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!