“It is Friday evening and I am sitting in the ER with my beautiful eight-year-old son. With us, we have his six favorite stuffed animals, two Harry Potter books, a book about his favorite latest obsession, Greek mythology, and some snacks.
I have spent much of the week calling various children’s hospitals and psychiatrists. We have an upcoming psychiatry appointment scheduled, but I don’t think we will make it that long. There are no openings in any of the state’s children’s hospitals. I have also looked into every private child psychiatrist within an hour radius to see if my son could be seen sooner. Nobody could schedule him, even those who did not take insurance and required full payment upfront. I felt like I had no choice but to bring him to the emergency room.
The smiling nurse checks his vitals and asks why we are here tonight. ‘I think he’s manic,’ I say. ‘His moods are rally erratic right now and I’m worried.’ I pull out a laminated copy of the bipolar mood scale from my backpack. I had printed it at work a few days before. Ten means very, very manic, while zero means you are too depressed to function. In the middle of the chart, numbers four through six are highlighted in green. This is considered the range for typical, healthy moods. ‘I think he’s at a nine,’ I say, pointing to the chart. Nine is in bright red. The nurse looks at me skeptically. Who am I to know about ‘mania?’ We sit down and wait. My son is restless, and he jumps on and off the plastic chair with his knees, slamming his body carelessly against everything around us. The young couple next to us moves down a few seats. It’s flu season and lots of people around us have face masks on. It was stupid to bring him here, I think. As soon as we see the doctors, he’s going to calm down and they will tell me I am abusing the emergency system and his Medicaid card. All we are going to leave with is the flu.
Shortly a doctor comes and leads us out of the waiting room. She apologetically tells me that it’s a busy night and there are no rooms left. She gives us a bed in the hall. I am happy about this. Now he can spread out his stuff on the bed and maybe I can keep him more occupied. I explain what’s going on and his history.
My son came to live with us when he was four and we adopted him 8 months later. He has been through hell. As a result of his particular combination of trauma and genetics, he has been diagnosed with ADHD, PTSD, TBI, and substance induced bipolar disorder. But he hasn’t taken any new medications that could have induced this mania.
His moods have been swinging in increasingly wider arcs for the last few weeks. At school a few days ago, he started crying and hitting himself in the head. There was too much going on, he said. He was thinking about too much. He heard buzzing in his head like it was full of bees. Today on the way home from school he said he wanted to die as he was vibrating with wild intensity and glee in his booster seat.
Magically, when I mention these last details, a hospital room is suddenly available. This room comes with a ‘safety companion,’ a nice man who sits outside the open curtain and can intervene if I can’t keep my boy safe. He is drawing detailed robots in a sketchbook. He smiles at us as we enter the room. There are claw marks all over the walls by the head of the bed. The mirror has been removed, but the wall is damaged where it had been as though it had been ripped off. Oh, I think, this is where they put seriously crazy people.
My baby does not belong here. This child says he loves my spaghetti because he says he can taste my love in it. He asks me to buy food for homeless people downtown. He reads voraciously. But a few minutes later he starts making high pitched voices for his stuffed animals, throwing himself giggling against the bed over and over until the knees of his paper hospital pajamas are pilly and almost worn through, spinning until he falls down, and doing Card B and J Lo impressions. His favorite song of last summer, ‘Dinero,’ comes bursting out of him with loud, wild energy. ‘ME AND BENJAMIN FRANK-O STAY AT EL BANK-O GETTIN’ CHECKS LIKE NIKE EVERYWHERE THAT I GO!’ He can’t stop laughing. I almost want to laugh with him because he’s funny. But then his behavior in the context of this room with claw marks on the wall makes me cry instead.
There are police officers in the hall outside. They have brought in a man who is strapped to a bed in the hall. He struggles against the straps and I can tell he does not want to be strapped to that bed. I stand up in front of the curtained entrance keep my son in the room. He senses what I am doing and springs up, trying frantically to get past me. ‘Baby, if you run out there like this someone is going to hold you and I don’t think you’ll like it,’ I tell him. My black, bipolar son with a brain injury trying to antagonize the police. He looks at me. ‘I want them to hurt me, mommy! I want them to kill me with their guns!’ he says intensely and the wildly laughs and tries to push past me out of the way. Our safety companion asks if I need help, but I say we are ok. I don’t want anyone to touch him. A nurse comes to take his blood pressure. One of the police officers, comes over and asks if he wants to squeeze his finger when the cuff gets tight. My son smiles up at him and squeezes his finger. I am touched. I have spent the last years trying to keep my son and his erratic behaviors away from the police and make him understand that he has to be calm and careful around anyone with badges and guns. But this man is kind.
After hours of waiting and vacillating between laughing and crying at my child as he swings between silly and scary, never dipping down the mood scale to that safe green zone between four and six, the pediatric psychiatrist arrives. She has a severe haircut and does not smile with her eyes. ‘He’s just cute as a button,’ she says flatly. I don’t like her. You don’t really think that, I think. You don’t know who he is. But do I know who he is anymore?
She takes me to a separate room. My son is still vibrating madly with energy. I am afraid to leave him with the officers and the safety companion, but the doctor insists he will be fine. ‘I think he needs to be admitted,’ she says. I look at her blankly. ‘To an inpatient psych hospital. He’s experiencing psychosis.’ Psychosis! The word stops my heart. I want to run back, grab my child, and run away from this place and this woman saying these words.
I ask her for how long he would need to stay, and she says there is no way to know. Maybe a few days. Maybe longer. She explains that it could be anywhere in the state that has an empty bed, and we would only be able to see him during visiting hours. I want to vomit. I feel dizzy. Instead I cry and raise my voice. I explain his history. Leaving him would destroy all the trust we have built in the last few years. He still sleeps with me. He would feel abandoned. I refuse. She tells me they could admit him anyway, without my consent, if her attending doctor thinks he’s sick enough. I say absolutely not and sob. She leaves and comes back to tell me they have decided to ‘take a leap of faith’ and send us home with enough risperidone to hopefully keep us out of the hospital until his next scheduled psychiatrist appointment.
On the way home, I feel empty and irreparably broken into a million pieces. My son has stopped giggling and moving ceaselessly and has fallen almost asleep, sedated by his regular nighttime sleep medication and the new risperidone. How can I possibly protect him and get him the help he needs when he needs it in a system like this? How will other people understand when he’s older. How can I make sure he’s safe? Bipolar disorder doesn’t go away, and you can’t learn coping strategies and ditch your meds as an adult, like some adults with ADHD can. It’s not like a broken leg that will heal. He, and we, will never be able to move on from this. Bipolar disorder will exist alongside him for the rest of his life.
Adjusting to this new reality is taking some time. I am scared. Not of him, but for him. And my fears are not unwarranted. Over 50% of people with a bipolar diagnosis attempt suicide, and about 15% are successful in their attempts. A quick Google search will yield lots of high-profile names of people who have bipolar disorder, many of whom have famously taken their own lives. Amy Winehouse, Carrie Fisher, Kurt Cobain, Marilyn Monroe, Vincent Van Gogh…I think of his erratic behaviors and sweet innocence and am unwillingly drawn into thoughts of a future for my son that reminds me of Suzanne from the Netflix’s Orange is the New Black, struggling with mental illness and the law while desperately missing her adoptive mother.
The system I have to navigate to get the help he needs is incredibly inadequate. Psychiatrists, especially child psychiatrists, are incredibly difficult to find and make an appointment with in a near crisis situation. Waiting lists are long. Appointments are scheduled months apart. If you have Medicaid and can’t afford to pay doctors that won’t accept your insurance, waits can be even longer. If you have ever seen your child struggle with mental illness, you know how terrible any wait for help can be when help is needed. And since so many mental illnesses are the result of chemical imbalances in the brain, sometimes there are few at home remedies and strategies that can make a substantial difference for your child.
But I am my son’s mother. And he is my child. And we are in this together. He will have to learn to monitor his moods, his health, the amount of sleep he gets. He will have to learn his own personal mood scale and how to tell where he is on it, how to stay in that magical green middle zone. He will have to walk the line to determine when a particularly happy day or a sad day turns into the beginning of a manic or depressive episode, and together we will have to learn what that means he needs to do. I will have to learn how to live and how to let him live with this illness, in spite of this illness, around this world illness. When to trust him, and when to step in. When to worry and when to stop worrying and enjoy him and the life our family has, which is a good, beautiful life. And it is still good and beautiful. This does not have to break us.
We will both have to find the middle, though right now that seems like an impossible place to find. But I am going to let myself believe that we will find it together. And that belief can be enough for right now.”
Do you know someone who could benefit from this story? SHARE this story on Facebook with your friends and family.