ready to go outside and play on the frozen snow. We've had periods of thaw and freeze so the snow is hard-packed and easy to tromp around on. I stayed behind to clean up the library bathroom that Rianna had managed to flood. We hate this bathroom so any additional damage/demolition that we do now will save us time later. No worries! I was in the library watching the kids outside. Their bright snowsuits against the white canvas of our pasture was pure brillaince. Dazzling images of their beautiful bodies and spirits racing and soaring over the snow, running and frolicking with the dogs. Aria ran full steam to the far corner of our pasture and stood there in full glory and howled like a wolf! Rianna ran to join her and so did Reo. The three of them racing back to our yard running, leaping, laughing enjoying every single moment. The beauty of watching their childhood before my very eyes this way somehow makes up for so much hardship and horror. I don't know how that is possible but it is. Perhaps it is a deeper appreciation. Perhaps it is the sense that we have only these moments to cherish so they are best not to be ignored. Perhaps it is finally learning to grasp being present. Perhaps it is forgetting the mountain of cancer and enjoying this magical field of sunshine and play. Perhaps it is all of the above and none of it too.

Yesterday Reo brought home his progress report and he is doing exceptionally well. At this midpoint, he has already reached the year's end goal for his reading and he remains right on track for math and science. I just couldn't be more proud of this little guy. I am so proud and so in awe of him that a few weeks ago I noticed advertised in our local paper that Spokane was looking for outstanding children (K-12) to honor with a 'Chase Youth Award." I have no idea what this award actually is other than a means to recognize the children in our community that are working to make it a better place by their creativity, their courage and their resourcefulness. I nominated Reo and his nomination has been accepted and we'll see what happens at the award ceremony in March. I've included a copy of the nomination letter I submitted. I think this experience will be wonderful for the kids. They'll be able to hear stories about all kinds of kids from all over the Spokane area and I think this is a wonderful way to build a genuine sense of community. The fact that I had the extra energy and thought to go through with this tells me that I'm healing. It tells me that I'm better, that we're all better in spite of the fact that things still get really difficult. We are well.

Rianna continues to amaze me. She is starting to talk up a storm. It is still a lot of 2 year old alien speak that only the mother ship can decipher but I sense the language emerging. She had her well baby check Tuesday afternoon and she is just a perfect little person. She is high energy, inquisitive, the master annoyer and copy-cat. She is pure comic relief that is grounding and real. I am so proud of her.

The mountain is looming and large but the delicacies of Life are sustaining and uplifting. I carry on step by step because of it. Sometimes I see only the mountain, but then I catch a glimpse and I am restored and anew. ~j

Nomination Letter for the Chase Youth Award for Courage:

It is a great honor for me to sit and write about my son, Reo D. Layton who is 7years old and a first grader at Medical Lake Elementary School. Reo is an average little boy. He is neither a gifted student nor athlete. He has not rallied his peers for some community cause nor has he faced personal hardship that he’s found creative ways of overcoming. Reo spends his days like any other egocentric kid. Yet, he is extraordinary.

In January 2008, Reo’s little sister, Aria, was diagnosed with leukemia. Suddenly our family was thrown into a world filled with desperation, fear, crisis, anxiety and unknowns. Reo and Aria were very close playmates and overnight he saw her completely change. She spent days lying in a hospital bed with IV cords. She screamed in pain, begging for help, terrified much of the time. Reo did not comfort her outwardly. He didn’t stroke her hair or rub her back. But he did ride on her bed every time she needed an x-ray or when she was returning from surgery. He did tell her again and again, “It’s going to be ok Aria.” She believed him and so did I. He did pick out movies for her to watch and together they watched more television than I care to think about. He did entertain their baby sister, finding toys for her and ways to keep her occupied when we were quarantined to our room.

When Aria was released from the hospital and we began our life of outpatient treatments, Reo never missed an appointment, wanting only to be with Aria. In those first few months, our clinic appointments would last several hours, and although the waiting area and playrooms are exceptionally fun and kid friendly, Reo often sat on the sidelines and waited with patience, the likes of which I have never seen in a young child. He quietly watched and took everything in. I can’t remember a time that he complained or whined about wanting to leave and trust me, he had every reason to complain. He heard “just-a-minute” or “wait your turn” or “hang on” countless times. We learned that siblings of children with cancer are often called “Shadow Survivors”. This is a heart-wrenching reality and every parent I know does their best to make certain their other children aren’t left on the back burner. I remember feeling haunted by the idea of ‘shadow survivor’ and knew that if Reo had a role to play, the inclusion he felt would be immensely empowering in a very powerless situation. Reo became instrumental in helping us all celebrate the simple little mundane things of every day life. Suddenly eating a meal together was worthy of attention. Reading books, watching movies, telling stories, acting out movie characters, reviewing his school work, and helping with household chores became peaceful highlights in exceedingly stressful times.

It took over 10 months before Aria regained her strength, stamina and real desire for play that she once had. Reo stayed by her side and remained a silent presence that gave her healing comfort that I will never fully understand. Aria has had to go to the ER a number of times this past year and Reo has been with her all but once and that experience was revealing. His first grade teacher called to tell me that he was not himself and was worrying himself sick that “Aria is at the hospital. She’s ok but I’m not there with her.” We picked him up early from school that day and the brightness he brought into her room was blinding. The brilliance of their smiles and the relief they felt being together was breathtaking to witness. I don’t know that we can quantify the power of this kind of healing.

Reo is an exceptional young person worthy of a Chase Youth Award. He reminds us that sometimes the greatness of a person is the gift of their presence in relishing the ordinary things of life despite extraordinary circumstances. Sincerely, Julia M. Hayes


  1. Hi Julia,
    Just read your blog story....I know the mountain you talk of....I am glad you can see a glimmer of sunshine from the top. I hope you have had a chance to read Rene's latest blog. People are responding to the request to donate blood, as I had hoped they would. It would be glorious to see a "chain" radiating from the idea of "giving" and as some put it, giving of yourself in other ways, if not able to give blood. My daughter in law (Michelle) has just been told she may have a rare form of cancer. She is awaiting test results this week. She is only 29, and has given me 3 beautiful please pray that she will be able to overcome this "horror". She has had all the symptoms, been really ill the past yr., and they had not been able to figure out why until these last symptoms developed last week. I am so happy that Aria is doing so well....and you are right about your Reo....he sounds very special, his love for his sister(s) is very strong. Please know I will keep praying for Aria..and our Michelle.
    O'Dell M.

  2. I have a nice juicy Tapeworm noodle for you! Love, love, love your imagination.

    Reo is a Rockstar. Love you!