Wednesday, May 22, 2013

The Figure 5 In Gold

Today we said good-bye to beautiful Caitlin, that spunky bt friend we met in 2008. 
Nothing is worse than a funeral for a child.
Today, we remember and celebrate Caitlin. And for her, and for all our bt friends (and nf friends) lost, we will never stop fighting for a cure.

May 22


This was our mantra during this time: (borrowed from my friend Alice’s cb page for her bt hero, Lexie):

Hope has two beautiful daughters - their names are anger and courage; anger at the way things are, and courage to see that they do not remain the way they are.

-St. Augustine

I generally had a tad more anger than courage, but the quote spoke to me.

In March 2009 we had another Coffeehouse for a Cure, by now it was an annual event. I made a slide show for that, it wasn’t perfect , but it was the best I could put together.

song credit, Sara Groves

G was thrilled, her favorite singer BESIDES Chris Rice was Matthew West, and he donated an autographed guitar for the Coffeehouse…which the winner then gave back to Genna.

We tried to embrace each moment, amidst normal kid sick and all the busy-ness of life. We attended RU Lacrosse games (loved loved loved that), went to Great Wolf Lodge with the kids, tried to just LIVE.

The entries from 2008 and 2009 are also marked by so many losses of brain tumor and NF friends…Hadley and Nora and Erin, so many others. We loved those children, even though we only knew them online, we loved them and deeply grieved their loss.

G had another neuropsych evaluation, a testing of cognitive stuff related to brain tumor injury…it went well, she was mostly stable or even a little improved from her first one. She was utterly wrecked about having to leave 5th grade and go to 6th grade, but we tried to stay on top of her therapy to help her with her anxiety.

That summer, Rosie turned 7; Genna turned 11; Andrew turned 14, and was going into high school.

We had always planned to have more children. Always. But with Genna’s diagnosis and the trauma of the years following (and the level of sick I get while pregnant—hyper-emesis for the better part of 9 months), we knew that possibility really was closed to us. As our baby got older, and G was off chemo longer (albeit plagued with constant issues), this reality made Dave and me both sadder. NF and brain tumors closed this door to us. That summer of 2009, I finally purged all the baby clothes from my attic.

And that is all I will say about that.

For the first and last time, G made it to 6 months between MRIs, but then her summer ’09 MRI was “stable but complicated”, so we went back to 4 month MRIs. Meh. Rosie was rock solid stable. During this time so many of our friends got really bad news…it was just so hard to bear, seeing everyone else in that awful place we knew so well.

G went to Ronald McDonald camp and got her hair cut…10” donated to Locks of Love. Yikes!


After. She was So Pleased
And then it was the 5 year mark. Five years of fighting.

I know for some folks the term “fighting” isn’t their word of choice. For us, it works. This has always been a battle, and the image of fighting gives us a sense of empowerment, of some force in the face of the ultimate yikes.

To mark that date, I turned to William Carlos Williams, my favorite…

The Great Figure -- William Carlos Williams

Among the rain
and lights
I saw the figure 5
in gold
on a red
to gong clangs
siren howls
and wheels rumbling
through the dark city.

How do you hold 5 years in a few paragraphs?

There really is no good way. I’ve been thinking about this, thinking about the chasm between five years ago and now. Thinking with some dismay about how much I’ve forgotten, how much has slipped away of the 10 years BEFORE this day. Thinking about the ups and downs and the terrifying speed of the whole thing. It’s an uber-clich√©, but the whole thing really IS like a roller coaster that never ends…and this week, strangely enough, I’ve been having some insane vertigo issues (just an inner ear problem, apparently), so I actually FEEL like I’m on a roller coaster.

But really, among the rain of the hard times and the lights of the beautiful people we’ve met, the doctors who saved my child again and again, and the wonderful organizations that made my Genna smile…the figure 5 in gold moves…

Five years is a wonderful/terrible milestone.

If Genna’s tumors were gone, we’d say she was at the magic 5 year remission mark. But we know in NF that’s not how things work. With NF, the tumors are still there, quiet now, but the gong clangs and siren howls do rumble somewhere, if only in the darkness of my maternal heart.

With every scan that emergency looms, that firetruck comes tense, if never unheeded! With every weird headache or crazy day, I feel the reality of 5 years of accumulated yikes.

For G, 5 years is a remarkable achievement, and a blessing. She fought hard, and for whatever reason she has made it five years. So many of our friends from the very beginning—friends who also fought so long and hard-- haven’t…

“… wheels rumbling
Through the dark city”…

Hadley…Nora C.…Sandra…Timmy…Emma…Nora U…James…Justis…and more friends, more angels as the years go on…Kyle, Jessica, Dakota, Ryan, Erin, all the names in my little list above times 5.

“the figure 5/in gold”…

We’ve earned this 5 years of Survivorship pin, but it comes inscribed with the names of all of our friends and the children of our bt/nf community who have ended their battle here. That’s a painful inscription, and I would dishonor these kids if I didn’t acknowledge that.

At the same time, I celebrate my Genna, and who she is becoming…from a terrified (and Very Strong Minded) six year old to a vivacious (if still Very Strong Minded) 11 year old…Genna is funny, compassionate, helpful, enthusiastic, and sweet. She makes me crazy about 6 times a day, and makes me better another half dozen times. She sings little songs and hates hiking just as loudly. Genna is curious and diligent, ocd and a worrier, loving to little kids, engaging to adults.

Is she like this Because of the last 5 years, or in spite of them? I don’t think we’ll ever really figure that out. But either way, the figure 5 in gold is hers today.

And for Andrew and Rosie, whose lives were turned over by the last five years…I am sad/glad for them, too…glad for the blessings they’ve shared, sad for the Mom & Dad they sometimes kind of lost in the crazy of the last 5 years. They’ve earned a sibling “5 in gold”, too…just like so many other sibs of kids with catastrophic illness. They are the unsung victim-heroes (not necessarily in that order) of this journey.

Our lives changed forever, in ways far beyond medical, on August 30, 2004. Dave and I are not the same…we are older, obviously, but again, in much more than years. My heart feels like it’s 400 years old sometimes. We are still trying to figure out what we’re supposed to DO about all this, how we are supposed to help good come of this. For every child with a catastrophic illness brings good to those they meet…they are KIDS, not saints, and the inherent dignity and beauty of a child is focused in the struggle for life and death.

We are off to Hersheypark today, a fitting place to mark this moment, even if I have no energy…certainly better than being in our house, the shadows of diagnosis day still lurk in corners on August 30. We will eat chocolate, swim in an over-chlorinated hotel pool, and look for the giant walking Reese’s Peanut Butter cup guy. We will LIVE today, NOT five years ago, even though I know that will require much effort. LIVE Today. Because Today, even if it’s a hard day, is worth celebrating.

We will honor the 5…take a deep breath, and begin the next 5…10…50…

scan day.

And we try to. Dave & Andrew ran again for NF Endurance in Philly that fall…we went to more lacrosse games, I returned to work for the first time in 10 years VERY part time, and we lived. But the shadow was always there.

1 comment:

  1. Thank you for writing your story. It matters. it helps, and it teaches... Loving your family....xxoo from another NF mom, D.