The Right to Hope. (Day 121, Year 3)

I was scrolling through my daughter's medical test records today. This month, which also happens to be Brain Tumor Awareness Month,  it will be 16 years since Lily was diagnosed with a malignant brain tumor called ependymoma. The tests in May 2007 were endless and tell a story of a very little girl fighting a very scary war. 

The day we went to the emergency room after a month of unexplained and random vomiting, there was the type and screen blood test to prepare her for admission to the PICU. The day of her first brain surgery, there were all the pre-surgical tests; and then during her several hour surgery, there were dozens of bedside tests and blood products. 

I couldn't tell you how long her surgery was exactly. In my memory it is both too short and too long. 

We didn't ask until days later if the surgery resulted in a total resection. I didn't want to know.  I already knew too much and to be aware of that very specific fact--an unchangeable fact at that point--would make me aware of the road ahead. It would indicate if I could hope a lot or a little; if she'd have pigtails or a bald head; if I could plan her 2nd birthday party or her funeral. 

I know this sounds jarring and blunt: but when your baby is diagnosed with a brain tumor that is where you are left--wondering if you have the right to hope and what you have the right to hope for. 

We are blessed to be out of that acute period of time--and even the middle period of time after treatment when the constant MRIs truly felt like life and death. We are now in the long-term survivor world. We will always worry; and my daughter has long term side effects she will always have to navigate. There will always be the negative connotation of "diagnosis: brain tumor" and no matter how hard she works there will be people who see impairment instead of strength. 

We, of course, always see strength. 

My daughter is a survivor, a warrior and a role model to anyone who has to learn to stand back up every single moment of their lives. 

I try my best not to live in the May 2007 world; but sometimes, like today and probably most of May, I find myself strolling back there and scrolling through medical tests. I used to think it was not healthy to do this; but now I feel very strongly that it is the healthiest thing in the world to process and remember. 

When I remember those early days, I also acknowledge the present--the mothers who are sitting in a surgical waiting room today, waiting through a surgery that feels both too short and too long, too scared to asked and too scared to know. Their stories are just beginning and I think they need other mothers who started this walk long ago--I know I needed the mothers I met along the way. I still need them today. 

These new mothers need to know my daughter's story--the warrior. They need to also know that they are not forgotten. They need to know that we've been fighting for more research and safer treatments and equity in education and inclusion in sports and cures. They need to know that they can hope big--because we are hoping big right along with them--through every blood test and MRI and clinical trial--we are with them.