The Caregiver

I have spoken with my fair share of caregivers at this point in our journey and every conversation goes pretty much the same. We dive into our child’s diagnosis, their struggles and our wishes for them and then end with us. The caregiver is usually last in every conversation, literally and figuratively.

Most of us, if not all of us, are so laser focused on those specialist appointments, therapy demands, new diagnosis updates and everything in between. We forget ourselves.

The term self care is thrown around all the time. Only self care demands a lot and sometimes between making that much needed appointment and getting your nails done the choice is a no brainer. The burden of asking someone to stay with your child knowing they might not be 100% comfortable with the complex demands of your child.

I have managed to multi task with JR but I also am being limited each day more and more as he becoming more aware and more mobile. However, I am always in emergency mode ready to take action at any mishap. I am always in this state prepared for any bad news. I learn to be this way since my husband began to have seizures a few years ago.

The caregiver, is still a complex human learning, messing up and making mistakes as they go. They look super human so you expect so much from them. People are stunned when we are rude or sad. You handle so much how can you be anything less than perfect all the time. There is an expectation there. I figure we would be super disappointed if Wonder Woman was real and we found out she was a total jerk because in her spare time she is just overwhelmed, overtired and her mind does not stop.

Caregivers are not perfect and as a matter a fact we are all very faulty. We are forgetful, we are late, we are messy and we are surviving. I am learning this too, I am learning to be more quiet and more understanding. I am trying to be more patient and empathetic to those not in the disability community. I do have to remind myself there are other people with other struggles and no struggle is less than the other.

Leaving this post with a very common cliche quote but one we need to remind ourselves of every single day.

“Be kind, for everyone you meet is fighting a battle you know nothing about”