Friday, May 18, 2012

May 16

May 16 has come and gone.

And now Lily is officially five years post diagnosis--which is a wonderful, beautiful thing.  She will never be declared "cured," but five years is five years.

The anniversary of Lily's diagnosis is always marked with a certain tentativeness. We don't talk about it at home--not directly, not in explicit words. We don't have to. We all know what it is. But we never forget it--it is the same day as my Dad's birthday.

And this year, my father is dead. There was no birthday celebration. There was no toast to long lives for my old man and Lily. None of that. It all cast a new shadow upon on the day.

I still don't know how to feel, exactly. And I don't want or need anyone to tell me how to feel. While, I appreciate all the love and support--the reminders that my father is looking down on us and is some sort of guardian angel to Lily and the cheerleading that we need to focus on how great Lily is and how far she has come--are empty and aggravating and slightly irritating.

I am sorry. I have to be honest.

The fact is: I know my Dad is in heaven. I have faith he is somehow still with us--even if just in memory. While in my dark moments, I beg my Dad to intercede on my behalf and keep my children safe--I know that the only one who can intercede on my behalf is God.  I always prefer to go straight to the top man.

And the fact is: I am more positive and more filled with hope when it comes to Lily than anyone else. I have no choice.

I stood in that room on May 16, 2007 and heard the words Brain Tumor. I stood there and listened as a neurosurgeon told me Lily would have surgery at 1 p.m. on May 17. I was there. I told the doctor to go to hell when he said Lily would not ever walk without her walker. I've spent hundreds of hours in physical therapy, occupational therapy and every therapeutic activity you can think of. I've massaged my daughter legs when they've cramped from too much work. I explained to other children why Lily does not walk like they do. I've let my young child fall on the ground, so she would learn to stand back up. I've pushed her into dance and gymnastics with "normal" kids--so she could learn to work with her body and feel free to fly and dance and dream. I've held her hand the hundred times she has been sedated for surgery, radiation and MRIs.

And I would not have done any of this if I did not have hope. There is no point in fighting the war, if you don't believe in your heart you will win.

That is hope.

I did not do any of this alone. If you are reading this, you were probably standing right along side of us--or you are now. You gave us strength. You give us strength. With your strength, we will survive.

Happy Birthday to my Father, who told me to pray until my knees bled on May 16, 2007 and cried with me on the phone. His tears showed his strength.  To my Lily--I always believed that you were diagnosed on your Grandpop's birthday, so we would not forget the day your life was saved.






3 comments:

  1. This is beautiful.

    As a parent, you never expect to hear those words- ‘it’s cancer’ in regards to your child. I mean, we all know that kids get sick every day, but until it touches you, it’s never REAL…just some sad story that some co-worker’s cousin’s neighbour is going through or some inspirational little blurb on your evening news. Very sad…but not MY kid.

    Until it is your kid. And before you know it, you’re under the water in the deep end of that pool, scrambling to figure out which way is up. And the world as you knew it ceases to exist and regardless of prognosis – clean scans or growing tumours – you never, ever get that world back. You are always going to look at life differently. This pool is very deep as we all hang on desperately to every possible lifeline thrown to us.

    Thank you for sharing,

    Louise

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  2. No words. Just Hugs and prayers.

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  3. I love you. And I feel so much less alone when I read your posts. Thank you for getting it :)

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