Wednesday, May 20, 2009

Those first few days

Tuesday January 15, 2008 will remain a vivid memory for me for some time I suspect. It isn’t something I dwell upon but it is something I keep rather close to me. It is a part of me whether I want it to be or not and by keeping it close I feel as if I can honor the journey we have been forced upon. When I adopt that perspective it helps me remain open to the many, many people on similar journeys and thus I can honor them, too.

Still, it took me several days to sit down and document the sequence of events of that day so consumed was I with trying to find ground beneath my feet.

As we prepared to take Aria to the hospital and confront head-on such an enormous fear I remember having this image of playing the game “chicken” and riding in some kind of vehicle knowing full well that I was not going to be able to turn away at the last minute. It was this constant gut wrenching feeling driving closer and closer to the hospital knowing impact was imminent. I remember coming off the elevator and seeing the sign “oncology” and just wanting to run away and vomit somewhere. But I couldn’t. I had to stay and go in. It was as simple as that. I had no choice but to face the enormity of what I didn’t yet understand and in a very perverted way, this made moving forward and going through those doors easier somehow. I didn’t think about what would happen if I didn’t go. I simply knew I had to and so I did.

I suppose that moment offered my first lesson in dichotomy, opposites. Opening those doors to the clinic in an instant symbolized opening a new world for me. When I heard the click and clatter of the metal on the doors it boomed in my head and I knew the crash had happened. I was devastated and crushed with the impact but at the same time I was well. Going through those doors was the hardest thing I have ever had to do in my life and it was also the easiest thing to do. My mind was reeling with thoughts and worry. I was terrified. My mind was also completely void and open to whatever was going to happen and I was calm in an eerie ‘the storm’s-a-comin’ kind of way. There was no stopping this train and I was on for the ride.

When we were admitted, I called my parents. I told my mom that we were in the hospital because, “Mom, they think Aria has leukemia.” ‘They’, nurses, doctors, specialists and support staff, were still these suspicious people I didn’t know but sort of trusted. I wanted to be surrounded by them and at the same time left alone. I wanted to hear what they had to say but at the same couldn’t help but think, “If one more person comes in here with pity and understanding, I think I’m going to scream!” The teetering emotions I had were like nothing I had experienced before.

My mom was in tears and I could imagine her fumbling for a place to sit. The shock of it is like flipping a switch. One minute the light is on bright and then ‘flip’ darkness pervades. One minute, life for her was full of purpose and direction and in an instant she was helpless, scared, sad, and just plain horrified.

I remember feeling sick to my stomach for the entire day. I was thirsty and yet a drop of water in my mouth was always threatening to turn my gut into a heaving eruption. As I sit here remembering I can’t escape my mind, which is saying, “God, I hope I never have to experience ANYTHING like that again!” I feel compelled to remind my mind that if I had to, I would, and regardless of circumstance or outcome, I would be fine. I know that now. I’m reminding myself but at the same time, I hope I’m reminding you, too.

We arrived at the oncology clinic for a 1 30 appointment and I didn’t leave the hospital until 8pm that evening. I took Reo and Rianna straight to bed and joined them. It wasn’t until the morning that I wrote to a few people before heading to the hospital to tell them what was happening. My emails then lack the narrative they have now. I was in a place of disseminating information and didn’t have a real grasp of its weave. So I sent out threads here and there describing what we were doing.

The first email I sent was to my Goddesses. I had asked my parents the day before to call my brothers and sisters and anyone else they could think of. It was so overwhelming that I hardly knew where to begin.

January 16, 2008
Subject: My Aria…it is bad news

Goddesses, forgive me for writing this news in an email but I'm so numb right now... It looks like my Aria has leukemia. After some blood work that was done on Monday, we got a call yesterday that she needed to be admitted to the hospital immediately...had an appointment with an Oncologist yesterday too. She thinks, but the tests are not definitive yet that Aria has the most common kind of pediatric leukemia, A.L.L. it is treatable and in most cases cure-able. You have no idea how I am just hanging on to that right now. Today, at 1 30 she goes in for a bone marrow biopsy. She will be under for that procedure and we should have the results soon..later today, tmw, I don't know...then she will begin rigorous treatments....We will be staying in the hospital for at least 2 weeks, maybe less if everything goes exceptionally well but longer if she starts to develop a fever, which is very common. I came home with Reo and Rianna last night and slept here. Doc stayed with Aria..Tonight, we'll see what we do. We are staying in a room where we could all be there.. I don't day at a time. I'm trying to maintain the homefront and give Reo a little sense of normal by keeping his routine and going to school and so forth. The pit in my stomach is so huge..I am so sick to my stomach. I'm trying very hard to find some courage here but right now I am absolutely reeling! Please keep us in your thoughts and I will keep you posted when I can.
Much love, ~qg

Once the news about Aria got out, it spread like wild fire. Suddenly emails were flooding in and the phone rang and cards came in the mail. It was incredible and the diversion it offered was immensely healing. The expression of love, prayer, hope, perseverance, understanding and the like was all tremendously powerful.

January 16, 2008 (from my mother-in-law)
I don't know what to say except that we are very, very sad and know that your hearts are breaking for our precious little girl. Already many people are praying. We're praying for Reo and Rianna too. They must be very stressed in their own way.
We'll be waiting for further news today. Wish we could be there with hugs and shoulders to lean on. As I said last night, if and when we can be of help, there is no reason we can't come and quickly.

January 16, 2008 (from my twin brother and his family)
Julie and Doc – Papa gave us the news about Aria. We are sure you know this, but we love you guys and are sending our warm wishes, prayers, and love to all of you. We are here for help and support with whatever you need. We would love to come see all of you and help out in any way we can. But we understand a bit of space may be what you prefer right now. We will call this weekend when I return from Wake Island and am back in Anchorage so Tina and I can both be on the phone. We love you guys so much I can’t even begin to express our anguish over this news and the depth of our hope that Aria will receive the treatment she needs for a recovery. If you need anything, absolutely anything, no matter how big or small, please let us know. We love you and will do anything at all to help in any way.

January 16, 2008 (from one of my Goddesses)
Queen! Im holding you... Much much much love, I’m at a loss for words and am so relieved they caught it. Jeannie will call you because she knows someone who totally recovered from this. I know the process is HELL right now because no feeling, just the hanging on..and that's what you can do. Surrounding you with light.

It’s strange but very early on I felt this weird kind of heightened awareness. People would say things or do things that didn’t feel right and rather than cringe in silence I tried to let them know how things affected me either positively or negatively. It was my way of encouraging people NOT to second-guess themselves and to simply say and do whatever came from their hearts. One of my goddesses sent me this picture and it was too much for me. This is an email I wrote to her about it.

January 16, 2008
Dear Goddesses!! Thank you for sending this picture..this beautiful reminder of joy and delight!! It is a little too much for me right now and makes me incredibly I'm going to delete the message...PLEASE don't take any offense..that's just my gut reaction right now.. I have this picture too and will one day very soon want to look at it again..for now, I'm in such a foreign place and learning all kinds of new triggers. PLEASE don't hesitate sending me more pictures, thoughts, words, poems etc..etc..anything that strikes you at the moment...don't worry about how you think anything will make me all feels wonderful and horribly sad at the same time..the last thing I need is any hesitation on your part for fear of my feelings, which are all over the place right now. I rest so comfortably knowing how much you love us and care for us and keep us close so I know that anything and everything you do comes from such a pure and wonderful place. I am SO SO grateful for it!!

I'm off to run to the grocery store and then pick up Reo..will let you know more when I know more. Doc was visiting with a family support person this morning to talk to us about hair loss, balding and so forth. I'm so sick with sorrow, I don't even know where to begin. One voice is telling me to be strong..and another is saying "release...let it out." I'm thinking very deeply about balance, which you know is so key to my very existence...I'm also thinking about letting go in terms of control and my illusion of is another thought.....I can't wait to see Aria and hold I'll go now with that thought!

I love you all so very much and you have no idea the kind of life line you hold for me!

My goddess’s response to me was, naturally, of complete understanding! She reminded me that she needed and wanted the picture for herself as a daily reminder of healing and well-being. She just sent me the picture again so I could include it here. This is the first time I’ve looked at it since and it fills me with such overwhelming joy. The promise and the hope that I sense are immense!

The next few days were a blur and I remember just flowing with it. Whatever I was told to do, I did. It was a deluge of information and newness and I was simply trying to stay afloat. I began writing in earnest the moment I felt like I had found a foot-hold. How people come to that place of security, I’m sure varies. When people find that place also varies, so there’s no advice I can offer in that regard. What I can tell you with complete confidence is that you will find that place. You will feel as if the ground is beneath you once again. You will see your direction. You may not want to go, but you will because you must. You may stumble and you may falter but you will continue on. You will have significant times of doubt and insecurity coupled with many moments of confidence and assurance. This is all part of the journey, whatever that journey is. For me the journey was just the beginning.