watching you watch me

watching you watch me

This blog doesn’t get a lot of traffic and according to the stats on my blog dashboard averages only 62 hits a day in 2013.  If I counted the spam, my numbers would look a whole lot more inflated, but as far as real people clicking through to see what’s up in our world, about five dozen of you peek in daily.

Sometimes I will participate in a blog link-up and see a little more traffic here, or more rarely, someone will post a link to something I’ve written and more will click through.  These stats, while interesting, are not why I blog publicly.  In fact, in real life I prefer that people not know much about me and tend to keep my head down, but here I am on the world wide web, doing anything but keeping my head down.

Weird.

But the stats are neat and if I didn’t use a free site I could probably see more detailed stuff but it doesn’t really matter.  If you read this blog it is likely because of a Urea Cycle Disorder, or you live with rare disease or chronic illness, and once in awhile my stats show me that a new family has been introduced to the world and someone is seeking something.  Answers, support, hope?

There are days that I can see that I’ve only had 12 visitors but my page views are in the hundreds.  Last week, someone in Slovenia worked their way through my entire blog.  I can see each entry that had a “hit” and someone obviously started from the beginning and worked their way through over several days.  I wonder how my writing “style” translates to others in the world. Do my stories mean the same thing when translated into whatever language is spoken Macedonia or is part of the comfort of this blog just the progression? Is it the thousands of photos that show Corrigan growing up, not passing on?  I know that when people find me by searching for “life expectancy Citrullinemia” those photos must mean a whole lot to someone that typed in those terrible three words and held their breath, right?

I’ve posted on this blog 717 times in the last 5 years and aside from a few countries like North Korea, there are few countries on our planet that haven’t shown up to look around.  I used to get a tremendous amount of hits from the Middle East, what must they think of our story?

watching you watch me

In five years, 94,787 people have found this little spot on the web and I would imagine the majority of them have been impacted in some way by Urea Cycle Disorders.   This blog isn’t about blog revenue, there are no ads here.  I don’t talk about fashion, or current events or anything all that interesting.  I journal our lives for our family, but also for yours. I do not dispense medical advice and never will, but I do dispense a little bit of hope.

Yesterday I had a tremendous amount of traffic from the UK, so hello to you, my friend(s)!  Is there anything that I can do to encourage you today? Is there anything you’d like to know more about?  Maybe I could let Corrigan fill you in a little…

watching you watch me

Okay, so Corrigan is a little busy now, I suppose I will have to give you a little rundown!

On May 28, 2008 our family was blessed with the arrival of Corrigan.  Days later he was a very sick little baby and we were trying to wrap our heads around terms like “elevated ammonia” and “inborn error of metabolism.” While my husband is very much involved in the day-to-day life of our family, I am the voice of our story through this blog.  I am not a strong voice and if you have been reading your way through from the start, you know that I was barely hanging on for awhile there.

Five and a half years later, I am still not as strong as I want to be in regards to Citrullinemia.  I still have feelings of guilt knowing that he inherited his defective gene from me (and Daddy) and I struggle with the transplant/no transplant concept each time another UCD family lists their child and leaves us behind, standing here holding our hope in a newly approved drug and possible scientific breakthroughs instead of donated organs. It isn’t easy.

I still cry when I see how different Corrigan is from other children and I can feel the hair stand up on the back of my neck whenever I perceive injustice for my boy.  And even today, I angrily slammed the “off” button on the radio because it is that time of year again, when the local radio stations are holding telethons for the very hospital that let my sweet baby down when he was so sick.  I stood there in front of the radio, hands on the counter, and had to take a deep breath, so yeah…not really all that strong sixty-six months later.

But Corrigan, oh Corrigan. He is amazing.  Really, he is.  It is hard to feel down about things living with someone like my youngest, someone that doesn’t understand his own limitations, doesn’t know how to lie or be cruel, someone who faces down countless hurdles yet still loves to laugh. He doesn’t know that he shouldn’t dance in the middle of the supermarket, but why shouldn’t he? He doesn’t understand to be quiet during prayer, but he heard the word “Jesus” and by golly, he knows a song about that guy, so why not sing it right now?

He is bravery and perseverance personified and it is my pleasure to share his story with you here.  He is a wonderful gift, just like your child with a Urea Cycle Disorder is a wonderful gift.  He is worthy and valuable and deserving of the same love and affection as every other soul born on this Earth.  Your baby is precious too and you will soon learn the same lessons I have learned from this journey with rare disease.  It isn’t fair, it is going to be very hard sometimes, but you have to have hope.  I have hope for your family just as I continue to hold onto hope for mine.

Thank you so much for being a part of this story. Thank you for your comments and your emails.  Thank you for offering prayers up in his name when he is sick and applauding his successes with me here when he is well.  I see you out there and it means a lot to me that you keep coming back.  By visiting, you are an almost-invisible support, that shows me I am not just sitting here in my kitchen, typing words out into the empty ether.

PS.  2,547 people have left comments on this blog since it’s inception.  If you would leave a comment today to let me know where you are reading from, or just a simple “hello!” that would be super nice.