by Christy Smith
It was difficult for me to connect with other families at first. The truth is, there are three types of parents: "silent," "everything's so beautiful," and "matter of fact."
I wrote this in 2020, during our worst crisis, and it still resonates with me at times. Even though things have improved and my home is more peaceful, I continue to face similar challenges, as will many others.
I previously mentioned how I began to drown. Time passed, but I had been traumatized to the point where I lost track of it. My mind went numb as I went into survival mode. Even though I was sitting, I felt as if I could not stop moving. On the outside, I seemed to be doing well, but on the inside I was missing. Someone asked what I did for myself (self-care), and I replied, "With what time?" I absolutely hated when people would ask me this question. I always knew what would happen next. The worst thing you can say to someone who is fighting to save their child and is currently on survival mode. DO NOT DO IT. We know what comes next: "You just need a vacation". You will further push them away because in their eyes you don't hear them. Please, simply listen. They need to be heard. Support them.
This is not a topic that is discussed frequently enough. This is something that all mothers do, not just those who have children with special needs. Some of us have to fight harder than others. When we can not keep up, we mothers have a natural tendency to criticize ourselves. Every one of us will eventually crack. We are our harshest critics, and hiding anything that is not perfect is extremely detrimental to our mental health. We spend endless nights tossing and turning, stressing about our ever-expanding to-do lists, all our worries, and the demons we carry with us to bed after failing to complete everything we set out to do, all the "shoulda, coulda, woulda." This "mean face" carried over to the stupid cake we had for dessert. It wasn't until 2019/2020 that I broke. I felt entirely hopeless. I had always lived by the "fake it until I make it" motto. I was just hanging on strings. No one knew.
Some would call it "falling off the wagon," but I did not fall; rather, I stepped off. I would call it more procrastination than anything else, and I do not care what others think! It is very self-healing. It took some time for me, and I refer to it as a "mommy strike." I have taken a mental vacation, and it is as if I am just waking up and realizing how much time has passed; it is fine!
Today is a difficult day. Sometimes, no matter what you do as a mother, you can not make everything better. "Bipolar sucks!" Isaac screams as he's ripping at his clothes while his sensories are extra high today. His moods have fluctuated since yesterday. He is unable to find calm within his body. Fighting to control something inside his body that sometimes feels larger than he is. Today is a day of walking in circles and feeling extremely uneasy in his skin. I can only provide coping skills and give him space while he works through it. I am proud of how hard he works to push himself through this and come out the other side, time after time, as his illness threatens to take over my sweet, strong, brave little boy. I wish I could tell him how proud I am of him in a way he can understand. My heart is heavy today, and I am fighting back tears.
On May 24, 2022, another "troubled teen" opened fire at Uvalde Elementary School. I have been speechless and unable to regain my footing following this horrific event. It has had a deep impact on me because my child is currently manic and exhibits certain behaviors during his episodes. Thank goodness he is stable now and able to function, unlike before. I have so many thoughts about this that I have yet to put them into words. All I can do is cry, my heart is full of pain.
I would like to discuss a past event, September 2019, that aimed to educate and create an understanding of how to change the world around children who are emotionally, mentally, and behaviorally challenged.
We just returned from a two-day stay in Stillwater, Minnesota for our late 10-year anniversary trip. Mr. I was in a good space, allowing us to make quick plans and run for it, thanks to my amazing parents.
This guy has captured my heart. Before my son turned eight years old, it was clear that he had a life-altering brain disorder. Before my child started calling himself the Hulk, before my child began to give up on life... I was the mom that "knew of", but I was never THAT mom...I was the mother that knew of these disorders. I was the mother who was aware of mental health. I knew of children with a variety of illnesses. I was the mother who knew of children and young teenagers who had died by suicide. I knew of families who struggled with disabilities. I knew of parents who struggled with schools and IEPs. I was aware of many things. I never knew the truth about the fight until I became THAT mom. I never thought it would happen to me. I just didn't see it.
Hello everyone! I just wanted to let you know I am still here. Writing on my blog, I found that “cleaning my house” mentally was the most amazing feeling I've had in a very long time. So I decided to literally clean my home. I am decluttering the crazy chaos that I needed to let go of in order to get my life, family, and son back on track. My home was not a priority. My home was clean (enough), but it quickly became as cluttered and chaotic as my mental state. I used all of my energy fighting for change to improve Mr. I's and our family's lives, so my home, including myself, was put on hold until later. I have stepped outside of my comfort zone to process and hopefully teach or assist someone else with similar experiences or understanding.
Trauma never leaves you. It will resurface throughout life, accompanied by experiences known as triggers. A smell, touch, sound, location, and so on can all serve as triggers. In my situation, it's revisiting some of my son's hardest times with a brain disorder. My battle with PTSD has made my fight for my son so much harder. I have made significant progress in overcoming the emotional distress caused by my abusive partner, but the scars will remain with my children and me for the rest of our lives.
While shopping recently, I noticed a mother hurrying through the store. I could hear a small child crying his eyes out. He wanted this, and he wanted that. He was in a mood that could not be satisfied. As a mother, with a child that struggles to regulate, I knew that it didn't matter what he was given. He could not bring himself together, even while clutching the bag of M&Ms that his mother had frantically thrown into his hands. I recognize she was doing everything she could to temporarily restore order in the store. I could see her trying to keep cool in the heat, with all eyes on her. Likewise, I have been here far too many times. The M&Ms did not work, he did not calm down, and momma felt she would run out of options. I knew she was in a panic before her shopping came to an abrupt halt as she darted out the door.
I was just sitting here, absorbing how much I love myself and reflecting. These words would not have left my mouth a year ago. I was in a terrible place emotionally. I'm 40 today. I do feel it, but not because I feel old. Today, I feel the wisdom and success I have had throughout my life. I feel all the beauty I have. I mean deeper than physically, internally. My passion for others and the energy I have to keep pushing through even the toughest times... but also physically. It just seems physical doesn't matter to me as much anymore. I have lost and gained weight, and in the past, I was not satisfied with myself. I realized it did not matter what size I was. I was still me, and all I had to do was accept myself for who I am and stop trying to be someone else. I have accomplished that fully now. That feeling gives me a strong sense of completion... I have realized that you can not be truly happy until you stop attempting to be what you can not be or live a life you can not have in order to meet the expectations of others. I live with a child who has many needs that require my attention. I wasted far too much time trying to live what I imagined life would be like, rather than learning to love my life and the body I have given myself through my choices. I wish I could have told myself this at a younger age. I don't think I fully OWNED these words and absorbed how much I love that about me. It wasn't until the recent months of working with some amazing women through the county helping Mr. I become successful in school and home, that I opened my mind...To hear myself saying how I feel about living out loud.
As if getting to the clinic without having a meltdown was not difficult enough, if you live this life, you will understand what that means. For those who don't, it is a long, exhausting battle with words. You must creatively direct your child to get from point A to point B. You will either be late, miss it entirely, or if you are successful with your creativity, you go on as planned until the next cling up. This life is full of rescheduling and cancellations because your time is dictated by your child's ability to process and regulate what is going on at the moment.
I had a difficult time accepting help. I had been at a constant pace for so long that I did not know how to slow down until I crashed and burned emotionally. Furthermore, I would disconnect and isolate myself from the world of misunderstanding. It is exhausting to defend myself over and over again. It is almost as if I pulled up my big girl pants to conquer the world on my own without realizing it (building a wall of safety defense). There are other caregivers out there who do the same thing; we just hide. We simply do not discuss it with others, so we are unable to relate to one another. We have suffered silently.
Is it just me, or do I never feel rested when I am given a break by a respite, sitter, or other provider (which is rare and limited)? This life is very difficult for a caregiver's mental health. There is just so much overwhelming exhaustion from everything I do to hold up the fort while keeping my babies afloat. I feel like I am bobbing my head in and out of the water, just trying to get to the next day. I am in a constant battle to find the positive after days of exhausting energy. The constant search for resources and others who understand. Everything, including my worries about the future and the tension of the present, is drowning out my mind. Suddenly, time passes and I have no idea where the day went. I feel at times like I've gone numb.
