Friday, October 19, 2007

Floating Oranges

We are in Roswell, New Mexico - yes slowly winding our way back east and home again, but not quite ready for that yet. Its been wonderful out here, seeing everything we have, experiencing the open country the sights that not everyone gets to see - especially the face of my child when we surprised her! That still gives me goosebumps :-)

I have been trying to put cml at the back of my mind, actually I have tried to put it right out of my mind - but have you ever tried to keep a dozen loose oranges under water? No matter how many you manage to get under, another is either coming back up or already floating again. So it is with the thoughts going through my mind. Everywhere we went, something made me think of Steven, cml, his strength and abilities that he has and those he has yet to learn. Some of those thoughts made me smile and breathe easier and meet my challenges head first and with strength and others had the ability to make me want to stop. just stop.

Have you ever just wanted to stop? No drama, no pain, no more. Just stop. Its not a dramatic feeling, its not a sad feeling, its just a feeling of......... literally wanting to stop everything, internal and externally. No its not bred from depression or something bad happening, not from any drama or bad expectations at all. It just happens every now and again. I remember clearly how very often that happened in the first months after his diagnosis. I remember riding the bicycle down the road and ....... well, just wanting to stop, not just the bicycle, but everything. But I always knew, and still do, that that is just not an option. But it does not stop that feeling. It's just a feeling, one that does not last long at all. It's as if a very heavy blanket is thrown over me and the effort is too much even to breathe or think. And then it passes.

Anyway - it does not happen that often anymore, but even though we have been having an absolutely awesome time away from home, that is one of the heavier oranges that popped up!

I have experienced so many more positive thoughts and happenings, especially these past three weeks, and I wonder why there is a heavyness tonight?

Steven's birthday was this week, Wednesday, and his pcr Thursday. It was a tough decision to be out of town on his birthday, but I felt that it would be good for him, for us and thats how it worked out. He also had to fully sort out the pcr test this time by himself. He had to order the kit from OHSU, keep it cool, get the pcr, fill in the forms and overnight it back. Now I know that this sounds really easy the way I wrote it, but even after doing this for him for the past 3 pcr's, its still nervewracking to get everything just right. He did great until after he left the doctor's office and noticed that they had not filled in the paperwork! So he called me a tad frazzeled and in the middle of a rough day at work too. We walked through the form, filling in what we could , deciding that OHSU and his doctors office had all the details we didn't so he wrote a note giving them the local oncologist telephone number in case of any questions and referring them to previous paperwork sent in.

I hated hearing the frustration in his voice and called back later that night to deal with lighter things - it was good to hear him laugh again.

It's funny how a long, lonely, open road can make me think of cml, or a gently meandering river, or a towering orange cliffside, or the motion of a boat or the dead, dark silence of a night spent along the side of the road in the middle of New Mexico. A falling star, a baby boy a strange kid calling 'mom!'. They are all normal things in life, but I find a deeper meaning in so much of it. Maybe I am going nuts - but hey, then I am going nuts :-)

I also thought that the wait would be easier since we are not home and not in the normal 'wait mode', but now I see that that does not make a difference at all. The waiting for the pcr results is the same whether we are out here or at home. I am really keen to see these results as the last numbers were really close to the previous ones and I reeeeaaaaaallllly want to see a goodly drop in numbers this time.

Why can't I take this from him?

And I have just remembered something ......... about 30 miles out of Roswell, we came across a runner, pelting it out along the side of the road and I felt so humbled. If this man can do this - then I can deal with my pain regarding Steven and his leukemia.......this man has two false legs and is by no means stopping his life! I still want to be able to take this cml from Steven...... I bet any mom would.

And so the wait has started and I promise myself that I will deal with it better this time. We have to keep promises, right? :-)

Love and Light

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