I'm a millennial. I like to think of myself as one of the original Facebookers, having started back when you had to have a participating college's email address to get an account. I remember uploading photos from a CD onto my hard drive, saving them, and uploading them to the interwebs. I had a MySpace and rearranged my “Top 8” and changed my theme songs with my college moods. So, you could say I've grown up being used to having an internet presence.
When my husband, Drew, and I decided to have children, we wanted to protect them completely from social media: very few photos, no personal information shared, and no one else would post pictures of our kids either. Well, our son, Major, was born and during our new parenthood bliss, we found ourselves faced with a situation we never expected: cystic fibrosis.
I needed an outlet. I started blogging and sharing more of our experiences on social media. It helped me get through the first year of navigating this disease. Today, I share our family meals, fun things we do, working mom tips, shopping and home stuff, and cystic fibrosis. It's my little slice of Insta and I have a blast doing it.
As I started to share more, my husband and I decided we should be thoughtful about how we shared Major's experiences with cystic fibrosis with our internet friends. We don't have CF -- he does. Now that I'm five years in with a growing and engaged social media family, here are four of my top tips for sharing cystic fibrosis -- when you don't have cystic fibrosis.
- No numbers, medications, or culture results. I keep knowledge of Major's health specifics to close family and friends only. And, honestly, only what those folks need to know -- which isn't much! I will share that Major is gaining weight steadily or if we're really struggling to help him pack on the pounds. But, I won't share his actual weight. I share when clinic goes well and acknowledge if it was a hard appointment. I don't discuss what antibiotics or medications Major takes on social, even though -- of course -- some in the CF community can infer what they are. I don't share results from pulmonary function tests. Instead, I focus on how hard Major is working to master them. The numbers, the cultures, and the drugs aren't critical to sharing our family's story, so I don't allow them to be the focal point.
- Major has cystic fibrosis. “We” don't. There are many things that happen in our family of three because of cystic fibrosis. I try my best to call out what I am doing as part of Major's care, while letting Major own the hard work he is putting in. We all have a role on the team, and Major is the captain. He does treatments, he takes medications, he gets admitted to the hospital, he has doctor's appointments. We are a part of all of these things, but we aren't doing the same thing Major is doing. I use “I” as much as possible because my goal is to share my experience and perspective. I am protecting Major's privacy by sharing my own journey rather than trying to speak for his.
- Make a plan as a family. Set clear guidelines as parents and involve your children in them as they age. What Drew and I share today is different than what we shared three years ago, and I expect I'll say the same in another three years. The above suggestions may not align with your choices, and that's OK! What matters is that your family is on the same page, whatever page that is. By making a plan, Drew and I don't have to run things by each other if we want to make a post -- we already have defined our boundaries. If one of us shares a piece the other isn't comfortable with, all we have to do is point the other to our rules and the conversation ends there. As Major gets older and understands more about CF and social media, we include him in these conversations.
- Ask permission. And do so early. Major doesn't fully understand the world of social media, but as a child being raised around it, he knows quite a bit. And I understand that everything I do is beginning his digital footprint. That's why making a plan as a family is so important. But this one, asking permission, is increasingly important as Major ages. I often ask for permission twice -- once to take a picture and a second time to post it. You may be surprised to hear that even at age 5, Major understands enough that he has told me no. And I accept that and honor his wishes. Right now, the value of asking permission is that I'm teaching Major that he is in charge of his disease and online presence. He may not fully grasp Instagram, but he does fully grasp that I respect him.
- If you aren't sure you want to share it, don't. Someone will see it if you post it and the internet doesn't forget. If you are uneasy about a picture or an experience, wait. You can always post it at another time. But, you can't undo it once it's out there. Sure, you can delete it, but it doesn't mean it's forgotten. I try to view all posts as if I'm Major at age 15, 20, or 30. Would he smile seeing it? Mild eye roll? That's probably fine. Would he cringe or be upset? If I'm not sure, I don't post it. Sometimes pausing like this means that I don't end up sharing a really hard experience with my followers while I'm going through it. It's not that I'm keeping secrets though. But, if it's hard for me in the moment, it's likely something I want to protect Major's privacy on. I'll often come back around and share some things I learned or acknowledge the issue at a high level later. But, if I'm vague or don't share at all, I've done the work to let my Insta-fam know that some things just don't make the feed.
Most important, you do you. Listen to your children. Follow their lead. Share what you need to and keep some things close to your heart. I've found many friendships via social media; friends I'll now share anything with because they are more than Insta-friends. Social media can be a beautiful thing, but it doesn't take the place of real human connections. Those connections are what keeps our community growing stronger every year.
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