These events really do appear out of nowhere, which is what makes living with the always looming, always lurking presence of them difficult. I suppose I’m getting better at going with the flow of it but I have to say that the constant, weird, and very real threat of something happening that presents in the form of a million pesky little worries, “Is Aria warm today? Does Aria look ok? Aria, are you sniffling and feeling alright? How’s your throat today?” is mind boggling. It would so different if this was happening to me. I’d be able to instantly notice when something felt off. I’d quickly learn to anticipate reactions to drugs and know what to do. I think the anxiety I would have would be different and perhaps even a little less. The fact that this is happening to my daughter and I can’t feel what’s going on inside her body to help me know how to react and act is a challenge.
I can’t help but wonder if you are reading this thinking, “Well of course Julia! Duh! How can you not be worried? Isn’t that called vigilance and being a good mother? Isn’t that what it’s all about—you know, staying one step ahead of the game?” I would agree with those thoughts entirely. What I’m referring to when I question my anxiety is what it means to live in the moment. When I’m anxious, I’m more than likely not in the moment. I’m in the ‘what if’ moment that is fiction and not present. When I’m not present I’m not centered. When I’m not centered I’m not my best self. When I’m not my best self, I’m not performing at my best.
Aria, Reo, Rianna and Doc deserve my best. You may be wondering, “Jesus! What a load of pressure you’re putting on yourself! You’re no super woman.” I would heartily agree. I’m not. I am, however, privileged to have these beautiful children and husband, who as I’ve said, deserve the best of me. More importantly, I deserve the best of me. I’m not healthy when I’m anxious and neither are you. I’m not at peace and it is precisely in times of crisis that peace is so healing, so necessary and yet so often out of reach.
I’m not suggesting that I deny myself the real worrisome aspects of this journey. There are plenty to keep me well occupied. What I don’t need are things to worry about that aren’t real but are simple manifestations of anxiety. These are things that complicate life and I can go there very easily. For example, in this email I go on about Aria and Kindergarten, worrying that she won’t be able to handle it. Kindergarten is nearly an entire year from when I wrote this email. You and I know that so much can and will happen in that time so why worry? But I did because I attached all kinds of ‘what if worries’ to the real worries I was presently contending with.
This is how it happens. Real worries and concerns arise and then suddenly they take on new shapes and forms that fling me into a world of my imagination. I find myself completely nervous and unable to enjoy the moment. I’ve lost my sense of peace. I detach from those around me. I lose my sense of compassion for a moment. I become more self-absorbed. These are not healthy things and this is not how the gift of Life is to be lived.
I am getting better at identifying when this process starts to happen. I'm getting better at stopping myself and bringing myself back to the moment. I am able to live comfortably with knowing that what will happen a year from now is a complete unknown. I’m comfortable knowing that how my day will unfold is also an unknown. I’m thrilled at the opportunity to watch it happen, rejoicing in each and every moment of it.
This, my friends, is a process. It has taken me a long time to learn how to live this way. It is simple and not always easy but I swear to you, it is true and full of purpose. (September 2009)
December 3, 2008
Subject: Aria is off to the ER!
Here we go again! Aria climbed into bed with us around 3am and Doc asked if she was feeling ok. I heard Doc turn the light on in the bathroom and knew he was going for the thermometer. I felt Aria. She was definitely warm. Doc came in and Aria understood by the shape of his silhouette that he was holding the thermometer. She knows what this means. A little gasp filled the room followed by an "Oh No!" but she sat up and understood what she needed to do. 100.9 was her temperature. 100.4 earns a trip to the ER. We waited a few minutes and took it again. 100.9. We all got up. I checked her hospital bag, while Doc put magic cream on her port so she can be accessed in the ER and then I cuddled with her on the sofa downstairs waiting for Doc to get dressed. I had already called the inpatient pediatric oncology ward and let them know we were coming. If her counts are above 500 then we won't have to be admitted but if they're below then we get to stay. Aria's ANC a week ago was 990 after 2 weeks of falling counts. She may finally be getting the bug that she's fought for so long. Let's hope her counts are above 500. Let's hope she isn't getting a bug. Her spirits are pretty high. She was getting anxious as they were leaving about 'the poke part'. I don't blame her. She's done it a million times already but the truth is that it's never any fun! I reminded her that the ER has popsicles and that lit her up! As soon as I know anything, I'll let you know. This one has blind-sided me. ~j
December 3, 2008
Subject: Aria has been admitted
Well, her temperature at the ER was 99. They did a quick throat culture after looking at her tonsils and she got a chest x-ray. Her ANC was 180. I know! I know. I can almost imagine each and every one of you reading this and feeling sunken. I feel the same way. Doc mentioned to me that she got her vincristine a week ago so it isn't a huge surprise to him that her counts tanked. When he called a few minutes ago they were still in the ER waiting to be transported to her room. I can tell you right now that she's more than likely thrilled. I'm serious. She'll be watching movies all day long, which is a major highlight for her. I'll let you know what room number she's in. Keep us close and in the light! ~j
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