Tuesday, April 29, 2008

Blue Bird for you......

This picture of our resident blue bird made me think of so many people and things. Firstly, it made me think of all the color that has come into my life since Steven's diagnosis - the color being the love, the handholding, the cyber friends, the hope that even little kids give me and the strength of so many going through really tough times - also all those going along such similar roads to Steven that this new normal feels almost just plain normal. Whenever I look at this picture I think of you all... with a special twist for the mothers.

And it makes me think of the waiting. We sit on this fine wire of normalcy and its shakey at best in good times... but we are never alone - there are always people on that wire with us, maybe not always in focus, but there nevertheless.

I was fortunate enough to capture this awsomely beautiful bird the other day - I stalked him all around the garden, especially for Lea http://www.caringbridge.org:80/visit/leamorrison and Bianca http://whitesinnz.blogspot.com/ and Diane who's son Shane went through transplant. www.caringbridge.or/visit/shanemyers .

Yes, I get 'soppy' and many of my photos have "thoughts of life" attached to them....but that's me :-)

love and light

waiting, waiting, waiting....

Still waiting for those pcr results. But this time it's by choice........ I am not going to call for those results. Not this time. When Steven stopped by for a visit over the weekend, I asked him if he wanted me to go with him to his appointment on Thursday. His response was that I was very welcome to go with him, but that he felt fine and that the doctor would probably just tell him that anyway. So I decided to take another step backwards and let him handle it himself. I also suggested him that I would not call for the pcr this time - he could get it when he goes to the oncologist on Thursday afternoon. And he will bring me the results on his way home.

He was so positive, so relaxed, so assured that if I had said I would go along, I felt that I would be undermining some of this confidence. It's not my disease and if he is comfortable in dealing with it - then I have to let him get on with it (thanks Kay :-))and not always be inbetween him and the cml - or at least try to put myself there. I so want to cushion any bad news, protect him from whatever I can - but in reality and in fairness, I should not. Not only can not, but I should not.

So the longest 4 days started as I gulped on the words that I would leave this up to him. It's the final days of waiting that are the worst. I know - I have been over this, and over and over it again....... but it's there. Only this time it's been much easier. I am not sure why. Maybe I have been busy with other stuff, maybe I have been focussed on others going through a rougher times or maybe I have just been having too much fun playing with photos again.

It's not that I don't think Steven is capable of dealing with all this on his own, I know he can and will. It's not about his ability to deal with it at all - it's about my ability to step back and let it be. I have to keep up this absolute belief and trust and knowledge that he will be fine, no matter what. It is easy these days when I see that smile, that spark in his eyes and the sense of mischief and his plans for the future and his strength and trust. I have to know that we have the strength to deal with whatever comes our way - so many others do, why not us?

When I talk to my girls, I can process that they have good and bad days, that this is the normal way of life and I don't worry about them unduly. Heck - *I* have good and bad days, days that I sound, feel and look like something the dog dragged in, but in the big picture I am great. But with Steven...... well, I am still learning to do that again. Even when he is tired in a very normal way, when he is aggravated or frustrated, my antennae go up and I find myself in an emotional holding pattern until the next time he sounds great. Just a short conversation can make or break my peace of mind.... That is so silly because, like everyone else, at times he is just busy, preoccupied or just plain being human! He has never been one to moan and groan about feeling ill, so why would I automatically think that if he sounds ok, that he is ok, or vice versa? I did not pick up how he was feeling before diagnosis, why would one day of being tired now give me a reason to worry? hmmm

Wow - where did that all come from? I had not conciously thought about that and it all came burbling out of my fingers - it must have been playing around my mind enough to have made this appearance. Always better out and now I can look at it openly and learn to adjust these feelings too.

It still amazes me just how different today is than two years ago. That seems like yesterday and yet a lifetime ago. So many good things are going on in all our lives and the bleakness has moved away - we are so fortunate.

So - Thursday evening is The Big Day this quarter... more then.

Love and light

Monday, April 21, 2008

Who's in charge?

Doing good! No frillies yet............... actually it's been weird in a way in that I have not even had cml in the forefront of my mind this past week. It's always in the back of my mind, aways will be, but the wait for the results this time has been different. And I think its for a number of reasons.

I have heard it many times before but finally these words sunk in properly - or so it seems. "We will always be waiting for test results." A number of people in the shop this week have asked after Steven and what a pleasure to be able to say that he is doing well. They want to know when the next test is and each time I have said that we are waiting for results, and always will be. When one result comes in, we immediately start waiting for the next....... Well, if we are always waiting for a result, am I then going to spend my days worried? Am I going to lose out on today because of what tomorrow might bring? Steven does not......I was going to finish that sentence with "so why should I?" but I know why I do and I know why I cannot change that. I am a mom, I will worry more than necessary, more often than needed and on a different level than he will. But I have to put it in perspective, I have to see that this young man gets on with life, planning for the future, trusting in the future and simply moving on with life each day. Now why should I also not do that? I can add a touch of worry in there......wanted or not, it's there......but today I believe that I can do so much better, not only for me, but for Steven and everyone around me if I put the good above the bad, the calm above the worry.

Today, while working in the garden - yes! I did - for the first time I spent most of a day in a brand new pair of pink garden gloves, scrubbing around in the garden and having a total blast! I planted seeds, transplanted newly sprouted vegetables and sewed seeds - generally having so much fun and giving me much thinking time. One of the questions that came to me was 'to whom do we give control of our lives - who is in charge?' I don't mean this on a religeous level, rather on a very human one. I read a good many blogs about others with different cancers and diseases that are crippling their ability to live good and healthy lives - some temporary and some permanent and yet others who don't know which one will be them yet. And I wonder at their humor, their strength and ability to laugh, smile and inspire others. From the very young Bianca to many others in their 60's - all these people have a sense of humor well intact. How does someone with cancer do this? Is it because they realise how precious life is? It is because a self preservation part of them brings out what they need in themselves? Whatever it is, its wonderful.

And also - how many of us have, at some time or another, put our lives in the hands of someone else. As long as this person thinks well of me, loves me, likes me, accepts me, or maybe just waves at me - then the world is right - there is hope and reason to keep going. If their feeling stop or change, for whatever reason, whether they can help it or not - then that somehow takes away all reason for living. What a tremendous responsibility to put on a human being... and how is it ok to give all our strength and ability to someone that wants to move on or away? Why is it so easy to give away our days to others and to circumstances and to hang on to the negatives and the worries? Is it easier to give it up than to take care of ourselves and our actions and thoughts and feelings? I know it seems that way when the going is tough - but ultimately its always happier when we take charge of ourselves as we should. Easy to say...so easy to say at times.

So this brings me back to the question of whether I will be ok if Steven's test results are not. I have to be. There is no option if I am totally honest. The only option is how I will deal with it. Will I take responsibility for my feelings and fears or will I park all that on 'the bad test result' and let the good part of life get buried under the bad? Well, for today, I don't need to deal with this question and I hope I never do, but if I ever do have to - I hope I can find this entry again and read it to myself. Or at least have someone quote me!

No result, no loss can change deep inside me what I am unless I allow it to do so. Today the sun shone, the temperature was perfect, a gentle breeze blew around cooling us off in the midday sun and no amount of good or bad results would have changed the fact of any of this. Only the feelings that I let happen.

Are our feelings a concious choice? Maybe. I know that if I go into this pcr waiting time with worry - I bite my nails, I become tetchy and just generally not an easy person to be around. If I go into it with a smile, hope and a knowledge that I will deal with it, no matter what - I find myself smiling more often and even enjoying gardening! wow. Talk about control!

There are times when I do feel that worry creep in, and sometimes even that gut churning worry - but then I remind myself that it is what it is. Nothing I feel, do or think will change anything exept how I feel, think and look. No amount of wishing or hoping will change those results or the course of this disease in Steven. I have to accept what will be. Maybe some of these thoughts have been brewing for a while, and they sure have helped. Go and look at the smile on this little girls face http://whitesinnz.blogspot.com/ - it sure makes me smile and makes me humble too whenever I see it , which I do often.. Hi Bianca!

There are so many people out there who just don't know what a difference they make in my day - just having someone share their story, even if its not exactly the same as Steven's, helps. It builds my courage to read about mom's going through really rough times as well as others battling cancer themselves - I have it way easy by comparison to the many mom's out there, let alone the kids dealing with cancers.

So - who's in charge? Today, I am in charge of me! May it be so tomorrow and the next too......and I wish this for you too

love and light

Tuesday, April 15, 2008

Nothing quite like a friend......... :-)

You are a DOLL, Kay! I wish I could tell you how many smiles and warm feelings these flowers brought. They are beautiful in so many ways. Thank you, thank you!

I have found that on this road of dealing with cml in our lives, that there is nothing quite like a friend walking exactly the same road. Talk about priceless.

Monday, April 14, 2008

gentler days.....

Sometimes it's in these quieter days and weeks that many thoughts can come out and play without becoming too intense or deep. It's then, and now, that I feel strong enough to handle some of them, or to at least to acknowledge that they are there...... so, here are some ...

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

Tuesday, April 08, 2008

Defining times

We all want the best for our children, we want them to be healthy, happy and not ever to have to hurt, and yet we know that the unhappy and hurtful times are those that probably make them, and us, grow the most. I have found this true for me. When things have gone terribly wrong in my life, sometimes I hunkered down, hibernated while I licked my wounds and found a way through the issues and tough times. Other times I have had to put a good face on it all, fooled the heck out of the rest of the world, and sometimes myself too, and again found a way through those times. And looking back on my life I see that these are some of the defining moments of my life, these are some of the springboards that hurled me into the good times, the happy times and the times I would not exchange for anything.

So why is it that we wish away these springboards in our kids lives? Is it perhaps because its so much more difficult to see pain in their eyes than it is to deal with it ourselves? Is it because, although they are going through the pain, we feel it too? I remember when the kids were small and they hurt themselves, or were very sick, I remember how my stomach clenched, how my heart accelerated and how I broke out into a sweat at times in sympathy with their pain. I remember the pain of watching how they worked through a break up of a relationship, or glowed in the sunlight of a new one when I knew it would not work out. Thats all very normal in a mom, I know that, and I wish every mother these pains, pangs and anguishes...it means their kids are growing and so are they, but of course I don't wish anything other than just the normal scraped knees and tonsils etc.

But it's different with Steven now. It's so deeply different. When he is happy, I am not only happy for him - I am also deeply grateful that he is able to be happy despite the leukemia. When he is sad, my heart literally hurts, but on a much deeper level than with my girls. When he hurts, I would do almost anything to stop that from happening - he has enough to deal with, dammit! When he is stressed, I feel the same way - could I take on that stress, in less than a heartbeat. It's not just the stress, it's the effect of stress on his system, its the fact that he is stressed despite that I don't want him ever, ever to be stressed in any way at all.

The normal experiences, feelings and frustrations of everyday, take on a very different depth in relation to Steven. I don't think there are the right words to explain it, but I do know that I cannot shake this. I cannot shake this feeling that goes so deeply with him, and will probably have to accept that since he was diagnosed, my feelings for him run deeper than I could have imagined and on a different level than with my other two children. Now this is not something I wish on anyone else.

And I look at where we are today. Steven looks great, sense of humor in perfect place, he deals with work and everything in his life a heck of a lot better than I remember doing so at his age. His pcr results are all in a safe place, the leukemia is well controlled and most times when we see him, he feels really fine. We are so incredibly fortunate. And yet this deeper depth of feeling persists. I think that when (notice the 'when', not 'if') the cure is found for this disease and he has been cml free for 10 years, maybe then my feelings will equalize. I don't know. It's as if I am extra grateful for everything this eldest child of mine feels and experiences. It's both a good and a not good feeling......

I know that through all of Steven's growing pains, the happies and the hurts, I know that I will worry just that little more, just that little deeper and I also know that no matter how much I worry - what will be, will simply be - and in some way he will come out stronger and able to deal with the next step. He has done it so far. He has been incredible.

Just a few short years before Steven was diagnosed, I had come through what was possibly the most difficult time of my life. It took years to get through the problem and a good couple of years to emotionally recover from those years, so one of the feelings that I had when Steven was diagnosed was incredibly selfish...... I was angry that my life was not worry free any more, angry knowing that I had lots of adjustments in my life to make in order to deal with this. I was angry that what I thought were going to be a good many years of gentle living, enjoying life and just generally being relaxed was all gone. Totally gone. I felt like stamping my feet and yelling, kicking and screaming and demanding that quiet time back again!

And now I see how much I have grown through these last two years, I see how much stronger I have become and how much richer my life is because of Steven's horrible diagnosis. I wish for him ten times the love and growth I have experienced in these two years.........and more. He has already come so tremendously far, dealt with so much and through his dealing with it, taught others that through a bad situations can come so much good.

The next pcr blood gets drawn on Thursday and I am still refusing to become frilly this time :) Lets see how three weeks from now finds me.......

Love and Light