Living With CML: One day at a time

I wanted, nah - maybe need, to get some of my thoughts out- so you get them.. Just thoughts.

I wrote a long and convoluted thing on the blog recently about the fact that for the first time I fully recognised my son as a man, yes - a MAN! In many ways I am very sad that I discovered this while he was sitting on that offensive crinkly sheet on the bed in an oncologists office! But on the other side, I finally got it! For this I am really grateful. Yes, I knew he was a man - he is 24 years old - and simply by age, that is a man, but it did not get into my mind. He is a man by so much more than mere years... I have it - I finally get it. Is it just mom's that don't to know that their kids have grown up? Anyway - now that I have it - it’s a really wonderful feeling. I still see my girls as 'my girls' - but they are women and one’s a mother too - very strange thought. But, one at a time! LOL. They can stay 'my girls' for a while longer.

Anyway - with this new doctor and my peace about him and Steven's ability to go down the cml road together, I have found a new dimension to life. So many thoughts are going through my mind and they will probably all come out jumbled - but here goes.

When the kids were growing up, I HAD to be around to raise them. I HAD to be alive. Then when the marriage fell apart and all the drama and trauma with it, I HAD to be around to make sure they were ok. Then, after a few years and the girls moved out - I still HAD to be around for them and Steven who was still living with us. Then Steven moved out - and bam - three weeks later, still adjusting to this new found freedom - I again HAD to be around to make sure he survived and got through this cancer.

This is not to say that I did not WANT to be alive at the same time that I HAD to be alive............. its just that the ‘had to’ part came first.

But. Now what? Now I know that no matter what, he will be ok. I have a young man dealing with cancer, not a kid anymore, and good or not good, we will deal with it. And my girls - they are fine - Lisa is a mom and coping very well and Joleen is far away and coping very well too. So - for the first time............... I DONT have to be alive! And something quite amazing has happened. Now I WANT to be alive!

I WANT to be alive to see how they turn out in 25 years time. I WANT to be alive to see how I turn out in 25 years time (really??). I WANT to be alive to meet up more often with the amazing people in my life, I WANT to be alive to really make a difference in something!. I want to be alive for so many reasons! I have found this bubbling of stuff - stuff that has come to the surface and overwhelmed me in these past few days in the freedom and thoughts they bring. I know that I can deal with whatever is out there waiting for me. I know it won’t all be wonderful or easy - but I know that I can deal with it.

For the first time it feels as if all three my kids are flying wide open and well and I can “Just Be” - for me!

So although I fully recognize the fact that my years of taking care of the kidshave now passed, I don’t feel unwanted or un-needed - I feel free and now, for the first time in as many years as I can remember - I WANT to live while recognizing the fact that it will all be ok even if I don’t. For so many years I was so afraid of what would happen to the kids if I was not around, particularly with their history of ex-parents, but that fear has gone! This does not mean that I am free of the kids – that never happens with a parent, a true parent. It does not mean that I don’t want to or won’t help the kids along in their lives or be with them and a big part of their lives – it simply means that I know they are wonderful, strong and amazing people who will cope whether I am here or not. What a simply wonderful feeling!

So - whatever happens, I know it will be ok. The thought that I don’t HAVE to stay alive, but WANT to stay alive is blowing me away..... It’s not that I did not want to live before - it was just that I knew I HAD to and did not think of whether I wanted to, kinda like being on autopilot. What a difference this "wanting to" makes. Maybe it changes nothing tangible but my inner thoughts and peace of mind and outlook on life - even that is good.

And with all these thoughts comes the next pcr test early next month. I find myself on a very different level coming up to this time again. I am ok. I am calm, my nails are even growing still and I swear my hair has stopped graying! Now I know that all this can change in less than a heartbeat, I am aware that it will only take one test result to take some of this peace and calm away. But today life is really good and I am strong and capable and able and really wanting to enjoy these good feelings.

One day at a time – that’s the only way to deal with this. For two long years, I tried to sort out the ‘what ifs’, tried to get them all into the right side of life and to make it all right. Now I see that no amount of plotting, planning, scheming or bargaining will help in any way other than add grey hairs and allow that stress hormone to pack on that extra tire around my hips! L So, for now, it’s back to life.

I have been so absolutely fortunate in finding some truly awesome friends along the way who make me laugh and make me cry, who make me see how truly fortunate I am, how fortunate Steven is, yes – even him. I have these people in my life who are there with no strings, no expectations. I read a lot about other young people with cml and try to stay away from the other more horrendous cancers just because it hurts to read about the mom’s that are out there, so much worse off than me, let alone their children. In one way I want to try to understand what goes on in Steven’s head regarding this cml, and in another way I just look at him and see that he is ok – and then I know I can stop reading. For now.

So with this new peace and stillness in me here’s wishing everyone the ‘one day at a time’ effect. It’s good.

And – I babysat on Thursday on McKenzie's first birthday, for a few hours…… here’s how it went!