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.