May Again

Fall, 2005.

I got to firstborn’s baseball game late. It was fall ball, and I don’t know why I was late, Dave and the girls were already there. But as I walked across the field, I could tell something was up.

The moms on the bleachers were all looking at me as I galumphed towards the field. From 100 yards away I could read their faces.

G had told them. I could tell, from across the field, that they knew the story we had not told.

One mom confronted me as soon as I was within earshot. Apparently G had told the moms quite cheerfully that she was excited about going on her Make a Wish trip. She didn’t know why she was going, but she was going to get to go to Disney World on a Train!

This was only one year, 5 or 6 MRIs, 2 chemo protocols, 3 surgeries into it, so…ok, I have no clue why G told the moms she didn’t know why she was going on her MAW trip.  Um, BRAIN TUMORS?? But she was 7, and DISNEY!

Sigh.

It’s not that we were trying to keep anything secret. Multiple brain tumors, vision loss, hydrocephalus, chemotherapy…that kind of gets public quickly. But baseball was firstborn’s realm, and we knew, at one year in, the effect our story had on people—he needed a safe place where brain tumors did not effect everything. An effect that could be read on faces 100 yards away.

Low grade tumors are hard to explain. One mom said to me that day, “so if it’s benign, it’s ok, right?” Even then I knew nothing about this was alright—but that was what she needed, to be able to be by my chipper, sassy 7 year old without crumbling. I respect that now more than I did then.

May is both brain tumor AND NF awareness month. For our family, the two have been inextricably tied since August 30, 2004.  We are uber aware.  When G told those moms in 2005 about her Make a Wish trip, we were still newbies; the wound of awareness oozed painfully through every day. 

Really, that could have been fall of 2006, after the trip. We’ve had a lot of baseball, and we’re a lot of miles into this journey…she may not have remembered why she went.  This many years of ongoing yikes later, the dates start to blur—which is a horror of a different kind for a history teacher.

This is the first year we have not held an advocacy/fundraising event for the Children’s Tumor Foundation (the NF research organization we do stuff for); this is the first year I don’t have new pins for brain tumor awareness month.  This is the first year in a while we haven’t had an MRI in May (it’s in June, if I can ever get through phone tag with CHOP).  We are no less aware—but we are navigating our journey in a new way.

I still plan to wear my random awareness clothing every possible second. It makes me feel better, somehow. Like my festive Wall of Courage or END NF t-shirts can defy the ugliness of these dual diagnoses? Yes. Yes they can.

My children who are affected by these diagnoses are old enough to have a significant say in how we tell THEIR stories. And we respect that.

 One still leads with brain tumor, then is surprised when people are horrified, and then just plows onward. The other is open about her story, if people already know, but she has chosen NOT to lead with it when she meets new people and works her way through high school.  We respect this, even as I know at some point we will have to face again the horrified expressions of parents who didn’t realize what we carry.  At a school banquet in  the fall folks at our table were talking about a young person they knew who had low grade, inoperable tumors, and how horrible and unbearable that must be…Dave and I just looked at each other. It wasn’t the time. We just couldn’t do it, but awareness gave us a smack upside the head over our house salads.

Meh.

Our work is far from done, obviously. We live with NF and brain tumors every day. We know that NF is progressive and unpredictable. We aren't done. The late effects of many years of treatment, the challenges created by NF and brain tumors are daily things to be dealt with and worked through, if not overcome.  This past year we lost several NF / BT friends, which is excruciating.   There is no way to state softly what that does to our hearts, here. No way. Everything about it is wrong.

But this is our path. We have to try and walk it the best we can, one foot in front of the other.

13 Mays since G’s tumor diagnosis, we are so grateful we have the time to figure out how to keep walking, how to keep advocating, how to have our children take ownership of their diagnoses.

In years past I wrote out our entire story up to 2013. Since then G had a ruptured appendix and whooping cough. Her sibling has had some other things that are hers to tell. The story goes on. If anyone wants to see that, it’s in 2014, I think, May. I just can’t read through it again today.

We are aware. We just need to figure out what direction our action should take down the road ahead. Because Awareness plus Action equals HOPE. Hope is everything. We’ve seen despair. In May, more than ever, we have to cling to Hope. We will cling to Hope. No matter what.

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For information about how to support Neurofibromatosis research, check out www.ctf.org , www.nfnetwork.org, or the NF Family Association at CHOP, and  join our G-foRce! CURE NF facebook page.

For information on research for low grade brain tumors, check out A Kid’s Brain Tumor Cure (www.akidsbraintumorcure.org ); for other pediatric brain tumor research, check out www.cbtf.org or www.curethekids.org

And if you are now singing "one foot in front of the other...soon we'll be walking out the door", you are welcome. ;)