Starving to be heard

I didn’t feel love for my child the moment they were born. That was my introduction to the kind of guilt that only a mother can feel; holding this fragile little creature after 48 hours of labor, internal tearing, and two hours of pushing. The little thing had their hand on the top of their head as they traversed the birth canal, pirouetting into existence as dramatic and chaotic as they would remain. Alex, who at that time bore a different name, shattered me in every way. I wanted so desperately to feel the immediate and instinctive love so many mothers laid claim to. Yet, in that moment, I looked at the elfen frail hands and delicate features of this baby who did not look at all like the chubby babies I was used to, and I cried. Not from the pain of the midwife roughly stitching me back together without medication, but out of fear that I could never give this child what they needed.

“Who are you?” I whispered. Large, blue eyes stared back at me, unblinking and unanswering. The baby didn’t even make a sound.

I’d ask that question to my child so many times over the following years — when Alex didn’t start talking or babbling at the same age as other children, when Alex didn’t play with other children, when I struggled to keep Alex engaged in so many things that seemed to come naturally to others. I questioned myself just as fervently. Who was I? Was I even acting like a mother?

The world asked that question with me. Why hadn’t I tried to get the speech delays diagnosed sooner? Had I talked to this doctor, that school, this social worker, that church? The presumably helpful suggestions stung like accusations. When Alex’s hearing disability was diagnosed at age 7, the chorus in the background asked why it took so long. When autism was diagnosed at 12, hadn’t I seen the signs? When overnight, Alex stumbled into an anxiety so intense that everyday life was unmanageable, I immediately got Alex into therapy; but hadn’t this been avoidable?

The guilt (which fit so conveniently into my scars) masked for far too long a more appropriate feeling: anger. Anger that I started pursuing a diagnosis when Alex was 3, but no one tested everything they should’ve. Anger that I had Alex in a special education preschool and they were surrounded by professionals who should’ve been asking all the questions I was accused of not asking, but the professionals hadn’t caught the underlying problems, either. Anger that Alex was finally referred for an appropriate diagnosis — not because someone noticed Alex struggling and asked the right questions, but because someone was tired of perceived misbehavior. My fighting the school system labeling my child ultimately led to the right diagnosis. I should’ve been angry that all of the symptoms of Alex’s autism were initially seen as bad parenting and my own failings, instead of simply a neurodivergent child behaving consistently with their divergence. I should have been furious. Why hadn’t I been burning with rage for Alex’s entire life?

When I pulled Alex out of school because of bullying and got them into an online program, further isolating them from the normal development they needed, I should have been screaming. I should have been railing against a system that protected bullies more than the bullied. When Alex withered, embarrassed to correct deadnaming or misgendering, instead of trying to help Alex develop coping skills to manage their frustration (and feeling guilty when it didn’t seem to help), I should’ve been raging at a world full of adults who placed their own comfort over the emotional needs of a nonbinary child. When I fought for months to try to get a referral to a gender care clinic, getting the runaround and struggles with insurance and so many different things, ultimately feeling defeated and unable to figure out how to make the system work, why did that failure feel like my own?

Time and time again, I did everything right. I asked for help from the right people. I followed the rules. I fought and fought (in the ways that were permitted) to get what my child needed, and time and time again, the system balked and failed and spit my child out, leaving me to pick up the pieces alone.

Over the past three years, I’ve watched my child shrink… literally. As they neared their 18th birthday, a time when most children would be having growth spurt after growth spurt, my own child folded in on themselves. Body dysmorphia and internalized anger sprouted into anorexia. COVID precautions intensified a process that would have likely happened anyway. Therapy appointments, medication management, and routine care all moved online. Every visit the same questions would be asked: How are you eating? How are you sleeping? How are you feeling? And repeatedly, I rung the same alarm bells. My child is disconnected from their life. They won’t eat or sleep or do routine self-care without constant reminders. It kept escalating. I would say, “I ask my child to eat or brush their teeth and the argument ends with a threat of suicide from them.”

I was told, again, that I was the problem. I was told to back down. I was reassured that everyone was struggling but that things would work out. And I watched the bones show more and more at the shoulders and ribs; I watched the body hunch, the guts hollow.

I asked a doctor, “At what weight does this become an emergency?”

It was like watching the gauges on the car’s dashboard creep into red, but in reverse. With growing horror I realized that I had no idea how to keep my child alive. I begged, literally begged, for help. I was cautioned away from the help we needed. Do you know what hospitalization could do to your child? Inpatient treatment is a terrible thing and only should be used for the ones who really need it to survive.

“How do I know if this is that?” I asked.

I felt that uncertainty, that terror that I wasn’t enough. That fear and guilt I’d so keenly understood in the first seconds of Alex’s life ratcheted up to a wail. Then Alex stopped eating… completely… for days. In a panic, I asked my own mother, a physician, if I was wrong to feel like the system was willing to watch my child starve themselves to death while blaming me.

“You have to fight,” my mother said. “We’re not set up for that; you’re playing a game of hot potato with the potential for death.”

So I fight.

I fight the primary care doctor who says that they can’t admit the kid to the hospital. I fight the ER doctors who say all they can do is run saline in an IV and send us home. I fight for the referrals, I fight for the referrals to get processed, I fight the insurance, I fight the out of pocket expenses, I fight to get the money we need to pay for transport and all of the meals we’re not eating at home, I fight to get the help I need with my other children so I can be with Alex when they need me.

It’s not enough. Every individual cog in the machine spins contrary to another, and it’s not just healthcare.

It’s society.

It’s the fact that my own guilt, the guilt that was put on me by the world around me, masked the fact that the system fails. It’s the fact that mothers are held accountable for the health and wellbeing of their children even when the capriciousness of fate and genetics deals us a hand that can’t be played. It’s the fact that there’s so little actual help. Mothers are continually tasked with building their own networks for the aid they need to raise their children, but that kind of work takes resources, money, and time. Not all children are born to mothers with an equitable ability to build the ship while it’s sailing. Besides which, who is blamed when those children don’t thrive?

A man is applauded for changing a diaper. A mother fights for 18 years straight to save her child’s life. She sits in the ER, stroking her now adult child’s hair, crying, “How do I keep this kid alive?”

A nurse tsk-tsks derisively and asks, “Have you tried cooking the food she likes?”

Under the crushing guilt there is resolve, refined like a diamond from a heart that has burnt to coal.

I would destroy everything if I could remake this into a world where my child survives.