Making Sense of May

So May. Here we are again. 

I am tempted, some days, to say “May” like Jerry Seinfeld used to say “Newman”, this month of double awareness.   I don’t know why some days the weight of this gets to me, that NOW WE NEED TO BE AWARE OF NF AND BRAIN TUMORS. I can’t remember the last day I was NOT aware, so, what’s with May?

Especially since so many of my friends are in both of these communities, social networking is overflowing with awareness facts, pictures, graphics, etc.  I find that inspiring, motivational, depressing, and overwhelming all at the same time.

See why it is hard for me to even pick out a paint color? I am perpetually conflicted. 

 Reading through my blog from last year, where I describe our family’s journey…ugh. I know that was an important thing to do, but it is way past “merely a flesh wound!” , if you know what I mean.   If you want to know what life is like with NF and brain tumors (and why I am scary), that’s a pretty good place to start.

But I had a thought today while running, once I got to a quiet side street where I was not just thinking “yikes, another landscape truck? Dodge! Dodge!” (meaning my action, not the truck brand).  Today is gorgeous. Spectacular. Right now it’s about 63 degrees and brilliantly sunny, the forsythia are blooming and the flowering trees are flowering, I could hear birds chirping and squirrels scratching at trees (I double checked, I had a moment of worrying that it might be a larger woodland creature, but no, just a squirrel). It was GORGEOUS.  I don’t like running, and today I really felt tired, but the beauty of the day just hugged me.

Two days ago it was 43 degrees and raining here, like Noah digging out plans for an ark kind of rain.   Roads are still closed by us due to flooding (I toyed with the idea of adding a mile to the run to go SEE the flooding, but then my body told my brain to shut up and head back home).   This winter was epic, even by the standards of the northeast, we had so much snow, my early perennials were very late this year because the gardens were buried under 2 feet of snow until March.

Youngest child & dog, walking ON TOP of 15 inches of snow. Cold. Cold cold cold.

The dark, the cold, the endless precipitation—it was a tough winter.

my viburnum after storm #493

I don’t know what May is like in other parts of the country.   But here—well, in another week or two we’ll be past the danger of frost and I can plant annuals in my flower pots.  Our yard finally needs to be mowed for the first time this year. Everything that was brown and frozen and ugh is now alive and lush and beautiful…

Not fully grown, my evening primrose are still only an inch off the ground, the butterfly bush is just getting its first green buds, the hydrangea and viburnum are just showing where their leaves will burst forth in a few weeks. By the end of May, this potential green will be realized. 

my viburnum today, buds galore!

In Jersey—and much of the northeast, I figure-- May is a month of rebirth, of everything finally emerging from winter and bringing relief and hope that summer really is around the corner.  Winter (especially this year) is so long and so hard, it makes us appreciate so much more when spring finally comes.  The air just smells good today.  The birds sound so happy (the winter was so quiet).  I am so happy that May is finally here!

I had this thought, while running, a thought that having both Brain Tumor and NF awareness in the same month is really so meaningful…because May is so much a month of hope. We’ve had terrible losses in May, terrible grief over friends we love, lost to these two awful things…but there is still hope in the midst of that…hope that our love and memory for these children and adults can fuel our work for a cure.

Brain tumors and NF are both scary frozen wastelands a lot of the time. Nothing about either is nice…BUT within the communities that have grown around these dastardly beasts there is hope and love and a sense that we are moving towards summer.  Right now we may only see potential for a cure, for treatments that work without destroying a child’s future, for understanding the cellular mysteries NF and brain tumors hold…

But just like my viburnum and my hydrangea, that potential WILL come to fruition. I really think it will—and the hope and new life and green and sunshine of May are a WAY better time to think about these awful things, to see them in the sunlight of hope. 

By August the sedum this owl is guarding will be taller than the owl.

Ok, that sounds maudlin, but I really don’t mean it that way.  If both months were in February I would have to hide under my bed.  Having May be the awareness month for both of these things that have truly changed everything about our family is in some ways a blessing.  The beauty of this month can be a hopeful lens through which to present and understand the realities of brain tumors and NF.

We appreciate the green and warm and sun so much more after the awfulness of the winter we had.  And after the awfulness of rather a lot of the last almost 10 years, I appreciate the hope that is fostered in this month of May.

Next Tuesday is MRI day. We may be basking in sunshine or once again hoping for that potential yay to find us again…I don’t know. But I am trying, fighting against my wintry self to see the hope in each day of May, instead of the painful reminders of what’s past…to see the hope.  

Live. Hope. Find a Cure.

       

So...Now What?

May 31


So today is the Last Day of Brain Tumor and NF awareness month.

Tomorrow it will be like this whole ugly business never happened, especially if I go and blog about something like Jersey humidity or what kind of cake I am craving.

That would almost always be yellow cake with buttercream icing, just as an fyi. As much as I love chocolate everything, I prefer yellow cake. You’re welcome.

So, now what? Now, you few brave souls who slogged through this tale of woe, now you are left at June 1, the summer shining not too far off. You also are probably totally like “HOLY CRAP, no WONDER she is a terrifying Jersey-girl-snark-attack-amazon-beast woman most of the time! She used to be so timid!” as you look for the nearest emergency exit. Heck, that’s how I feel after writing this for a month.

Even I didn’t totally realize how bad it was, these last nearly 9 years. Yeeks.

You do whatcha gotta do, you know?

G, May 2013

And once you get past establishing that yes, you are out of range of my scariness, you are probably like, so now what?

Well, I heard on Oprah radio this morning (don’t judge), “pain brings purpose” (it was an interview with Fran Drescher, she was talking about surviving cancer). I know for our family, pain DOES bring purpose. The two times I ran half marathons were fueled almost entirely by my anger and pain. And Clif bars. Ok, and hazelnut coffee. Our Coffeehouse gives purpose to our pain. Dave jumping in the Atlantic for Camp Sunshine is fueled by the pain that gains us entry to that remarkable place (and gratitude for the lifeline Camp has been for us). We’ve sold bracelets and chocolates and random tchotchke to help fund research for a cure.


R, May 2013



For us, DOING something makes us feel less like victims of NF and low grade brain tumors and more like recruits in the ongoing struggle to make these things STOP hurting people we love.


So…what can we do?

Well, we try to support groups doing research. The Children’s Tumor Foundation (www.ctf.org) is a good place to start, and the NF Endurance arm of CTF has been our go-to fundraising thing for the last several years. Come run with us. Ok, rephrase, come run with Dave, come “run” with me (I run /walk, using the Galloway method of surviving races, manage to do the Philly half in 2:15 this past year).

CTF also has NF walks around the country (if you don’t even feel confident “running” like me…although confident has never been my problem).

The NF Family Association at CHOP provides support and information to NF families who are patients at CHOP. This is a new organization, and I am really excited to see what they are going to be doing. This is sorely needed at CHOP. You can find the NF Family Association on facebook.

The Pediatric Low Grade Astrocytoma Foundation ( www.plga.org ) specifically funds research on low grade brain tumors. This amazing organization was PARENT initiated (talk about giving pain a purpose!) and has made huge strides already in understanding and targeting low grade tumors. There are many NF applications to the work of PLGA, and I think we will be looking more in this direction in the future.

PLGA sponsored the sorafenib trial; while the trial was a disaster (I believe it closed within a few weeks after G’s catastrophic scan, other kids had similar yikes), the fact that this organization is funding low grade specific therapies so fast is amazing and a great sign of hope. We have no regrets about trying this experimental drug.

We also try to support the places that give us those lily pads, those moments of hope: Ronald McDonald Camp, www.philarmh.org , Camp Sunshine, www.campsunshine.org , and the Friends of Jaclyn, www.friendsofjaclyn.org , Caring for Kids with Cancer. These make Genna’s life happy. We support them (and you can too). The Children’s Brain Tumor Foundation, Supersibs, the Race for Hope folks at the Brain Tumor Society, the 46 Mommas Shave for the Brave… all of these have meant a lot to us in our journey.

So we try to give back. I’m not going to lie…this journey is long, and sometimes the dull ache makes jumping in very difficult. Those awful pain moments provoke me to do silly things like sign up to run 13.1 miles all on one day. The dull ache months are hard to overcome. But we have to try and keep moving. We aren’t alone in this, you know.

And ultimately, we are so grateful. Even as we have lost so many friends (even within our own family), we have gained so many in the NF and brain tumor community. We have experienced amazing love from people we’ve never met. We’ve come to understand that God is always with us, even if sometimes it seems like we are alone. We have overcome our fears and tried to parent in a set of circumstances no “What to Expect when You’re Expecting” book even touches.

We have lost too many children to NF and brain tumors. For them, we have to keep going.

For them, we have hope.

For our Genna, and our Rosie, and yes, my husband Dave, we hope.

To quote one of my favorite singers, Sara Groves, “hope has a way of turning its face to you just when you least expect it”…

I hate surprises, but being surprised by hope is my favorite thing ever. I pray that as we enter our 9th year of brain tumor and nf struggle, that we are surprised by hope frequently…because that is a surprise we love to share.

Peace out, friends.

kc

The Cams Crew, May 2013