Monday, August 11, 2014

Inhabiting Shock.

Lily is 7 years cancer-free. It is official.

Her oncologist told us she is a survivor.


A survivor.

Did my daughter really survive a brain tumor? How bizarre.

I am in shock--not at her survival, but at her need to actually survive anything. She is a child; she is supposed to "survive" the first day of school and to "survive" summer camp and "survive" her spelling test. She is automatically by default and by natural design supposed to just grow up through childhood without actually having to survive childhood, because survival is an abstract, exaggerated term reserved for silly life challenges, reality TV and, when used in its very real, dramatic meaning, it is for  adult hostages and fire fighters and soldiers.

Children don't need to survive. Children just do.

Or more truly, they should. For 7 years we've been residents in shock.  It is a weird place to inhabit--the place where your child survived cancer, but you are still in shock at all of it--shocked by the diagnosis, shocked by the survival, shocked that others are still being diagnosed.  It is a place of joy--Lily is alive! It is a place of fear--what if it comes back! It is a place of fighting--She will walk and thrive and survive. It is a place of sorrow--children are dying everyday.

It is not a place where anything is clear. It is all a little fuzzy, framed by a protective layer of shock.

It is the feeling that numbs me and keeps me getting dressed each day; it is the sensation that keeps me feeling separate from the outside world, as if there is an electrified force field that shocks me to take three steps back. It is the the invisible rope that pulls me away from psychotic oblivion, when I get too close to falling in. It is the feeling that brain tumors in babies must be a mistake, must be somehow not-quite-real, driving me to work until my fingers are numb and my voice is hoarse to erase the knowledge of it all,  because there is no possible way that God would allow any of this to part of his plan.

It is the shock that I lived to tell the story and the shock that Lily will live to tell her own.

Shock is the place I inhabit everyday--a place where joy and sorrow exist; but before I feel either too fully, the shock jolts me back to the even point to protect me. It is the weakness that threatens to break through the shock.  Whenever I am just on that pinpoint of breaking down, of really analyzing and digesting everything that has happened, my old pal shock knocks on the door and soothes me.

It is shock that drove me on autopilot seven years ago to follow treatment protocols and search for physical therapy, because that is what I had to do. Shock wraps me up in a warm blanket, asks me to stop trying to understand it all and to stop thinking and just to do it all until I beyond weary, only to do it again and again.

The truth is, I don't ever want the shock to wear off. I don't want to feel the full weight of what happened and what is happening out there. I don't want to know. I don't want any of it. I'll drink my shock with a side of joy and a dash of anger. I'll take my shock straight up. I'll live in shock for as long as humanly possible, because to really live in the world where children get brain tumors and have to struggle to survive requires the kind of strength I simply do not wish to possess.

Tonight, as I know I will thank God because he has blessed my child. I will celebrate, but not fully because I am shocked that I have to celebrate.  I will sit and be still, cradled by the misunderstanding of it all,  knowing that maybe one day I will be strong enough to understand and understanding that maybe I don't want to.


  1. You are BOTH survivors - I don't know how you did it. truly amazing.

  2. May God bless your family and bring you to a place of His peace. I cannot imagine what you are going through, but thank you for sharing this to help us understand.

  3. Lily is amazing. I can't imagine that you will every get out of a state of shock, fear, sadness, joy and a million other emotions. I am grateful Lily is cancer free and that you all have one another. I love you

  4. I cannot even fathom the raw emotion your family goes through everyday. Your story makes me treasure each and day and celebrate everything. I truly believe your Lily was put on this earth to do great things.

  5. Lily is a rockstar ... and so are you.