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… 

Almond Milk

 I barely remember the last time I wrote… So much has happened in our lives since. The ugliest Summer was last year, in 2022. Teale became very mentally unstable and the extreme violent behavior was back. We struggled with how to help her, knowing the antipsychotic medication she was on, was no longer effective. There was no room for an increase and because she had already failed so many medications, we were lost. Her primary care physician fought to help us, as we slowly drowned, in the despair. It was tough to get up everyday, knowing Teale may explode at any minute. Being bigger, stronger and completely unfiltered in her rages, Teale had me beat. I could not control her safely, I could not help her to calm. I was scared and basically living in PTSD all the time. Mark missed a lot of work to keep us all safe. There were many days we couldn’t send Teale to her dayhab, the safety of others was our priority. Mark and I always prefer her behaviors happen at home, with just us. The thought of Teale hurting others and also, the way others may respond to her in a rage, terrifying. When she’s in a rage, the first instinct of others may be to restrain, yet, often, we have found, if you can get her to a safe place, she will “come back” to us, in her own time. Restraint is not only difficult with such a large person, it is very dangerous. Sadly, individuals die from improper restraint. Mark and I trust each other to not hurt Teale, but it is impossible for us to trust anyone else. Ruthless, cunning, unfiltered are just a few adjectives I would use to describe her in a rage. She does not play fair! Teale will bite, kick, pinch, pull hair, scratch, throw anything she can and spit. In COVID times, her spitting became one of the worst things she could do in public. 

A mentally ill man in our community was restrained by police, with a “spit hood” on. His name was Daniel Prude and he died of  “complications of asphyxia, in the setting of physical restraint.” Daniel was in a mental break and the restraint that was done, was the cause of his death. Imagine how this incident has affected the community and people who care for a of a mentally ill person. It’s heartbreaking to me that all this man needed was compassion and care, that Daniel was suffering. Instead of recognizing that, power and pain was used on him to control. Mental health breaks, in public, are my biggest fear. At home, I know we have some level of control. In the public, people could overreact, police could be called, Teale could be restrained and put in a spit hood. Daniel Prude died, his death taught me that a mentally ill person is not treated with compassion. Daniel Prude should be alive, but fear and power killed him, instead of getting him the medical help he deserved. 

Teale, is a white female, always in the care of people who love her. This is the only thing, that gives me comfort, in the times she is mentally unstable. It also makes me hurt for Daniel’s family. They called the police for help, instead, Daniel died. I’m convinced his race was a factor, if you don’t know the whole story, Google it, it’s devastating. The loss of Daniel and all that lead up to his death, emphasizes the lack of understanding mental health. My biggest fears came true for Daniel Prude and his family. 

So, in one of Teale’s public rages, during this very unstable time, I can not deny, I was glad she was a white female. I was glad it was my husband with her. 

The rage was on a Saturday morning, in December. It was one of the first signs that things were going downhill for Teale. Her sleep had been completely off, she had been waking for the day, as early as 2am. This sleep pattern started in December 2020, we knew it was triggered by the addition of a medication her PCP believed would help her rising behaviors and anxiety. The advice we were given was that her body would get used to the medication and she would sleep normally again. We saw a little relief from the medication, so we persisted through. By December of 2021, Teale had not slept, the entire year, past 4am, except maybe a handful of times. I was the one getting up with her daily. Then, I would go to sleep as early as 7:30pm, if I had been up since 2am. It was a brutal stage, that lasted approximately a year and a half. Writing that baffles even myself, who lived through this. How could we persist a year and a half on a medication that caused insomnia. Well, honestly, I’m not sure. I do believe we had no other options at the time. We were waiting to get her into a new psychiatrist because her’s had left the PCP’s practice. I also believe there were thoughts she was “just in a bad pattern.” She’d come out of it. I know we tried sleep medications, we tweaked medications, we waited and we prayed. Sometimes in our life, it feels like it is Mark and I against the world. We feel alone, like no one else really understands and or believes the stage we are in. I believe in this, we felt that way. Getting into a new psychiatrist seemed impossible. The medication that was suggested, was difficult to get on. Teale had failed so many antipsychotic medications, that a last resort medication was being suggested. Our son, who is a nurse in psychiatric care, had seen this medication as a miracle for some. We were anxious to make the switch, but month’s would go by before we could see the new psychiatrist. 

The incident was at Wegmans. It was December of 2021. In the month of December, Teale dresses in Christmas clothes. It’s something fun we started several years ago, just the week before Christmas, but has expanded to the entire month, because her Christmas clothes collection continues to grow. Gifts given on her December 9th Birthday, have contained fun Christmas clothes. As the collection got bigger, I decided why not make December a fun month of all these clothes? 

Every Saturday morning Mark and Teale do the family grocery shopping. It is at the same location and usually about the same time. Teale and Mark are known there. They often make friends with other routine shoppers who they see every week and they have friendly relationships with staff. We’ve gotten Teale’s medication at the same Wegmans pharmacy for all of Teale’s life. The staff is pretty consistent and friendly. They help us through insurance glitches, doctors not responding to new prescription requests, etc. Mark is friendly, kind and patient as he helps Teale through grocery shopping, people notice this, and it attracts kindness from strangers. 

It’s a juggling act getting Teale through any public place. We have to be aware of everything going on around us. As an example, a young curious child staring at Teale, can throw her into a rage. She is very observant of other people’s behavior towards her. She watches everything and feels much. 

It was a normal Saturday morning, Teale dressed for Christmas and excited to show her friends at Wegmans her Christmas outfit. Somewhere around the back of the store, Mark saw and felt a shift in Teale’s behavior. He instinctively knew he need to get out of there. Teale can be impossible to get out of a public setting once her mood shifts, so, we play a bit of a song and dance to accomplish this. Careful to not escalate the situation, Mark said something about being done and headed to the cashiers. He has her help put groceries on the conveyor belt as he tries to talk her back to happiness. The thoughts going through his head, are to just get out of the store, before her simmering mood, blows. He’ll talk to her about fun things coming up or fun things that have passed, he just wants to find one thing that she will cling to and then turns her mood back to more stable. It doesn’t always work and this day, he would not get out safely. 

To be continued…. 

The Toilet part 2

 As the water rushed toward me, Teale stood in the bathroom, in shock. Water flooded around her, through the bathroom and out into the hallway. Mark went running to the main water line, I pushed past Teale to turn off the water to the toilet. Of course, the water in the tank, had to empty completely. The shock of what happened was enough to stop Teale’s bad mood in its tracks. So Mark and I worked to clean up, as fast as possible. Sadly, it went through the floor, to our master bathroom below. Our new Master bedroom and bathroom, only completed 6 months earlier, would also be damaged. Living with Teale can frustrate beyond words, but, both Mark and I are good at compartmentalizing. It’s her brain damage/mental instability that causes these rages and frustrations, it’s not her fault. We often go back to her birth, and how her brain damage could’ve been prevented. This may sound like we are stuck in the past, and not moving forward, but I think in some ways, it just helps us to deal with the present. None of this is Teale‘s fault. Doctors failed her and us. If she haven’t sat in Maconian for hours and there had been a emergency C-section, would she be okay today? I often pray in these moments of frustration. I pray for clarity, for peace, for calm, for Teale to feel loved, and respected. If I can get myself out of my head and my frustration, in the moment thinking about her, and how it must feel to be her, it helps me. It helps me to look beyond my anger, and pain, and to just focus on her being a child of God. 

Mark and I continue to clean up the mess, we are pretty good at this kind of thing, both grabbing fans, and the dehumidifier, trying to dry it all out fast is the key to not having lasting damage. 

Somehow, we also pull her and ourselves together. We get Teale ready and out the door for the van. Teale’s day program runs from about 8 AM pick up to 3 PM drop off. This time gives me the opportunity to do other things, besides care for Teale. 

With her out the door, I call our friend and handyman. He has worked with us for a few years now and has witnessed Teale in rages. He knows the power of her and how our life is often controlled by her moods. I explain what happened and that we’re going to need a new toilet. He comes over that day to remove the broken toilet, capping off the water lines. I’ve been wanting a new floor laid in this bathroom, and I actually already had the flooring bought. We discuss his putting the floor down, during this time that the toilet is removed already. It will delay the process of getting a toilet in, but in the long run, it will be worth it. He is a busy guy and can’t get to my job right away, but will be back later in the week. 

I’m gonna skip ahead here… He comes back and lays the new floor, which takes approximately a day. I’ve ordered a new toilet and pick that up. As the guys at the store, loaded it into my car, I hear what sounds like something broken. When Mark and I open the box at home and take a quick look, we don’t see anything wrong, so we just shut the box back up. This will come back to bite us…

The night after the floor has been installed, I get up to go to the bathroom about 3AM, and there is water, raining through my ceiling, again. I wake Mark and run upstairs to look, sure enough the capped off lines are leaking all over. The shut off valve is shot and I can’t turn it off. This time we have to turn off the main waterline to stop the leak. 

Mark and I go into clean up mode again hoping our ceiling isn’t further damaged. 

When our handyman returns the next morning to the news of what happened, he discovers there’s water under the new floor he had laid. It all needs to be pulled back up, to dry out completely. Plus, installing the new shut off valve’s isn’t something he’s comfortable doing, so a plumber has to be called in. More money, more time… Here we thought the toilet was going to be installed today, but instead, the flooring is pulled back up. Fans running to dry out underneath the vanity, don’t seem to be working so he drills holes through it to try and get some airflow going. The plumber comes, we have new shut off valves installed in both the upstairs bathroom, and in our powder room, as a preventative measure. The costs are adding up and I just keep telling myself, be grateful you can do all this, without too much hardship. 

The next day our handyman comes back to lay the new floor, again. Sadly, when he goes to put the new toilet in, it’s discovered, it really is broken. At this point I’m more mad at myself, for not going with my gut that I heard something broken. Back to Home Depot, I go, to return the broken toilet and get another. I’ve lost another day. It’s now the weekend and we still don’t have a toilet, in the upstairs, five days after the incident. 

The next Monday, the 2nd new toilet is finally installed. Our handyman needs to go back to a job he has abandoned, to fit us in, in this emergency. So he can’t do all the trimming out of the floor at this time, but he’ll be back. 

In the end the new flooring is nice, the bright side of this whole disaster. 

When I think about all the different things that have happened in rages. From broken car windshields, to a broken toilet, I am grateful Mark and I get through these crisis’ without it hurting our love for each other. The reality is, couples like us, often break up. The stress, and often, couples blame each other. When Teale was born, we were told the divorce rate was approximately 90%, when it comes to couple’s, of a child, with disabilities. Somehow that percentage, made us fight harder. I guess I’m grateful, that we’re both stubborn, and saw that statistic as a challenge. May love prevail and hope, always endure. 

The Toilet part 1

This took place on May 23rd.

 In general, I feel like I’m a hopeful person. I look for the good &/or the lesson in any situation. Most of the time, I can know the next day will be better, but yesterday I struggled with our life. Mark and I have been challenged a lot lately, there are a few different things that have really been tearing at our hearts. I’m sad, defeated feeling and questioning my faith. At times like this it is difficult to see the light at the end of the tunnel. Mark and I have always agreed on keeping Teale in our care, but lately I have questioned this more and more. 

Last week, very early in the morning or maybe it was more like the middle of the night? I guess I should share some background first. About a year and half ago, Teale stopped sleeping through until morning. Her internal clock was off, a new medication to help her mental instability, caused insomnia? Honestly, with Teale, it’s tough to say the what and why. So for about 18 months she’s been waking me anytime from 12am to 4:30am. It’s tough to even write this without questioning what I’m saying. The sleep deprivation has been so severe that I often question myself. It’s like living in a constant dream state. 

So, with that background, last week, one morning, I was up with her about 3am. She has this habit of picking her face. It’s something I’m constantly trying to help her to stop. It can get obsessive, if she has a pimple or something, it scars, she picks it to bleeding, it almost heals, she picks it again. That morning, she had a scab that was on its way to healing. I was hopeful and grateful it was was almost healed. Then she did it again, picked the scab. It was bleeding pretty heavily, so she got a tissue in the bathroom and came back to the couch. I was in a chair nearby and got up to see her face. I said to her ~ “Teale let me see.” I wanted to see if it was bleeding badly and try to help. Immediately she attacked me. Instantly taking me down, scratching my face, pulling my hair, she had me trapped by gripping my hair in her hand. I couldn’t get her to release. I didn’t have my cell to call for help, Mark was downstairs, far enough away, sleeping soundly. As she was ripping hair from my head, my face buried into her arm, my only defense, biting her to get her to release. It worked, she released, but then it was still a battle. Me just trying to stay safe, her trying to hurt me, throw, knock over, break, anything she could. She’s without filter in these rages. Just attacking in anyway she can. Somehow in the mist of it all, I was able to grab my cell, then getting her in a position where I had the upper hand, I called Mark’s cell. As soon as he answered I said ~ “Help me, help me, help me!” He was upstairs in a flash and took over. Waiting out these rages is our only method. But, depending on if she’s attacking, it can be even more brutal to do this. Sometimes we need to keep her, our selves and the house safe. In those times, we are generally have to hold her, as best we can. This has become increasingly difficult. Her size is the biggest issue for me, but also that she is ruthless. As I said, Mark took over, it was only about 4:15am, which meant we had plenty of recovery time before her van came for program. The exhaustion is brutal, I’m missing life at night, when I often go to bed right after dinner. I’m not sure how Teale is doing it. So that’s an illustration of how things can go terribly wrong… 

Monday was another awful morning. We are also stuck in this cycle of Teale wanting to see a doctor. She insists on something being wrong and to pacify her, Mark would often tell her whatever she wanted. Things like, she would see a dr next week, or she would get a brace or a cast soon. It may sound strange, but imagine living in it. Teale often bullies and controls us by the threat of a rage. Somehow, pacifying her, hoping she would move on without all Hell breaking loose, often seems easier. Well, I could never verbalize well why I thought the pacifying was actually just prolonging our torture. Then we started working with a counselor who specializes in working with people who are diagnosed with intellectual disabilities. I tried, with her, to explain my concern, it clicked and we understood each other. The empty promises used to work when she was younger, but now it exasperates her obsessions. She gets stuck in a vicious cycle. Well, Mark finally got it too! It took him a bit longer to buy into “the lying was creating more anxiety.” But explaining it in different ways help him to get “because what he told her, would never come true” it made her not trust and have worse anxiety. The only way to explain how he fell into this trap, is to understand living with a constant master bully! Teale has nothing more to do than to keep at us until she gets what she wants. She can say over and over again that she wants to see the doctor and eventually, Mark would say something like, 2 weeks from tomorrow… Again, without living in it, you might judge and think you would do it differently. Believe me, I know I used to think I could “fix Teale.” She’s come a long way and yes, much is better, but we often, still hang on by the skin of our teeth! 

So, back to Monday morning, Mark was really trying to stick to the plan of not pacifying with empty promises. Teale was amped up because she wasn’t getting the answers she wanted. A bit of a rage, throwing her breakfast, we waited it out, she had to pick up what she threw. She wasn’t completely settled but Mark thought she was calm enough to push forward on getting ready for her DayHab program. He took her to the bathroom and shortly after, that’s when I heard him scream -“SHIT, SHE BROKE THE TOILET….” Water rushing into the hallway, I knew he meant broke, as in shattered the porcelain tank. 

To be continued… 

Saint Patrick’s Day

 Last night Mark and I attended a band performance. It was in a small room in a library. The libraries in our area often host music groups. This one was Irish music in honor of St Patrick’s Day. Most of the attendees were older folks and, so were the band members. When we walked in, with Teale in tow, it was obviously an audience who wanted silence, to listen to the music. It wasn’t really what I expected, I’m not sure I would have taken Teale, if I knew the set up. A small room with chairs spaced wide and an audience with a sea of white haired people. We were obviously different. Teale has a certain presence that is sometimes difficult to contain. She can be loud, joyful and honest. I knew it wasn’t what she expected as we walked in. When we told her we were going to see a friend play music, she was excited. We often take her to see bands. She probably expected a bar, or a restaurant though. She loves going to a place to get a drink or food and hang with our friends to see a band. Usually she is seeing her Dad perform, but sometimes we go see other local bands with Teale. As we walked in last night I wondered how she’d do. I even considered leaving. Teale doesn’t know how to whisper and the silence was obviously of concern. We walked in anyhow, and went to seats at the back. As Teale walked to her seat, she tripped over a person’s feet, that was an auspicious beginning. I was a tad on edge as people stared. The music was fun, but the audience didn’t match the joy, they seemed serious, like you might expect when watching an orchestra performance. If you have ever heard Teale’s laugh, it can fill a room. As Mark moved to the music, Teale would start to laugh, but because her laughter is so unfiltered and loud, people looked at us with obvious curiosity, or maybe, it was disgust, so I shushed Teale. I wasn’t sure what to do, I wanted to see our friend’s perform, but it was tough to have a silent audience, in such happy music. Well, we stayed, but the whole time I worried about Teale’s voice booming in the silence. She did ok, actually she did well, if you ask me. Although, with the annoyed looks from some of the people around us, I’m not sure all would agree. At the end of the performance, Teale, Mark and I talked to the band. Teale wanted to meet my friend in the band. As we talked, I was struck by Teale’s demeanor, she loves people, meeting new people, seeing old friends, it doesn’t matter, she just wants to be included. Her joy could have filled the room during the music, but I had to squelch it, to fit in with the audience. That struck me as kind of sad. I thought about how much more fun it would have been, both for the band and the audience, had the room been filled with laughter and joy! There just wasn’t a feeling of acceptance of the unexpected. Families with young children and special needs, like us, may have tried to come to these performances that the library hosts. But maybe they felt the same disapproval, and hadn’t come back? I guess I’m frustrated because music at a library should be an inclusive event, but it felt like we shouldn’t be there. As we drove home, Mark and I talked how the evening wasn’t what we expected. Then Teale started cranking Christmas music, so we laughed and sang along to “It’s the Most Wonderful Time of the Year,” life is funny. 

Happy Saint Patrick’s Day! 

Empathy

 I didn’t know much about all the things we have encountered, before becoming Teale’s parent’s. 

The diagnosis of Cerebral Palsy was “just” the beginning… When the behaviors started, that’s when our lives and we, were really changed. 

No matter how much I know, that her rages are not a product of our parenting, the judgement from others, who don’t walk this road, hurts my heart. 

Rages are a product of multiple things, combined or separate; brain damage, mood disorder, mental illness, Intellectual Disability, exhaustion, or physical pain, are only a few. 

On December 11th, Mark posted on Facebook about a spectacular rage. (post is below) …In the comments on that post, there was a great deal of empathy. I believe the more that people learn, through sharing of these stories, the more they come to realize there are no simple solutions.  

But I also realized there will always be people who just don’t want to have to witness Teale’s suffering and what we live on a regular basis. I’m sure there are some who wish we would keep her shut away, so they don’t have to sit in their uncomfortableness of seeing Teale unregulated. 

Unfortunately, I still can’t put my thoughts about this,  into words, that speak of what my heart feels, but I’ll try. I’ve had, for lack of a better word, an “awakening,” on this. It wasn’t like a switch, it was more like a slow burn…..

Here goes it;

Witnessing Teale’s suffering via a rage, truly sitting in how uncomfortable it makes each of us feel. In those terrible moments, what is she teaching us about ourselves and about others? Do you believe she has every right to feel and express herself or do you wish to not watch? Sitting in that, and honestly, exploring our feelings, gives us a chance at a true, deep and sincere love of all people. It is uncomfortable, but Teale has worth. Her worth in our life is what makes Mark and I persevere. That doesn’t make us super heroes, it just means she has taught us, probably one of the most important lessons in life; empathy.  

Mark’s Facebook Post ~ 

Life is funny. I had a very memorable experience at Wegmans today with Teale that will not soon be forgotten. She is legally blind and deaf, has epilepsy, cerebral palsy, GI issues and an IQ a hair over 50, but by far, the most difficult thing about her is her behaviors. If I could change one thing, it would be to stop the rages. 

Some of you know that Teale and I have been shopping at Wegmans on Saturday mornings for at least 15 years. It's one of our special together times. When we walk in, we're greeted in a similar way to Norm walking into Cheers. Teale looks forward to seeing her friends. 

But this morning, somewhere about the dairy section at the back of the store, I sensed something was wrong. After a couple of minutes of trying to figure her mood out, I decided it was best to check out and head home. 

A nice guy who had arrived at one of wide lanes before me smiled and said "go ahead". I was grateful. There was a woman pretty close to finishing up ahead of us in line. I knew Teale was off, but I really thought she was going to be able to pull through. Boy was I wrong. 

She always likes to put the groceries on the conveyor belt. I often jokingly refer to her as "my assistant" during checkout. Today, she put 2 half-gallons of ice cream on the belt, then as I was standing about 4 feet away, she picked up a half-gallon of almond milk, lifted it high above her head, and slammed it down onto the belt. It exploded all over the place, including on the woman in front of us, and her groceries. 

I'm going to condense the next 30 minutes, but it was incredible. Teale went into a huge rage. She started trying to throw our groceries, and tried to tip over our cart. When I went to stop her, she hit me, and bit me. After a minute or so of struggling, she eventually threw herself on the ground, screaming at the top of her lungs and biting herself. 

You know, we're alright, but as I sit here 8 hours later, I'm not sure I'll ever want to take Teale back there. I wanted to say that the Wegmans staff, the police officer who showed up to help, a couple of strangers who offered to buy Teale a milk and our groceries, were wonderful and very understanding. 

One of our dear neighbors, Teale's auntie, and several of Teale's "Wegmans friends" came over to help. Special thanks to Janice for calling Ellie, and to one of Teale's friends who works in the pharmacy named Jen. Jen probably spent about 20 minutes with us. Jen is wonderful; I mean there were dozens and dozens of people watching us, watching Teale scream, yell, hit, and Jen just stood and offered support, and eventually got down on the floor next to Teale. I told her that I couldn't promise that Teale wouldn't hit her, and she didn't flinch. Jen walked with us to the door. 

When we got outside, Ellie had arrived. Teale jumped in her car and I turned to talk to the police officer and the Wegmans managers. They had my groceries. I said, kind of awkwardly, "well, I'm, of course, sorry guys. I'll go in a pay for the groceries." Well, the manager said, "I talked to Dan, (he's the store manager, very nice guy) and he said you're all set." When I got home and told Ellie she said "wish you had an expensive rib roast in the cart". A little gallows humor. 

It was a pretty traumatic experience, but I did want to tell the story as so many people came to our aid and were understanding of our situation. There's a lot of good people in the world.

23 Birthdays

The week of Teale’s birth seems to put me in a funk. Grief… How I wish I could just be done with it. I’m not. 

If I had insisted she be born asap via cesarean, would she be fine? I’ve said it all, it hurts, then it passes and creeps back up on me again. Twenty three, how has it been 23 years, since the night, that changed everything? 

In her 23 years, Teale has taught me much about people. Being her Mom puts me in the unique position of seeing the hearts of others, through her eyes. When I’m out with her, I can quickly read who is comfortable and who is not. The respect others show my daughter, can make or break, my desire, to get to know you. She’s literally a barometer of a compassionate heart. I have learned to trust her, but I have also learned, people can “come around.” Teale can warm a heart, I thought was cold. She can teach compassion, care and mutual respect. Having Teale in your life, is seeing the world through a pure heart. She doesn’t discriminate by looks, age, education or status, she is genuine in her response to others. I believe Teale can read uncertainty and fear in others. She knows she is different from typical 23 year olds. Her differences, made by God, are perfection. 

When Teale is happy, there is no greater joy. So as 23 approaches, may I be able to just celebrate the woman Teale has become. Happy Birthday to my wonderful daughter, you are so very loved. 

Spiritually Comes in All Forms

 When it comes to my personal spiritual journey, I can honestly say, it’s been much like a roller coaster ride. There have been times of extreme lows when I’ve questioned everything. Times I’ve been angry and even hated God for the mass inequities. I’ve lived in the age old, “there can’t be a God, with all this suffering.” 

I believe questioning is not only common to get to a higher understanding, but also, needed. Personally, I believe in an afterlife. I believe our souls are having a human experience and I don’t think this is or has been our only time here. I am sure each of us are here to learn from and to teach other souls. There are some souls who see the world with a deeper understanding than others. I believe in the concept of “old soul.” An old soul has lived many lessons and are at a higher awareness. If open to their lessons, they draw you in. There’s a connection your soul craves and a peace you immediately feel from these people. 

In Covid, I decided to pursue my lifelong interest in mediumship and all the wonders surrounding it. I first completed my energy wellness certification. Learning about the energy within the body and how we have the capability to heal. I have embraced my own abilities to move energy to areas of pain, and how that helps to heal. The intuition I receive, as I help others to heal themselves has come naturally to me. I believe I was ready to take on this concept, so it was natural and easy. I’ve learned so much about myself, humankind and the powers that God has given each of us. 

My psychic medium certification came next. I am a student medium who is learning how to quiet my mind and tune into the energies around me. The spirits talk and I can see them in my minds eye and in my surroundings. As I learn to hone this more, it’s the journey that brought here, that is so important to me. I’m 54 years old and in my lifetime, I have experienced much when it comes to spirits, but it took me until now to really understand those experiences. Energy is all around us, we are just energy and that is what is left behind when we pass. Tuning into the energy of the earth is a “skill” anyone can learn. 

I understand that some believe this is something we should not delve into. To them, it is wrong in some way and against the teachings of God. For me, the simplicity of “all of us are energy,” has been a spiritual awakening. I feel closer to God, as I understand this more deeply. 

I believe my youngest daughter brought me to this place. We started to learn more as we built a deeper understanding together through classes at a place that has become a “second home” to me.

Tarot is another experience I have learned from. Gwenn and I had taken classes, but it wasn’t until we started attending a “practice class” once a month, that it all started to click. We probably had no business attending that class, but the teacher was kind and patient. As I learned more about intuition and tarot, the connections came together. Being in the company of others who want to understand, helps me to build on, and trust my intuition more. 

The multiple ways I have chosen to learn more about this “secret world,” has helped me to simplify it all. I am amazed by the knowledge I have experienced. The journey is still new, but it has been eye opening. To be in the company of other’s who have an interest in the spirits that surround us, helps me to feel more at peace. I do not feel as alone, in how I have experienced life. There is no coincidence in this world. All the people we encounter are meant to be in our path. We learn from all experiences and the choices we make. Our souls crave what we need to learn, and for me, this was a path I finally turned down. This was something my soul found peace and comfort in. I am grateful for the people I have found, and the opportunity I have had to learn. But, I now know, it is not a coincidence, I discovered “my people.” Grateful for their beliefs, and for their deeper level of understanding, that I craved. It has brought me a peace and joy, I didn’t even know, I was missing. Thank you to all of you at The Purple Door, a place where I found peace, understanding and acceptance.  

Caregiver

Apparently November is National Caregivers Month. I was trying to figure out what this is to me. I decided that in order to do that, I needed to write. 

Caregiving is everyday. It’s not a job, Mark or I walk away from at the end of our shift. “Caregiving” sounds wrong somehow. I’m struggling to understand and put into words why I feel this though.

Since COVID, when people ask me what I do, I often say “I lost my job in COVID.” The truth is, my job got more challenging in COVID. I was home 24/7 with very little outside support. Teale and I barely left the safety of our own home. I had to fill her long days with activities and purpose. 

Parenting changes as Teale grows. We work and hope for more independence, all the while, knowing independence is really just a dream. The grief, I’ve often talked about experiencing, is never ending. Maybe the real reason is because the end of caregiving will only come in death. That realization probably shocks others, but, saying it out loud is liberating. It is something that Mark and I keep deep inside, because admitting it hurts too much. Death is something we fear when it comes to our unique families. There is the fear of our spouse dying and being alone in “this.” There is the fear of our child dying and our never recovering. 

Death will be the only way we will “retire” from our job. Whether it is our own death or the early death of Teale, death is the only way we will stop caregiving. So, is caregiving the right word to describe what Mark and I do? 

For us, it’s truly our life. It permeates every conversation, every moment. To be my friend, you must understand this and be tolerant of my mind constantly circling back to Teale. Teale’s care is ingrained in both our souls. Teale, we never get a complete break from, because even in breaks, our hearts are with her and our minds worry. 

So, somehow calling us caregivers feels demeaning to both us and to Teale. She’s not in my care. She is a complete person, our daughter, who we love and who we are always there for. I think that is what most call parenthood? 

It’s the History We Share

 Sometimes I wonder how I got so lucky. 🍀 But our love isn’t just luck, we both work hard at “us.” ❤️ We both respect and care for each other. If either of us was passionate about anything, we would move mountains for it to happen for the other. 

After a beautiful Wedding weekend for my niece, I find myself reflecting on Mark & I, our own beginnings, and the fresh, fun of new love. What a special time in any relationship that is, when you are out to conquer the world together. But now is what I truly love, the deep history and profound love that has grown between us. 

I do not believe marriage can be left to chance. 

One of my most favorite compliments about my marriage, was said by Emily, the bride. 

She once told me, “You guys are great together, but I feel like you are both ok & would be ok without each other too. You both have people and hobbies outside each other.” 

I have reflected on this much. She’s not wrong, we obviously love each other and enjoy each other’s company, but we both have lives outside each other also. 

Another compliment I reflect on much was said by a close friend, “You don’t sweat the small stuff, and pick on each other for every little thing.” That is true. At some point we both found respect for each other was far more important than anything else. 

I don’t believe Marriage has one or two  secret ingredients. I do believe you BOTH have to want it, for it to work. I believe we have worked to keep our friendship and to grow it together. I know we have worked to stay in love. And maybe most importantly, we have respect & trust for each other. 

I believe marriage is work, I believe it has blah times and elated times. I realize even when I think someone’s marriage looks easy from the outside, I don’t know the whole story. 

I know I appreciate Mark and anything we’ve been through to get here, has been worth it. We’ve shared a lot of ups and downs together & often I joke, no one else would want us. Our life isn’t easy. But really, it is the history, we have, that I know can’t be shared, by anyone else, and that has built “us,” mistakes and all.

Dr Dave

 I haven’t completely processed this, but we are officially done at Pittsford Pediatrics. To say we were well cared for there, would be a gross understatement.

We started with Dr Matteo Lopreiato in 1995, when I was pregnant with Beau. He soon would be referred to as Dr Matt. His demeanor was exactly what I liked, straightforward and honest. Beau’s birth would be difficult, Dr Matt would hold my hand through the worry of him being born blue and in the NICU for a week. Our first few years with Beau were riddled with worry, ear infections and strep throat seemed to be way too often. A constant ball of energy, Beau would keep us on our toes. Dr Matt was sometimes brutally honest. He would tell us things we probably didn’t want to hear about our parenting style. Not so gently correcting us. 

Soon Teale was on her way, the worry during her pregnancy was often too much for me. Dr Matt could talk me down, in a different way from Mark. The birth more complicated than anyone expected. Dr Matt sat in my hospital room and gave us the facts. I, apparently not ready for all the information he was throwing at me, fell asleep. Mark and I still talk about how I fell asleep while Dr Matt talked. After Teale’s two months in the NICU, the next few years with him would be constant. Teale would be seen by several specialists and Dr Matt very often. He would help keep things “real.” Interpreting what they all said and managing her care. 

I would soon be pregnant with Gwenn. Dr Matt would call me before announcing his leaving the Rochester area to move back home (CT) with his family. I was heartbroken, how would I ever find another Dr Matt? He encouraged me to stay with the young doctor he had hand selected to take over for him. 

When I met this doctor, I remember thinking he was as young as Doogie Howser. Younger than Mark and I, there was no way he’d understand all we’ve been through with Dr Matt. Starting over was painful. I had to explain much of our children’s history, but, I could tell this doctor was genuine. He was invested in giving us the best care. He did something I had found many doctors had not, he actually read Teale’s back history charts. Educating himself on her, so I didn’t have to relive every painful moment, while repeating her history. Dr Dave Topa would be an excellent replacement, his new eyes and a new demeanor, I would grow to fully trust and count on. I remember one time, in one of our many times of crisis, I told him, he was our number one. He was the first person after Mark and I, who truly got us and what we have lived through. He understood and cared about our children, but our relationship went far deeper than that. He truly cared about Mark and I. Our well being was taken into account too. Dr Dave would listen to our fears, our pain, our worries. He would manage care between several doctors, he would advocate on Teale’s behalf and he would interpret when needed. Teale would monopolize our relationship with Dr Dave, but he was good at making us focus on each of our children individually. Our relationship hit a higher level the year Teale stopped regulating body temperature. Her temperature running at approximately 99.7-101.7 for months. We would run all sorts of tests, see specialist, the infectious disease team would see her, nothing would be found. Dr Dave would go to bat for us with the school district that she could be at school. Our having her home for an extended time, would have mentally fried us. He was sure whatever it was, it wasn’t contagious. We would learn individuals with brain injury could stop regulating body temperature. He didn’t take this change lightly though, we were to report her temperature 3X a day. To do this more efficiently, I texted him the information to his personal cell. He had given me his number years before and I had been careful not to abuse this. Back then unlimited texting was not a normal part of cell plans. When he told me he changed his cell plan to accommodate us, well, I was impressed. Teale’s temperature regulating would eventually return to normal, but educational advocacy would continue. Dr Dave would sit in on many school district meetings with us. He would help us fight for Holy Childhood and for Teale to get all she needed and deserved in life. Dr Dave would be harsh, when he felt he needed. In one instance, he would insist we hospitalize Teale in the inpatient psychiatric unit because Teale had stopped sleeping and Mark and I were completely depleted. Dr Dave saw us through the worst times of our lives. He saw us cry, too many times to count. He helped figure out the cocktail of medications to cure seizures, to regulate moods, to stop the decline of CKD, to regulate her thyroid as it was being attacked by her body and more. Dr Dave was there when Teale collapsed in his office, her heartbeat plummeted and she was grey. Dave stayed calm, while I cried and my favorite nurse comforted me. That nurse passed away suddenly years later. I attended her funeral, feeling a deep loss for a woman who showed us much compassion and love. Also, I can not fail to mention Dr Dave’s wife. She was never far from my thoughts when Dave called or texted or met me at the office on “off hours.” I would often tell him to apologize to her for me. 

Walking away last week, after handling in my release for Gwenn to see an adult doctor, was surreal. 1995-2021 we got to know the staff and they knew us. I could call and most knew my voice. Most knew if I was calling I needed to be heard. 

Gwenn was ready for a female adult doctor, I’m just not sure I was ready to say goodbye to Pittsford Pediatrics. Thank you to everyone there. May you know how very much we counted on you, and Dr Dave, to get us through some of the toughest times of our life. I can not imagine our lives with out your care. May God Bless you, Dr Dave, and may you continue to be there as a friend, to our family. 

P.S. the reason we chose Pittsford Pediatrics was because Mark had also gone there as a child

32

 8/12/89-8/12/21

32 years of marriage…

Thirty two things I like about you & us;

1) your ability to take a bad situation and make the most of it

2) you’re cute/handsome 

3) you’re musical abilities 

4) how I can always ask you how to spell just about anything 

5) how humble you are

6) how incredibly patient you are, especially with me

7) the fact that you make my coffee every night before you go to bed, even though you don’t drink it

8) how you still open car doors for me

9) the love you show to to our cats

10) the way you pretend to be interested in my flower gardens and plants, when I’m pretty sure I’m boring you

11) how you still call me stunning and the most beautiful woman in the room, all the time

12) TGWTB

13) that you are level headed and without drama

14) how much you gush when talking about our “kids”

15) the many nicknames you have created for those you love

16) your commitment to practicing sax

17) our twisted humor in tough times 

18) how I know you are loyal, sincere and honest, without question ~ always

19) how much you care about others

20) how kind you are to me and all people 

21) how much fun we have together 

22) how you won’t walk ahead of me and always open doors for me

23) that you barely ever swear

24) that you appreciate my supporting/coming to your gigs and tell me so, often

26) your crooked smile

27) that you appreciate my ability to fix things 

28) that we have a strong partnership and share life’s challenges and the many chores 

29) how you compliment my cooking all the time

30) that you will always make sacrifices for the kids and myself 

31) how you take care of the grocery shopping, knowing I hate it

32) that we are here, at thirty two years of marriage, together & still liking each other  

I love you Big Red ~ Happy Anniversary!