Friday, June 26, 2009

Aria is Super!

It is Friday March 7, 2008, early evening. I doubt I will get very far with this email but I thought while I had a little momentum I would gather some thoughts for you.

Let me begin with the most important news of the day and that is that Aria is GREAT! She is just terrific! She is active and talkative. Her imagination is once again overflowing with the gorgeous view of a child. She has been wearing her ballerina tutu that she received from her cousin and has been dancing and twirling. It brings me such unfathomable happiness to have her back in this way. I am so relieved to witness her healing knowing full well that she is still very sick and will face some intense battles later on. For now, however, she is guiding me through these present moments and I am savoring every little morsel. I won’t kid you though. She is so fabulous that she is also, once again, annoying, persistent, pouty, whiney, silly, and stubborn to name just of few of her other attributes. Aria is a strong-willed 4-year-old, full of steam, which is adorable and obnoxious at the same time. I would love to say that since her illness these annoying little 4 year old attributes have lightened somehow, have become less important and less irritating. Alas, being only in the infancy stages of enlightenment, her 4-year-old quirks can drive me crazy; illness or no illness! I do take greater notice however and I find myself celebrating her more even when she is in the throws of being 4. So in truth, in some ways, it is lighter and more endearing and I’m highly aware that she is so much better today than even a week ago.

Clinic today was not at all what we had been planning all week nor what we had hoped would happen. That is, we had hoped and planned on all being at clinic together as a family. As life would happen, I came down with a bug early in the week. It started with an “uh-oh” scratchy throat that turned into a sinus stuffy-thing but lasted only a day or so. I have a little remnant of it now but nothing particularly bothersome. I passed it along to Rianna who for the last few days has had only a mild runny nose. But I also passed some variation to Reo who surprisingly had been super all week until yesterday afternoon when he completely melted down. Suddenly, out of nowhere, he was fussy and whining and crying for his dad and complaining that his knees hurt and his tummy hurt. He was just a puddle at one point, which was really concerning. He was so not himself and of course I found myself traveling down, “what kind of horrible life threatening illness is this going to be?” I didn’t allow that thought to form into anything more than a flickering notion, however. I just cuddled with him and monitored him. He felt warm but not really feverish. When Doc finally came home, he helped Reo into his pajamas and put him to bed around 6 o’clock where he slept for a good 2 hours. We heard him stir and both checked on him. He simply wanted to cuddle but then suddenly said he needed to throw-up! Oh Boy! Here we go. Sure enough, he was sick. We checked his temperature and he had only a slight fever (99.6). He felt better but needed some reassurance so we cuddled for a little while and then he slept the rest of the night. Doc and I talked about Plan B for clinic the next day since Aria’s counts have been so high, her risk isn’t all that great but there are plenty of other children whose counts aren’t nearly as good who are at great risk! We decided to take the ‘wait and see’ approach.

This morning around 5am Doc heard a stirring that he thought was Aria. He shot out of bed like a dart, only to find Reo crawling on his hands and knees down the hallway, whimpering, “Dada, I feel yucky!” Doc brought him into our bed for a little while but the dogs started their morning howling serenade so he and Reo decided to head downstairs from some breakfast. Reo promptly threw up once again and when I came downstairs an hour later, he was curled on the couch covered in a blanket. He was not going anywhere, which meant neither were Rianna or I. Bummer!! It was an odd feeling to know that I wasn’t going to be there at clinic. I know that my role at clinic is nothing more than to watch Reo and Rianna and comfort Aria once in a while, but I don’t play an active role in her treatment. That is Doc’s job right now. He accompanies her for everything, while I stay in the background. Still, I’m there. I have access to her doctor, the nurses and support staff. I get my weekly reassurance injection when I’m there so being home left me feeling anxious, as if I was missing out. Although I wasn’t doing this, I felt like if I had a handkerchief in my hands I’d be sitting around wringing it ceaselessly. It was a very strange feeling to dread being at clinic but wanting to be there and not being able to do so.

Doc and Aria headed to clinic by themselves around 10am. I didn’t have a handkerchief in my hand but a telephone instead. Fortunately, both Reo and Rianna had nice naps so I was able to spend my time talking to ‘tech support’ people about our email, which is acting up again. Grrrrrrr! Still, the folks I spoke with were delightful and lovely and I was so grateful that I could have such concentrated time to focus on problem solving. Concentrated time is such a gift!

Doc and Aria arrived home around 2 pm. Aria told me that she was “brave during the poke part”. She also reminded me that her blood was nice and red. So far so good! Her labs were fantastic! Her cholesterol is back to normal so she no longer has to take that medication. Her hematocrit showed a nice little jump to 26, which is still well below normal but an improvement, which we have seen results in her overall energy level and her coloring. White blood cell and red blood cell counts are normal. Her spinal tap procedure, which is the last one she’ll have to have for this phase of treatment, went off without a hitch. Dr. Trobaugh continues to be very pleased with her progress and didn’t have any real concerns about the little bug floating through our family right now. It was bound to happen and we are grateful that it happened when Aria’s resilience is so high. We feel very very lucky indeed!

Doc said that he and Aria played some games and she even made some art projects using markers and foam stickers. This is only the second time she has actually played in the playroom. It was nice.

Doc and I are exactly like most male/female couples out there I suspect. I’m the wordy, “I said” and then “she said” and then “I said” and then “he said” type. I’m all about details; the little itty-bitty details. Doc is more the big picture kinda guy. I know this and I knew and accepted that I would have to do without my full reassurance injection this week. At some point during the afternoon I asked Doc,
“So honey, were you able to have a conversation with Dr. Trobaugh? Is she still pleased with Aria’s progress?”
“Oh yeah. Of course.” He replied.
I asked, “Well, what did she have to say?” details, I’m looking for those “she said……” details.
“Oh, (big sigh) you know..she thinks Aria is doing great. No real concerns. We’re just moving right along.”

This SO didn’t do it for me! But God love Doc. He knows me so well. His sigh told me everything. He was not up to the task of telling me the “nitty-gritty, there are this many ceiling tiles, the walls are this color, Dr. Trobaugh’s sweater was this texture and she wore her hair this way” details of the day. Clinic days are exhausting no matter what the circumstance. Not to mention, that Doc is not I. He doesn’t process the world as I do and therefore it isn’t his nature to exercise the “girlie skills” I so crave. Whatever anxiety I needed reassured for the day, he was able in his way to subdue.

Doc was so relieved when he got home. Even though everything is great and all that we can hope for, it is still so incredibly stressful to be in clinic. His neck was stiff and his back was tense. He spent the rest of the afternoon wandering the property assessing spring work. Fortunately, we don’t have to go to clinic next Friday! We actually have our first Friday off in 2 months! HEAVEN!! We are halfway done with our Consolidation phase of treatment and feel so fortunate that everything is going well.

We are planning to make a quick trip to Seattle next Saturday so Doc can receive a very special and prestigious award. He is the recipient of the Del Cole Award from the Washington State Psychiatric Association. It is awarded to an outstanding physician serving the realm of community mental health. I am so incredibly proud of him! I insisted that if Aria was well enough that we all make it to Seattle to watch him receive this great honor. It looks like we are going to be able to make that happen and I am so thrilled! A little change of scenery ought to be really really fun. It is going to be a whirlwind trip. We’ll head out on Saturday morning for the award ceremony in the early afternoon and then come home Sunday sometime. My 3 very dear Goddess friends will already be at the farm on Sunday waiting for us. They are spending a week to celebrate 2008 Goddess-Fest. I have no idea what kind of nonsense and fun we’ll create but I can guarantee you that after a week in their energy, I’ll find my stores of energy and creativity re-stocked to over-flowing. The magic of friendship is beyond my words. I’m in charge of creating the ‘theme’ so to speak for Goddess-Fest so I imagine that this year we’ll be focusing on “healing.” It is so obvious yet so profound.

We are all hurting, aching, longing, ailing, fragile, damaged people. This is not what defines us. It may be what consumes us for periods of time, but it does not reflect our true selves. When my Goddesses arrive, we examine these things deeply through all matter of crazy ways. We color. We craft. We sew. We dance and sing. We talk until ungodly hours. We cook. We laugh and we cry. We hug and kiss. We play. We pray. We build fires. We weave ourselves to one another creating a mesh that protects and covers us. It is such an amazing weave that it extends beyond us and is able to catch others when they stumble into our presence. We all have this and what a brilliant thing to possess.

They, like you, have stumbled into my presence adding to the woven mesh I call myself. I am stronger, more colorful, and better able to catch and hold others because of you. This is a beautiful and tender connection that never ceases to amaze and entangle me with wonderment.

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