Thursday, May 15, 2008

What would Jenelle say?

At first, it was a way to get the word out to family and friends. A handful of e-mail addresses with the latest information on the medical situation with Jenelle. The e-mail updates turned into a form of therapy for me; a way for me to recall all of the information we had to process, and a way to avoid not having to re-live and re-tell the more emotional parts of the story to others. The distribution list grew, and I started to post the updates on our small family website which was on Geocities at the time. And somehow in all that, I became a “Special Needs Mommy Blogger.”

When it became difficult to keep all the updates on the small, free website I had been using, I looked for a new forum and found Blogger. It had all the elements I was looking for; it was free, easy to use, it had the ability to have visitors leave comments and ability to host photos without a size limit and with relative ease. Each and every one of the e-mail updates is on this website. Sometimes there's a little extra too, like this piece. But really, that is how Jenelle’s Journey came to be the website it is today; a “special needs” blog.

I love reading other websites and have connected with quite a few people who have similar issues in their life. Of course, when I started reading other blogs, I came across the infamous blog called Dooce, which is written by a charmingly witty woman named Heather Armstrong. Now, to help my friends and family who really only check out Jenelle’s website and have never really entered the blog-o-sphere; Dooce the website is huge. It's not really about special needs, or really much of anything, but it's huge. The website pulls in one million readers and as I recently learned in reading the recent feature on it on Nightline, it rakes in $40,000 a month in ad revenue. That figure just astounds me. So people, Dooce is HUGE!

I started reading Dooce at the tale end of her post partum depression I think? Also during that time, she was dealing with her daughter’s small development delay in that she was not walking at age 15 months. Her writing then didn’t interest me as much, and frankly it was hard for me to read about her child’s delay when in comparison to my own child’s issues it seemed quite trivial. I know that makes me sound pretty horrible to compare my woes to another, but if you were to walk in my shoes (and some of you do) you would understand why sometimes you just have to look away. I recently began to read her website again and have found that the tone and spirit of her posts have changed a bit. They seem more up beat, and happy. Maybe it was the stress, maybe it was the depression, but now I finally get why she is such a super star.

Recently Mrs. Armstrong made an appearance on the Today show, and I watched the video clip of her interview with Kathy Lee Gifford on her website yesterday. One part of the clip really spoke to me – what will her daughter say years from now about her Mom pouring her life story on the Internet? Well, if your child is neuro-typical, as is Mrs. Armstrong’s daughter, I’m sure someday she might have a lot to say. I never actually thought that this could ever happen to me with Jenelle. Because let’s be honest, Jenelle can’t talk, can’t read and is in her own world most of the time. While I hope and pray for a miracle someday that will allow her the opportunity to read this website; I don’t think I’d bet on it.

Mrs. Armstrong had an excellent answer for Kathy Lee in that you have to have boundaries. I’m not na├»ve, the Internet is a big scary place. My child is a little girl, and there are some truly sick people in this world. That said, I too have boundaries and am careful about the things I share on this website, especially as Jenelle gets older.

Now mind you, we don’t have a million readers, but Jenelle is somewhat of an Internet Super Star in her own right. I’ve literally been approached by people at the park who recognized her from her website. I get e-mail from all over the world from other parents who are going through similar issues with their own child who ask me for advice. People find this website consistently when searching for things like “infantile spasms” or “getting Vigabatrin from Canada” or “hand twitching as a seizure.” And yes, I’m hoping and trying to get this into a book someday. I think this website serves a purpose, and it helps me cope emotionally to know that our long journey with Jenelle’s seizures has had some good by helping another family down the road.

As Mrs. Armstrong implies, Mommy Bloggers are connecting with others and sharing a similar story. We are learning from each other, and we help others cope via the Internet. Whether you’re sharing mundane stories about your life, or details about a rare medical condition, we are connecting. And that to me says something positive about society. The more we connect the more human we become. I feel better about the hardship we have in Jenelle in knowing that our story might help someone else down the road.

What do I think Jenelle would say about this website? I think she would be proud. I think she knows her purpose in life is to help others see and appreciate things differently. And because she is my child, I know this is what she would want.


Reagan Leigh said...

Great post! Your blog definitely inspired me to start one for update our friends and family on her progress as well as reach out to others in this same situation. You have been a wealth of information to me and for that I am very thankful!

Special Needs Mama said...

Yes, yes yes. This was a beautiful post. Thank you.

Kathryn Campbell said...

As someone who has special needs, was diagnosed with a terminal disease two years ago (at age 22), and has a medically fragile sister, I really have come to appreciate your website. My mom started writing two years ago, much like you to keep family and friends updates. Teh site has grown and apparently there are now people as far away as Brazil reading our website. It really does open up a lot of issues but also helps to weed out emotions and medical jargon. I find it very therapuetic even though I don't update everyday like Mom does.

The websites are, and feel free to visit or leave comments. If you go back to the first post in August 2006 or the "About Kathryn" post, you can find "my story" there. Please keep writing. Even though Jenelle may not be able to ready this website, you are blessing her. By you writing, you are helping yourself, and thus her, in the process. I have seen through my Mom's website how much this "blogger world" really is a God-send.

Family site:

My site:

Ivey's Story said...

This post really speaks to me. And, I'll have to check out Dooce. I guess over the past 2 years I have wondered exactly where to go with Ivey's blog. At first it was simple, but more often than not I let my own personal feeling rest on her pages. I was ridiculed about it one day by one of my in-laws. It cut to the quick and left me wondering what to do. Like you said, it is therapy, I find support, especially support that I need to be Ivey's mom, not just any ole mom, but her mom. Some days are hard others are easy. None of Ivey's days are like her brothers. So thank you for this post, it does speak for the special need families of the world, even us all the way across the USA.... in Georgia.

Ben & Bennie said...

And Daddy Bloggers have connected as well! Great post, Kelly. It is so very wonderful how those of us on the same path have connected via modern technology which by most accounts is so impersonal. And Jenelle would definitely be proud of her mom!

Barbara said...

Hi, Kelly, and add my compliments on this post. I can't be any more eloquent than the writers of the previous comments. I found your blog through BADD.

Looks like I know a whole different group of parent bloggers. I invite you to visit my blog to link to them. wwwdottherextrasdotcom

Kim said...

great post kelly! i too have been stopped by strangers who recognize my famous little lily! :)
our girls would be proud.
btw i was going to post something out what lily would say before i read this, so i am not copying. we just have two great minds... mine is in a totally different meaning though.
luv ya!

CJ said...

My daughter has only recently been diagnosed with Epilepsy but other than that she is "neuro-normal". I found your blog the first day I searched and have not missed a post since. And the reason is simply because you don't gloss over anything. Your joy at first steps, a simple lunch and your sorrow at the trials of everyday keep your blog right where it belongs...Close to the heart. You serve as a inspiration to all Moms. Thank you.