Over the last several months I have been working to figure out what it means to be a mommy in charge. What it means to live a life that is not over run by a syndrome. What it looks like to find joy, even on the toughest days. If I truly think about it, I have been working on aligning my thoughts for the past several years, but it’s only been recently that I truly understood what direction I was aligning them to.
Throughout my first year of motherhood, and probably into the second, I allowed a syndrome to control our life. A syndrome that did not allow my son’s nasal passages to develop properly, which in turn created the need for a tracheostomy for his first 4 1/2 years of life. A syndrome that caused my son to produce excess secretions, which required frequent suctioning and 24/7 observation. A syndrome that did not allow for proper development of his inner ears, causing problems with balance and deafness. A syndrome that made so many things so difficult for my son such as moving from place to place, eating and drinking, and communicating.
This syndrome was running the show as our days were consumed with doctors, nurses, appointments, therapies, and specialists of all kinds. This syndrome was taking over my identity, leaving me not knowing who I was anymore. This syndrome was driving me to the point to where I even said out loud “I hate my life” and actually meant it. I hated having those thoughts. I loved my child so much, yet I hated our circumstances. I knew I needed to figure out how to change my thoughts so that I could truly enjoy this journey we are on despite all of the challenges we face.
Thinking about that time, about that version of myself, makes me so extremely sad. That is not how life has to be, no matter if a syndrome is a part of it or not. I did not want to hate life. I did not want to feel so defeated and depressed. I wanted to figure out a way to take charge of my thoughts and feelings as I navigated my motherhood journey of having a medically complex child.
I am sharing now because I know somewhere out there, there is a mother feeling these same thoughts in her own unique motherhood journey. I want her to know that she is not alone. I also want her to know that life doesn’t have to be that way.
This is very personal to me, and I have never shared these words before. I am sharing now because I know somewhere out there, there is a mother feeling these same thoughts in her own unique motherhood journey. I want her to know that she is not alone. I also want her to know that life doesn’t have to be that way.
There are so many things that are so far out of my control that life and this syndrome throws at us. This is why I work on the one thing I can control, and that is my thoughts.
Through the pandemic, I was reintroduced to my past self. I found myself feeling so stressed, overwhelmed, defeated, and in the stages of burn out as all the demands and responsibilities piled up on me. That is why I have come back to what it really means to be a mommy in charge over whatever circumstances we are facing. Through the last several weeks, I have been doing a lot of work on my mindset. I did not realize it at the time, but that is how I went from a syndrome controlling my life to me being the one who is in charge. There are so many things that are so far out of my control that life and this syndrome throws at us. This is why I work on the one thing I can control, and that is my thoughts.
If you are having difficulty with your circumstances, I encourage you to try this model that has helped me. I also encourage you to find someone you can talk to, and seek help when needed. I am not a therapist of any kind, but this has been a useful tool I have used in order to align my thoughts and helping me to be more in charge of my mind.
For example, if my thought is “I hate the trach,” I feel sadness and anger that our life isn’t how I imagined it would be. My action is to live wishing for the day that the trach can be removed, and my result is not truly enjoying the infant stage with my son. Once I decided to shift my thoughts, everything changed! When I began to direct my thoughts to “This trach is giving my child the ability to breathe,” I felt so grateful for the device that has allowed my child to thrive in his life. My actions are that I begin to take everything day by day without looking too far into the future, which gave me the results of enjoying our life exactly where we were at.
With the help of my coach and friend, I realized that my thoughts have impact on the results of whatever I am trying to achieve. This makes so much sense and seems so simple because it is, just that simple. Many times negative thoughts are lies we think up about ourselves. Doing the thought work and working on my mindset has helped me to find the joy in our days. It has helped me to become more in charge of my mind, which has helped me out of living each day in survival mode. Things can still be difficult and we definitely have our tough days, but focusing on my mindset has helped me react with more patience which leaves my whole family in a better space. I work daily on my mindset. This is not a one and done type of thing. Being aware of the negative thoughts and lies creeping in has allowed me to identify when I need to make changes to my thoughts. This awareness has brought me to the place of being more in charge of my mind.
Here are a few pictures to show you the joy we have in our life.
If this resonates with you, I would love to connect further! You can follow me on Instagram @mommy.in.charge. Please share and comment if you connected with this, it would mean the world to me!!
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mommyincharge 
Great post even I struggle as a charger if im having a bad pain day i will say i hate my life i hate this tube i hate my gut i hate charge also if we lose a charger i say i hate this thing but i then try think of the positives im still here i can get through this i have before xxx
What a great outlook. I hate the pain that this syndrome causes. But I am so incredibly thankful for my son and all those I have met because of this syndrome. Those with CHARGE are the strongest people I know!