A Life In Words

Taylor Tremusini arrived at 9:05 a.m. on June 23, 1993. Almost from the beginning, Taylor experienced signs of stress. She cried…a lot. I was told she had colic. Although breastfed at first, she couldn’t tolerate almost any formula. She almost never napped in her bed. She was held in order to sleep. Too much movement, light, singing, patting all at once was simply too much. Calm and soothing was her medicine but the recipe meant as little stimulation as possible and being held in order for this beautiful, tiny black haired girl with warm, glowing skin and fragile nervous system. She was always in the 3rd percentile, meaning kids her size were 97% likely to be bigger. Taylor lived a mighty life and held such power for a petite and perfect girl, my girl.

As she grew, her personality showed to be one full of curiosity, random kindness,  and raucous laughter. Taylor loved to take long walks with Papa, especially. People around us called a spoiled brat because she suffered tantrums. I felt helpless trying to take care of her and I know it looked like I allowed her to behave poorly but I knew she struggled because some things, she didn't understand. Maybe her confusion and despair led to aggression, I don't know. I know that the underlying issue is fear. 

She pushed other young children. And then she hugged them. The tantrums remained and followed a pattern. Each evening around 6pm, Taylor crawled under the coffee table and she screamed until she rid herself of the overwhelming stress of the day. Moreover, she ate little until later and it was difficult to soothe her when she didn’t get what she wanted. In order for me to persuade her to eat, I played games that included lots of play. Later, when I taught Project Construct curriculum at her school campus, I understood the value of learning through play. Taylor loved laughing above all. She and I laughed when I cooked and of course, she wasn't hungry. I sat down by her with my dinner. I talked happily to her and pretended to look away from my fork that held a little bite. I waved it gently midair only to discover my cheeky girl had eaten my bite of food! She roared with laughter and a mouthful of “my” food and it worked. The struggles were woven into laughter and love and trying...always trying. 

Taylor attended preschool for 4 hours, 2 days per week. Almost each day she played alone. She started preschool young for social interaction, her mother always seeking ways to encourage her growth and love of play. We enrolled in Parents As Teachers in order for me to watch Taylor's development and grow with her. She created many of the same art projects in school; a pair of toilet paper roll binoculars which she taped and colored almost every week. It was an early coping mechanism. I remember watching her and she didn't seem to struggle but I felt like she was missing out and I felt sad for her and again, couldn't help my daughter or understand her tantrums when I came to visit her class. I knew things could be too much for her or maybe something was wrong even at this tiny age, I felt helpless to know how to help her and to have everyone back off. I couldn't explain her behavior or what it was like for her to suffer. I knew she could never be a brat. Honestly, no child can be labeled as bad. I wanted her to get all of her needs met. She grew into the class and finally engaged with the other children, often displaying care for them, building relationships. I volunteered often with the school and we laughed and sang with the class. We shared such intimacy all her life. How I missed the fact that getting a divorce when she was 4 years old really caused her and my son so much trauma. I thought I was doing the right thing. 

Taylor attended ½ day kindergarten, a time still trying, difficult. She experienced enuresis. Then, in 1st grade, encopresis. These early warning signs of stress remained with her as she attended primary school from 2^nd-4^th grade in a public school. It manifested in extra help when she dazed off, separated herself from the class. I didn't know how to explain to the school that things were...just too much for her even though socially and academically she remained bright and sweet. Was it my fault? My decision to stay home to raise her and work part-time for most years, even later ones, remains the best decision I made for my children. I caused pain, experienced my own trauma and that had to compound for the kids. We didn't know about trauma enough for anyone to support me through it. For Taylor, separation anxiety that manifested at birth would remain with her for a lifetime. She said, "I want my mom" so much and that she missed me but I experienced all of the fits and rage and anger from her. We were bonded and separate forever. We consulted counselors, pediatricians, and psychiatrists. They drew blood, talked, and tested. No one knew the cause of Taylor’s suffering. I watched the miracle that was my little girl so full of questions and so full of life and care for other people. Her infectious laugh and tiny frame met with cuddles and smiles, much of the time for her new baby brother when Taylor was 4 years old.

Tutors, volunteers, and special education teachers assisted Taylor with her classwork. She was a bright and engaging girl but stared into space, often unable to keep up with school. 4^th grade brought a 504 Plan, which does not create complete intervention at school but it allows for accommodations that included more time on tests, special seating, recognition of her school phobia, and more. Of course, people questioned me about that, too. School phobia sounds like a kid who just wants to stay home from school. At home, Taylor created fun for friends and family. 

We invited kids into out home before and after school and during the summer. From home base, we created lifelong friendships and held many, many play dates and parties. In the summers, we hosted a summer camp in our home where the kids truly thrived with experiences. Even then, she experienced fits of rage followed by hilarious stunts with friends. Kids spent time with us jumping on the trampoline, watching movies, and playing games in a house full of loud music, food, road trips, parties at Christmas, birthdays, and swimming in the pool playing Colors or Marco Polo until too late during those dreamy, hot summer nights. No matter the problems, we met them with an incredible and rich group of kids I still love to this day. 

We struggled for answers. She never talked about feeling depressed or sad that she couldn’t integrate the way other students had. I regret that now. I found some educational documents (not a great idea to sift through that stuff a lot) that talked about her being depressed. I remember that we tried Zoloft but all medication left her sick in some way. I wanted to talk so many times and the conversation quickly turned confusing for her and she blew up. I never knew what to do and I know that being around it for my son must have been difficult for him, too. She suffered in silence.

For middle school, we tried a smaller, private school with smaller class sizes for Taylor  and her brother, who she loved to play with and protect. I didn't realize that change would be too much even twenty years ago. Taylor’s response to the general school setting deteriorated. She was still smart and capable but the atmosphere left her shaking. She had no friends, she said. That hurts me, still. When I was called to pick Taylor up early several times per week, she'd be sitting in the office, swinging her feet, and chatting with the secretaries, but the rush of sadness and pain in me when I met her face of a pale, grey pallor, her little arms shaking but still smiling. My heart sank and my soul ached to take away her pain. I have never met anyone so brave. 

By this time, we had seen more therapists who wanted to review her history again and again and this continued until Taylor arrived at the age of 18 when I could no longer influence her to seek or complete treatment. She was diagnosed with Separation Anxiety, School Phobia, ADHD, Oppositional Defiant Disorder, Generalized Anxiety, Major Depressive Disorder, and Bipolar. They were all wrong.

7^th grade introduced us to Metropolitan School for alternative learners with ED, or emotional disturbance, like in Taylor who thrived in a smaller classroom with modifications and opportunities for her to be creative, and she shined brightly. Teachers expressed delight in her behavior and care for others. We remain grateful for Metropolitan’s small class sizes of 4-6 students who wore headphones and work in a group or at their own paces through kinesthetic learning, art, poetry, song, and a multitude of rewards. Their praise was socio-emotional in nature including following the rules, helping other students, trying something difficult, and being a kind individual. This was a time in Taylor's life when she met friends she kept for life. At home, we struggled but at Metro, she felt part of something and obtained more social skills help. She still struggled and we still tried.

When Metropolitan School closed unexpectedly, education lost Taylor in the public school system. Now in high school, she suffered silently. Her trips to the school counselor were frequent and so were calls home. In a short order, the special school district referred Taylor to obtain a personal tutor outside of school within the Missouri Options program. The program provided Taylor with a high school diploma. Even during these turbulent times and fits of anger, Taylor developed a high sense of duty to protect others and even animals. She made friends and almost no enemies. She laughed so hard, she fell off the couch or slapped the cushions beside her. Her loves were food, laughter, friends, tattoos, dogs, and our yearly jaunts to Florida with a gang of kids. No adults, only me.

We celebrated birthdays, hosted Christmas parties at hotels with indoor pools, swam in the summer, traveled with her friends to concerts, parks, and skating rinks, both on and off the ice. Taylor’s favorite destination was the beach. Each year, about 8 of us, 7 children or teens, descended upon the beaches of Florida where Taylor found, “the only place she felt truly free.”

After high school, we continued to try to find a diagnosis for Taylor. Amid the mix of prescription medications that only caused nausea or fatigue, driving recklessly seemed to be Taylor’s most threatening enemy. I never knew that driving recklessly is part of Borderline Personality Disorder (BPD) a fateful diagnosis she received too late. I still wonder if any one of the myriad of professionals we sought, if any of the caring adults she met had even mentioned BPD, would she still be here? Luckily, she did not form habits of drugs, drinking, or cutting which are also part of criteria for BPD. She didn’t talk about how or why other young adults her age could and did succeed in school or college. She changed jobs frequently. She was admitted twice for inpatient mental health treatment with no results and no discussion with me by the doctors. They never asked me a thing. Why did several hospitals release her at a time when her volatility and fear prevented her from seeking support on her own? They weren't interested in my opinion or criteria that would have given them and Taylor help and hope for wellness. I felt so guilty for subjecting her to the horrid mental health services we received. She talked about the vulnerability and feelings of fear and outrage at being expected to change from her clothes (protection) into hospital clothes with cameras watching. Of course, I took care of that issue but in one instance, after she said she wanted to hurt herself (and didn't know why), we stayed in a hospital emergency ward for 9 hours only to be met by a psychiatrist who released her within a half hour, long after she calmed from the storm with not a word to or from me. I regret not doing more, saying more.

No one asked me if she expressed angry outbursts or crashed several cars, began and ended and began and ended friendships… or couldn’t manage the general education environment. No one asked about her picky and tricky eating habits.  I was not allowed to speak with doctors, even in the emergency room when she felt suicidal. She was 18 by then. She lost faith in the medical community, and I was helpless to find help for her as she finally refused any more questions, probing, or treatment that amounted to misdiagnosis after repeated and uncomfortable questioning that lasted for years. She allowed me to set up appointments with counselors and a new psychiatrist. Sometimes, she walked out or never showed up. One counselor advised that I should "kick her out if she doesn't stop disrespecting you." And a psychiatrist who had seen her said, "She did not suicide because of Borderline. They do not suicide. Only people with Bipolar suicide." I feel now that we were doomed to this fate. None of the doctors asked the criteria for Borderline. After the age of 18, they weren't even interested in my opinion. And the doctor who insisted that people with BPD should have known that 70% of people diagnosed with BPD attempt suicide and 10% of those succeed. It truly was a perfect storm.

A beautiful and charismatic girl, Taylor appeared to only suffer from anxiety. She raged and screamed at me. I knew that anger and rage can look like something it’s not. In fact, I tried all  her life to tell teachers, doctors, family, and friends that something was wrong and her behavior was not a reflection of my perfect girl. But, her flashy smile, charm and wit, her attention to the needs of others, and resilience to bounce back so quickly after a fit of rage confused everyone. I knew she suffered some of the time. She spent most of her time planning her next tattoo (she wore 9) or trip to Florida. She must have suffered in silence as so many people with BPD do.

In work, Taylor found purpose in serving others—literally. She became a server at a few local restaurants. Changing jobs frequently should have been a clue that something was amiss with her. In October, 2015 Taylor’s weight dropped as it had during stressful times in the past. She had been planning to attend a rigorous Veterinary Tech program after trying unsuccessfully to attend a community college twice. Even at the college level, anxiety destabilized Taylor. The lectures, people, books, lights...it was all too much.

But, she tried. She attended two classes, never to return and never to talk openly about how she felt. Should I have pushed the issue? I don’t know. By now, she was 22 and I knew better than to dissuade her from her goal of attending this new program. I hinted at the rigorous schedule and grueling hours but Taylor wanted to prove that she could do it. “If other people can do it who aren’t as smart as me, I can do it.” I knew it would be too much for her but I was her champion and met with the school alongside her, anyway. Even then, she didn’t discuss any fear or trepidation at the thought of school. I supported her and knew that if the veterinary tech program didn't succeed, she would have blamed herself. I felt helpless.

Beyond the drop in weight, Taylor broke off her most stable relationship with the love of her life in November, 2015. She started going out on the town later at night and then dated a troubled young man who emotionally abused her, something no man would have been able to do had she not been weakening in those last few months. By the 3^rd week of December, 2015 I admitted Taylor to an inpatient facility for a suicide attempt, one in which she confessed to me that only moments before she swallowed a “bottle of pills,” that she only did it because she was angry with the new love interest but was “fine, now.” The medication was for nausea but I knew I had to take Taylor to the emergency room. I told her that she simply could not swallow a bottle of pills and believe that I would let it go. We needed to make sure she would be okay. This was the beginning of the end. I wonder now if it was the right decision to take her to the hospital. Maybe without the diagnosis she would be here, maybe she would have allowed for support. Maybe I inadvertently helped seal her fate by forcing the issue at such a delicate time. I wanted this opportunity to take her once again, maybe a little by force, but with all of my heart and mind directed at receiving the support she so desperately needed.

At the hospital, Taylor raged as they stripped her of her phone and lifeline to this new boy, who constantly called her a whore, then broke up with her, then wanted her back in his life again and again. I texted him from the waiting room, shaky and scared. I asked that he break off the relationship until she stabilized. He agreed. Even then, I tried to help her return to her previous and stable relationship but it was too late. She made the choice to stay in a relationship that a few months earlier, she would never have tolerated. In the past, Taylor refused to accept abuse in this way. It was not part of her childhood or my life. She was obsessed with him and it was a warning.

Taylor refused to see me during the 3 days in which she was observed for suicidal behavior. Finally, though she was diagnosed properly: Borderline Personality Disorder. I had never heard of BPD after 22 years of searching. The doctor called me and he described the symptoms she displayed and criteria for diagnosis having never spoken with me. I felt it to be a blessing and a curse. He told me that there is no cure for Borderline; there is no medication. The doctor suggested a year of intensive treatment in Dialectic Behavioral Therapy before she would begin to feel better. I knew it sounded like a death sentence to her. I was not welcome at the center to discuss this with her because I “put her there,” away from her obsession.  After 22 years of struggle, we finally found the answer. And, the way in which it was conveyed ultimately added to her decision to end her life. She would never discuss it with me.

Taylor and lifelong friend Haley

The doctor delivered Taylor her diagnosis in the same words and in the same dry manner as he conveyed to me. A counseling visit each week and group therapy each week for a year? I knew she would not follow through; that she would be too embarrassed. She still refused to talk to me. I couldn't fathom how a doctor would deliver a serious, life-threatening diagnosis to a person who had no one there to support her in the news and hope for healing.

The new boy was back in her life and allowed had become a full-blown obsession of hers. They were back together when she was released from the mental health facility on December 23, 2016, 72 hours after she was admitted. About a year after her passing, one of Taylor's closest friends said that after the diagnosis, Taylor simply “deflated." She lost hope. The first time I knew of Borderline Personality Disorder was during that fateful stay. For the first time in her life, Taylor stayed with a friend on Christmas Eve, sure that we "hated her." I felt ecstatic when she stopped by our home to open gifts with her brother on Christmas day. 

Ariel, Taylor, and mom

On January 6, 2016 I left for Africa on a planned conservation trip. I thought it would be best for me to keep my arranged plan to travel to try to rebuild our broken relationship. I knew that I could sneak in some loving words when we spoke and that I may be able to convince Taylor to allow me to work with her, for her.

The boy, however, continued to taunt her and sent her GIF images of sexual acts, calling her names, breaking off the relationship, on and off it went. I sent her photos of animals and short texts of love and inspiration and sometimes just made small talk. I boldly offered to support her when I returned home. I posted photos, videos, and updates about my trip on social media and she shared my joy, saying she was proud of me. I knew that leaving would separate us enough to give her space and time to forgive me. I though it would allow us to rebuild our relationship that had always been so very close. Even her best friend said she was proud of me for going. As her mother, I feel as if I should have stayed with her.I had no idea about the boy's emotional abuse until Taylor was gone. 

After another threat of suicide on February 1^st, 2016 the boy broke off the relationship again with Taylor. Her phone reveals texts of fighting, as well as her desperate attempts and then ultimate success in finding and buying heroin for her to use to overdose. She rarely drank and had never used a hard drug. A photo on her phone reveals the two small pink pills. She told this boy about the pills. He demanded that she bring them to him immediately and he destroyed them. He did not call me to tell me about this cry for help. He threatened that he would tell me, took them away from her and her cry for help fell in shatters. After 22 years with my daughter, I knew that she wanted this boy to heed her cry, tell me what she just couldn't. Her lack of response to his threat of exposing her was her acquiescence for him to stand up for her, find her the deserved support he robbed her of. She wanted him to tell me. She was in trouble. I could have called her father or even the police just to keep her safe until I arrived home from Africa. In grief, we call that bargaining...what I should have done...

On February 2, 2016 Taylor and the boy continued to fight. By this time, Taylor was tired, confused, and unstable. She made a visit to her aunt and uncle's and to grandparents' home, her sanctuary. She acted grumpy, as was usual those days. Taylor showed no signs of trouble that day. She arrived home by 6:30pm. More fighting, more accusations. She continued to text with the boy and told him of her device she made to use to end her life. "It really hurts, just so you know," she said. "I found a wood pillar so I'm gravy," she said. She found the information she needed to end her life on the internet. The boy never called me or 911.

She called me at 8:30pm; Zambian time 4:30am. Surprisingly, I was awake and so excited to hear from her! I tried to answer my cell phone when she called but either she said nothing or I couldn’t hear due to poor cell service. I lost the call. I knew I could chat by the river before my final safari so I showered and called her. My call was answered, then disconnected. While in the shower, my phone chimed with a message from her, which I answered in text, without knowing she would never read it. To me, she wrote:

“It’s not your fault. You were the best mom you could have been. I love you and the person you are and always will be. You’ll be okay. Go do what you love and what I aspired to do. No matter what you hear this isn’t anyone’s fault but my own. I’m sick and wouldn’t get help. I love you forever.

You’ll always be the closest person to me.  I’m so sorry.”

Taylor took her life on February 2, 2016 at the age of 22. 70% of people diagnosed with Borderline Personality Disorder attempt suicide. 10% of those die by suicide.

Taylor and cousin TJ

If you know someone who is threatening suicide, please find immediate support. Be a good friend. Listen and hold your friend on the line until help arrives. If he/she has a plan, a time, a place, a method call 911 immediately, anonymously if you have to. If they speak of suicide at all, offer to help find resources and professionals. Listening and keeping someone on the phone can provide time for the episode to pass. Even if it does, a parent, guardian, or professional must be consulted. Even a single mention of suicide warrants immediate help from a professional.

I am updating this post in November, 2019, as we approach the 4th anniversary of Taylor passing. I feel madness still. I feel this pain to be relentless, tiring, hard. It's just hard to stop myself from questioning and being okay in the world without my daughter. I know for me, for a time, suicide seemed like it would stop the pain. I know Taylor suffered, I know it. I just thought there was hope. Borderline Personality Disorder confuses and increases fear, even instigates madness. I am still madly in love with my girl who no one mentions today. I loved her life for her overall. Taylor experienced love. Taylor IS love. 

If you are having suicidal thoughts, text HELLO to 741741 or call the National Suicide Hotline at 1-800-273-8255 or Google search National Suicide Hotline for online chat.