Two off handed remarks I made during a phone call to a PT last week have stuck with me. The first was, "Sorry I have been harassing you with phone calls and emails over the last three weeks. I just need to have this question answered." The second was "...oh, yeah, you know us special needs moms, we're doing 1,000 things all at a mile a minute." Then I thought, "Why am I justifying my franticness to her? She doesn't care why I'm crazy about this stuff."
But someone out there does care.
Who responds when I flash my Special Needs Bat Signal? My friends on social media. Thanks to social media I am connected to other parents who are trudging along the same mile in worn-out shoes and it's here that I don't need to justify my kooky phone call habits. For myself, tweets, blogs and Facebook groups have become, in most cases, a non-judgemental sounding board to ask for feedback, discuss therapies, swap medical supplies and quite simply escape for a few minutes a day amongst people who understand (FYI for my escape I peruse LuLaRoe boutiques on Facebook and Calvin and Hobbes on twitter).
Social media was not always a good fit for me. After my daughter Shelby was diagnosed with CHARGE Syndrome I joined the CHARGE Facebook group and I was not ready for it. I was too fragile, bitter and scared to hear about the realities some of our kids face. I left the group and did not rejoin until after I went to my first CHARGE conference. It took meeting real families and real CHARGErs to give me hope; I needed to see similarities in our kids and hear the amazing stories of our kids overcoming INSANE obstacles.
Now the CHARGE syndrome, Parents of Special Needs Kids of the South Shore, Blenderized RN, Kids Born with Tracheoesophageal Fistula and Esophageal Atresia, and Supporting Families Facebook groups (among others) can be my sanctuaries because I have balance (and yes, there really is a Facebook group for everyone).
I'm not referring to balance that comes with being further along in our journey. I have balance because I have met and connected with other mums from special needs playgroups, conferences and random encounters in the hospital, and sadly but realistically these friendships could not continue without social media. These women may never know how much I treasure their real and physical not-from-behind-a-screen-friendship and how they enrich my life. It is the combination of social media and real people that have helped me become a stronger and better mum to all of my girls.
It feels funny talking about my friends on Facebook, other mums I may never meet or am no longer physically connected to but who have helped me so much. My Facebook mums are not scratching their heads trying to understand why I am not just giving Shelby ice cream to get her to eat by mouth, they know it's a neurological, sensory and physical issue. These parents are on my team, or maybe more to the point, on Shelby's team. Many without knowing me personally know how much I do, they know I do enough. They are cheering me on, comforting me when I hurt, answering questions with helpful solutions or in a more tactful way than friends and family who do not understand our life. I know I am listened to and truly understood.
So, mum-I-may-have-never-met, I love being able to support you. Thank you for sharing your life with me and being open to helping me too. You make these spaces safe because the PT I spoke to on the phone may meet a lot of us special needs mums but she isn't one of us, she does not understand that we are constantly doing for our kids, fighting for our kids, fretting for our kids and second guessing ourselves over our kids.
You get it. Thank you for being there.
Nicole Feeney writes about how God grew the Feeney family from two to four to five in two quick years... and the subsequent adventures on her blog, Fab Feeney Five.