Saturday, August 22, 2009


June 16, 2008

Subject: Fun

Saturday morning (June 14, 2008) around 7am Doc called to tell me that Aria's ANC was back up to 270! I was still in my pajamas, the kids were still sleeping but I would have jumped in the car right then and there racing to pick them up if Doc had wanted me to. We were absolutely beside ourselves. Aria had just woken up so he suggested I be there in an hour. For the next 30 minutes, I basically paced with excitement. Aria coming home meant that she would be able to jump in the castle too and that thought just made my day. Doc called just as I was leaving and mentioned that she was going to get one more antibiotic before leaving so it would be another 30 minutes. I decided to go to the farmer's market and score some amazing things and then head on over. I was able to show a few vendors, who know Aria, her picture and it was wonderful to take in just how much people are thinking of her and keeping her in the light of their good thoughts. It is a powerful thing. I made it to the hospital at 8 30 and they were already packed and ready to go. We were home by 9 am and by the time we drove into the driveway, the jumping castle people had arrived too (2 hours early no less!).

The jumping castle was set up in the backyard immediately and I thought both Reo and Aria would lose their minds. They stood there holding hands, watching the thing inflate, which took all of 10 minutes. Before I knew it, we had the thing wiped down with anti-bacterial wipes and they were jumping away. You would never have known that Aria had just been in the hospital! They bounced. They flopped. They ran. They climbed. They 'slided'. (as they would say). The peels of laughter....the squeals of delights....the giggles....the screams of joy.....the bright red all went on for hours and hours. At one point, I was still doing some chores making ready for the party and I found myself closing my eyes just listening to them allowing my spirit to bask in the glow of their fun.

We took a few breaks before the party started at 1 pm but not many. I was in awe. Our friends Amy and Bethany, who have been babysitting the kids for years, were driving by at one point and I can only assume saw the castle. With spinning tires and a slight screeeecccchhh of the brakes, they ran out of their car and into the castle with the kids. Aria, Reo and Rianna were in heaven!

Oh, yes, Rianna was in the middle of it all too. That little monkey was able to climb a nice steep ladder herself and slide down the slide. I caught her out of the corner of my eye going down the slide and was about to panic when Doc told me that she'd been doing that since first climbing into the thing. That child is incredible. She wasn't the least bit disturbed by the big kids and the fact that she lost her balance every other step. No, no. There was just enough room on her face for the enormous smile she wore the entire time. Obviously, we kept a hawk's eye on Aria. I was worried but quickly recognized the need to find some balance. The polar questions and thoughts muttering in my mind were unobtrusive but persistent.
"You know Julia, Aria just got out of the hospital. Be careful with her. Don't let her exert herself too much. She could get over-tired easily and maybe sick again. Sick, sick, sick. Germs, germs, germs."
This was countered by, "Yeah, yeah, yeah. Isn't being able to just be a kid an important part of healing? Isn't joy and laughter medicinal for her spirit and sense of well-being? Look at her. She's in paradise and doesn't seem the least bit tuckered, weak or sickly. Don't you think she'll let us know when she's had enough? For heaven's sake, let her go and have fun. Let her be a kid. Stop hovering and worrying. She's fine. She is truly a marvel to behold. Pay attention to what you're supposed to learn here."

I heard that one and heard myself say aloud, "What?" That last thought sort of snuck itself in there and definitely caught me off guard. "Pay attention to what I'm supposed to learn here?!" I wandered around for a long time with that thought ringing in my ears. It was a light thought, a good thought, a surprising thought and a challenging thought. I loved it and smiled full of joy and peace.

Half a dozen kids showed up with their parents and played for a few hours. It was tremendous fun. Reo was overjoyed to see his friends here. He was a wonderful little host, which for those of you who know him, is a big deal. Reo is a solitary bashful kid, so this was very big for him. He positively stunned me when he rattled off the names of at least 10 other kids who didn't come. I could tell that he was disappointed because he has really wanted to see these kids. After a brief conversation about it, he was off pouncing in the castle again. He mentioned not having all the kids from his class here more than once so it made quite an impression but I don't think it clouded his fun in any significant way. Our neighbors and dear friends, Tata, and Papa G came while their youngest daughter, Ally, joined in on the fun too. Ally watched Rianna and Aria while the party was going on. She had arrived home from her freshman year at college the day before so I recruited her help immediately. She is absolutely incredible in every way and I am so grateful for her help.

The party was over around 3 o'clock and most of the kids left with sunken shoulders and pouty faces, which is always a good sign! Nobody wanted to leave!!! That's the goal here; create such a good time that everyone leaves in tears! I'm hoping they'll be back in a few weeks for Reo's birthday party. That should be really fun too. The rest of the day was spent cleaning up and playing. As soon as the kids left, Aria and Rianna came back down to jump some more in the castle. We wiped it all down again and for the next several hours that is where they were. There were no major mishaps; a few scrapes and scratches and a couple of rug-type burns but nothing more than that. It was such a grand time.

Naturally, I was thinking about what I was supposed to learn. I was sort of waiting for the answer to hit me as if the answer was circulating before me patient in its desire to be noticed. In reality, it wasn't like that at all. Instead, the afternoon was spent considering many little bits of awareness that made up the larger focal point of learning called "balance." There were so many well balanced aspects to the day that created such harmony in my mind.

+Aria is very sick BUT Aria is so well that she can play for hours in a jumping castle and have fun. Joy and laughter contribute immeasurably to her healing.

+The demands of hosting even a small gathering are great and even greater with the added layer of having just spent a few days in the hospital BUT I had so many people helping me and supporting me without whom, the gathering would have been a real challenge.

+Reo wanted more of his friends to show up BUT the smaller gathering was actually perfect, intimate and wonderful.

+I still can't have fresh cut flowers in the house BUT I was able to have vases on the tables outside. I caught glimpses of them all day long and that alone made my spirit soar.

+We were tired BUT we were at ease.

+We have had 5 months of tremendous stress, worry and concern BUT on this day we had an almost complete respite from that anxiety.

+It is sometimes hard to escape the profound horror of the human experience and the massive scale of it BUT this small collection of beautiful souls celebrating the joys of children created goodness that is so much greater in some ways than the sorrow with which we are inundated.

Balance, I continue to learn, has nothing to do with examining the larger features of life but rather the little ordinary ones. The little simple things that when I allow myself the pause, fill me with awe and gratitude.

The other day, I was walking into the house and I noticed on the step where a fairy, given to me by my Aunt Sue and my Uncle John, sits. She is such a pretty little presence and has been in several places around the farm trying to find a more permanent home. She found it on the front steps and she has become a lovely little fanciful guard. I noticed on her toes a large brown fuzzy butterfly. I was so taken by its presence that I sat down for a moment to say hello. The following day, there were 2 butterflies on her toes and my front step was a very happy place. It has been the perfect balance to the darkness that has been looming there for the past few months.

It is worth mentioning here that I could not have had the weekend I did without the love and support of 2 of my 3 dear and cherished Goddesses. They cooked, cleaned, cut flowers, played, played and played some more, took pictures, cooked and cleaned some more. They were pure joy for me, which gave me a whopping dose of "ahhhhhhhh" to face this next few weeks. They are true friends inside and out. My wish is that everyone I know can experience a friendship such as I have with them. I have said to them and to others that it isn't so much what they do for me, although in this instance what they did was enormous, it is who they are that is so healing to me and those around me.

It is now Monday June 16 2008 in the afternoon and it is again a glorious day. Aria's counts were not high enough today for us to proceed with her next phase of treatment. This is not a surprise. We'll go back on Friday morning and hopefully her counts will be high enough to move forward. At that time, she will be in the hospital for only one night, provided she tolerates the new chemotherapy well and then we'll be going to the clinic on a daily basis for the next few days. I don't know what happens after that. I've learned not to look too far down the path. It is a waiting game now and we are anxious and excited.

I was telling a friend that it feels like I'm about to summit a peak, although I have never done such a thing in my life, so I really have no idea what facing a summit is actually like. But what I sense is what I imagine it would feel like. The anticipation, the excitement, the nerves, the fear, the need to fulfill something so close to achieving... that is where I feel we are now. The peculiar thing is that I don't suspect the 'descending' journey that all other summits require that are equally treacherous. Rather, I sense we are on the verge of a plateau of sorts; a new elevation, a new view, a new way to live this life. I can't tell you what a remarkable feeling that is to imagine. I know we have yet a steep slope to climb but the maintenance treatment that we face is this nice plateau. In no way do I imagine descending to what we used to know and how we used to live. We are forever changed and altered and not all of that is negative. It simply is.

As I think about enjoying this week, our first week of summer vacation before this last phase of intense treatment, I am filled with happiness and tremendous hope. It is no coincidence nor is it a small thing to say that Saturday with Aria home and our jumping castle filling the farm with child-like ecstasy made me aware that for the first time in 5 months, death was no longer at my front door. ~j

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