For the month of May, Kindred Mom is covering the following topics: Feeling Inadequate, Sleep-Rest-and-Rejuvenation, and Mental Health Awareness Month. We hope you’ll return to read the wonderful essays we have to share with you and cheer on the courageous mamas who have shared them. Join us on the Kindred Mom Facebook Group to connect with our community.
Anita’s note: Sarah has given me permission to share her story. We first shared her story in October of 2015 for the #write31days challenge series 31 Glimpses into the Unquiet Mind.
The hiss of the bus stopping at the United terminal at the Newark, NJ airport stabbed me. We grabbed our suitcases, in preparation from finishing our transfer from one terminal to another on the airport bus.Two years had passed since that fateful night when we almost lost Sarah, and I hadn’t expected my eyes to tear up as traveled through an airport we had never been to before.
Questions bounced around inside my head as I gripped the my suitcase handle. Had Sarah stumbled off this very bus the night she almost died? Had she listened to the swoosh of the automatic doors and smelled the jet fuel before collapsing on the tarmac? My mama-heart wanted to know the details of that night, even if they hurt. Even though two years had passed, I wanted to make sense of all that had happened during that dark period of her life.
Every momma wants to soothe, protect, and bring light into our children’s nightmares–whether our child is five, 15, or 25. I will probably never know exactly what happened that night, but I believe that praying for my daughter made a difference in the outcome of her story.
The very night that sirens wailed and flashing lights converged on the scene while paramedics knelt at Sarah’s side, I knelt beside my bed, 2000 miles away, clueless to her plight. I knew she was in danger, but I didn’t know how much. The urge to pray was so great that I did something I had never done before–I sent out requests to some of Sarah’s mentors and friends and asked them to pray with me.
We didn’t find out until over a week later that paramedics rushed Sarah to a hospital near the airport and eventually released her after 12 hours. It took months for the full story to emerge.
Our well-brought-up-Christian daughter, the one we strove to instill with the proper balance of caution and freedom, had accepted some drug-laced ‘candies’ from strangers. Without even stopping to think of all the lessons we’d taught her, she had popped the candies into her mouth and ended up passed out at the airport on the tarmac between terminals. While it wasn’t exactly an overdose, it did require hospital observation.
At almost 21, she seemed too old to accept and ingest candy of questionable origin from people she had never met before. After all, we taught her all about stranger danger from an early age.
Had we failed as parents? For the past two years, Sarah’s behavior had bewildered us. She started binge eating and gained weight. She went away to college and struggled to get good grades—despite her 4.0 high-school GPA. She lost confidence in her ability to reason and think and write.
When she couldn’t decide on a major, she went to Argentina for a year, where she seemed to suffer from the throes of first love as well as deep depression. When she returned, the first love was a thing of the past, but the depression remained.
We took her to counseling. She continued to gain weight. We took her to psychologists. She spoke of going for a walk at night and stepping in front of a car. She came home to stay with us until we could figure things out. I spent hours on the phone trying to find a treatment center that our insurance would pay for.
After seven months, the depression loosed its grip upon her life and she returned to her cheery self again. She stayed up late at night, sketching and painting. What a relief that she had found interest in something—anything, again.
Sarah’s grandparents invited her to travel with them to Puerto Rico for a month. After one week away she seemed to implode on the stage of social media before our very eyes. She met some guy online and fell in love again.
Sarah started bragging about her drug use. Drug use?! Our daughter had safely navigated her early teen years without ever experimenting with drugs. The news devastated me. When I tried to talk to her about it, she unfriended me on Facebook.
She met more guys on line, gun-toting terrorist types. She wanted to meet them, so she planned a trip to Europe. She informed us that it was her life and she would live it the way she wanted to.
When I pointed out that she had only $125 in her bank account after purchasing a one-way ticket to London, she accused me of interfering in her life. She lost her ATM card, but continued with her plans of ditching her grandparents at the airport and catching a flight to London five days later.
Fear squeezed me breathless when she got arrested for shoplifting the last week of her stay in Puerto Rico. Shoplifting?! Our responsible daughter, who had held down a part-time job from the time she turned 15, had shoplifted?
We didn’t know Sarah any more. She had morphed into someone who did incomprehensible things and spouted vitriol all over social media. But we loved her and wanted to help.
Unfortunately, once a child turns 18, parents have minimal ways to help. We can’t just haul our 18-year-old off to a psychologist and demand to join the session. We can’t even talk to the psychologist without our adolescent’s permission.
All we could do was pray. Pray for understanding. Pray that she wouldn’t make it to London. Pray that she would come home. Pray that she wouldn’t die penniless and friendless in some dark alley.
It took another week and a few miracles to find out what ailed Sarah. Something we had only joked about a time or two but had no real knowledge of: Bipolar Disorder.
For months afterwards, I let guilt beat me up on a daily basis. If I had only known more, I could have spared Sarah the heartache and trauma of her manic experience. Once I read a few books about bipolar disorder, I couldn’t believe that we, her parents, and the entire medical community, had missed the diagnosis.
But unlike diabetes and pneumonia, bipolar disorder never presents itself in an orderly progression of symptoms and clues. And once an adolescent turns 18, he or she has the legal right to autonomy from concerned parents. The median age for a bipolar diagnosis is 25, which means that half of those diagnosed receive their diagnosis at an even younger age.
If we had been informed, we could have guided Sarah to find the help she needed before the drug-laced-candy-from-strangers incident and collapse at the airport. We could have sought treatment before she did drugs. We could have prevented so much heartache if we had only known a little more.
In the year leading up to her diagnosis, I spent hours and hours on the phone. I argued with insurance agents about accessing treatment. I discovered that the standard for coverage for mental illness differs greatly from medical coverage.
Insurance companies only want to pay for in-house treatment if a patient is in immediate risk of dying. In the case of an eating disorder, the patient must be almost dead (they actually asked how much weight Sarah had lost or gained, and whether or not a physician would attest to her imminent demise). For a mental illness, the patient needs to have expressed suicidal ideation within the last 12 hours.
As soon as a patient shows any sign of progress, the insurance company will no longer pay for treatment–even if the parent, caregiver, or spouse (who know the patient better than anyone else) has concerns about the patient’s health or safety. To make matters worse, one can only find in-patient mental health facilities and partial-hospitalization programs in larger cities. The closest facility to our hometown required a 90-minute drive each way.
Sarah spent ten days in a mental health hospital, and keeping her there that long took constant communication with the medical staff and the insurance company. We knew the real Sarah, and we knew she wasn’t ready to reenter society. But we had no choice. They discharged her to my husband’s care before she was ready to live on her own. The ten-day reprieve did give us time for a crash-course on her illness so that we could understand what she faced and continue to provide support for her.
It took almost three months after her hospitalization for her psychiatrist to fine-tune Sarah’s medications to the point that she could re-enter society and cope with the emotional trauma of her actions during her manic phase.
Supporting a family member who has experienced a mental health crisis is similar to supporting a cancer patient who has finished chemo. It takes awhile for things to return to normal. We got frustrated at times with Sarah’s lack of progress, until we remembered that trauma to the mind takes time to heal, too.
If only we had known more about mental health issues, we would have been able to distinguish between rebellious behavior and behavior that signals a possible mental health crisis. We would have kept track of her behavior and had data to present to her medical providers that might have helped them make a diagnosis sooner.
Sarah suffered from orthorexia* her sophomore year of high school, so I was convinced that help for her problems with depression and binge eating could be found in an eating disorders program. Because we had a good relationship with Sarah before the crisis, she willingly let us talk to her medical care providers–which was both good and bad.
Good because we could answer questions and give information (Sarah struggled to remember details during this time period). Bad because at times we felt as everyone assumed that WE were the problem. The medical professionals wouldn’t believe us when we explained that Sarah wasn’t acting normal.
A mama has to have persistence in order to advocate for her child (or other family member) when it comes to mental health issues. Standing up to insurance companies does not come naturally to me. I avoid conflict and I hate talking on the phone. But Sarah’s life depended on my willingness to advocate for her. Without that persistence, Sarah would not have received the help she needed.
We have learned as a family how to deal with Sarah’s diagnosis. For the first six months, Sarah asked me to call or text her each day at the specific times she needed to take her medicine. She ask me to be her accountability partner, and I periodically check up on her to see if she feels like she is taking good care of herself (regular sleep, exercise, and diet all play a part in regulating bipolar disorder).
I encouraged her to find a counselor near her school so that she has a disinterested third party who sees her on a regular basis to monitor her. Sarah chooses to disclose to her potential employers that she has bipolar disorder and gives them permission to contact her psychiatrist. In other words, she is building a safety net for herself. Her life belongs to her, but I’m thankful that she has invited me into her world.
*orthorexia is similar to anorexia, with an emphasis/obsession on right eating that results in weight loss and withdrawing from social situations where food (especially food that the orthorexic deems as ‘unhealthy’).
Anita Ojeda has a passion for educating people about the early signs of mental illness in adolescents. She writes about her caregiving journeys on her blog www.blessedbutstressed.com. When Anita’s not lurking outdoors looking for and photographing rare birds in odd places, you can find her hanging out with her husband, camping with her kids, or mountain biking with her students.