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?

blog visitors

(I wonder how many were real people??)

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…

photo coloring church

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.

39 thoughts on “watching you watch me

  1. Waving back! As always, totally consumed your post as soon as it hit my inbox. Works been crazy, but I would love to call to chat and catch up soon! <3

  2. Oh my gosh, that would be awesome! I still show Ibby Corrigan’s pictures and he remembers him! Says, “Mom, is that my friend, Corrigan”! LOL!

      • Still had that old soul look to him…wise beyond their years, these kids….and definitely on a park or somewhere outside! (btw, just realized there is a “reply” feature…LOL, I’m losing it dude! I’ve had this horrendous sinus infection for 2 weeks, finally broke down and went to the docs and got antibiotics.)

  3. You know me! Here in Peterborough, Ontario, Canada! :) I was sad to have not been able to see you on my trip. I will be back down for a VERY quick trip the week before Christmas, and maybe again in the spring? If not for me, my mom might be interested in signing up for the same study at NIH. They are phoning me tomorrow to go over all my results.

    • Hey Cindy, my friend! I am so sad that you found Outback Steakhouse so yucky. lol. I do more travelling in the Spring, I sure hope I can get out and see you when you come down again! Thank you for reading and commenting!

    • Hi Bethany! We love you too, and I am still waiting to see your newest blessing on FB! Congratulations btw! Will you be in for Christmas?

    • Brienne, thank you! Appreciate those healthy thoughts, sending some right back at ya! We sure need them this time of year, don’t we?

  4. Hello from India..

    Our first born had Citrullinemia, he left for a better place 2days before his 1st birthday. I found this blog later, but this blog is a great way to find support from another family going through the same kind of challenges/ circumstances. I wish you guys the best and a lot of love to Corrigan.

    • Hello! First, I want to offer my condolences on the loss of your boy, this disorder can be so cruel and I am so sorry that he left this Earth so soon.
      There are many families in our UCD community from India, I’ve been told that there isn’t great medical care (or medicines) for UCD’s in India, and that breaks my heart. The fact that you still stop by and visit us here on the web, even after your loss, I am just honored. Thank you so much for letting me know you are out there reading and please, again, accept my condolences on the loss of your son.

  5. Hi, I love all your pics and how well you can express your heart with words on paper. Thank you for sharing. It is helpful to me as I process my own similar pains and issues with my own daughter who is a year younger than Corrigan.

    • Jennifer, you are in my top 4 commenters and I want you to know that I am so thankful for our internet friendship, Ive no doubt if we were closer we would be “meatspace” friends too. Life with chronic health issues is hard, but when it is your innocent child it feels almost impossible some days. It always helps to know that others out there have some of the same struggles and concerns, I am glad that you keep coming back to this little spot and offer such support so often!

  6. Hi Mindy, I’m on my late night shift with Mason and came across your link on Facebook. Just wanted to say hi and that although you don’t get high traffic on your blog someone in this world will relate. This is how I found you when Mason was born. I wanted to find someone that had children like Mason and how did they cope. So your blog will mean something to someone as it did me.

    • I was actually awake when I got the little alert last night on your comment Shanisha. I fought the night last night, and got very little sleep, can’t blame it on Corrigan this time though, he sleeps well now. I wanted to reply then, but knew if I put a bright screen in my face, the insomnia would win for sure.

      I know that you relate, sadly all too well. Mason and Mickey are always in my thoughts and prayers, as are your entire family, Shanisha. You haven’t had it easy with this disorder, at ALL, and I pray for your strength as you navigate a life with two kids with UCD’s.

      Thank you for your support and friendship!

  7. Hi, I’ve commented before, I’m writing from Germany and I’ve got nothing to do with Citrullinemia, before I discovered your blog I’d never heard of it. I can’t remember how i found your blog, but I stayed for the beautiful photos and I like your style of writing a lot. And once I start reading a blog I cannot stop so easily, I often think of you and Corrigan and hope that you’re allright! :-)

    • I see when you “like” one of my posts and I appreciate that very much! Thank you for your kind words and for coming back to see how we are all doing. We are doing well right now!

  8. Good morning from Sweden =) Have started reading your blog and hope my little boys will let my finish soon ;)
    Our youngest boy Edwin has ASA, and sometimes it feels like Im reading his story. You are an amazing family, and reading about Connor and Corrigans achivments fills me with a hope for our boys! Some of your posts makes me cry for you as well as for us, and many of them puts a big smile on my face. And they give me hope when I worrie about both our boys future, Edwin with asa, and William who has to stand back for his little brother.
    Load of love from Sweden

    • Ulrika, it is a crazy life isn’t it? And touching on how all of this affects other siblings could be an entire series of posts, but on my end I just don’t know if that is my story to tell for my oldest. I am pretty sure I know how this has affected him, but he is 16 years old and maybe that is something he should share if he sees fit. I can tell you, it isn’t easy, as you well know. Thank you for your friendship and support!

  9. Hi Mindy! Except for the fact that I’m from Ohio, not Germany, I second what extrafruity wrote :). I have no idea how I stumbled across your blog, but I’ve enjoyed getting to know you and your family!

  10. Mindy – this was a wonderful post and I love the things you said about Corrigan. You can be sure there are SO many prayers going up for him whenever he needs them. I also struggled whenever I saw another family listed for transplant. Just remember that the UCD worries might lessen, but there are now a new set of concerns to take their place. We are still all in it together and always will be xoxo

    • I know, Michelle…trading the devil you know for the devil you don’t. Still though, there’s not many Cit. families still standing and that feels…lonely. But we are praying for Sophia and are soooo happy that she is recovering so well! Thank you for all of your love and support!

  11. I’m representing Montgomery County, MD :) Even though we transplanted, I still feel incredibly linked and part of the UCD family. It turned our life upside down and I will forever be a part of that community, transplant or not. So very grateful I stumbled upon your blog in those beginning days after diagnosis :)

    • Katie, a transplant can’t possibly erase you from our family, not possible! Love all of your updates on L and wishing her a healthy Christmas at home for sure this year! Thank you for your continued love and support!

    • Susan, I checked and I was surprised that it showed 72 people subscribe by email! That is pretty neat! I always use a feed reader, but email works too! Thank you for reading and being such a support!

  12. Greetings from Adelaide, Australia. I too stumbled across your blog and have found it very enjoyable to read and the photographs. I appreciated your honesty in sharing your feelings and emotions through the ups and downs. From the other comments I can see you have become an inspiration to others going through similar situations.

    Helen

    • Hi Helen! It always makes me smile to see your Violin icon when you “like” one of my posts, and it reminds me I need to practice more often, do you play? Thanks for commenting and reading!

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