privacy – beatingcowdens

Tomorrow Felix and I will be married 13 years. While in some ways 13 years seems like a long time – in other ways I sparsely remember that there was life before I married my best friend.

And as compatible as we are, anyone who knows us is aware that we are as different as day and night in so many ways. One of those ways is the internet.

I facebook. I blog. I Email. I communicate with people I know well, and people I have never met. He doesn’t. He communicates live and in person (and sometimes on the phone) with the small circle of people he loves.

In the world of digital footprints, I have to imagine that mine and Meghan’s are substantially larger than that of my husband. And with that knowledge comes the need to sometimes remind myself of what I already know – there is no privacy on the internet.

We live in a suburb of a big city – unique in the fact that 6 degrees of separation can easily be played – and usually can serve to connect “natives” in far less than 6 tries.

That means, that every post, every writing, every thought, every sentiment that I choose to make public will be read by people who know me, people don’t, people who like me, and people who don’t.

I have begun to “clean up” and clean out my private facebook account. Life is about balance. My husband wonders why I want to stay connected to people I don’t see or even know. Well, many of them hold a special place in my heart – whatever the reason. Many are very dear to me. But, some I really wouldn’t know if I passed them on the street. Do they care when my girl is at swim practice? Or that my anniversary is tomorrow? Or that we have a new church? Or a new school? The answer truly is – probably not.

So how does all this connect to Beating Cowden’s?

Well, here’s how I see it. I started this blog to raise awareness of a Rare Disease. – one that has changed my life and that of my daughter, and my whole family. I wanted to get the word out that this 1 in 200,000 disorder was wreaking havoc on our lives, and we are working to control it.

Then, as I became more educated, I wanted to expose people to the world of Rare Diseases. The reality that we are among the lucky ones has been a potent lesson.

I want people to know that Rare Diseases are not always visible. That even though we don’t “look sick,” the suffering is part of daily life.

These realities have made some people uncomfortable, and have brought some others closer to us. Lessons learned. Life changes.

So when I blog, I try to focus on my own experiences, but without fail they are intertwined with Meghan’s. What can I do to protect her? Not too much.

She wants this blog to continue. She is proud to be part of an awareness raising effort. So, I have given her editing privileges and the constant reminder that once I hit “publish” I can not take it back.

I think in some ways this level of awareness will help her – when she takes more control of her own digital footprint.

“Beating Cowden’s” is about our daily struggles – sometimes with doctors, our bodies, medical tests, surgeries, and just people in general.

I have thought so much about privacy, and how it is almost a work of fiction these days. I have worried about hurting people’s feelings on my private page – but I am starting to get over it.

If you make a conscious choice to put yourself out there – there has to be a purpose. And, you have to be willing to stand behind every word you type.

There is no privacy on the internet.

Beating Cowden’s will continue as a means to raise awareness of a virtually unheard of Rare Disease.

My own personal Facebook page will take a bit of an overhaul in the next few weeks.

Don’t take offense.

I am just getting our feet ready for spring!

We had a day off today, so if you play this game often, you can guess that we spent it – at a doctor! Because, that my friends, is how we roll. Except today wasn’t a high-tech specialist or a visit to Manhattan for testing. Today was kind of ordinary. Today we were at the orthodontist.

Now, I have made no move to hide my concerns about Meghan‘s accelerated development, but since I have come to the conclusion that I am the only one at all concerned, I am trying to just move along with it as it comes.

We have been with the orthodontist since she was 7. At the urging of our kindhearted dentist, I was nudged, gently at first, and then… well, it was time to take her to be evaluated. At 7 she had a rake put in her mouth. A fixed appliance, similar in concept to a palate expander, but different. A rake is there to break the tongue thrusting habit. She wore that fixed appliance for a year, and a removable nighttime retainer for another year. All the while the progress her teeth and her smile made were remarkable.

So, last month when we were at a routine check up the orthodontist told me to schedule an appointment to have her braces put in. I asked when, and was told, “soon.” It was shown to me all the progress that had been made, visible in the computer Xrays, and explained that if we put them on now her wear time SHOULD be 18-24 months.

Quickly doing the math I asked, “She could have them off before Junior High?” Thinking in my head how fabulous it would be to have one less worry during the three most awkward years of your life.

He looked at me a bit stunned and asked, “How old is she?”

“She just turned 9.”

He looked at the XRays again. I asked him if she was too young. He told me her chronological age really had nothing to do with things. Her dental age makes the decisions. Her mouth is ready he told me.

So, we made the appointment and then sat in the car for a long time. She asked me question after question. She was curious about my braces, and her Dad’s experience as well. She wanted to know why I thought it was so good to have them off before 6th grade. She told me she was scared, which I said was normal. She asked me why everything was happening at once. Why was her body growing so much, why is she ready for braces, why can’t she just take a rest? She understands really, she always does. But sometimes she needs the pep talk that we have to press on. She came around and I turned the car back on, prepared to enjoy one last afternoon in August before school began.

“One more thing Mom.”

I stopped and turned around to look at her.

“Don’t tell anyone at all. Don’t blog about it. Don’t tell your friends. Don’t tell anyone. I want it to be a surprise.”

She might have just as easily broken my fingers, and barbed wired my mouth shut. But she was clear. This was HER secret – not to be released without her permission. And while I may have flubbed once or twice along the way, on the whole I did a darned good job.

She taught me (another) lesson that day. When I share my life here, I am also sharing hers. And she wants, and deserves a say. We have talked a lot since then about whet I can and can not write about. She puts very few restrictions on me, and I appreciate that – but I respect each one. This life is hers too. And, in the middle of teaching her about the permanence of the internet, I have to respect that on some things she will want privacy.

So, I write about Cowden’s Syndrome, about thyroid nodules, and AVMS. I write about breast cancer and my mastectomy and hysterectomy. I write about her worries about cancer. I write about her desire to fit in, to have fewer appointments, and to feel a bit more normal. I write about the countless hours we spend waiting, and the doctors who often don’t help much anyway.

I write about her desire to change the world – her fundraising ideas, and what a generally awesome mature, and compassionate kid she is.

And then, I let her read. If it bothers her. It comes out. Its only fair.

But, I tell her, there are sacrifices, some small sacrifices of privacy that have to come when you want to raise awareness. She gets it. She always does.

So today, after the braces were on, and literally not less than 25 minutes later – before a drink of water – one of the brackets was off. (The cement must not have adhered.) There were some tears then. Some frustration about wasting the WHOLE day at the doctor AGAIN… even if it is for “normal” stuff – none of her friends have to have braces this young….

And there was the life lesson for today. For both of us. We stayed calm. We had another long talk about how “everyone has something” even though it seems she has an awful lot. We talked about her friend’s older sister, and the new back brace that she is wearing, the apparent culmination of a long list of medical issues that have plagued her. That young lady never seems to complain either. Maybe that’s why Meghan respects her, and is drawn to her. Kindred spirits? We know quite a few.

We got the bracket fixed. We headed to Party City. We got a bargain on matching Halloween costumes. We went to Kohl’s and she got a stunning dress for the Father Daughter Dance in November. Slowly, the smile crept out.

We brushed the teeth for a long time tonight, getting used to the awkward new additions in her mouth. Soon they will become natural, like all the other bridges she has come to and crossed in these nine years.

Maybe the Cowden’s has nothing to do with the braces, or the need for having them so early, but I think it has helped make us even stronger, tougher, more durable.

She is sleeping peacefully, all content pre approved. 🙂

Another day off, another mission accomplished. One day I would just like the mission to be a day in our PJs!