Claiming Hope

Hope is the thing with feathers

That perches in the soul

And sings the tune without the words

And never stops at all.

                        Emily Dickinson

            Ten days ago, a friend’s daughter was diagnosed with a brain tumor.

We are not super close, this friend and I, but I have known her since childhood. Growing up, our families spent a lot of time together, my dad worked with her dad, we were in the same prayer group, etc.  In grown up life, my husband’s sister married her brother; two of her children were classmates with my children, and I taught 3 of her kids over the years.

So I know her well enough that the gut punch of any new diagnosis was magnified a hundred fold.

            Our smite was supposed to protect everyone else who ever knew us.

            Seriously. WE ALREADY GOT DEALT THE RANDOM BRAIN TUMOR CARD, HOW MANY MORE ARE IN THAT STINKING DECK?

            My “no F-bombs during Lent” went out the window on literally the second day. Dang.

            Watching the pain ripple through family and friends, seeing from another vantage point what it must have been like for those who love us when G got sick…and knowing pretty solidly how little S’s parents were feeling in each of those first nights in the PICU with their third grader, the long hours waiting for answers in the surgical waiting room, the dearth of information, worrying about your kids at home…my soul just shook. I don’t know how else to describe it.

            My husband doesn’t have the searing memories of those first days like I do.

            He is lucky.

            I just can’t believe there is no herd immunity for smite. Seriously. I have 2 kids with brain tumors. How can this happen to anyone else we know from pre-brain tumor world?

            I know my friend is not mercurial like I am. She is zen and steady and wrangles 9 kids with a smile. I am hiding under my bed most days with 3 kids (2 of whom are technically adults!).  I have talked to her via text a little to offer support and little words of whatever. I don’t want to be Bargey McBargepants—and not everything I know will be helpful right now.

            But I need her to know Hope.

            Hope is real.

            When things are so, so dark, and hope seems to be lost or at the very least obscured…hope is still real.

            Hope sings the tune without the words, and never stops at all.

            Hope has to be grabbed in the dark, like a cosmic Marco Polo…holler for it, and reach out. You may end up splashing around for a while, but eventually, you might just catch it.

            I have written before about my challenges in holding on to hope over the years, my pins, bracelets, pictures, words, things I hold on to—literally tangible items—to remind me of hope.  I desperately yearned for hope, and some days had it, some days couldn’t grasp it…but hope is real.

            I have to find a way to share this with my friend.

            Two days after this devastating news, my G and I trekked to Massachusetts to surprise two of our dearest brain tumor friends who are celebrating their 21^st birthdays this year. I felt a little nervous about driving there alone, but the conviction that we Had To Be There was unshakeable.

            This was a celebration of 21, yes. But really—we were celebrating HOPE.

            These two mighty young women have been dealing with brain tumors and all their concurrent horrors for most of their lives. Surgeries, chemo, radiation, complications, lingering challenges, everything that onco-yikes can be, these young women have faced with strength and dignity. They are beaten but unbowed.

            As we shared pizza and ice cream and some ridiculously tasty cookies from NYC, all I could feel was a deep love and joy for these young women. They are both still in the thick of things. Both face challenges every minute. AND YET they ARE HOPE. They are hope over time.  

            Funny, spunky, and just keep going, slowly sometimes, but they keep on going.

            Even in the worst of brain tumor ugh—to paraphrase Maya Angelou –

            Still, they rise.

            And with them, their families, those who love them, their friends in and out of the brain tumor community. Hugging their mommas, these mighty, beaten but unbowed women who stood with me in our toughest hours, I just felt that connection, the connection of shared hope and pain and love and understanding.  Just being there reminded me that even as my soul relived that terrible aloneness of our own early days in brain tumor world, NOW we know we are connected to a much larger community—just not being alone is a great, great hope.

            Seeing these mommas renewed my hope.

            Hope does not guarantee a happy ending. Hope just helps us navigate whatever the story is in the moment we are in it. Hope helps us connect to something bigger than the bad moment that threatens to swallow us.

            This is the hope I need to share with my friend.  Hope is real. Hope is slippery, but it is real, and when things are darkest…hope can help us get through the night.

Please pray for little Shannon, as her family works to plan their next step through great uncertainty….