So many things go through my mind that are directly related to how I live my life these days. There are none of the dramatic ups and down of the early cml days, which leave a big bunch of time wide open for living life in an new and lovely way.
About two weeks ago when Steven was with us in the shop, we got talking about cml -just for a little while, and he was leaning casually against the door frame with a languid smile on his face, almost as if he was being gentle with me and he said "I think you had it tougher than I did, mom". Wow. WOW!
That makes me feel and think so many things....... number one being that how could it be right/fair or imaginable that I had a tougher time than Steven? He is the one with CML! I so hope that it never felt to him that I was "taking this away from him" as in making it mine etc etc. I am not sure how exactly to word this thought but it almost makes me feel guilty.. And then I thought some more...... and I really can say that I really do hope that I had a tougher time than Steven! With this thought in mind, I can put some measure to his feelings and dealings with this disease so far. Now I can almost imagine how he felt and feels about it. Now I can know without a doubt that he will deal with it all, no matter what. But only if that statement is actually how it is.
And these thoughts got me thinking about how important the togetherness of this ride has been. The picture above sort of says it all. Its a photograph of some local residents in the Amazon Jungle heading down the fast flowing Napo River. We are all like this - in the same boat going down the river of life that is always changing, never the same, full of surprises, some good, some bad... but we are all in the same boat! Someone will be in the front, the middle or the back and somewhere in between, but....... all in the same boat. How would it be if the captain of that boat did not let the others know where they were going or some other information relating to the endurance of that ride?
I often think of how incredibly fortunate I am that Steven shared every part of his CML journey with me. I absolutely know for a fact that if he had not shared, or stops sharing, his results, his concerns or issues with me, that this would leave me guessing and creating the worse case scenarios in my mind and nightmares. This would have made me watch him closer, monitor every nuance in his words on the phone, worry about every day that he was tired or simply had a cold or was in a bad mood.... I would have been so much more frilly and this would have driven us further apart. It would have kept CML in every thought relating to him, in every conversation and in all my thoughts and I would have been a pain in the butt.
I know...... I absolutely know that it is because he has been so open that I am able to get on with my life, to travel, get involved in my photography and really have a life where CML is simply a trickle in the background, always there, but so much smaller than it would have been otherwise. I know that he will let me know if anything changes - good or bad, I know that I can move on with my life and get even stronger and even less scared. If everything continues to go well with him, this 'free time' would be great, if things change, well then I have had time to regroup, enjoy some cml-free time and get strong for another fight ahead.
It makes me remember one mom that I used to chat with - her child did not want to share anything at all with her.... she was totally frantic! It took a while, but all is ok with them now - thankfully. I know that ultimately all Steven's medical issues are his. I have no right to the information at all......... but I would have to go and sit on a very high up mountain top in a very far away land and meditate very seriously if he kept any of it from me. It would break me apart, bit by bit.