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Awareness Matters

October 5, 2013

Strange is our situation here upon earth. Each of us comes for a short visit, not knowing why, yet sometimes seeming to divine a purpose. From the standpoint of daily life, however, there is one thing we do know: That we are here for the sake of others – for the countless unknown souls with whose fate we are connected by a bond of sympathy. Many times a day, I realize how much my outer and inner life is built upon the labors of people, both living and dead, and how earnestly I must exert myself in order to give in return as much as I have received.
~ Albert Einstein

I started this blog just about two years ago, as a sort of venting space. A place where I could go and scream or celebrate or whatever I felt like doing after receiving our third autism diagnosis in less than two years. It was never meant to be a soapbox. But things happen, and you start to figure out that even if you just have a few people listening, it can matter. You see, this blog was in some sense an extension or replacement for the mass email style updates I had to keep sending family and friends, very often asking for prayers.

And then I wrote this. (Go ahead and click on the link if you have an extra minute). And later this.

Because one of my friends had received the news that I had long feared receiving myself, that her child had cancer. This friend was, quite simply, the only other person I had who genuinely understood at least some of what we were going through with Mary when doctors were telling us all kinds of scary stuff.

It has been a roller coaster of diagnostic theories for Mary. Every three months we would visit the genetics team. And each time they would pull up another syndrome that they thought might fit Mary’s symptoms. Each time I would research it myself while we waited on tests. Each time I would become mildly irritated at the lack of research and information available for these, often relatively rare, diseases. But each time, it was easy to dismiss because it felt like the doctors were just guessing. Just ruling things out.

Until they happened upon one where the bloodwork lined up. Until they found one that looked like a fit. Until they found ataxia telangiectasia.

So I researched it.

She would lose her balance and then her ability to walk. She would be in a wheelchair by ten, she would battle constant infections, very likely would get cancer and because of the nature of this disease, she would not be able to tolerate the cancer treatments. Either cancer or a common cold would take her life before she made it through her teenage years.

For six agonizing months, this new reality washed over me. These families were so strong, but they were fighting an uphill battle. There was almost nothing in terms of research. There was very little in terms of awareness. And how the heck are they supposed to be out there raising awareness and fundraising when they have to be at home caring for their children? But without that – without the awareness there is no funding and no research….no treatment….no cure… no hope….

We were lucky. Our genetic testing came back. The Friday before Mother’s Day, I got a phone call telling me that she was negative for the ATM gene mutation. That she did not have AT. There just are no words for the relief that came at that moment. But I have never forgotten that feeling of helplessness — Knowing that your child has a disease, a disease that could kill them, and one that is very worthy of research and funding because it would greatly impact other diseases as well, but that no one would pick up that torch. No one would be the hero and tell the world about this struggle and how much families like yours need the help, the research. How much these families need the hope that awareness campaigns can bring.

And so when September rolled around and I found out about Childhood Cancer Awareness month, it hit a nerve. Because it was far too close to home, and I didn’t see a single stinkin’ gold ribbon anywhere. Because, really, when you’re racing back and forth to doctor’s appointments and treatments and many of those take you out of state, I’m sure you have loads of time to spread awareness, right? (Note sarcasm.). But, you know who is great at spreading awareness wherever we go (like it or not. 😉 )? Autism mamas and papas. So I asked you. And you came through. This was one of my most popular posts in this itty bitty corner of the blogosphere. And so now, even though none of my kids have cancer, it’s become a September thing.

Now it’s October. And it seems like the whole flipping world has gone pink for Breast Cancer Awareness. And good for them. Because it has had a measurable impact in saving lives. People are aware. They are doing their self-breast exams. They are donating money to research. They are funding research for new treatments, and possibly one day a cure. They’ve made it a really big deal. It’s impressive. And with numbers like 1 of every 8 women will develop breast cancer in her lifetime, it should be a big deal. It should be easy to convince drug companies, yogurt companies, car companies, and even NFL players to go pink for October.

And while pain is not a competitive sport, when you have other diseases that can be far more devastating, and they get little to no attention – when they get drowned out in a sea of pink, it is frustrating.

I’ve already talked to you a bit about mitochondrial disease. My selfish hope is that this will join our list along with AT as a disease that Mary thankfully does not have. But right now, that doesn’t appear to be the case. Right now she is showing more signs of mito than less. She is fatiguing more. She is having more difficulty with swallowing and more issues developing and/or worsening that I won’t go into here…. I am struggling with this, thinking of other children who have already lost their battles, wondering if we will ever have a firm diagnosis, wondering if we will ever be able to get any kind of treatment for her….

But over and over again, I hear “what is it?” Or “Oh, wow I’ve never heard of that before….” About two weeks ago it was mitochondrial disease awareness week. There were stories, videos, and statistics listed on many of the pages that I follow. But I saw no mention of it on the news. I didn’t see any green ribbons with the rare exception of in specialists’ parking lots. I didn’t see any big sports figures talking about it. There is one celebrity who thankfully has taken on the cause of supporting UMDF, Jack Black. (And honestly I couldn’t think of a cooler guy to do it. ) But at the same time, mito still has no real treatment outside of attempting to manage symptoms, often with vitamins. There is no cure. And the disease is generally progressive….

So I guess this whole awareness thing is sort of a pet peeve of mine (to put it mildly). Few people know this, but a little over a year ago I had a breast cancer scare myself. The tests all came back negative, but it was scary. I mean, who would take care of my crew if I had to step back for a bit? And I was instantly grateful for all that awareness stuff. All that support. All that knowledge.

And if you want to know how grateful I am for all of that autism awareness, click here. Grateful doesn’t even begin to describe how I feel about this community. And I am just now getting up the nerve to connect with just a few folks in the mito community. And these families have been a huge source of support for me. The awareness just isn’t there yet. But it’s coming. I see it a little more each day.

So, knowing my little pet peeve, a new friend approached me and asked me to spread a little awareness love about something near and dear to her heart. Now this one, this is important. Because it’s not even about screening for it. It’s about preventing it altogether. Literally being aware of this one can save your life. (Well, jeez, that sounds easy!)

So what is it?

Mesothelioma. And it is primarily caused by exposure to asbestos.

Yeah, I know it has absolutely nothing to do with my kids. Except, Troy wants to design cars when he gets older. And he and Daddy work on cars together right now. And guess what is in the brakes? Uh huh. And he is fascinated by submarines, and guess what’s in them? Yeah, I thought Asbestos was banned a long, long time ago too. Apparently I was wrong.

So here is the fact sheet that my friend sent me:


And she highly recommended you read just a little more about mesothelioma here. And guess what? You should. Because you should be aware. Because (sing it with me now) awareness leads to funding which leads to research, which leads to treatment and hopefully a cure.

But in this case, it’s even a little simpler. Get rid of the stuff that causes the disease. Ban it. Nobody else gets sick. The end. Heck, if we could do that with other diseases I’m pretty sure we would. So why not this one? Get yourself educated. Spread a little awareness. And maybe they’ll spread a little awareness for us right back. But if you can share this with just one person, and that one person remembers to wear a mask the next time they work on the brakes on your minivan (yes I’m speaking to my husband now….) then it’s worth it. Awareness that can have an immediate impact. Awareness that all by itself can save lives.

Simple. Be aware. Spread awareness. Save lives.

Feel like being a hero? Share this. Share it now. There. You may have just saved a life. Thanks. 🙂

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