Don’t stop believing—even when you’re living in a lonely world

worried woman looking in mirror neurologically complex children neurodiversity autism
Vera Lair/Stocksy

I’m the mama of two teenagers who delight me, perplex me, amuse me, teach me, love me and have taught me to love. Just as I love them, fiercely and with all my heart. But I’m not just a mama to them, my role goes far beyond being their parent. Both of my children are neurodiverse and have significant neurodevelopmental challenges. I call them “complex kids.” So in becoming their mama, I have become many things, doing many jobs, living in a lonely world and disconnected from other moms who are also living in lonely worlds doing many jobs which take them away from the core purpose of parenting, which is to love.

So, yes, I’m a mama for sure, but I’m also a case worker, a psychiatric nurse, an IEP advocate, a counselor specializing in childhood anxiety, a teacher for the gifted, a crisis intervention specialist for kids who self-harm, an expert on “severe” ADHD, a play therapist, a pharmacist, a motivational speaker, an OT doing sensory therapy, a nutritionist, an autism researcher and the CEO of our family.

Chief among my job responsibilities is the care coordination of every member of both children’s care teams, including their pediatrician, psychiatrist, consulting psychiatrist, allergist from across the country who treats our rare form of atopic illness, counselors, teachers, school guidance counselors and, unbelievably, sometimes even a few more professionals.

For the past two weeks, this is what being a mama has looked like for me. My son takes a certain medication. The medication isn’t first-line treatment and we have a high-deductible health plan, so we can’t afford the medication without the coupon provided by the manufacturer. Unfortunately, because my son requires a high dose of this medication, and insurance requires the dose to be written as two scripts, we have already used  all of our coupon benefits for the year.

Confused? Exhausted? Hang in there, because in my “job,” I had about 23 more phone calls than usual to make over several days—divided equally between the pharmacy (understandably but annoyingly understated), the pharmaceutical company customer service (whose job title might be better described as “Generous Giver of Free Erroneous Information”), the very helpful company sales rep who I tracked down through a psychiatrist friend and then an incredibly dedicated higher-up at the pharmaceutical company, who the very caring sales rep had to refer me to because he couldn’t fix the problem.

Welcome to my world, friend. Sorting out how to be able to use this coupon for my son’s medication took more hours than my day job and was far more exhausting. Everywhere I turned, I ran into a dead end, and I had to keep thinking, all alone in my world, OK, what’s the next step? No answers exist for us mamas of neurologically complex kids.

For the past two years, being the best mom to my kids has meant homeschooling them. When I tell you this was never an option for me, I mean NEVER. I would have given the last hours of my life volunteering at the right school and spent my last dollars on tuition, even if it meant going dead broke. But here we are—homeschooling and I’m killing it. My kids are homeschooling and they’re killing it.

It’s sometimes heaven and sometimes hell, but one thing is true every day—it’s lonely. I’m so insanely jealous of the parents driving to high school every day and picking their kids up from after-school activities. While I know that would not be the right choice for either of my kids right now, homeschooling has given me even more job titles, including teacher, school counselor, special education teacher and, my favorite, school principal.

When I became a mama, I knew I wouldn’t be class mom, fundraising chair or PTA President. But, I thought I would have a few close friends. And I did, primarily moms of my daughter’s friends during preschool and elementary school. But as autism and middle school collided, her friendships ended and so did mine. It’s hard to be friends with a mom whose daughter doesn’t want to be your daughter’s friend, not because she has autism per se, but because of how autism expresses itself and the difficulties that it creates in relationships. I understood, but I grieved.

The loneliness is more existential than not having friends or your kids not having friends. It’s slowly coming to a realization that you, as a mama to two uniquely complex kids, are alone in this world. There’s no club, no roadmap and no doctor has ever seen a kid like yours—there’s nothing.

There’s a nothingness that pervades your heart and soul in a way that only one in a million other human beings can comprehend, because they too have neurologically complex children. But neither one of you has the time or energy to be friends. You just admire each other from across the country and take solace in knowing that there’s one person who gets what it’s like to raise kids like yours.

Despite the loneliness and the exhaustion, you somehow don’t stop believing. You despair, you cry, you rage, you resent and you cry again. But, right alongside the loneliness is the rock solid, soul deep, knowledge that you can do this. Somehow, you’ve been doing it all along, and you’ll continue to do it too. Because what you’re doing is love— pure, divine love.  It keeps you believing in your child and yourself. Don’t stop believing.