Do you ever find yourself surrounded by people yet feeling alone? Not the normal alone. That I thoroughly enjoy. I love seeing a movie by myself or sit quietly in a Starbucks sipping my coffee with a good book. That is not the alone I am talking about. I mean the alone where you feel like no one truly understands how hard your life is, how difficult it is just to be you. There are days I wish I could run away and start over, like a kid who dreams of "running away to join the circus". It is a dream that you know will never come true because as a Mom your kids are your life, you cannot just start over.
Ever since I saw that new tumor on the MRI scan I have been struggling in a new way. For the last three years my prayer has been that Emma will get better, that she will beat cancer, that we will move from 3 month monitoring to 6 months to 9 months to 12 months, that life would balance out to some type of new normal. When I saw that tumor I realized that this dream was a pipe dream. We continue to fight. I looked up at our sweet Oncologist with tears in my eyes and asked, "It will never be over, will it?" she looked back at me with tears in her own eyes, "No, no it is not."
You see unlike most cancer kids ours has a genetic mutation that causes her to grow tumors all the time. Her body does not recognize that tumors are bad and stop them on its own like most people. For nearly all NF people this is not a huge deal. It means plastic surgery to remove cosmetic tumors or sometimes invasive surgery to remove tumors that cause issues but they are benign and not a huge deal. Emma is the rare kid that had a one of those tumors go cancerous...and at 2 years old. So already she was set up for a lifetime of cancerous tumors. I naively believed these last three years that if we could remove part of it and hit it with chemo the battle would be over, and it was...for a year.
I called my sister from the parking lot to tell her the news, I felt numb, I remember telling her, "this is my life now". I used to be a University Professor and left the house in heels. I used to travel once or twice a year with my husband. I used to have good credit and no debt. Never again. My life is now "Emma's Mom". It is appointments and tests and medication and MRIs and specialists. It is homeschooling and therapy appointments. It is drowning in medical bills and pay check to pay check. I will never be able to go back to work or own a home or travel again.
I know this sounds like a Pity Party...in many ways it is. I am mourning the loss of the life I once had, the life I thought I would get back. I know now that I have to find a way to be happy in this new life. I need to find a new normal. I need to be grateful that she is still alive and fighting. For right now I am not there yet. I am sad and feeling alone. My friends, although amazing, have no idea what it is like to have a death sentence to the life you fought so hard to build. Only cancer mothers can understand but even then their kids may win their battle and their lives can resume. They can go back to work and their kids get to have a childhood again. Not us.
Before you all comment on how grateful I need to be etc etc let me just say I will get over this, it is a process. I need to be sad and mourn my loss then bury it and move on with this new life I have been dealt. That time will come but it is not now. Right now I am allow to feel the feels.