This is a long rambling update, much more about me than about Elsa’s progress. Just wanted everyone to be forewarned! Hopefully I can figure out a way to blog non-Elsa updates without filling up everyone’s email boxes. I’m hoping to do some blog rearranging so that Elsa updates are in one place and my other ramblings are elsewhere – I should have stuck with CaringBridge! Much like some people like to rearrange the furniture in their house, I like to rearrange my blogs, I guess.
I think that anyone who blogs about their children/family goes through this crisis eventually. Am I doing the right thing by sharing our life so openly? Am I putting my family at risk? Is this safe? Why am I writing here? When Elsa is grown-up enough to read this stuff, will she find her mother’s candor horrifying? Will she feel exploited? Will she feel that I invaded her privacy without her consent? I thought about these questions before, but some recent events have got me spiraling again – wondering if I’m doing the right thing.
I’ve mentioned here before, but I’ve been semi-active on the Leukemia & Lymphoma Society discussion boards. Soon after Elsa was diagnosed, while I was furiously googling, “My kid has cancer,” I stumbled on the discussion boards and they were such a relief. Families from all over the world, discussing all the things that my non-cancer friends couldn’t help me with: vincristine-related neuropathy, neurontin dosage, morphine, clinical trials, ER procedures, what to pack for the hospital, etc. It was a wealth of information that I desperately needed. My first post was something to the effect of “My toddler has leukemia and won’t stop screaming – Help!” I got a few emails from other parents, offering support, condolences, and hope. One mom, in particular, sent me some valuable information regarding pain control and a link to her Caring Bridge site, where she wrote about the last 2.5 years of her daughter’s treatment. Those pictures of Emma Grace – off treatment, healthy, vibrant, and with beautiful shoulder-length hair (!), were like crack to me. I would sit there at my screen, after my steroided-out, limping, screaming toddler had finally succumbed to sleep – I would sit there and stare at the little slide-show of Emma Grace’s pictures. I would stare longer than you are supposed to stare at a stranger’s child and cry and try and imagine the unfathomable possibility that Elsa might look like that some day. I would force John to come over to the computer and cry, “Look! Look! That’s Emma Grace! She’s better! Elsa could look like that some day!”
Emma Grace’s mom and another mother of a child with ALL have become my friends through the internet. Certainly not friends in the traditional sense, especially since we’ve never met, but people who I hold in my thoughts and with whom I correspond – sometimes about cancer and sometimes not. I have stayed active enough on the boards too, responding to parents’ questions with whatever knowledge I’ve gained over the past 9 months. Occasionally, I still ask questions myself and I always receive timely, thoughtful replies. Recently, though, there was an incident on the discussion boards that made me reconsider the time I’ve spent there. I won’t delve too deeply into the story, because it’s pretty long and very sad, but I’ll try to give a brief overview.
One of the mothers on the boards has been posting since before I even joined up back in July. She had a really tragic story and her daughter passed away from ALL early this year, after a horrific fight with many, many complications. Soon after the child’s death, the mother gave birth to premature twins, one of which had a heart defect requiring surgery. Again, very soon after, this same mother was diagnosed with advanced breast cancer. Each step of the way, it all seemed too much to bear. Everyone on the boards would respond with something to the effect of “We are praying for you. We don’t know why your family would be stricken with such misfortune.” She never asked for money – only prayers and support.
Then, just a few weeks ago, someone joined the boards and outed this woman as an alleged phony. The new board member claimed that the entire story was fictitious and she had some proof via other discussion boards where the unfortunate mother had posted with inconsistencies in her story. Everyone on the LLS Boards seemed to come to the same conclusion: If this woman’s story is true, then it is very tragic. If this woman’s story is fictitious then, thank goodness there is not actually a family carrying such burdens. Finally, everyone seemed to agree that, if she really made up the story, her life is almost equally as sad. Either way, sympathy seemed in order.
Initially, I was somewhat bemused by the whole situation – almost like it was some complex soap opera I was watching. As days went by, I couldn’t shake the story though. I kept returning to the boards, hoping this woman would return and explain herself – explain if any of it was true. Many who have heard this story from me have pointed out that, if she is actually writing fake stories, she could be back already, as a new parent with a new story. I’ve started to feel like the internet is this dark shadowland full of phony stories. And then I remember that my daughter is out there in that shadowland. Photos of her face and her body are available to the crazed, sinister masses. Some of our darkest moments as a family and many of our joys – they are all available and unfiltered.
Usually, from deep inside my anxiety chasm, where I’m sure I’ve permanently sullied my child via internet, I almost always come back to Emma Grace. I see myself sitting at my computer. On the couch, lies our sweet baby, bruised and swollen, angry and pained, implanted with medical devices under her skin, but given a good, fighting prognosis. My child has a good prognosis. My child has cancer. My child has cancer. That’s the name of the discussion board, by the way. My Child Has Cancer. I can put myself back there so easily and I can see those pictures of Emma Grace and I can remember how ravenous I was to read her story. Tell me how the story goes and tell me how it ends, Emma Grace. Tell me about surviving steroids and tell me about how much you love wearing pigtails now. Tell me about how you no longer take narcotic pain medicine and how you are learning how to read and write. Tell me how your teacher praises you for being such a delightful, normal kid, even after nearly three years of cancer treatment. Tell me all about it all and I want details.
I haven’t come to a conclusion about all of this yet. I can’t say that, Yes, I feel 100% confident that I’m doing the right thing by my child. I actually never feel sure about anything, to be honest. Certainly though, I am doing the best that I can. I’m writing and sharing all of this because I really do hope that other parents can sit down, a week after their child’s diagnosis and see Elsa. I want them to see every day of our journey, as much as I want to remember it as well. I want them to see that, in the morning the sun came up and, in the evening, the sun dipped back down and we are still here, having survived the interim. I stay on the LLS boards for much of the same reason. I ache to pay back some of the kindness that we have been shown. I long for this whole shebang (yeah, that’s right, I called cancer a shebang) to have meant something positive – whatever form that may take. If it doesn’t do us some good, then it was suffering for the sake of misery and that seems like an awful lesson to teach my child. I want to show her that we kept trying. Every day, we kept trying and, mixed amongst the grief and fear, we squeezed some fun out too.
Nor can I plead pure altruism here. My writing is very, very selfish, I can assure you. I can hardly understand a word of what goes on in my own head until I’ve written it down. As a child, when I would misbehave, I was always required to submit a formal apology, but I rarely uttered that apology out loud. 10 years old and, unprompted, I would sit myself down on the computer and write until I had myself truly convinced that, Yes, I’m sorry. Somewhere deep inside an 8 inch floppy disk at my father’s house, my apology letters are still paying penance.
My thoughts are jumbled and alarming in their seeming magnitude, until I’ve written them a beginning, middle, and end. I sit back and read and re-read until the whole mess sounds cohesive. Then and only then, as one of my cancer mom friends says, can I hang up my coat after a long day. Unfortunately for Elsa, her life is inextricably intertwined with mine for the near future and my quivering mass of thoughts orbits her as much as it does me.
This feels like it’s only a beginning of a discussion. I’ve really just asked the same question over and over again for 11 paragraphs. Is it OK to write here? Is it OK to feel compelled to bear one’s own soul to both friends and strangers, even if your child’s privacy gets in the way? I’m still asking.
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