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.
I became very good at leading everyone on to think I had it all together. Isn't that what we tend to do nowadays? For example, this is social media at its finest. You rarely ever see anyone airing out their dirty laundry. In this battle to figure out my child, I became used to fighting alone and staying bottled up. I couldn't admit I needed help. Of course, due to my son being a core topic due to disabilities, I also feared talking about it. What momma doesn't?! I felt shameful. How could I love/hate my life and my son? I do not hate my son, but I do despise the mountain we had to climb to get where we were. However, I do not always like him. Guess what. That is okay too. He doesn't always like me either.
I feared my differences from other mothers, but not in the same way. I am not hiding truths, seriousness, and fears. While I adore my child with my whole heart and he is a very beautiful soul, I am talking about the things most don't like to associate themselves with because of what these topics may bring. Sadly, my honesty has given me distance setting me apart from others speaking out or writing books because it's not all beautiful. I don't regret it. Many silent families need to know all the layers of the onion. I couldn't relate to anyone when I began my journey, because it's not all sunshine and rainbows. I want others to know that they're not alone in this journey. It's very rare to hear a caregiver speak about the dirty laundry AND the beauty. It's important to normalize both. Brain disorders and the autism spectrum are not always beautiful. It is chaotic, messy, happy, fearful, sad, lonely, and so much more.
This is the very toxic way we tend to get stuck in shame, denial, blame, guilt, hurt, and silence. We don't just have to face the world with our appearances, but also with our lives and family. You name it and we are already beating ourselves up. For instance, we caregivers shame ourselves if, for a brief moment, we find ourselves enjoying peace in our day going to work. This could be someone's best part of their day during a crisis. Heaven forbid we enjoy it. Guilt runs deep. We are all hiding behind something because we all face the standards of "not good enough". Especially in this generation where everyone is perfect online with perfect family photos, life status posts, filtered selfies, and all the 'life's perfect' videos everywhere you look. This is also where the cyber vultures hang out, looking for their next meal. I did not want to be the victim again. No one does, but discussing the ugly is the only way to effect genuine change. It makes you wonder what we are doing wrong in this world to keep going down the same paths. We as a society are all hiding behind our imperfections. The truth is, I sucked at being nice to myself.
At one point in my life, I had lost a lot of weight in a hurry. I dressed for the part, of "Perfect Mom". My weight was the only thing in my life I felt I had any sort of control over. Everything else was falling apart. Behind closed doors, I was a hot mess! I wore myself thin reading and studying my son's diagnosis like my life depended on it, and in a big way, it kind of did. His illness took over all of our lives, it controlled us, kept us quiet, left us isolated, and almost led us to divorce. There was no time out, no dating, and no conversations other than a continued replay of the same fights. The "what the heck are we going to do, I can't live this way anymore" fights. As parents, you tend to start playing a blame game with each other. You will find a lot of families stuck in this endless battle and the truth is no one is right. You have most likely already exhausted all your ideas and you're replaying the same battle again and again because what else is there to do? There is no "quick fix". Towards the end of our journey, we were close to living separately and dividing our family. I was my son's person. I would have to separate myself from my family to manage one child for the well-being and mental health of the rest of my children. I knew deep down I wasn't completely alone in this fight, but I feel like men tend to carry their worries differently. My husband was what appeared to me as shutting down and zoning out. He was in survival mode. I have always been the emotional one and I cry a lot, trying to talk about our situation made things worse. My husband became so deflated that talking about our problems and home life was exhausting and his mind needed that peace. We tried so hard to be on the same page, but it's hard to manage when you have no idea how to change the pattern. I see this now, but it was very complicated to understand at the time while I was feeling the loss of my whole life due to my son's disorders and the fight against the mental health system. When I needed support I felt like he checked out on me. Although we all have different ways of surviving, I recognize that now. These times were very hard on our marriage. How could they not be? No one knew.
I was drowning in schedules, appointments, and the demands of my child's needs. I missed out on the lives of our other children. My youngest is almost 9 and looking back at the time I don't remember when he grew up. I lost so much time. I tried to be a superhero and I sucked at it. There was no possible way, no matter how hard I tried, I couldn't keep up with every moment of all my children's lives, giving the one that required my undivided attention, and maintaining any kind of life myself.
I tried to be the mom who made cute little decorative foods or special treats to send to my children's class parties. I had good intentions. I always bought the ingredients, but I never could complete them. The same thing happened with Valentine's cards. I am sure I have unopened boxes somewhere in a drawer. I couldn't juggle it all. I made a lot of plans, but I rarely ever kept them. I always managed to make all the appointments required of me for the programs we began, but anything more was exhausting. I hated when teachers would send homework home because I couldn't manage home life let alone anyone else adding more chores to my list. I am known as a person with excuses. I am known for being a bailer. Then again, no one knew I was drowning. I eventually gave up because I was exhausted from trying to meet these expectations. I lost track of everything and started to drown. Nobody knew. I concealed our imperfect world so well that we suffered alone as a family. I could not ask for help because it would mean admitting I could not do it on my own. As a result, I am categorized as a failure. It was not pride, but rather shame and blame for setting unrealistic expectations for myself given the circumstances of my life. I was afraid of facing the vultures. Guess what: I was a vulture to myself. The truth is that special families do not live typical lives, and I am tired of trying to be perfect so that the rest of the world will like and accept us. I had exhausted myself. I had to learn to give myself grace and "knock it off," as my wonderful mentor advised me.
I have accepted that I am the perfect "imperfectly perfect" momma, and that is fine. My children will know how hard I tried. They are all aware of their mother's love for them. They do not care if I wear makeup or dress up. They know I am not giving up on them. They will remember the memories we made rather than the mess in our home. I have to give myself grace because, honestly, who is perfect?
It is okay not to be okay. It is okay not to be perfect all the time. It is acceptable to fail; it is "progress not perfection" that matters. If I could go back and give my younger self advice, I would say, "Give yourself grace; no one else is in your shoes. Knock it off!". You will never find peace within yourself unless you stop trying to live your life according to the expectations and standards of others. Take a deep breath in.