I am not sure what actually got me thinking about this, I think It was self regulation techniques.
I always sing ABCs on elevators, and every specialist for my son was always in a big city and had elevators and parking garages.
Then I started to think about those challenging parenting times, when I was exhausted and the thought of him going to school was anxiety ridden.
My job for so much of his young life was not only mom but nurse, unlike my other children as his parent I literally had to keep him alive. He ran on batteries (seriously AA) for a long time! I had to deliver medications, listen and respond to alarms, and make sure everyone knew how to administer emergency medication. Those were the days that blurred into one another, I was so overwhelmed all the time. It was exhausting switching hats and going form nurse to special education teacher and mom!
Something had to give! I remember feeling like I need a break. Looking back, no one handed me the break...so what did change?
Me. I started to let go of the idea that I could control everything. That I was solely responsible for keeping this child alive. Yes, I had to do my best and show up, but I didn't have to carry all the weight, especially for the outcome. My job was to focus one day at a time and enjoy that time. I had to stop the what ifs, planning for extreme situations that may or may not happen. I had to let go of the mistakes, I could allow myself to feel upset and own that and then I had to move on. Most of all I had to support myself. I was waiting for the universe to give me a break, to tell me what to do. Instead I had to recognize no one was going to fix this so I had to support myself.
I have many families that I work with who have children with medical needs. It is HARD, especially when they are "figuring" it out. The in between of no actual answers and you are just doing the best you can with "lets try this". In addition to being a mom and nurse now you are thrown into being an advocate...and a serious advocate. You are calling and following up with doctors and nurses, collecting data on the "new" methods of treatment, you are managing medications and times and all the things. Now add to that research and making sure the medical staff are in fact providing the best care! It is exhausting and frustrating and I SEE YOU!
I wish I could take away your tiredness, your frustration and for one day give you a solid answer that "worked", but I can't.
What I can do is offer some hope. That this time will pass. You are not alone. Taking care of yourself one tiny step at a time will help. You matter and ARE doing a great job.
So what can you do?
2. Take a few minutes to do something that brings you joy and don't feel bad, you deserve it!
3. Know you can not control the outcome
4. Start a mindful practice.
5. Understand your own sensory calming tools.
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