If you didn’t know our family personally ( or if you read this blog in a Reader or do not look at the photos on the sidebar) you might think that Corrigan is an only child. To those of you that do know our family you have likely noticed that Corrigan makes twenty times as many appearances here, on this little spot on the web, than Connor does. Perhaps you have judged me for this. Assumed, maybe, that I favored one child more than another?
I cannot stress enough that I love both of my boys very much and while Corrigan does require most of my time, and fills up most of my camera’s memory card, there are a million things that I want to share here about Connor but have made a conscious decision not to do so.
There is a lot of discussion about what all of this “Mommy-blogging” openness will do to our kids when they one day are old enough to read the things that their Moms posted about them online. Will they be horrified? Simply embarrassed? Scarred for life? I do not know. I know that while I do share a lot of Corrigan’s story, I do so because his story is one that needs to be told. His disorder is very rare, research is underfunded, and there is a real need for support among families that are living with Urea Cycle Disorders. I share Corrigan with the worldwide web because when we first got his devastating diagnosis we did what millions of other folks do when confronted with something new…we headed for Mr. Google.
After new families wade through the medical journals, read the Wikipedia entries and absorb what their child’s doctor has told them is the likely course of the disorder, they are desperately looking for a glimpse of the future. They need to view what their child could be doing 2 years from now. Or ten years down the road. They need to see what life with a Urea Cycle Disorder looks like and blogs like this one can offer a little bit of hope and support.
A lot of families choose to transplant and their stories are valuable and need to be shared. Stories told by Amy and Katie and Petra put real faces to life changing decisions. Many, like ours and Stacy’s and Murissa’s , choose to manage the disorder with diet and medication and these blogs serve an important purpose as well.
We are all just out there sharing our stories, the good and the bad, and making connections. We do not claim to be doctors or know more than one another on what is the “best” path for a child with a UCD. We are on the web putting faces to the disorder and archiving our lives for not only ourselves, but for that newly diagnosed child’s family that finds themselves heartbroken and searching online for anything that helps them feel less alone.
Am I thinking too highly of myself here? I don’t think so. I have a folder of emails sent over the last few years nearly all beginning the same way…”Hi, my name is _____ and my son/daughter were diagnoses with a Urea Cycle Disorder. I’ve read your blog for a long time and am finally at the point where we want to reach out…” I have made life long friends from this blog and have grown to love so many little boys and girls that are living with the same disorder as Corrigan. We pray for each other, we share stories and laughter, we cry when our kids have high ammonia results or one of us gets a “bad” developmental update. We are family.
So what about Connor? Well, he is a breath away from turning 14 years old and he does not have a Urea Cycle Disorder. His story is one of a typical teenage boy with typical insecurities and confidences. His story doesn’t need a support group (though parenting a teen sure feels like I need one!) or a Facebook page. Parent’s do not give birth a race home to Google “What does a teenage boy look like” like the hits that come in on this blog for Citrullinemia. “What does Citrullinemia look like” or “My baby has a urea cycle disorder, will he die?” come in to my blog dashboard weekly.
When Corrigan was born, and very sick, I missed Connor’s 5th grade graduation because we were in Baltimore with the baby. When this story began, so did Connor’s journey into middle school. I am sure that you all remember what a mine-field middle school could be. It was not a walk in the park for me ( I was super tall and “developed” sooner than the other girls) and I would have been mortified if my mother was posting stories about me on the internet. It was bad enough to hear her recounting them to my aunt on the telephone (you know, the one mounted on the wall with a circular dial and a 25 foot cord?) let alone complete strangers.
Connor is finishing up his last few days in middle school, has already picked his freshman year classes and will be going out for high school soccer later this summer. His life is about to get so much more interesting and I want to document this new journey right here, in this place that feels like home, on the blog but I respect him so much. I ask him in advance if he likes a photo of himself that I want to share online ( and he tells me “no” a lot!) and I am careful to not post anything that could make him feel awkward.
The long periods of “Connor free” blog posts are not because I have ignored him and focused only on Corrigan. It is not because I love one boy more than another, but it is because I think that at a certain age we have to be deliberate and mindful of the feelings of those we post about. When is that age exactly? I am not sure. Should it be different if the child has a special story to share? Does that moment occur when they are old enough to tell you “no?” While I have blogged for nearly a decade now (long before this family blog began) I really have no idea what the rules are, or should be. I am learning as I go.
Does that mean that this blog is primarily a special needs blog then? I didn’t mean it to be. I wanted it to be an archive of our total family story but every character in the story needs to feel respected and valued and that their story is protected in the way they see fit. Connor’s story here is controlled by Connor and I understand that…100%
So I post about Corrigan. A lot. And yes, when you see another blog post on Facebook you might roll your eyes…another photo of Corrigan on a trampoline? Yipee…but here’s the thing. Let me be candid. I might not have Corrigan forever. Yes, I realize that every day could be each of our last but there is a greater chance than normal that I could bury my youngest child. If I post 100 photos of Corrigan staring blankly into the camera please understand that each photo is an affirmation that he is still here with me. And every time I don’t post a photo of Connor it is because I love him enough to value his opinion and honor his wishes.
That doesn’t mean I do not have hundreds of Connor photos in over twenty photo albums and wouldn’t love to share them all with the world.
Did any of this make any sense at all?
All of that being said, I got permission from Connor to post these photos. I am so proud of this guy. He is changing so fast right now. I never did the “door frame growth chart” thing with either of my kids but watching how quickly Connor is growing makes me want to start keeping track. I swear he grows an inch overnight these days…and his feet? Holy smokes, if he grows into those bad boys he is going to be a very tall man.
Here is the mystery son…and the heck with embarrassing him…the handsome mystery son. Am I right?
You would too.