The diagnosis didn’t change our life. In some ways, it only presented more challenges. There is no magical diagnosis that will “fix” my son.
by Danielle Barnsley
When the doctor handed me a prescription for my son, an anti-depressant, I was paralyzed for a moment. My head swam with things I wanted to yell — I don’t want to make this decision, please don’t make me. He’s seven. A boy. Practically a baby – and yet, I nodded, carefully pinching the end of the paper and agreed to take it home if he would make us an appointment with a specialist so we could get an official diagnosis. It was the beginning of the lies we told ourselves to get through our new normal.
When we’d gone to the doctor that day, it wasn’t related to my son’s mental health. He’d been sick for longer than usual, and I wanted to make sure everything was okay. Midway through the appointment, the doctor lowered his voice, asking, “Is he always like this?” I paused for a moment, stunned by the question. I nodded. Yes, my son is always like this, it’s not a big deal, I heard myself say.
The doctor disagreed. As he spoke about the abnormality of his behavior, I was filled with shame. Our life has always rotated on his needs. I adapted while nursing him (only sitting up, in a specific position). His father and I walked around like zombies for the first four years of his life, because he refused to sleep. We learned the art of transitioning from one activity to the next. We assumed that this was normal. Nothing was wrong with his obsessive nature, peculiar demand for routine and structure.
“… while it was sometimes glaringly apparent that there was something wrong with him, there was nothing wrong with him in our eyes. He was our little boy, our love, and he was perfect.”
Those were the first set of lies we told ourselves. There were, of course, many more as the years passed because while it was sometimes glaringly apparent that there was something wrong with him, there was nothing wrong with him in our eyes. He was our little boy, our love, and he was perfect.
That day, the doctor handed me a prescription for an antidepressant. I made it to the car before I burst into tears, sobbing outside the car, briefly. Had I broken my child? What seven-year-old needed medication? Was the doctor wrong? What if I gave this medication to him and it ruined him? How would we deal with the judgment of being “those parents” who put their child on medication?
My husband and I decided the medication could wait. It wasn’t urgent. Another lie, of course.
Our son was spinning out of control. We couldn’t get him to stop climbing the walls. The horrifying panic attacks began to happen on a near daily basis and he began missing school. When he did go, we had to coerce his every movement. In the evening, it was a battle to get him to do his homework. He was picking fights with his sister, he was obsessing about every little thing, forcing the rest of the family to fall in line with his rigidity. His meltdowns were explosive and exhausting for us, but most especially for him. He wasn’t sleeping more than four hours a night, if we were lucky.
My husband and I towed the party line: “We’ll have a diagnosis soon. It’ll be over.” On the nights when our son would completely disappear despite standing right in front of us, screaming as hard as his lungs would allow, we’d whisper, “We’ll have that appointment soon.” When I’d have to sit in the school with him for an hour or more before he’d be ready to go to class, I’d think, “It’ll be over soon.” We were stoic, and patient, loving and generous with our son because we’d convinced ourselves that the impending diagnosis was magical. It would solve everything.
Neither of us openly admitted the feeling of failure, or that we felt like we were drowning. I never told my husband how overcome with grief and guilt I was when I had to sit helplessly beside our son as he hyperventilated, as he struggled to calm himself, as tears rushed down his cheeks. My husband never expressed how he felt lost and unsure at how to deal with his own son. Without knowing it, simultaneously, we were both feeling as though we’d failed on an astronomical level as parents. Openly, we spoke sacredly of the diagnosis. It was our life preserver.
Then that day came, the one we were betting on. Obsessive Compulsive Disorder. He would need an antidepressant to deal with the lack of serotonin in his body. The same medication would aid his anxiety and alleviate the compulsions. As the psychiatrist described each of the elements required for treatment, each word felt like a punch to the gut. When he handed me the prescription,, I felt all the lies I’d been telling myself crumble away. I felt foolish for ignoring the signs. I berated myself for not intervening sooner. I wondered if my own mental health history had caused this. In short, I replaced the lies with guilt and anger aimed primarily at myself.
“I still believed, truly believed, that this diagnosis would fix everything.”
One lie remained: I still believed, truly believed, that this diagnosis would fix everything.
The diagnosis didn’t change our life. In some ways, it only presented more challenges. We were up against the OCD stereotypes, people who expected it to look as it had in a film or television show. It was trying to get people to understand that OCD isn’t just being particular, but an actual debilitating anxiety-based disorder that drives every second of every day for that person. Then, there was the raw realization that our life wasn’t really going to be different. We would always have the feeling of needing to be prepared for the worst. Just in case he has a panic attack at school. Just in case he loses his cool in public. Everything, just in case. As it always had been.
We knew with incredible sadness that no matter how hard we worked to make our son’s life comfortable, easier, and better, he’d still have OCD. We knew that there was no fancy toy or gadget, no snuggles in our bed or reassuring talk that would make him better. We’d told ourselves, undoubtedly, that the diagnosis would “fix” him, would fix the chaos we dealt with in our home. Except that while it helps us navigate his life, and our own, it won’t ever be gone. There will be good days and good months, but there will also be bad days and months. The lies helped when we needed to cope, they served their purpose. Maybe to some degree there are elements of this journey that I am still sugar -coating, or ignoring, and I think it’s perfectly normal to want to hide from the unknown and unfamiliar, especially when it’s overwhelming. But it can’t be the place where you hang all your hopes and worries permanently. This wasn’t always going to be a cakewalk and I had to learn to be okay with that.
Our normal wasn’t the normal I was hoping for all along, but it’s our beautifully, messy, loud normal and my son is still my incredible little boy.