35 Years of Wedded Bliss

 On August 12, Mark and I celebrated 35 years of marriage. 35 years, wow, that just seems impossible to me. We were only 21 and 23 years old, when we decided to get married, a journey, that would last a lifetime. Before having kids, is tough to remember now, but we had six years, before we had our son. In those early years of marriage, we traveled a lot, seeing far away places, extravagantly, and camping too. Mark preformed in his band often, which brought together family and friends. His bands often played until the wee hours of the night. Then the next day would be lazy and quiet. We also saw a lot of local & nationally famous bands, music always being a passion. Mark used to golf, that’s tough to believe! I read countless books and learning things like cross stitch. Those early years were certainly charmed!

35 years later, I often reminisce about slower time in our life, before children. I feel like it was foundation building, having those years alone. It brought us together and made us closer. It gave us memories to look back upon, in the tougher days. 

When we were newly married, for our 35th anniversary, I may have imagined going on a big trip together. I may have thought we’d be well off and able to splurge on a fancy restaurant and night “on the town.” I may have imagined us giving each other extravagant gifts. 

None of that happened… We spent a quiet day together and we were grateful for that! 

A Little Discipline

 I’m often reminded of a comment someone once said about Mark & I, behind our backs ~ “All Teale needs is a little discipline.” 

It got me thinking, how many thought it was Mark & I? Teale is severely brain damaged with several psychiatric issues. Discipline? What does that even mean? If we hit her, yell at her, take away her favorite things, she would learn how to control her chemical & physical imbalances? 

It made me wonder why anyone who has watched Mark & I struggle, while Teale suffers, would or could, possibly blame us? Also, is it really Teale who has to conform? What if we accepted people where they are, instead of trying to make them into something they are not? Don’t get me wrong, I’m happy to have Teale more stable. But was her instability part of a plan to make us, who know her, more whole? Is she teaching us or are we teaching her? 

I’m just thinking out loud, but to go back to the original thought. I believe those who know & embrace Teale, have the chance to be better. I’m glad I never believed discipline was going to “fix her” because I think love, is what truly “fixed her.”

2024 Valentine’s Day, the conclusion

 I picked Teale up at Zumba, we spent a little time with her friends there. I couldn’t dawdle too much tough, traffic could be backed up at this time of day. We needed seats at the gig, so Teale could enjoy seeing her Dad play. 

Mark plays sax in four bands in the Rochester, NY area. If you have ever had the pleasure of seeing him play, you know why Teale and I enjoy going. Mark loves playing saxophone! He exudes joy on stage, and it is infectious. Mark is humble and comes from very talented musicians. His Mother and Father met on a gig, both sides deeply entrenched in music. The talent runs deep, each of his siblings and their children, all inherited the strong musical abilities and the support, it takes to pursue music. The only one without this God gifted musical ability, is our Teale, I believe it is deep inside her, but to be able to learn in a traditional way, is not. Her brain injury at birth is extensive, the fact that she is severely developmentally delayed, along with her physical limitations, well, it’s another tough loss, but she is great cheerleader and audience member for her ham filled family! Plus, occasionally, she will even play tambourine. 

When Teale was about the age of 16, I started taking her to Mark’s music gigs, instead of getting staff to be with her at home. It was a turning point in our lives. She was mostly, mentally stable, enough so, that I felt safe to be at Mark’s gigs with her. My fears in the past, had been, that if she raged at a gig, not only would that be awful in every way. It would also, be unfair to Mark, the audience who came to hear live music and the band members, he was playing with. 

You see, we just don’t know what will “set Teale off.” A stranger looking at her funny, someone accidentally bumping into her? Her mental stability, up to about this age, was very unpredictable. With the addition of an antipsychotic medication, she was more stable. We could predict her better, we felt more at ease and safe. These were gigantic changes in Mark and myself. Feelings of safety, those have come and gone over the years, with Teale’s mental illness, but, at about 16 years of age, she was in a good place. 

So, I started taking Teale as my date, to Mark’s bands. There would be many, very successful gigs. We would laugh with each other and the friends who, often joined us to see Mark play. The regulars or fans, have you may, would recognize Teale and visa, versa. Teale became a regular, at many repeat venues, seeing her Dad play all over the Rochester area. 

Teale would know who we might see at a gig and her joy when recognizing a familiar face, brought smiles to many. Teale has this completely contagious laughter and even as her Dad, blows his saxophone on stage, her laughter can fill a room. 

So after I pick up Teale, we drive, towards the gig, on that fateful, Valentine’s evening, I feel confident everything will go well. We arrive later than I have hoped. Parking is difficult, so, I go to the back, where the musicians park and go in. I would sneak in the back and hope I could find seats. 

The usual would happen when Teale and I walked in. She would first, look for her Dad! He would notice us and give us a roaring welcome. Once she got her bearings on which band it was, and making sure her Dad was there. Then, she would observe who else had come, and lastly, ask me, if I know any more friends joining us? 

That evening, after being greeted by her Mark and others friends, I found us seats, quickly, as the room was filling up. Teale was thrilled, a few friends were there, I would get her a soda and pizza from the bar. A treat, she doesn’t get often. We settled into our seats, pretty much, right in front of Mark. The dancing space, between us. I had warned Teale that she would need to come home with me. That there had been a lot of late nights and we would go home early. I explained that her Dad had to stay later, so she couldn’t drive home with him.

Teale was great, engaged, laughing, enjoying her Dad’s antics on stage. The band had the audience captivated. There were plenty of dancers, mostly swing dancers, which are so much for to watch. I am a terrible dancer, so I enjoy seeing people, who are not! 

Towards the end of the set, Teale starts to show some agitation, it makes me uncomfortable. When you have lived through as many rages as we have, you learn to see the signs in advance, if there are any. I’m not sure if she knew our evening out was coming to an end? Or if  I missed something else that had happened? I was hoping I could make it to the band’s break. Maybe if Teale got a little time in with Mark before we headed home, she be fine to leave. The last song before the break was raucous. Some of the band came out into the audience and marched through the crowd. Mark was one of them, blowing his sax as he wound through all the people. Teale has loved this part, so, I’m hopeful it will change the sour mood, I was detecting.

Mark stopped at Teale and sat on her lap, joking with her is a big part of our relationship. She has a great sense of humor. We try to make her life full of small moments of joy and laughter. We couldn’t give her the life she should’ve had, but, we could give her other gifts. 

Whatever was going on in her head that night, which we will never know, gave me a very uneasy feeling. I could see her mood go from questionable, to bad. A room of people and a bunch of them will want to talk to Mark. I start suggesting we just leave, maybe I can sneak her out the back door before it gets bad? Mark comes immediately over after the song ends, and he puts his sax down. That’s when she starts screaming. Oh my goodness, I think, we are in deep trouble. 

The many things that go through my head, in moments such as this. The blame I take, the could haves, should haves, rolling over and over in my mind. If only I hadn’t… Seriously, so stupid of me, she’s overtired, we should have stayed home.

Mark and I remain calm, we are a good team, but Teale is amping up. We’ve seen her go from 0-10 and, we’ve seen her, occasionally, calm herself, before it goes into a full, fledged, rage. 

Mark was talking her down. I was praying inside and hoping, I could just get out of there. Nothing was working well, his break almost over. She was not great, but, not horrible, he was getting pressure from the band to start the next set. I don’t think they knew what was going on. 

So, even though I had my coat on, I sat back down. Honestly, I have a million thoughts of what we tried, but even reliving a tiny piece of the story, is difficult. 

Writing releases, the biggest reason I write, is for me. To release a story, helps me to move forward. February was two months ago, and maybe, I’ve let go of much. But there are parts of that night, I still struggle with. 

I saw a glimmer of the memory, in Mark’s eyes, last Friday. He was playing with this same band, they were winding through the audience, he stopped and blew his horn near myself, Teale and Gwenn. I knew what was going through my head. I thought, I knew his thoughts, too. He wouldn’t dare sit on her! I’m sure we both went back to that dreadful night, at least for a moment, in time. Those connections are strong and only “we truly get it.” 

Mark thought I should stay, until he was done with the gig, and could help me. I was in fight or flight mode and wanted to flee. I was embarrassed, I was worn, I wanted to be at home, where I felt more safe and less judged. A rage at home is more predictable. A rage when we are out, there are way too many variables. Mark apologies to me, saying he has to get back on stage. I know this, I also know, I’m scared, and don’t want to be left vulnerable, and alone. 

No sooner is he up on stage, almost ready to go, when I take a sharp, left fist, to my right eye. My glasses, both protecting me, and jabbing into my face, cutting it. I’m trying to process what has just happened to me. When the second punch lands, just as hard in the same place. 

Mark has seen from the stage and jumps down. In this moment, I feel like I’m in a fishbowl. Who saw that, terrible interaction? If you were not aware of the situation up to this point, now, you surely must be? After all, Mark leapt, to my rescue.

This is the part of the story you may not understand. I am hurt, physically and emotionally, but stoic. If you hadn’t seen those blows to my face, you probably wondered why Mark frantically jumped off stage. A Dad’s wrath can be more effective, especially for Teale, who thinks her Dad, walks on water. This could go either way, she could “pull it together or completely lose control!” Whatever happens, I know, we are at the mercy of mental illness! Teale has the upper hand, she is in control, and has absolutely, no control, but no fault of her own! Anyone who thinks otherwise, has no idea…

I’ll spare you all the details, the short story is, Mark told Teale not to hit me. I sat there feeling, hurt, helpless, judged and mortified. Mark had to finish the gig, so he went back on stage. The dance floor quickly filled, a strange mix of joy, right between us, and Mark. 

All I could feel, was my own, intense fear. I had nowhere I could go. I was a sitting duck, not sure if I would be struck again. The final blow a doozy! Same as the first two, but with more power. This time I immediately tasted blood in my mouth. I was pretty sure it was dripping down my throat, inside my face, from my nose. Mark missed seeing this one, but people around me saw it. 

I knew they couldn’t understand my response, which is literally, no response. Not everybody knows Teale’s story. They don’t know the brain damage, that she suffered at birth. They don’t know how hard we have fought for her. They don’t know that this behavior is not often or her fault. She does the best she can, and so do we. 

I could feel the eyes on me. I could see some of them. I was quietly asked if I was OK, by a couple people. I felt tears well up in my eyes. I knew the tears were not because of the physical pain, which was sharp, no doubt, the tears were because I wondered how this would change Teale’s relationships with people who witnessed it.. 

The gig comes to an end. Hopefully Teale will leave with us easily, once she realizes, she won’t be missing anything. Mark gets off stage, sax packed up and ready to go. He brushes past people wanting to talk. We sneak out without incident. 

My eyes would sustain bruising, I had a cut on my eyebrow, that has left a scar, my face and my head hurt for days. All of the physical pain, was nothing, compared to the mental anguish, I felt. 

After a good nights sleep, I would have many conversations with Teale about what happened. I would try to teach through natural consequences. She would not be allowed to go to at least a few future gigs, but I would be sure, she knew, that I went to the gigs. I would need to reinforce why she wasn’t able to come with me. Teale learns quite slowly. It couldn’t be a lot of gigs, I needed to give her a chance to prove herself fairly quickly. 

There are many thoughts that go into these decisions and we get a lot wrong. I look back and know that I should not have taken her that night. I also think we try to learn from Teale and the experiences we live, both good and bad. We know she may rage at another gig. It’s not a done deal, when helping Teale to learn proper behavior, but, damn, she has come a long way!  

2024 Valentine’s Day

 It was February 14th, 2024. My 35th Anniversary of the day, Mark asked me to marry him. A gig on Valentine’s Day, was not my favorite. It was a Wednesday evening, and the night before had been Fat Tuesday. So, one of the band’s, Mark plays in, had a gig. This band plays a New Orleans style of music and the plan was to play a slightly belated Fat Tuesday. 

The weekend before had been a huge success for Teale. On Friday, Teale had gone to The Night to Shine Dance. Tim Tebow puts this dance on internationally. It is a beautiful mission of love, he and his wife do for people who are diagnosed with any kind of  disability. They are treated to a lovely dance and so much more, the details of the night are wonderful. Teale has loved this event and her bestie, Katie, went with her both last year and this year. 

They got ready at our house and then, afterwards, Katie spent the night. This year, the weekend had been especially fun, because, there was also a Valentine’s dance, on Saturday night. So, Teale’s bestie, was staying over for the entire weekend. The plan was for them to go to both dances. On top of that, I was taking them to a musical at Teale’s DayHab program. Teale’s staff (and others) put on The Greatest Showman. We had tickets for Saturday, afternoon, before the Valentine’s Dance. Both dances and the musical, went off without a hitch. Teale and Katie had a fantastic weekend together, seeing so many of their good friends at the events. 

It was also a “high” for Mark and I, to see Teale have such fun, in a community of her peers. Teale having friends has always been one of our most important goals, far above many of the typical goals. We have just wanted Teale to feel like she was part of a community and had friends, besides, us, her family. 

Late nights are not Teale’s normal routine, so I was thrilled when everything went so well. One of the medications she takes before bed, really knocks her out. It makes her so tired, that she needs, 12 hours of sleep, to really be rested. Teale getting enough sleep, is really important to keeping her mentally stable. We are very good at keeping a routine for Teale, when it comes to sleep. But, this weekend was so special, that we wanted to take the chance, of having her off routine, so she could experience the joy, of both these dances. 

Ironically, this was also Super Bowl weekend! After Katie had gone home, we were invited to my niece and nephew in-laws‘s house, for a Super Bowl/Birthday party. A third late night in a row, for Teale, could be disastrous. The plan was to drive separately, and I would bring Teale home early, to get to bed. Super Bowl does not mean nearly as much to me, as it does to Mark, so he would stay and enjoy the game with family. This night would go later than I should have let it. We were enjoying the family and Teale wasn’t acting tired. So, another late night would happen.

On Monday morning, I had decided to let her sleep, as long as she would, and then take her to her DayHab program myself. Sadly, she did not sleep in. Monday night we would finally get her to bed early! 

Tuesday night, would be later again, though. The Mighty Dunks, basketball league, was new for us. A basketball program, for people with disabilities. Teale loves going and seeing some old friends from her school, and the new friends, she is making. It goes into the evening, past her usual bedtime, but has been well worth the effort! After the weekend of 2 Dances, a musical and a party, it may have been a bad decision to go to basketball. 

Wednesday, Valentine’s Day, was the next day. Teale would get up early, excited for Valentine’s Day. She was taking treats to all of her friends at her DayHab program. Teale loves a holiday!!! After her program, our Respite staff, was picking her up, to take her to a Zumba class. Katie, goes to the Zumba class and it is another chance for them, to see each other. After Zumba, my plan was to pick Teale up and take her to Mark‘s gig. Because of all the late nights, I had planned on leaving during the band’s break. That way, I could get Teale in bed at a reasonable time and start getting her schedule, back on track. This would prove to be a huge mistake…

To be continued…  

The Lake House

 In the Spring of 2022, as we waited to get in with the new psychiatrist, our life spiraled. Teale’s moods were so unpredictable, that every aspect of our days were controlled by her. I was fearful of the explosive behavior, scared that by myself, I wouldn’t be able to stay safe. Teale’s weight had increased much also as the doctors added more medications, to try and stabilize her moods. She was so much bigger than I and, in a rage, ruthless. The PTSD was wrecking me, every time I heard a change in her voice, or saw it in her expressions, fear rose in me. I lived in constant uncertainty. On top of that, Mark was in a tough career at that time. He was trying to keep his head above water at work, while we were drowning at home. His job was always stressful, but had turned toxic, with a new regional manager being appointed. His office was struggling, most of the employees felt unappreciated, overwhelmed and deeply unhappy. The shift from a difficult job, to the feelings of complete despair, was felt throughout the office. Covid had been difficult and the hope that the new regional manager would help the office rise up, soon faded. As time passed, it became obvious that she would not help the office heal, but would create such division, frustration and fear, that many would leave. The cycle of employees leaving, meant overextended workers would never “catch up.” The ones that stayed, just got more to do, hiring replacements was tedious, and training them was slow. New hires quit often, with no ties to the job, they felt how unhealthy the work environment was, and left. Mark was in such an awful place, trying to lift me and help our family survive, while his work life just got worse. The increase of Teale’s explosive behavior was brutal at home. I was thoroughly exhausted mentally and physically. I was getting up with Teale, all hours of the night, her sleep sporadic, her mood manic. It all seemed hopeless and endless, making me question God and why our family was put through so much pain. Mark and my love was strong, but, without hope, I wasn’t sure if any of us would survive this. I knew I was struggling mentally, I knew my mental health was in danger of going so low, it might be tough to get me back. I had very little joy, and although I pretended to keep my head up, inside, it all hurt deeply. 

My Birthday would be the hope we needed. A girlfriend owned a house on a local lake that her family rented out for extra income. She hadn’t rented it out for a few days around my Birthday and offered it to Mark and I as a gift. The timing and the location perfect, it was close to Teale’s program, so we could drive her and have the days free. I’ve always had a tough time with the five years and this one was a big one. I was turning 55. At the lake, I could invite friends and and family to celebrate with me. We needed this break from our normal life. It wasn’t easy to plan and do it, but, in the end, this gift would change Teale’s sleep pattern, for the better. Suddenly, at the lake, she was sleeping all night. I had seen this before, an occasional trip, could trigger an interruption in bad habits at home. I had been questioning if Teale’s obsession with her iPad, was the cause of the sporadic sleep schedule? Sadly, deep fear, had paralyzed me from making a move forward on this. At this time in our life, we met weekly with Teale’s PCP and a psychologist, in her PCP office. To say they were worried about Mark and my mental health while dealing with Teale’s mental break, would be a gross understatement. Video conferencing weekly, to discuss Teale, had become a lifeline. We even had a meeting set up from the lake house. I shared my theory, that Teale was sleeping, because we had not brought her iPad with us. This theory had always been in the back of my mind on vacations where she slept in. Maybe, her getting up was because she wanted to get on her iPad? The problem was, I had no idea how to change this at home. I couldn’t image the rages, the bullying she would use to get her way at home, if, we somehow limited her iPad in the morning? The discussion was insightful with her doctors and with Mark. Mark had never seen the connection between us not bringing her iPad on vacations and Teale sleeping differently. Talking out that we had broken the cycle on this short trip, (because we didn’t have her iPad and she had slept all night) helped us to brainstorm a plan for home. After finishing the video chat with the doctors, Mark and I would talk incessantly. We would weigh the pros and cons, the risks and the advantages, if only we could develop a way, to stop this vicious cycle. Because I was the one that would get up with her, my fear was higher. If we took away the iPad and told her she couldn’t have it in the middle of the night, the rages could be very violent and dangerous. Her screaming or hurting me would make me want to give it to her, and then where would we be? If we were to do this, we would need to stick to it, not give in to her, no matter what. I knew this was our chance. Mark saw the benefits, I previously had had a tough time explaining it all to him. The lake house trip had changed her sleep cycle back to a normal, healthy schedule. Plus, I felt a million times better, because I was getting a normal night’s sleep too. I was able to stay up in the evenings with Mark, regaining some balance in my life. Teale went to bed early, and instead of me also going to bed exhausted, I was staying up with Mark. This special time together, had been a huge loss. For over a year and a half, Teale’s sleep schedule had been so messed up, I barely saw Mark after work. We ate dinner and then, both Teale and I, went to bed. Neither of us were able to stay awake in the evenings. I was missing my husband, but, to help us all, it had to be me that got up with Teale. Mark had to go to work, to care for us, financially. We couldn’t afford him not getting sleep. 

When we got home from the lake, on the very first night, Mark decided he was going to take the leap. We had thought out a plan to hide the iPad, and explain to Teale that she would not be allowed to use it before her program. It was terrifying, especially the first night. I wasn’t sure how I was going to get her to go back to bed and not attack me. It was the middle of the night and she thought she could just go on her iPad but I had to stick to the plan. There was no going back now…

I would love to report that it was easy, but it wasn’t. There were violent and scary nights, when she woke up and demanded her iPad. I was determined to stick to it, and after maybe just a week or so, we saw improvements. She started sleeping a normal schedule. She knew that we weren’t going to give her the iPad, if she woke up at 2 o’clock in the morning and there was really nothing to do, but go back to bed. There were kinks to work out. We had to figure out what the carrot was going to be on the weekends. No iPad until after the family grocery shopping was done on Saturday. No iPad, until after we went to church on Sunday. I was so proud of us. We had done it, together. The doctors had been no help. They just threw more medication at us, to try and get her to sleep longer. The medications had been a problem, many times they would snow her the next day. Her sleep wasn’t better on medication, and she was even more crabby. 

Mark and I had been strong throughout the process of not allowing Teale her iPad. It was very satisfying, seeing the changes helping to return her schedule to a normal one. Almost 2 years later, and we continue to use this system. Sometimes we have exceptions, but because she is used to the schedule as is, it doesn’t seem to throw her back into the old habits. 

One year and a half, of waking up as early as 1:00 AM, just so Teale could go on her iPad. It was such an unhealthy, stressful time. I am forever, grateful for my girlfriend, who gave us the break at the lake house, that ultimately changed everything. 

Months

Months of unsettled, mental illness, would plague Teale… Months of abuse, violence, fear for myself and Mark. Teale would control every decision and move we made in life. She would struggle in herself. Her sleep would be sporadic, exhausting both her and us as her caregivers. She would wake anytime between 1:00 AM and 4:00 AM. I would start to look at 4:00 AM as sleeping in. With her sleep so off, her moods just became more and more sporadic. The antipsychotic she was on, was no longer working to stabilize her mental illness. Her doctor knew nothing about how to help stabilize her. We were stuck in a horrible position. The psychiatrist we had been working with, in Teale’s doctor’s office, had moved on, and nobody had been hired. We were alone. Her doctor tried to support us, and tweak medication, but, because we had exhausted her current antipsychotic medication, there wasn’t anywhere to go. She had failed at many antipsychotics over the years. We needed, what they were referring to, as a last resort, antipsychotic. This medication was strictly controlled, and only certain psychiatrist had certifications to administer it. It could be deadly to people, because it would drop their white blood cell count very low. Blood draws would be required every week for six months, after she was at a therapeutic level. If her body was affected by the medication negatively, we could not continue. First, we need to get in with the psychiatrist that could prescribe it. That would take many months…

As we waited for paperwork to go through, Teale would become more and more unstable. She would be violent towards us, if something set her off. Her rage, intense and scary. I would be at risk constantly. There was no telling what would set her off, something simple, or unknown to Mark and I. The rages could result in hours of lost time, trying to get her back, or waiting her out. She not only would try to hurt us and cause damage anyway she could, but she also was biting and hitting herself. It was a heartbreaking, and terrifying, eight months. The psychiatrist had not gotten back to us, and we were stuck in a holding pattern. We sadly assumed, she wasn’t getting back to us because she did not have room for another patient. We would find out Teale’s Care Manager, who was supposed to submit specific documentation, had not done it. All of us endured months of agony, only to find out, after the Care Manager quit her job, that the application had not been submitted at all. Let me reiterate this, the Care Manager had done nothing! We would also find out she had not submitted the paperwork she needed to do for Teale to go to camp. Camp Haccamo is something Teale looks forward to every year! Us as a couple, and a family, look forward to the break from Teale’s care. For five nights, Teale goes to a rotary camp nearby, free of cost, thanks to donations. The camp was developed for children and adults with special needs, to have a typical overnight camp experience with peers of “like abilities.” The paperwork was long overdue, and I was devastated to learn she might not be able to go. How could somebody who acted like they cared about us, do such heinous things? The Care Manager knew we were suffering greatly, and needed to get in with the psychiatrist, to possibly, hopefully, stabilize Teale. I talked with her constantly about the agonizing wait, not knowing, that it was her, that was causing the delay. When our care manager quit, they had nobody to replace her, so the supervisor would contact me. This is how I found out, that the paperwork was not done. Apparently, she hadn’t done her job for many people. I would have to jump through hoops to catch up on the paperwork that Camp Haccamo would need, for Teale to go. I would beg for a spot for Teale at camp, even though the deadline had passed. Explaining how I thought our care manager had submitted the paperwork, I asked her to, they would take Teale. One hurdle cleared, but we would still need to submit paperwork to the Arc of Monroe. Teale desperately, needed to get an appointment with the psychiatrist, that was housed there. 

The wait would be months… 

Almond Milk, the final chapter

 Mark would tell me about the rage slowly, over several hours and several days. Details would hit him differently, and at moments, he didn’t expect. The kind people who would offer care and support would suddenly come to mind. There were many, friends and strangers offering to buy Teale something, I’m sure they felt paralyzed and hoped that could help. The pharmacy technician who sat with Teale and the other staff who checked in. Mark saw one woman from a far, making Mark tear up as he shared the story, she is a kind, gentle soul. Teale loved seeing her weekly. She didn’t come close, but caught Mark’s eye. I’m not sure if he was heartbroken for her, himself, or for Teale. Seeing Teale at her worst, can change a person’s perspective of her. It’s scary and sad. You worry if she’s ruined relationships when others see it. We know, she’s just in a bad moment. We know she’ll come back to us and eventually her joy will too. He tells me of the fear of having people walk by her, without concern for their own safety, and the police officer that came. I am thankful it was Mark and not me, with her. I know I would have had trouble sharing the right information, in a stressful situation, with a police officer. With Mark’s size and demeanor, plus his being a man, I’ve seen plenty of people give him more respect, than they give to me, when it comes to Teale’s rages. I’m smaller than her, and admittedly I suffer from PTSD when these rages kick in. I’m stoic on the outside, but inside, I’m terrified. My fear of a police officer getting involved, may have literally paralyzed me. I may have struggled to ask him to stay back and out of the situation. Teale can’t be reasoned with in a rage. It must just run the course. Our reactions to her, are very flat, we stay calm and stoic because we’ve learned this is the best and fastest way to “get her back.” Talking to her, reasoning, threatening, scolding, none of that work in the moment. To an outsider, it most likely looks like we are giving in, letting her get her way and act this way. Our skin is tough and for the most part, we try to not care what anyone thinks. It’s not an easy situation to be in. Our hearts are truly breaking when we see Teale in a rage, out of control and unable to calm. But, we’ve learned, we must just wait her out. I pray my way through, I’m pretty sure Mark does too. I also keep reminding myself this is not who she is and that none of it is her fault. Doctors messed up at her birth, she was breach, sat in meconium, had no pulse for 8 minutes when born and suffered severe brain damage. Her mood disorders are a direct result. Mark and I both believe she may have chosen this path, her soul came to us to teach. We have contradicting feelings on her birth. We know the doctors could have done an emergency cesarean section operation and she may have had a “normal life” and we believe her soul chose this journey for all of us. I believe in an afterlife, I believe in a God and I believe someday, I will know the truth to all this. It sustains me in the tough moments to not lash out at her, to stay calm, knowing it is not her fault and that God trusted me to love and care for her. I’m not perfect, I’ve lost it in moments of her mental breaks. Staying calm and not lashing out, is what helps my soul, the most. It gives me peace to know I’m loving her, through these most difficult moments. I process it all slowly, through writing and talking, after a rage has happened. Mark tends to go into himself, he will talk when asked but, he may not offer information, without encouragement. 

After this rage, we knew we needed help. We both knew it was a turning point in our lives and unless we changed the course, it was going to continue to get worse. 

Almond Milk, part three

 As I said before, my phone starts blowing up, we have many who know us, who know Teale, in our small community. People call, text, let me know Mark needs support. I’m on my way, when Mark, himself calls me. I tell him I’m coming and we decide I’ll pull up close, hopefully, he can get her out to me. He has others nearby, security of the store, a manager who knows him, but everyone is helpless. As I pull into the parking lot, next to his car, he’s walking out, Teale is calm, two other men are nearby. Mark and I can generally tell, if, she’s safe, if driving with her will be ok. Teale wants to get in my car. Mark still needs to pay for the groceries and I’m guessing apologize. We barely talk to each other, knowing, it will not be helpful in the moment. I’ll take Teale, he’ll deal with the staff. I won’t hear the whole story until much later, processing can be difficult for us, it knocks us emotionally, sometimes for several days. This one would be in the top ten, a twisted mental list, Mark and I have of the worst rages. It would unsettle our trust and make us fearful to be in public with Teale. This would be a turning point in changes that would need to happen to eventually improve her quality of life and ours. I drove the ten minutes home in silence. Knowing, all I wanted in this moment was to get her inside the safety of our home. At home, we can control the environment more so, keeping objects that could be thrown away from her. Often, if we can get her to the couch, in the living room, that is her calming place. She can get herself back to stable. She may yell, rock back and forth, but it’s not as scary as in public. In public, none of us are “in control.” The environment changes in public, the people are unpredictable. We’ve experienced too many who say hurtful things to us. We’ve had people who think it’s our fault, a disciplinary problem, we have, that could be solved. Brain damage is tricky, it’s unpredictable and tough to stabilize her mental health. Medications are processed differently in everyone, but Teale’s brain damage makes the process of knowing what, and how much, she needs, very specific to her alone. Mark, myself and Teale’s doctors need to read Teale, constantly, to make informed decisions about her care. Teale is on an antipsychotic medication, which has made our lives more stable. It has calmed Teale’s mood’s, giving her a better quality of life. But body chemistry changes, hormones, environment, what she chooses to eat or drink in a given day, how much sleep she gets, it all factors in. It’s complicated in a typical person who can communicate. Teale isn’t able to give us abstract thoughts. She can’t tell us when medication makes her feel good or bad. All the side effects of medications that are unseen, we have to be attuned to. Had the antipsychotic medication that had helped for years, run it’s course? 

Mark would slowly fill me in over several days. Processing takes time. You forget when in that kind of stress. The details get lost in your mind. We have to process together, what this all means for Teale. Would a medication change be coming. Would she need new doctors? The psychiatrist we had been working with had left the practice. At this time, we could only get a consultation with him and Teale’s PCP. If the antipsychotic medication had run the course, what was next? More questions, than answers would run through our heads. Mark and I process it all differently. Which is helpful in many ways. We both want the best for Teale, we both need peace and know living in fear is not an option. I can not live in unpredictably. Mark needs us all to be safe. 

Sadly, it will be many months, before we are on the road to a new plan that helps Teale. 

To be continued…

Almond Milk ~ part 2

 As usual, Teale would start to put the groceries on the conveyor belt. Mark joking every week that Teale was “his assistant.” He hadn’t figured out what had turned her mood to sour or how to get her out of it, then it happened. She picked up an Almond milk carton high above the conveyor belt and before Mark could stop it, she slammed it down so hard it exploded open! Almond milk sprayed all over the groceries, the woman ahead in line and her groceries, the impulse stuff in the aisle, everywhere! Then Teale started screaming at the top of her lungs and went to push over the cart of groceries, or anything she could get her hands on. Mark had to grab her to get her to a more empty space, so she couldn’t start throwing stuff at others. The only place to go was back, where people line up, to check out. I need to explain to those not familiar, this is Pittsford Wegmans, it is the mothership or all Wegmans, the one the owners visit regularly on Saturday mornings. They talk to Mark and Teale often, and Mark has shared some of Teale’s story with them. Saturday mornings are busy, it is crowded and loud. But, Mark would tell me later, if not for Teale’s screaming, you could hear a pin drop. The customers hushed, the screaming continued and Mark stood by watching Teale flail on the ground. She was out of control trying to hit, kick, throw things and the screaming, drew much attention. Her voice so loud people who were shopping that day and knew us, went to Mark to try to help. I started receiving texts and calls that Mark was in trouble at Wegmans. Fear shot through me, Daniel Prue, always in my mind and heart, I knew instinctively, this was a rage that could bring police. Thankful he was someplace where many knew and loved us. I prayed for Teale’s safety, as I rushed to get ready to go to Wegmans. People came to Mark, strangers, neighbors, friends of ours, employees who knew us, and even Teale’s Aunt, happened to be there, and recognized Teale’s voice. The person that really stood out, was a young pharmacy technician, named Jen. She had developed a love of Teale, we are at the pharmacy a lot. Teale struggles with so many physical and mental issues, medication has been a huge part of our lives with her. Jen came up to Mark and asked if she could sit with Teale. I am teary, just writing and remembering this. Here Teale is screaming, hitting and biting herself, wanting to hurt Mark, knock over or throw whatever she could and Jen asks Mark if she can sit with her? Mark and I both stay back when Teale is upset, we know we can be the target. Mark tells Jen that he can’t guarantee her safety, that Teale may strike out at her. She chooses to sit with Teale anyways. Teale doesn’t lash out at Jen. Jen quietly talks to Teale, her love and compassion in this moment a gift to all of us. A police officer does appear, Mark, unsure if he happened to be there, or if he was called. Mark is able to explain to him that Teale does not understand his authority and to please just let him handle the situation. The only way to get Teale through these brutal moments, is time and patience. You can’t force her to leave, or calm her with words. Time is the only thing that works, just waiting her out, until she comes back to us. In these moments Mark and I have learned to be calm, to not rock the boat, in any way. We’ve learned to stay back for our safety, to keep others away. But, Mark is in a crowded store, in a highly trafficked area. People should see the situation and avoid walking there, but many don’t. People stare, people judge, but our skin is tough. We’ve been hurt by many over the years, who don’t understand Teale has severe brain injury, from her birth. They don’t understand, it is by no fault of hers, or ours, that these moments occur, that control over her emotions is lost. 

To be continued…