I love social media. There, I said it. Yes, it can be full of politics, and petty drama, and rude comments, and insensitive or uneducated remarks. And yes, it can be mindless and addicting in an unproductive but super fun way. (You can bet my hubby & I send each other funny memes while we sit in the same room lol). But it can also be incredibly connecting and wonderful on a much higher level. It can tether us to people and organizations that we may never have known. And for a special needs mama like me, those sort of connections are invaluable.
What’s the first thing most of us do when something goes wrong? We google it! We google our problems. We google for solutions. We google for similar stories to help guide us in preparing for what’s to come. When Madison was diagnosed with meningitis, unexpectedly, at just 11 days old, I googled it. And I didn’t like what came up. (I know, I know, exactly why doctors tell you not to google it, but who are we kidding, it’s impossible not to!) I was filled with so much fear of what was to come as I sat in the hospital watching my brand new daughter literally fight for her life.
But then I started tweaking my search. I stopped googling meningitis and began looking for stories of survivors. I searched for stories of hope. And I did the same thing a few months later when Madison was diagnosed with a very severe form of epilepsy. And overtime I found what I needed. Facebook became less about posting pictures and stalking people I haven’t seen in years, and more about support. It became a place I went to connect with mamas who were going through exactly what I was. I didn’t know anyone personally who had gone through something even close to the traumas I was now facing on a regular basis, but suddenly I was surrounded by people who were. Strong women, who had been through this fight, and were able to offer me advice and hope and sometimes the unfortunate reality of what I might have to face.
Social media has allowed me to connect with people across the world whose children have similar diagnoses to Madison. And let me tell you, everything that has happened to her is RARE, so to find these people has been a huge help. And I’ve now been able to offer the same help back. We can talk about medications and side effects, ya know the actual things we as parents see, and not the generic stuff you read on a label. We have been able to discuss different forms of therapy, recommend top doctors and institutions, and share the good and bad of our journeys.
Thanks to social media children are able to get more quickly diagnosed with rare medial conditions. Yes, I’ve seen parents post videos of their children experiencing the rare and crippling form of epilepsy Madison has in these support groups after being told by their doctors that nothing is wrong, and having other parents urge them to get a second opinion. A second opinion that has saved them by getting them the help they need. When doctors offices and pharmacies are closed, I’ve seen people ask emergency questions and get answers that are desperately needed and needed quickly. And while I’m not saying you can simply just believe everything a stranger might offer up in a support group, it can be a huge source of comfort and help when needed.
And the support groups available online and on platforms like Facebook are not just for the special needs or medial world either. There are support groups for pregnancy loss, IVF, depression, addiction, you name it. There are groups for crunchy mamas, silky mamas, and single mamas. Groups for breastfeeding and groups for moms with tube fed babes. Local groups for parents to connect about schools and restaurants. Groups for people who love Amazon Prime! There are literally Facebook groups for everything. And while some of these groups are for fun and laughs and shopping deals, some serve a much a greater purpose. And it’s because of those groups that I love social media.
And it doesn’t stop at Facebook either. Do you prefer Instagram? Start following hashtags that are important to you and you’ll soon find tons of people going through similar journeys. Your feed will be less filled with celebrity photos and more filled with strong everyday people fighting the same battles you are. You’ll quickly realize you are not alone!
Not everyone is open with sharing their struggles; in fact it took me a good year into my special needs journey before I really opened up about things. But following social accounts and appreciating the value in which they provided me, gave me the strength to do so. I’ll never understand why Madison’s life turned out the way it did, but if I can help one mother find the right medication or therapy to help their child’s progress, then sharing our story is worth it. If I can provide hope or advice, spread awareness about epilepsy and rare disease, or even just paint a real picture of a medically complex family, then taking the time to blog and Instagram the good and bad, is worth it.
I’ve met women I now consider friends, and I don’t even know them in person. I’ve seen them advocate for their children. I’ve seen their struggles and their triumphs. I’ve learned about alternative therapies for Madison. And I’ve also been able to be the one to offer advice to others who are just starting out in the special needs and epilepsy world. I’ve been able to vent without being judged. I’ve had acquaintances come forward about going through similar struggles. I’ve been able to share updates about Madison to family I don’t get to see often. I’ve found organizations that help to spread awareness about the disorders Madison suffers from. I’ve seen people share fundraisers to raise money for cancer, epilepsy, disease, our armed forces, etc.. I’ve seen people I haven’t seen in years get married and have babies and find happiness. And it’s all been through social media.
For many of us who are struggling and looking to connect or find a story of hope, the power of social media can be a beautiful thing. Crowd sourcing can be a huge blessing in finding answers when we feel alone. When used correctly, social media can truly make such a positive impact on someone’s life. And when you’re going through something in which you feel social media is causing more heartbreak than hope, you can always take a break.
So the next time you see a mama intently focused on her phone, don’t assume she’s just some technology addicted woman mindlessly scrolling around. Okay, yes, sometimes I am just sending Bravo memes to my sister in law, or exchanging text messages in my best girlfriends group message, but more often than not I’m looking for advice. Most of the time I’m reading the questions of a frantic mother who’s child is in the hospital and determining if I have anything helpful to offer her. There’s a chance I’m sending a joke to my husband, but I also might be reading the thing that’s simply keeping me going on a particularly hard day. Find the people and groups who empower you and don’t be afraid to share your story if it can help someone else. Social media can be awful or fun or impactful. It’s all in how we decide to use it! It’s all about what we share and who we follow; let’s use technology to our advantage and make it count!
