perpetual state

This is from the early days:

you say that i am in a perpetual state of upset and crisis.

are my feelings dirt? my child is sick. sicker than sick. you don't think that gives me cause to be in a perpetual state of upset? and if that were really true how do you think i would be able to do all that i do?

change his diapers clean up his spit-up dress him undress him keep him from eye poking keep him from biting cut his hair clip his fingernails shade his eyes from the sun walk around the house with him all day long dance with him make his meals feed him clean him up dress him give him medicines that you don't even know what they are teach him to go up and down stairs to hold a spoon to catch a ball to take off his socks to give things to me to stand up from a chair to not touch the stereo to not touch the wood stove to get into standing sooth him when he is crying make his doctor's appointments make sure he is getting proper nutrition and balance his diet contact insurances and all of his specialists take his temperature monitor his seizures keep track of his blood levels call the lab call the pediatrician call the dietitian call the neurologist call to get nurses train the nurses research epilepsy research eye specialists research eye surgery research seizure types research epilepsy centers research brain surgery research medicines research carnitine deficiency call the pharmacy reorder his medicines know his medicines know the side effects give him water and cover him at night love him with as much patience as i can.

i need compassion. i don’t see it. makes me want to stop trying but i won't because that is not who i am.

photo by Michael Kolster

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