Pediatric Cancer – Page 10

January 2, 2014

Suck It, Cancer: My Boy Is Five

Many, many moons ago I was in a crowded ER of Children’s Memorial Hospital. Our daughter’s ER stays almost always happened late at night or in the wee hours of the morning. We went when her neutropenic fevers reached the requisite 100.5 — the witching temperature for a child with cancer.

Often times there was a very kind and lovely social worker on duty. Tierney was her name. Once, when things didn’t look very good for Donna, I came out of our little ER room to get something for her. Tierney was there and took me aside. She asked how I was, how the family was. It was never perfunctory when she asked. She cared and she listened and it was easy to talk with her, to acknowledge the fear and terror I had become accustomed to in Cancerville. She was an amazing social worker.

That night she gave me some words of wisdom that still shore me up. She told me that while childhood cancer was a bastard, there would still be good moments in Donna’s life. Lovely moments, joyful moments of childhood that had not a damn thing to do with cancer. She encouraged me to recognize those moments when we were in the midst of them. To own those moments, seldom as they may be some days, and really feel them. And then, once the joy and wonder and love were acknowledged to say, “Take that, cancer.”

Tierney’s point was that while cancer sucked, like, supremely sucked, it didn’t banish all the good in our lives. Cancer didn’t have that ability. It could wreak havoc inside our girl’s body. It could create fevers that had nothing to do with infection, but still required a long hospital stay. It could make Donna’s hair fall out and rob her of the ability to jump and run like other little kids. It could kill her, take our little girl’s life way the hell too soon. Cancer could do all those things, and did, but it could not touch the joy and love in our lives.

Tierney wanted me to remember that.

And so I do.

Today, her words are really resonating with me. Today, you see, is a Fuck You, Cancer kind of day. Today, my oldest son, my boy, Donna’s beloved brother, turns five. Happy Birthday, dear boy. Happy Freaking Birthday!

My husband and I have been parenting for almost nine years now, but today is the first day we have parented a five year old. That, my friends, is a gift. It’s my son’s birthday, but that gift is all ours to enjoy and appreciate. So you’ll forgive me if I am a little verklempt today. I can’t seem to stop the tears from welling up here and there and pouring over.

I am so happy to be this boy’s mama. I remember with intensity the joy Donna took in her brother. The love she showered on him in the few months their lives overlapped. The abject anger in her voice when, during her vigil, she popped straight up in bed, alarmed that her Dad and I were discussing taking her baby brother to the ER because it was a Sunday and he had a fever and something just wasn’t right about him. “NO!,” she screamed from the bed.

She never wanted for her brother what she herself had endured.

The selflessness of her love astounded me in that moment of Donna’s vigil. There she lay dying, knowing her fate, and she still had it in her to know that an ER was no place for her baby brother. Donna loved her brother so much.

So I welcome the tears this fifth birthday of my son. Somewhere, I know and feel, that Donna is still loving on her brother (both brothers now), and she is loving that her little brother is now older than she ever was. Because that is just the kind of girl she was.

And as sad as I may be on any given day to no longer mother a daughter, to know that cancer took my Donna from me, today is a day I can gladly and joyfully tell cancer to take a hike because today is a good day, a joyful day, a milestone day.

Today, bastard cancer, today I became the mother of a five year old. And there is not a damn thing cancer can do to take that from me.

Happy birthday, dear boy! May five be your best year yet.

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November 13, 2013

Not a Box

One of my favorite books for the kiddos is called Not a Box by Antoinette Portis.

It is a great celebration and exploration of a child’s imagination, how a child can take a cardboard box and transform it into a race car or a rocket ship just by thinking it. I love the pride of the featured bunny rabbit as he stands his ground with the naysayers who insist the bunny is merely sitting in a cardboard box.

Bunny knows better and I empathize with him.

I have a box, too, that a lot of people would look at and see just a box. I know better, though.

In July I wrote about the need to clear out my daughter’s closet to make room for the new baby boy we were hoping to adopt. Well, it turns out that writing about clearing out the closet was more of a psychological step than an actual declaration of my actions. I actually didn’t get around to clearing out Donna’s closet until mid-October, after a month of pulling baby clothing out of a hamper left on the dining room floor, and four years exactly to the week of her death.

That was no way to welcome Mary Tyler Baby into our family. It was time, and so I got about the hard work of going through every stitch of clothing Donna every wore, from birth to death. Most of it I packed up and gave to three separate friends, each with a little girl of their own who could use Donna’s clothing. I made very conscious choices and while I can’t say it felt right, per se, it did feel necessary. And oddly hopeful.

What I couldn’t bear to part with remains in the box pictured above. A very few treasured pieces that most recall Donna to me. Her dance recital costume, her sailor suit, the pajamas she was wearing when she died in our bed.

Donna had tremendous style, which is a really odd thing to say about such a little girl, but it’s true. When I think of her, my memories are often attached to certain things she was wearing. A red beret on Thanksgiving day, pink sequin mary jane gym shoes for school, a black t-shirt with dandelion seeds blowing across it that were paired with leopard velour pants Donna wore the first time she sat upright and played on our bed, toppling over every few minutes with giggles loud and clear.

All of those treasured things now rest in this box. All that is left of Donna’s time here on this earth of ours now rest in this box. The last few scraps of fabric that I am able to justify keeping for those moments I really need to indulge my grief now rest in this box. So, you can see, this is not a box. It is more — much, much more.

This is not a box, but an avenue for me on the road to Donna.

This is not a box, but a time traveling system that transports me back to those very few moments I mothered a daughter.

This is not a box, but the warm embrace of a joyful, sweet little girl who loved so much about this world of ours.

This is not a box, but my ticket to a less complicated time where things made more sense and sadness wasn’t so heavy.

This is not a box, but a key to the best parts of myself that Donna helps me nurture every day.

This is not a box, but evidence that once upon a time there was a girl named Donna and she was amazing.

So you see, my friends, imagination is a wonderful, wonderful thing. It can allow me to transform a box full of fabric into a rocket ship made out of hope that carries me back in time to be with the most extraordinary girl I ever met. And the naysayers amongst you can’t tell me anything different, because I know better.

This is not a box. Clearly.

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October 8, 2013

The Greatest Pumpkin: Honor Donna and Have Fun at the Highwood Pumpkin Festival

Four years ago we were losing our oldest child, our beautiful Donna. She was in the last weeks of her life which would end on October 19, 2009, after a nine day vigil. The number four keeps smashing at me. Donna was four years and three months when she died, which means soon, very soon, she will be gone longer than she was with us.

Damn, that hurts.

Because Donna’s life ended in October, pumpkins abounded. They were everywhere and still call her to mind. Mid-way through the vigil, some dear, dear people took it upon themselves to create their own vigil right outside our front door. A symphony of jack-o-lanterns that were magically lit each night by a rotating crew of well wishers. Pumpkins. They were beautiful and gave us tremendous comfort — such a beautiful, beautiful tribute to our Donna and her wonder, her joy, her spirit.

Donna never saw those pumpkins, but we did. Four years later, those pumpkins, and all pumpkins, are entwined with those last weeks of our girl’s life. That great orange globe, so present this time of year, is another symbol of our girl, and most especially, the time of year that we said our last goodbyes to her, assuring her that we would meet her there, wherever “there” might be.

Last year, right around this time, I got an interesting email from an organizer of the Great Highwood Pumpkin Festival. She had come to know Donna through my writing and storytelling and wanted to somehow integrate Donna into next year’s festivities — now this year’s festivities — as some sort of charitable tie in. Was I interested? Could I help?

Hell yes.

And after a couple of introductions, Donna became the bridge between the The Great Highwood Pumpkin Festival and one of our favorite charities, St. Baldrick’s, the number one private funder of research for pediatric cancer. I think this is pretty damn cool and I hope you do, too.

So this year we will be honoring our girl at a couple of events at The Great Highwood Pumpkin Festival and would L.O.V.E. for you to join us. Here is the 411 on this super fun, family friendly, best pumpkin festival ever.

St. Baldrick’s Pumpkin Shave, Saturday, October 19, 3 p.m. – 6 p.m. One of my favorite questions since starting fundraising with St. Baldrick’s is, “Do you have a head?” We all do, right? Why not shave yours with all the proceeds going to much needed research for pediatric cancer? Or, you know, volunteer your husband’s head like I do. Or simply volunteer at the event itself. The link will get you to where you need to go to do any or all of the above. My family will be there and I will say a few words of gratitude to all those gathered. This is a special day for us, as it is the fourth anniversary of Donna’s death. Helping to raise dollars for other children with cancer seems like the most fitting thing we could do to honor our girl.
Great Highwood Pumpkin Fest’s 5K Run, Walk and Kids’ Dash , Sunday, October 20, 8:30 a.m. – 10 a.m. Each year at the Pumpkin Fest a different charity is selected to donate proceeds from this much anticipated 5K. With Donna as inspiration, this year’s selected charity is St. Baldrick’s. I love this for many reasons. Donna, in the annual Run for Gus we participate in each summer, loved the idea of “running.” While Donna’s cancer prevented her from being able to run fast, she loved the idea of running and racing in general. With this very family friendly event, you can start your day with a group warm-up, the kid’s dash, and then slide into that 5K through this scenic North Shore location. Click on the link above for all the details, or register directly here, but you have to do so by October 17 if you want to do it online. Oh, yeah, and no race for me this year. A newborn is a great excuse, right?

So there it is. If someone had told me four years ago, just at the onset of sitting Donna’s vigil, that I would be spending her death anniversary four years later making a public appearance at a pumpkin festival, well hell, I don’t think I could have seen or imagined it. But, as I am fond of saying, this is how I parent Donna now, by spreading the lessons her life taught me and raising much needed research dollars for pediatric cancer. I chose hope in 2009 and I choose hope in 2013. Donna taught me that. And all monies raised for St. Baldrick’s during the event will be credited to the Donna’s Good Things campaign, which has raised over $180K to conquer kids cancer since March 2012. Now that is cool.

Think about joining in the fun at the Highwood Pumpkin Festival, October 17th – 20th. The Great Pumpkin that Linus sought for years can be found there — it is the heart and spark of an entire community coming together, surrounded by pumpkins, raising money for children fighting cancer.

Thank you, Donna.

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