You might be viewed as a Rock Star for being able to handle a child who, in many ways, is like my Mighty Z—whatever your child’s diagnosis or even if you have no formal diagnosis. People who have typical kids look at you in awe and they should, because you are a Rock Star.
However, these people cannot see the real feelings swimming around in your head, or hear the not-so-good thoughts. The thoughts of, “I can’t do this anymore,” or, “I am so terrified of this syndrome.” Even the REALLY bad thoughts of wanting to run away. I remember driving home from the hospital when Mighty Z was just a baby and the thought, “just keep driving and never look back,” popped into my head. I am not proud of that, but it did flash through my mind. I quickly banished the thought, and felt guilty for thinking it. Other times I thought it would have been better if I hadn’t gotten pregnant, or maybe, it would have been for the best if my baby hadn’t made it.
Thoughts like these are the real thoughts that have gone through my head at different times in Mighty Z’s life. I think to myself that if anyone could look inside and see or hear the thoughts that have just popped into my head, they would know I am not a Rock Star.
I don’t think like that now, but when I was first introduced to this journey I balked. In my head, all I heard was, “I can’t, I can’t do this,” while everyone around me kept saying, ”Wow, you are so strong, you are so great, I could never do this, and you are such a Rock Star.” In many ways I wanted to scream that I am not great, strong, or a Rock Star! I am doing everything that I can just to survive the day!
I have made horrible decisions, and sometimes forgotten how to do simple stuff or just forgot to turn on a pulse ox machine. I have allowed doctors to do stuff to Mighty Z that I should never have allowed. I still think of the times I have allowed doctors to let her sleep off the ventilator, and yes, in my heart of hearts, I was hoping that she really would be fine.
These are the thoughts and feelings that I have felt. They are not very nice thoughts and definitely not Rock Star status thoughts and feelings, but there you have it. I guess I am just human at times.
Why I am I telling you this? Because we all can’t be Rock Stars all the time. Sure we can resuscitate our children, change a trach with the skill of a PICU nurse, tube feed our babies, rig up a device to let our babies have some sort of physical movement, change a colostomy bag, and strap on AFOs without blinking an eye. But that doesn’t stop the thoughts in our heads.
All we can do is realize we are not super human and can only do the best we can at the time. Love yourself, be kind to yourself and know you are a Rock Star.