In the first weeks of Steven's diagnosis, I spent a good many nights looking out of our kitchen window to the parking lot of the local funeral home, just absolutely knowing that there was no way that I could ever deal with losing my child - any of my children. The despair that I felt in my gut was so dark and deep that it took incredible strength, and Frank's gentle arms, to pull myself away from that place.
I don't ponder much on that thought these days, not only because he is doing so well, but I have found that its not a good use of time at all. Right along with trying to figure out why he got this leukemia in the first place. Was it where we chose to live, was it because I smoked in the house, was it...was it..... was it?? What a waste of time. It is what it is and I am tremendously thankful that there is not a definitive cause or reason that I just know would come with all the "if only we hadn't....." self beatings.
And still, when I see that some people ask the question "what is the pain like at the end of life with cml", my heart stops for a beat or three. Another question: "What is the longest cml survivor". Well - stop! - he is still getting there! So now I admit that it's not only because I recognise the futility in thinking these thoughts late into many quiet dark nights, it's that they simply just scare the poop out of me and I won't go there! Whatever it takes to stay sane - that's the road I travel these days. At least I'll keep trying to.
Also, in those very early days, when I heard someone talk of a child they lost and I saw that they were able to go on again and even to laugh! Well, I was angry - HOW could one laugh, live and even breathe after losing a child (God, please let me never find out!). I think its much like what we all say before having kids - "I will never let my little daughters run around with uncombed hair", or "My son will no be seen in public with mud on his face" - you know - all those things we think before reality arrives. Well, this is another one of those, I guess. I recently read an update on a blog of a mother who's daughter, Courtney, passed away just over a year ago.... she just recently found the ability to see a beautiful scenery again,as we still see it. "we" being those that are so incredibly blessed not to have lost a child. Go to her blog - its some incredible reading. http://www.freewebs.com/courtneynicole/myblog.htm, Her latest entry about seeing this beautiful view really helped me realise that we grow strong as we need to. It's helped me to understand that life just goes on for those left behind after someone dies and sometime, somehow, the light will come back if we allow it.
Ok - enough of that - its getting late and the night stretches ahead and .......well, enough of that for now.
On Saturday - I listened to the telecast given by the Leukemia and Lymphoma Society with Dr Brian Druker who formulated Gleevec. It's this mans work that is keeping me from joining the ranks of those too many mothers that have lost children to cml. I thank him every day for the life of my son. When I first started listening to this telecast, I was amazed at how emotional I felt at hearing him talk. The notion that this incredible scientist and doctor, who had not only taken the time to meet with us all and give us so much verbal hope along with the medicinal hope, that he takes the time to keep us updated, takes questions and instills so much peace into our lives - its simply astounding. He answers every email that anyone sends in relation to cml, as does his Nurse Carolyn, and they are always there to guide and inform even our local doctors . What an incredible team - I am more deeply grateful to them than I could ever describe. You can listen to it here: http://lls.hipcast.com/deluge/074596e8-877d-7241-1780-3247db8a3727.mp3.
So another peaceful day passes by. I realise now that whether I like it or not, cml is such a deep part of my life that there really is not a day that passes that I don't think of it in one way or another. I am just so very thankful that I can think of it in a positive way these days, the friends I have made, the hope that is there, the unending support of dealing with cml in Steven, and the sharing of normal things in a normal life too. It all adds up to the makings of a much stronger me.
I have found myself playing with the camera, testing different lenses and having a total blast with it - this is a really good sign of where I am inside. Creativity seems to dissappear when stress hits too hard, and I am really grateful for this quiet time, even though it means I literally have hundreds of photos to sort through after a good weekend! :) Here's one - it's condensation on a water bottle... pretty, hey?
Here's wishing many more gentle waiting days for everyone waiting for test results, and may those results bring a happy tear and a big smile.
love and light