Chaotic Mind

When I was a young mother, I went to school and studied psychology, social work, and child development. My intent was to become a social worker to help children. I never dreamed that my most practical use would be within the walls of my own home.

My daughter, Alicia, was born beautiful, healthy, seemingly flawless in every way. Her blonde curls framed her beautiful oval face that revealed eyes that mimicked the sky with their crystal blue color and small "cloud like" white dots. She was content to be held by anyone and didn't mind playing alone in her play pen. She was a good eater, never extremely fussy, kept on track or progressed faster in all of her developmental stages. For all who observed, a perfect baby.

She physically was very active. She crawled between 6 and 8 months, and then started walking at 9 months. She loved to dance around the house as a toddler, and by the time she was 4 she started posing for the camera like a little model. Her personality was playful and loud, yet she was never one to throw a tantrum.

Everything was progressing normally until the second grade. She began to lose focus, "zone out." She was diagnosed ADD which was a popular diagnosis of the times. Soon, it was obvious that information that she was receiving was not processing as it should. One of my most used examples for the doctors was an incident when I just simply asked her to go get my purse off my dresser. The first time I asked her to get my purse, she took a few steps, stopped, turned around, and asked me what I wanted her to get? The second time I repeated the request, verbatim, she turned around, took a few steps, stopped, turned and then asked me where it was. The third time I, again repeated the request verbatim, she turned around and walked straight to the kitchen.

The medical profession couldn't give me real answers. They just continued to blame it on Attention Deficit Disorder. As the next couple of years passed, she began to have difficulty socializing, and started having anxiety. Then she began to have physical issues. Her ankles seemed to dislocate without real cause. She started bruising extremely easy. She started having discoloring of her legs, including splotchy turtle shell type patterning in her skin. Her heart would race, and if she got ill her heart beat would be over 200 bpm.

My husband at the time could not handle her ever changing issues, was abusive with her, and at one point was to blame for a broken elbow when he lost his temper and yanked her arm in the process of putting her in time out. It wasn't his first loss of control with her. Over the years, we had spent time as a family with therapists to try to cope with growing family issues. Eventually my marriage ended when my daughter was 9.

Her issue continued to increase, but again, doctors could not give me any answers. After she passed out in my office, and was accused of being anorexic, I began looking for therapists. First the therapists wanted to say she had been molested as a young child, which she and I strongly denied. For some time, I wondered if my ex-husband had caused some sort of head trauma that had caused some brain damage, but there was no evidence of that. Then it was a stress disorder, and every time I thought I had answers her behaviors would evolve.

I continued to try to just be the best Mom for her I could. I worked to use behavioral therapy with her at home, put together written contracts that she could review regularly to help her to know what behaviors were accepted, and what consequences would be for behaviors not acceptable. Since I had another child in the home, I did contracts for both so that we had consistency for both.

In her 14 and 15 year, I met and married my husband who, understanding the full picture, still wanted to be a part of our family and be a father to my teens. His patience would be tested over the years, but he was and has always been the best addition to our family! During her 15th year, she challenged the family in some pretty extreme ways.

She began abusing her brother, her behaviors became more anti-social and, well, in her high school she began having sexual relations with boys in closets, on school grounds, skipping school to go smoke, drink, and have sex wherever she could. One year she attended school for the entire day only 18 days out of the entire school year. The rest of the days she would miss half or more of school. Therapy continued to be useless. Then at 17, she began cutting herself. We had to get even more clear on boundaries and behavioral modification, but as she grew older her actions became even more volatile.

We had to separate her from our home, but continued to provide for her every need. We thought we got some answers when her psychiatrist diagnosed her bi-polar, tried medications available at the time, and it caused severe issues with her irregular heart rhythms. In addition to the escalating behavioral issues, she began having severe migraines, delusional paranoid reactions to everyday challenges.

After a stint in a psych ward of the local hospital from a break down and self mutilation attempt, we learned that during some of her sex encounters she was allowing her partners to cut on her. Dimorphic mutilation had become a regular part of her life.

A new psychiatrist from the Mental Health Division of the hospital and county offered a different diagnosis. She diagnosed her with a combination of Bi-polar, Borderline Personality and Post Traumatic Stress. All of which my daughter refused to acknowledge or agree for treatment.

She began self medicating, with combinations of over the counter medications and alcohol, which increased her delusional and volatile behavior. When she was 20, she got pregnant.

Shortly into the pregnancy my husband and I took legal custody of her and her unborn child to protect them both from harm. During the time she lived with us, we got her on herbal and other holistic treatments, into therapy, again, this time trying a more "life coach" approach so that she would accept the treatments. She did well through the remainder of her pregnancy, and gave birth to a beautiful baby girl.

After the delivery, she had several physical setbacks, most of which caused by her heart issues. Had a few trips in and out of the hospital, but our holistic treatments and "life coach" therapy seemed to help. We had nearly a year of "normal" behavior. She started school, took a job, and made plans. All while living with us. Her brother was off to college and starting his life and we were in a position to give a lot of focus to her and her daughter.

Then the changes in behavior began. This time is was a quick downhill spiral from the year of normal to a quick dive into insanity. She accused me of trying to kill her. The police had to be called when she attacked me three times in a single day. She went to her work and told her work that she was being stalked. She was quickly losing touch with reality. I was talking to my husband about having her hospitalized again, when she ran out of the house screaming at the top of her lungs that we were trying to kill her. My husband ran after her, but she was gone.

Three weeks later, we heard from her, she sounded halfway normal, but was crying talking about her head hurting so bad she wanted to die. She had reached out to the father of her daughter and he was "helping" her. Which meant they were doing drugs together and she was self medicating to cope.

In the next few years we would spend countless hours and money not only trying to help her, but to fight off legal attacks by her, the baby's dad, and his family, all of which ultimately we won. Well, except for the fight to help her.

When she was 28, life regarding her took a drastic turn. She started having grand mal seizures. She spent a week in the hospital where she was given CT scans, and her heart was monitored. They did genetic testing. She was studied by a team of neurologists and psychologists. We were told that she was having nearly 100 focal seizures a day, and up to 5 grand mal seizures a week.

Then we got the results of all of the testing. She was diagnosed with Vascular and Hypermobile Ehlers Danlos, and she had POTS. In addition she had growths on the frontal lobe of her brain attached to the valves connecting the blood vessels in her brain. There was evidence of at least 2 brain bleeds.

POTS symptoms include just to name a few: Anxiety, Tachycardia, Near Syncope, Mood Disorders, Migraines, Fatigue, Weakness. Hypermobility causes easy dislocation and can even cause bones to break easily. The growths in her frontal lobe can affect behavioral development, social conditioning, and dozens of other anti-social behaviors.

Ultimately all the answers in the world were too little and too late, and did not help my daughter. A short 2 years after getting real answers, Alicia became one of those homeless statistics. Addicted and confused, she wandered the city. I kept track of her, would meet up with her, and even attempted to force her into treatments, with no success. Her alcohol consumption along with other street drugs kept her in a non-violent state of mind, but reality was not a part of her existence.

When I would find her, I would do what I could. Sometimes that meant calling an ambulance. Sometimes that meant carrying her to a hotel and making sure she got at least a bath, a clean set of clothes, and a hot meal. On two separate occasions I found her near death and got her treatment just enough until she would walk out of the hospital AMA.

Her Ehlers Danlos affected her skin, blood vessels, and joints drastically without proper care. Her skin would tear easily, she could twist her arm 360 degrees and pretzel herself easily, and she would rupture blood vessels all over her body. She suffered severe anxiety, mood disorders, and severe paranoia. Her migraines and seizures would drive her into dark areas under bridges for days.

At age 33, my daughter died in a hospice care facility from complications caused by her self medicating. When she passed away, she looked like a 70-year-old woman. Her personality was child-like in the end. Her heart was tender. She was loved. She was my child.