January 21st is a day I hate with a passion. A day I would erase from the calendar if I could. It is the day that McKenna was diagnosed. I vacillated about whether I should write today - Dave likes to say that it's just another crappy day on the calendar. But try as we may, we really can't ignore it. Today is the day that our lives were forever defined by the timeline of "Before McKenna Got Sick" and everything after.

I wrote the following words last year, but I really can't explain any better what it is like to have your child go from seemingly healthy one day, to getting a terminal diagnosis the next. Please read....there is a family right now somewhere in the U.S. getting this exact diagnosis and feeling these emotions. This is why we need to keep working towards a cure.....

A cancer diagnosis changes everything about your life no matter what the prognosis. But when you are told that your child's cancer is terminal, that there are no viable treatments anywhere in the world, that you only have 9-18 months and you should go home to make the most of what is left, your life as you knew it is totally obliterated. Once the words are spoken, with one tick of the clock, you realize that nothing will ever be the same again. And though you haven't yet lost your child, you start grieving in that very second.

"Grief is a multifaceted response to loss...Although conventionally focused on the emotional response to loss, it also has physical, cognitive, behavioral, social, cultural, and philosophical dimensions." (wikipedia)

Out of all the definitions of grief, this one struck me. "A multi-faceted response to loss." It helps explain the grief that parents like us experience even as our terminally ill child lives and breathes. For in that moment after diagnosis, you begin to grieve the loss of the hopes and dreams you harbored for your child. A future where you can imagine birthdays, soccer teams, graduations, weddings, children...it all dies the very instant you are told your child's diagnosis. Murdered in cold blood by the monster that we call DIPG.

And as the defintion states, it's not just the emotional response. There is an instant physical response to this grief (I can feel it even now as I write this). The overwhelming need to run, to unhear the words. Your stomach turns and you feel the need to vomit. The shaking and cold-blooded fear that runs through your veins as you fight the reality of what is happening.

Cognitively, your once agile mind turns to a swirling eddy. You fight to function because you know your child needs you now more than ever, but you become forgetful. You research and try to remember convoluted care instructions, even though you find it difficult to concentrate because of the incessant drumming occuring in the back of your mind - "My child is dying....My child is dying..."

Behaviorally and socially your lives change in that instant as well. You want more than anything to curl up into a ball, to hide from the world. You have trouble interacting with others, you can no longer relate to their "normal" lives. You re-examine relationships wth family and friends through this new lense. You lose friends and gain new ones. And though inside you are screaming for many of them to go away and just leave you alone, you need these people more than ever. They are your lifeline, your support. And your child needs them too, so you push yourself mentally and physically to stay connected to this world.

Culturally you find that this modern world doesn't do grief or illness well. It scares people and they don't know how to interact with you. Some are so scared or unsure that they disappear from your life rather than have to deal with it themselves. But you also find your village.....those that surround you and care for both you and your child. People whose hearts are strong and large enough to absorb the sorrow that emanates from you.

And philosophically. I don't care what your beliefs were, you question them. They are tested and changed - stronger or weaker, broken or built - whatever they become, they are not the same beliefs you had before your child was diagnosed.

All this begins to happen in that one movement of the second hand - and while it is happening you still have to do the most important thing of all.

Love and nurture your child until they take their last breath.

And then the real grieving begins....
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We also have a dream....that one day children diagnosed with DIPG will be given hope for a much deserved future. And so we work towards that end.
On this MLK day we honor the man and his vision for all of us. Now, more than ever, this nation needs to feel HOPE.
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