This post has been brewing in my mind for a while. Trying to think of an appropriate title, several words came to mind—ill-equipped advocate, hesitant advocate—before I landed on inadequate. June is CMV Awareness Month. In the last year, my network of CMV parent connections has grown significantly. Granted, all of these new “friends” are virtual. But I’m so grateful for that group of people, even if they are just Facebook contacts. I really feel like I get to know them and their kids and love to watch the progress they make, and can also share their frustrations and struggles. Throughout this whole month, I’ve seen these other moms doing an awesome job of spreading awareness for CMV by sharing articles, videos, infographics and more. With each post I feel so proud of these moms for being such awesome advocates. From time to time, I click share to pass the information along. But as proud as I feel of these other moms, I also feel a hint of guilt that I’m not doing more.
Before the month started, I had big plans to create all the awareness! I imagined daily, or at least weekly, posts and contacting all my local news outlets with a story suggestion. But here we are in the final week of June and I’ve done so little. I think I struggle with the idea of being an advocate for a few different reasons, one being that I feel ill-equipped.
Sometimes I think the title of advocate gets thrust upon you, simply because you have a child with special needs. I’ve learned the value of sharing our story, so more and more I’m willing to open up. But I don’t necessarily set out with a goal in mind of how that information impacts others, I’m just trying to do what’s best for my kid. I’ll speak up for his needs because he can’t. I’ll “advocate” to get him additional help or try new treatments, but at times walk a fine line between looking out for his best interests and becoming angry and taking on a fighting mindset. But most of the time I’m as lost and confused as anyone and just trying to figure it out.
Another reason I struggle with CMV Awareness is because of the nature of the disease. I’m more than happy to preach about the methods for prevention like frequent hand washing and not kissing kids on the mouth during pregnancy. But I still struggle with the thought of “what if it’s not enough?” Even the most careful expectant mothers can have something go wrong. As much as we want to be in control of everything, that’s just not the way it works.
Ultimately, even though I struggle with insecurities and doubts, deep down I KNOW that awareness in and of itself is important and worthwhile. Although it’s rare, when I mention Gage’s diagnosis and the person I’m speaking to actually knows what CMV is, that’s huge. In a weird way, it’s comforting to me. Most people fall into the same group I did before having Gage—they’ve never heard of CMV. Even if I was an expert on CMV and knew all there was to know about it before Gage’s diagnosis, it wouldn’t have changed my struggles with the reality of having special needs child. That news would still be shocking and life changing. But maybe more prior knowledge could have alleviated some fear and questions. Then again, maybe not.
What I do believe is that the more we know and others know, the better. When people start to understand that CMV is common, maybe there will be more support for parents caring for these awesome kids. Without awareness, isolation and feelings of helplessness are all too real. So even though I haven’t done the awesome job of spreading awareness this month like I had planned, I hope that one day I’ll feel worthy of the title of advocate, without any qualifiers before it.
