Community

Finding it, building it, sustaining it.

My friend Lauren had a theory about how the movie Frozen is about special needs, and that it’s about how inclusion and teaching kids to use their powers is better than trying to hid them and making them “conceal, don’t feel”. I think about it a lot, and I have since Lila was diagnosed. When I wonder if a general education setting and a full inclusion model is the best option for her, I think about Elsa and how being hidden away from the world wasn’t good for her or Anna or Arendelle.

Lauren and her husband Kamel were killed in a horrific car accident almost three weeks ago. I never told her how much this theory she had, that she made in a passing Facebook comment to somebody else, years ago, meant to me. How often I think about it. Lauren was part of my amazing internet Mom group which I’m so lucky to be a part of. The group was started by people I met via a wedding blog when we were all getting married back in 2008-2011, and then when we all had kids, some of them started a moms group, which I joined 7 years ago. Our group was the first place I put to words my concern that Lila’s head was too small, the first place I went to freak out about being referred for a head ultrasound, and then for an EEG, and then an MRI, and then genetic testing, because I didn’t know how to talk about any of this in person and it felt so much easier to type the words out than to force them to come out of my mouth. Lauren was there for me on every step of our diagnosis journey and one of her last comments to me was to remind me that Lila is extremely cute, even if she can’t keep bunny ears on her tiny head. My friend Evie wrote a beautiful tribute to her that I’m going to link here so that you can read more about her.

The tragedy of their out-of-order deaths is terrible and terrifying all on it’s own - their children are 8 and 5 and the number of lives irrevocably altered by this event is vast. But knowing where our group of friends fit into this grief also feels odd. So many people hide the fact that they have internet friends to begin with, and so all of our offers of help and everything else comes with, “do they even know who we are?” Some of my friends never had the pleasure of meeting Lauren in real life, and only knew her from the internet, and are feeling weird about that - as if there is less legitimacy in a friendship made up of daily conversations just because they are online. As if missing somebody because they suddenly stopped posting their daily outfit boomerang selfies and commenting on your Instagram Stories with heart-eye emojis is not a valid way to miss someone. But since we lost my cousin Nathan right after Christmas, I have been experiencing this type of absence - where I post something and for just a moment, I expect him to show up with a comment. Where it was possible to believe, for awhile, that he was just taking a break from social media, but as the months have worn on, we have to admit that he is really gone. Where I really want to post an article about lawyering or about politics and get his thoughts on it, but then I remember that he isn’t just on hiatus, he’s gone.

Internet friends are not only accepted, they are required in the Rare Disorder world. There are 300 kids with LSS, and they live all over the world. Where could we connect except the internet? How can we offer each other support on a regular basis without coordinating international flights or dealing with navigating time zones for phone calls, other than the magic of social media? Honestly, how could some of us even communicate without the help of Facebook Translate (which is terrible and I usually end up cutting and pasting posts into Google Translate)? My French is very rusty and my Spanish is limited to basic greetings. How could I share our journey with our family and friends and community through this newsletter without the internet? I realize that for some disorders, there are things like big international conferences. But the people who meet at those conferences still keep in touch via…the internet and their support groups there. There are local chapters of organizations for childhood cancer and muscular dystrophy and autism and juvenile diabetes. The Maryland chapter of the Lamb Shaffer Society would have two families in it, and I’m surprised it is that many.

Having internet friends is pretty much as old as the internet. I still don’t fully understand how it worked but my Dad has been active in what he refers to as his, “battleship lovers waste time newsgroup” since…the internet started? (I’m leaving out the part of it where he referred to it’s members as “old farts”, because I’m doing the math and realized he was much closer to the age I am currently than the age he is now when he first was doing that.) It has always been a place for people who have common interests to meet up, exchange ideas, and troll people who disagree with them.

Lauren worked really hard to build community everywhere she went and she taught me a lot about being open and honest and vulnerable and putting yourself out there in order to be able to build authentic relationships. Online relationships can be tricky because some people are all about sharing their highlight reels instead of their actual lives, or they are the internet equivalent of tidying your house for six hours and then apologizing because it’s so messy. But, as with everything, you will get out of relationships what you put in them, and if you invest heavily, the ROI is pretty high.

In closing, I’m going to encourage anyone who has questions or comments for me - LSS specific or otherwise - to comment / email me in response to this post and I’ll do my best to answer them in a future newsletter, or respond to you directly.