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All-Star Game mish-mosh

July 13, 2011

I never thought I’d cry at the beginning of a baseball game, but yesterday, as the All-Star Game opened (Go, National League!), they honored Christina Taylor-Green, her family, and other victims of the January 8 shooting in Tucson. N was sitting on the futon with his lemonade and chips, and Dot was climbing on the dining room chairs, saying, “Climbing, climbing, climbing,” which is one of her new favorite words. And I was struck by how much I love them both and by how fragile and precious our happiness is and by how awful it is that anybody at all should mourn their child. And I cried. Not for long, but there were tears running down my face as I turned to extricate Dot from her latest climbing triumph.

Later in the game, they had a “Stand Up to Cancer” moment, and I was, well, suddenly cranky.

It’s not that I think people shouldn’t stand up to cancer. My grandfather died of a brain tumor. I’ve had friends go through cancer treatments that threatened their lives far too young. Cancer is scary and the fight against it is a noble thing. A noble, comparatively well-funded thing.

I realize that not many people even know what a congenital diaphragmatic hernia is, and that, compared to cancer, it affects a very small number of people. But cancer research has Jake Gyllenhaal and Tilda Swinton, and more celebrities than you can shake a stick at fighting against it, and powerful corporate sponsorships and many really moving and beautifully visual public service announcements like the one above. Every year I contribute to the “Walk for the Cure,” buy pink things, donate to prostate and breast cancer research at the local grocery story, and hope that cancer is cured in my lifetime.

But my son is dead, from a not terribly uncommon condition that is being investigated by only a few dedicated researchers whose work isn’t promoted or cheered on by celebrities or funded by Major League Baseball. Like stillbirth, placenta previa, and numerous other life-and-death medical conditions that affect babies, CDH seldom makes its way into the popular consciousness. A YouTube search on CDH brings up individual stories, some medical videos on diagnoses and treatment, and a few videos put out there by CHERUBS, the main active group attempting to promote CDH awareness. CHERUBS is very grass-roots, which is a strength, but a visit to their website makes it clear that they are operating on a very different level of funding than standup2cancer.org. They are made up of good people fighting the good fight with limited resources and not much professional help. I vote for their causes on face.book to help them get funding, and I root them on, and I wish they had more resources.

So I try to focus my own limited resources on charities that contribute to decreasing fetal and neonatal death of all kinds, who focus on increasing maternal and fetal health. There don’t seem to be many of these that are highly visible, either. I’m pretty sure there will never be a major public awareness campaign against the condition that caused Teddy’s death, and I can accept that. There are a lot of bad reasons for this – a cure to CDH would never bring in a fraction of the money as a cure for male pattern baldness (looking at you, Big Pharma). But there are also some more acceptable reasons: we (the human race) have cancers to cure, polio and malaria and hunger and hatred to banish from the globe, an imperative to start managing our resources and environment more responsibly. There’s a lot on our plate, and a limited amount of time. I get that. I can accept it and understand. I’m not even writing pleading letters to the MLB or my beloved Cubs or to Tilda Swinton.

And yet…

I would never want to take attention away from cancer research, but my son died before he even had a chance to live, and almost 150 babies like him are born into this world every day, and about half of those babies die, and I can’t help wishing more people knew that, cared about it, and fought against it.

Because these bits of happiness in our life are precious and fragile and important, and because it’s awful that anyone should mourn their child.

(Also, bald men can be hawt. Once we accept that, maybe we can push for some serious reallocation of resources. Anyone famous want to start a movement of head-shaving? Anyone?)

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2 comments

  1. I’ve had similar thoughts… When I had his chromosomal analysis presented to me I saw a handwritten clarification between my dr and the lab. Something as crucial as his gender needed clarification. She admitted she’d never seen a diagnosis like that. He had mosaic loss of the y-chromosome. If it would have been completely lost he would have been a girl with Turner’s syndrome. Yet he wasn’t. He was a little boy with mosaic Turner’s. Something that hasn’t even made it to the swedish list of rare syndromes. There are no swedish research. Knowing what it was like I researched Turner’s and finding only about what to do if you discover a young girl with it – no researh about a child in the womb, nothing at all about boys with this syndrome. I had to read up in English and Danish (too much fertilitytourism on my part – I speak Danish after 4 years of treatment there). And I know there’ll be no-one who will ever speak out about it… No one will ever care about the ones lost in late pregnancy or at birth. Doctors will still wonder what to make of the diagnosis…

    And not to take anything away from cancer-patients… Nothing like that. Just wishing for a moment… I would at least hear about his anomaly in my own language. At least that…

    Thank you for the comment on his name. I am by now content with choosing a name only for him, the reminder of that love. I struggled so hard with coming to terms with him actually being my child (as they all called him “fetus” – limit is 23’d week here) and even though I choose in the moment I saw him that I would bury him I very nearly buried him as “babyboy”. And then I thought of Aleksas and learning love. And I knew his name instantly.


  2. I completely agree. I’ve said similar things myself and possibly even blogged about as well.
    There are almost as many stillborn babies (at least in Australia anyway) as there are breast cancer victims every year, yet we never hear that. When I tell people that stat, they stand up and take notice, because it is shocking. But not enough people are shocked in to action about it. It is much easier to buy pink things, walk for cures. I wish there was a way we could change that to get our babies recognised. Mine, yours, all of them. Maybe one of our babies would have grown up to cure cancer, if they were given the chance.
    Thinking of Teddy today. Wishing he was here.
    xo



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