a family's fight for the cure

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Maxie’s Fight

It’s always there, lurking and waiting. The relentless, faceless enemy we run from everyday. We fight as best we can, and make progress, you are doing so well! We get to a point of acceptance, and go on with our daily lives.
The fight becomes our focus, our mission, and just another part of our day. We feel genuine happiness, and a sense of accomplishment. This is our reality, this is what we do. But how long will it last? How long can we keep It at bay? Life goes on. There are the usual ups, downs, joys and sorrows. But the terror of the unspoken is always there, lurking and waiting.
We do not accept that one day you will be ripped away from us. How could we?
It doesn’t even seem possible
when we see how far you’ve come. So our denial keeps us going, it feeds our fury to save you. We believe there is more hope we know it is true. We put our hope in science. We will not let you go. Somehow, someway we will conquer this vicious disease. We have come so far, but have years of hard work ahead. Our goal is to find a cure, to beat our enemy, to save you. I cannot let you go, I will never give up. I nuzzle your sweet neck, smell your hair, and kiss your face. Everyday I memorize the details of how you look, the feel of your soft skin. I take so many pictures just in case It should decide to creep out of the shadows. That is a fear so real and devastating I rarely allow myself to think about it. Time is a hard concept, it is wonderful to have, but it’s fleeting nature is scary. You are my strength and inspiration, my beautiful, loving little Max. We are a team. I need you to keep me going, to remind we what is important. And to you I give my strength, my love, my devotion. We will do it together; I know it can be done. We are forever bound as mother and son.
I love you my darling little Max.


FOR MAX

Last night while I was sleeping I saw you in my dreams
You were standing, walking, talking,
and doing many wonderful things
You looked into my eyes, so I knew that it was you
The boy whose little body was doing what he asked it to do
In the morning it seemed so true...
when I saw your knowing face
I knew that it was you who took me to that place
But in the morning again, we face the growing fight
Of dealing with a body,
that won't do what it does at night
My darling little Max
I love you as you are
-with all my heart and soul
But every day I'll battle to try and make you whole