I didn't think I would be here again, in this particular place.
It's been years now that my two oldest children managed to tame their own personal demons and gained, if not total dominance, then great control over their mental illnesses.
Each of them was diagnosed with severe anxiety disorders and major depression at the tender ages of 10.
Now, at 21 and 19 years old, they are fully-functioning young men, in charge of their lives and imbued with the great desire to help others. Our oldest will graduate from college in the spring; the other is a successful sophomore at Iowa State University.
I gained control over my own demons over the course of about 5 years of therapy, therefore able to start my forties without the cloud of severe depression coloring my every day.
I'll never forget the day I realized my oldest daughter also suffered from mental illness. The signs of her
OCD and anxiety were unmistakable. With trembling hand I called the therapist to report that she needed to be seen immediately... my little girl was suffering.
Nothing can prepare you for the suffering of a child. And when it's your own child, you feel helpless and frantic. A fear so primal it makes you want to scream in agony takes over as you begin the waiting, wondering, and hoping.
Her disease also manifested at age 10.
She, too, found help through therapy and medication.
But now, here we are nearly 7 years later, and the worry and anxiety seem more than I can bear. My little girl is suffering again and there truly is nothing I can do to fix it.
She's suffered from unceasing migraines for the past 7 months. That's close to 210 days with chronic pain. She's gone through several medication adjustments and changes with only occasional, moderate relief.
As if that weren't enough, depression has reared it's ugly head again, taking control of her heart and soul. She feels hopeless. Helpless. Scared.
Through it all, she's persevered, maintaining A's and B's (maybe one C) in all advanced classes. But the shroud of depression blocks these accomplishments from her view. All she sees is cloudy and dark, the lenses of depression filtering out the happy, the good.
There is no sunlight.
Only pain.
And I find myself in a place I thought I'd never again be forced to visit, helping my child through a maze of physical and emotional pain.
And trying not to scream.
But hugs aren't enough.
She will need more courage and strength than ever before to make it through.
As will her father and I.
I wrote the following nearly 9 years ago, in the midst of my second son's panic attacks. It remains an accurate reflection of a mother's fear and torment.
Of my fear and torment.
I’m being held prisoner. Like a tiger in a cage, there is nothing I can do to protect my young. I am not in jail and have never been arrested. But the walls of my prison follow me wherever I go. They are inescapable. My jailer pursues me endlessly, not even in my sleep can I find freedom. The agony of my situation makes me want to cry out in pain, to wail and keen, to tear my clothing, but I cannot even reach the tears. The pain has cut through my heart right into my very soul. Any mother would feel this way, for the bounds of my prison are my son’s mental illness.
How did this happen? Why? Could any God be so cruel to an innocent child? I question the wisdom of faith, for I no longer can have faith in anything. “Don’t worry, he’s going to be OK,” his therapist assured me repeatedly over the course of the last year and a half. But he isn’t OK. In fact, he is worse. Whose fault is it? No one’s. Perhaps that’s partly what makes this so difficult to bear. There is no one to blame, no one to point a finger at, to scream at, to curse.
I hold my son in my arms as he cries, wails and screams in the agony of a panic attack so brutal he feels there is no escape. His weight is crushing me, shoulders digging into my chest, tears soaking my blouse. And I remember holding his dear, sweet baby-soft, fuzzy little head in the crook of my neck. I can remember how he smelled, that wonderful, innocent baby-powder smell. Eleven years ago, when I held his peaceful little body in my arms, I never dreamed he would have to face such a demon. All there was then was the infinite promise the future would hold for my perfect little boy. Now, I hold his sobbing, hulking form as he screams for me to protect him, keep him safe, not to let anyone hurt him, and I wonder how much of that promise is now lost.
We are waiting for a new medication to start to work. Two-to-four weeks, we don’t understand why the symptom reliever isn’t working for him, we are stumped. Maybe you should get a second opinion. Never seen a child with this severe an anxiety disorder before. No comfort anywhere I turn. A strange reversal from hearing he got the best grade in class, was the best speller, earned the highest score possible in the music festival, Now he holds the title of “most severe case.”
There is no one to have faith in. We wait, fingers and toes crossed, for a medication to start to work. It has barely been tested on children, no one knows what the long-term side effects might be, how it works, or even if it works now, whether or for how long it will continue to work. I have no faith. There is simply nothing else to try.
It’s no one’s fault, I repeat as my mantra. It’s no one’s fault, I assure his grandparents, cousins, my husband. It’s no one’s fault, the therapist, the psychologist, assure me. I’m afraid you are feeling guilt over this, let me help you with that, the therapist says. Guilt? What is motherhood without guilt? I remember the time I forgot to send in snacks in first grade, the time we forgot to go to the elementary art show, all the times I have made mistakes as his mother. I forgot that he is the one who doesn’t like milk on his oatmeal, gave him his brother’s lunch bag, yelled at him in anger. This is genetic, they say. Small comfort.
Intellectually, I can accept that it is some cosmic joke, an error of genetic combination. But in my mind I go over every minute of his life, looking for signs I might have missed, ways I should have behaved toward him, things I should have said. I know it is genetic, but there must be someone to blame. I am his mother, I am supposed to protect him. Now, I cannot keep him safe. Safety. Look both ways before you cross the street. Wear your bicycle helmet. Buckle up. If the ball rolls into the street, don’t run after it. Never talk to strangers. Don’t use drugs. It was all so frightening, yet so simple. I could teach him to be careful, to be safe. Now I try to teach him to recognize the signs of stress before they become distress. Hold my hand, count as you breathe, go take a shower. I will keep you safe, I assure him. But I know I cannot. I have no more power over his anxiety than he does. I feel so helpless. So alone.
He cannot go to school. His teachers are understanding, but they don’t understand. How can they? This is so much more than a stomachache to avoid school. If he had diabetes that was out of control, or was laid low by a viral infection, or a congenital heart defect, his classmates would all have made him get well cards. But I hesitate to tell them the truth. If his friends know, will some of their parents no longer allow them to play with him when he is well? Will it become something to bully him about? Will they think he is crazy? Will he get well?
Are you sure this is real? his grandmother asks. She means well, and it is a valid question. She lives far away. And it would be so much simpler to deal with if he were “faking” something. But would anyone question whether an infection or other physical illness were real? Would you question the shortness of breath of an asthma attack or the fever of strep throat? This is a physical illness. His body chemistry is out of whack. The only difference is that it affects the functioning of his brain, not his liver, or heart, or sight.
Just as no one can truly understand how overwhelming caring for a newborn can be until he/she has a baby of their own, no one can understand what it is like to face mental illness without direct experience. I try not to expect anyone to understand. But I am so alone.
How do I even begin to describe the all-consuming, abject fear of hearing my little boy scream, “It isn’t worth it if life is going to be like this,” and to know, in the midst of his terror and desperation, he means it, Don’t ever say that, if you ever feel that way you must tell me, have you ever thought about how you might kill yourself?, it won’t always be this way, I will protect you. But I can’t. I can’t make it better. A kiss, a Band-Aid, a Life Saver, a hug. Not this time. I am afraid to leave him home alone.
You must search for answers on the Internet, you need to take care of yourself, you need to get more sleep. They mean well, but they don’t understand. I can’t even get a decent meal on the table, fold the laundry, fill out school registration forms, clean, let alone do anything else. The therapist suggests taking a candlelit bath with scented bath oils when I have a free moment during the day. Only a man or a non-stay-at-home parent could suggest something like this. With four children, a puppy, Brownie meetings to plan, therapy sessions, meetings, teacher conferences, and the weight of the world on my shoulders there is no such thing as a “free moment.” Plus, before I could take a bath, I would have to clean the master bathroom, buy scented bath oil, find candles and matches, put the puppy in his kennel, make sure my four-year-old is safely occupied, and these days, make sure my son was not headed for panic. Never mind having to clean the bathtub again to wash away the slippery oil, put away the candles and matches, and probably dry my hair. Impossible.
So I wait, and watch, and worry. Will I be an 80 year-old woman with my sixty year-old son still living with me? Will this medicine even work? What if it doesn’t. What if it works for a while, but then stops? What if there are side effects? What do I do if he has another panic attack tonight? Will he be able to go to school on Monday? What if one of his friend’s mothers calls?
My four-year-old daughter asks me why we didn’t go to the library last week. Her brother didn’t feel well. Will we go next week? And before I can answer her she says, “We probably have to wait until his anxiety disorder gets better, right Mommy?” That’s right honey. We’ll just have to wait.
