Heroes in Isolation
written by Amy Neyer
Being a special needs mom, I often hear cliché compliments such as, “you’re a superhero,” “I don’t know how you do it,” and the ever popular, “I couldn’t do it if I were you.”
While these well-meaning statements are meant as forms of praise, they are misguided, and end up further isolating me and reminding me of my “otherness” in the parenting world. By placing me on a pedestal as a “super mom,” I am now automatically on a different playing field. Not accessible. Not equal.
Most of the time, I do not feel like a superhero. Some days, I feel like utter crap because I cannot figure out, despite all of my efforts, why my son is in pain, or why he is upset. Or maybe in my sleep-deprived state, I mess up one of his medications. I’ve experienced more lows than highs some months, and it can really wear on me, physically and emotionally. So when people say, “I don’t know how you do it,” instead of my usual, simple “thank you,” I feel like my response should be, “I’m barely doing it. I’m smelly, and tired, and feel like I’m failing and floundering. But since you see me as a ‘super mom,’ I cannot be honest about my troubles with you. They are apparently out of your league.” Feeling so low and being placed so high really drives it home that you are not truly being seen.
And then there are the times when I definitely am kicking ass at this parenting thing, and I know it, and totally deserve a medal. Five medical appointments, no childcare, and now I have the flu? Handled it. My son managed a haircut without vomiting? Boom. We finally got out to a family gathering (even if it was only for 15 minutes)? Where is my cape?! But again, because of my “otherness,” most people will not know just how much of an accomplishment it is to leave the house in the morning without my child having a meltdown. They cannot possibly know what it is like to have five appointments in the same week, not including PT, OT, and speech. Even in my times of accomplishment, I do not feel like I can celebrate with others in the way I need. My wins are so foreign, they are not seen as wins by others.
What this all boils down to is “otherness.” Not being truly seen or understood by others. It takes the normal, day-to-day isolation (that is, pre-COVID isolation, which was still ridiculously isolating), and it amplifies it. I don’t want to be seen as a superhero when I feel like I am drowning. But I do want my friends to share in my celebrations over the small wins that mean so much.
It seems like too tall an order, like I’m asking for a superhuman friend.
Someone I don’t have to explain anything to, because they get it.
Someone I don’t have justify anything to, because they live it.
Someone who enthusiastically celebrates with me over the tiny wins that make my whole week, because they feel it too.
Clearly, if you’re reading this, it means that you are also a special needs mom, and likely fit the exact description I’ve depicted above. Fellow special needs moms share the deep understanding that basic, day-to-day moments for “typical” families are often out of reach for us, and when they do occur, it feels like a huge victory. There is a felt appreciation for the loneliness, the isolation, and the otherness.
Special needs moms are the perfect friends for other special needs moms.
But merely knowing that similar moms are out there sharing my truth is only half the battle.
When I’m fully consumed with a child who needs me 24/7, I do not have the time or energy necessary to foster and maintain these perfectly-aligned relationships. It’s a huge obstacle to overcome, and sometimes feels even more challenging due to the current COVID-19 quarantining measures.
And yet, I feel hopeful.
This COVID-19 self-distancing situation, while painful and difficult in so many ways, is exactly what will bring us special needs moms closer together, more than before.
As special needs moms, we are kind of superheroes at this social distancing thing. We are already ten steps ahead of every other mom out there. We know how to adapt to being isolated, because we already are isolated! Only now, with all of our appointments, therapies, and outside responsibilities on hold, or significantly reduced, we have an opportunity to create space and connect in a way that simply wasn’t even considered before.
For example, I have had multiple opportunities to join WABT support groups on Zoom in the past few weeks – many more than I would have been able to attend in a typical month. I have tried connecting with friends online for joint workouts, when I would have often exercised on my own. There are opportunities to join in for birthday celebrations, holidays, happy hours, and more, now that it’s the norm that no one can show up in-person. These bite-sized, virtual moments of connection provide us opportunities throughout the week to feel less isolated during the COVID-19 pandemic, and, I would argue, less isolated than we would have felt before the pandemic.
Of course, I hope that in a few short months, we will be safe to leave our homes again, to embrace our family and friends, to enjoy face-to-face interactions, and to resume therapies and doctor appointments in-person.
While the world may eventually go back to “normal,” our normal is anything but. We will be left with continued isolation, as that is our baseline. Yes, we will have more opportunities to leave our house, and I am certain my son will be thrilled to go back to his favorite activity (riding elevators at hotels), but ultimately, our isolation will continue.
But I choose to remain hopeful. I hope that some of the practices developed during this time, like virtual support groups and happy hours, will continue, and that our shift to virtual connection will continue providing relief from the isolation and otherness experienced before COVID-19. Even when the world goes back to in-person meetups, I hope that the precedent will be set to include those of us stuck at home who want to socialize but are unable to leave the house because of our children’s needs. I hope that there will be greater empathy for the social distancing required of special needs moms on a normal basis, and that the mundane, day-to-day tasks, which everyone took for granted previously, will be celebrated for the special needs moms who can never take them for granted.
And, if after all of this, everything returns to the way things were before, I hope, at the very least, that at the next WABT virtual happy hour or support group, we all show up wearing our capes. Because, let’s be honest, we are definitely all superheroes.
Amy Neyer is a mom to a medically complex little boy in Torrance, CA. Besides being a full-time mom and caregiver for her son, she is a neurologic physical therapist and a writer. She writes to advocate and educate about her son’s rare conditions and connect with other special needs moms.