Monday, May 16, 2011

On blogging

I'm wondering what direction this blog is going, as I don't seem to be writing with as much fervor as the beginning.  It's always like that, right?

When I first started, I wanted a place where I could sort out all my thoughts and fears associated with Cupcake's MCADD diagnosis.  I was exhausting Nate with all my freak outs, my over analysis of her schedule, my tireless googling of information, and I wanted a safe haven where I could. Just. Vent.  Also, I began to realize that there were very few happy MCAD stories out on the internet, and I'd found barely two blogs that mentioned having a diagnosed child.  Actually, there were some happy stories on the FOD Support groups, but they were these paragraph long blurbs of kids that were still doing well (as opposed to the stories of children who had succumbed to undiagnosed MCADD).  I wanted to see blogs of people going about their menial lives, dealing with a metabolic conditions yet grappling with regular parenting decisions.  So I took Ghandi's advice (be the change you want to see in the world), and made my own blog.

Of course Ghandi was talking about much larger issues, and this is just me venting out on the internet, but a girl can dream, right?

Nate doesn't want me to use our real names or post pictures.  I understand where he's coming from, since it should be Cupcake's decision to share her medical information on the internet.  However, this places me at a slight disadvantage if I use this blog as a networking tool.  Other people post photos, and I feel like I'm being standoffish by not reciprocating.  Is this why I'm having a harder time building my own online community?  Or am I just not reaching out enough?  And do I even want to?  I feel strange commenting on people's blogs if I haven't met them in person, or reaching out to them when I'm withholding images of ourselves.  But I'm also not comfortable broadcasting personal information to the world.  I'm very private, yet I'm blogging.  How does that work?

I want to keep writing.  Even though as time goes on, MCAD feels less and less like a pressing issue.  Which makes me wonder if I should just make this a document of Cupcake's first years, or if I should stay within the filter of our lives through her metabolic condition.  Either way it's serving it's purpose.

I know some people are finding the blog from googling MCADD.  I hope this can help you see how our family is dealing with it, and how "normal" our lives can be. 


  1. I appreciate your blog not just as another MCADD mother but as a mother in general.

  2. I just came across your blog and am delighted to read about another mother dealing with the MCAD issue. Your post about how you found out about it and your reaction is pretty much exactly how we found out and reacted. I too had a C-section as well. Our son Gabriel just turned 1 year old on May 8th and we've settled in to a really normal life. He's healthy, happy, and wonderful and we've had no real impact from the MCAD other than a couple of colds and a slight reaction to his first set of vaccinations. We are on an 8 hour feeding schedule in the evenings (even though we could go to 12 hours with the use of cornstarch) which is working well for us. I breastfed until he was 11 months old and he's been on solids since 6 months. We also feed him raw milk (we have a source of fresh raw milk from a local farm, not pasteurized) and he's doing really great. All the research I've done on uncooked cornstarch at bedtime freaks me out as it is a nutritional devoid product that is really hard on the system and teeth. I'm looking into the possibility of using arrowroot instead (also a slow release carb in the form of starch) but it's nutritional and helps insteads of harms. I find it's difficult dealing with anything "new" with doctors as it relates to MCAD as they have a very set protocol. As you mentioned, it's such a simple manageable disorder that once something "works", they simply resign themselves to it. Anyways, just thought I'd send you a note - thanking you for sharing your story - and letting you know there are others (albeit only a few) out there who relate. From Vancouver, BC Canada.

    Lisa and Eric (and Gabriel) Lock

  3. As Klaw has gotten older, my blog has become less about him (& VLCADD) and more about our family life and just humor. I don't have the issue with pictures, but I do keep our real names a bit more private. You have to figure out your own comfort level and don't worry about your readers (to an extent).

    As Klaw continues to get older, I'll give him more of a say on what pictures (if any) of him can be posted on the blog. It's uncharted waters for me and a lot of other parents who blog.

    I started participating in some of the blog memes and I've become pretty active on Twitter. It's given me more writing inspiration outside of VLCAD & the Navy.