Friday, March 06, 2015

9 Years! SO Grateful!

Late last night it hit me that today is the 9 year anniversary of Steven's cml diagnosis.  The thought left me with so many feelings that I just sat quietly and soaked them all in for a while.

Happy that we can say "9 years!" with no tears or sadness at that thought.  Wonder that the years have passed so incredibly fast and it also feels like many lifetimes ago that my world fell apart.  Sad that way too many others have gone on from here and the pain that brings, along with the feeling that we should always be on our toes.

I am going to say here again that I know that Steven's cml is not about me, but that I write from how it affects me as his mom.  I write never presuming to come close to understanding in how many ways this has and is affecting his life, and his beautiful wife, Laura's life too.

That day, that week, will always be etched in my mind.  By the time the words were so cruelly and harshly spoken, we knew that something was not right, but hearing those words just tore my world apart.  I did not know how to breathe, let alone stand, talk or..... well, that roaring in my ears just would not stop.  And so I babbled away about stuff that I had know way of knowing.

When I heard those words I immediately wondered how I could make it right, how could I change this and then I quickly realized that there was no bandaid big enough to help this one.  It rendered me totally helpless, terrified and unable.  And then I looked straight at that son of mine sitting on that table in the doctors room and knew, KNEW that I could not stop functioning.  My mouth still babbled on endlessly and my eyes leaked, all the while trying so hard to give Steven what he needed.

I could not blow this off as if 'it was going to be ok'.  I did not know that.  I could not collapse totally because my kiddo needed me then.  Needed me to be all I could be.

And so I tried.  Steven drove home and we found ourselves laughing at something on the way home.  That was a weird moment.  And then he dropped me off, wanting to go home and be alone.  Oh I so wanted to be with him, but had to respect what he wanted....and I desperately needed to cry, long and hard.  Today I wanted (again) to ask him about that day, how he felt and what he did when he got home, but the words again choked up in my throat and I just could not.  Not yet.  Maybe never.

In a matter of days my youngest daughter told me she was joining the Marines, my older daughter told me she was going to make me a grandmother and my son was diagnosed with cancer.  Each of these was a huge occurrence, but I could only cope with one - the cancer diagnosis.  And so my girls sort of went on the back burner.  Yes, I participated, but I know that my heart, my attention was only partly with them.  I will forever be grateful for their understanding, patience and support even though they were going through huge life changing events as well.

During these past 9 years I have met the most incredible people, have made long lasting friendships with many who were and are in my position and also those with cml themselves - incredibly special people.  The support groups I joined helped keep me sane and so incredibly informed and in line.  I have so many 'thank you's", so much to be grateful for.

The relief and happiness of today, every day, also comes with sadness for those who are no longer here because of cml. There are too many to mention here, but you and your families are a part of who I am today.  Adrian Sudbury and his mum, Kay; Nick Pippen and his mom Diane - they, amongst many others enriched my life so much,  they still do. Lottie Duthlu, wow, I miss you!  Every person lost felt like a personal loss.  I am so incredibly fortunate...

And Laura.... I could not have done this without lovely Laura.  I knew she would watch out for Steven when I was not there, I knew she would take care of my child in a way that I could not.  She has been amazing through all this.  They were both so open to having me intensely involved in the cml process and this helped me let go a bit. Ok, so that took a good long time, but not because of them but rather because of me being, for a while, so incredibly scared that I was going to lose this child of mine.  I am so deeply thankful to both of them for this.

And so we have hit the 9 year mark.  Wow.

Steven, I am so incredibly proud of you for many many reasons including for how you have handled this from the very start.  I will never forget you holding me up while we were walking in the hospital and you said to me "Mom, everybody dies, but I am going to try to not die from this!"  You have said that you don't remember saying this, but it still brings me to tears.  You have done a stunning job of these years - may you be successful for the next 50 years at least!

I love you, my boy.

A huge big thank you to everyone who has walked this road with us - you are all part of my life in such deep meaningful ways.  It has been quite a ride so far..... scary, exhilarating, stunning, beautiful and totally amazing.....

Love and light
Steven's mom