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.