Social media can benefit many kinds of people, but perhaps none so much as special needs parents. So many of us have feelings of isolation from friends and family as we are thrown into a world they don’t understand. Enter other parents who get it.
Social media can connect us with other parents navigating similar medical and other needs. We can feel seen and heard and get ideas on how to make our lives easier.
In this episode, Jess Wolff shares her unique perspective on Instagram, with over 40k followers and a tight-knit community of parents that have made the two years with her daughter Lily so much more doable. In it we wonder together how special needs parents did it all in a world before social media existed.
Jess Wolff is not your average Instagram influencer. With her adoring 40,000+ followers, you may never guess. Her account is bursting with adorable photos of her two-year-old Lily, thought provoking captions, and helpful hacks for other medical parents.
When I called her “active on social media” she laughed as she told me:
“Never in my life did I ever think that there would be someone who would describe me as active on Instagram.”
Jess went on to tell me about her once-private Instagram account that she created to keep friends and family updated about Lily during her NICU stay. When Lily had her tracheostomy placed—a tube inserted in her trachea to help her breathe—she decided to go public.
She wanted to know what life was like for other trach parents.
She wanted to know how to set up her room for success and pick seasoned parents’ brains on how it was done.
They were well-versed in the medical know-how to care for their daughter, but the real experts are other parents living with it day to day.
To their surprise, a video of Lily went viral and the rest is history.
Social media is one of those things that will probably be debated until the end of time. There are undeniable flaws to it, but the benefits within the special needs community are indispensable. Jess and I marveled at how medical parents survived without it as a resource.
“My friend's family who are not part of this community have made so many comments about how bad and toxic and horrible social media is; And I truly don't know that I would have survived my last two years without it.”
She’s been the benefactor of a hugely supportive following. And the support has been both practical and emotional in nature.
Within Instagram, Jess is a part of a tightknit group of other trach moms who truly have each other’s backs. During the pandemic, there were supply shortages on supplies like suctioning tubing. They mailed each other the things they were short on, spotted by their individual—and random—stockpiles. In Jess’ words, without these supplies, they “would have gone inpatient during COVID just to keep her alive.”
Although not on the same level as hospital-stay-preventing mom quads, I’ve also found myself hugely grateful for the wonders of social media.
Kimball has a hugely rare syndrome with very little research and therefore more questions than answers from his specialists. Amazingly, another CDPX1 mom created a Facebook group just for us! It’s small but invaluable. We’ve been able to conduct our own unofficial “studies” and filled in gaps of information.
As helpful as those answers have been, it pales in comparison to the feeling of company in an otherwise hugely isolating world. These moms spread sparsely throughout the world live with what we do, and that is huge.