Why Respite Is Not as Easy When You Parent a Child With a Disability

As a parent of a child with a disability, it’s normal to feel the need to take a break — just as it is for any parent.

There are times I’ve been with my son for such long stretches of time, stuck in a hospital room for days or weeks on end, or home with him while sick for a long duration, that I’ve lacked fresh air for days on end. When he’s having a difficult time, overall not feeling well, or even in a clingy and loving mood, sometimes I long for a simple separation, even if only for five minutes in a different part of the house — or outside in the fresh air.

I utilize my job as respite. Is that allowed? It is for me.

When a total care child encompasses every waking, and at times, sleeping moment; filled with medication preps, scheduled dosings, nausea watch, personal care, nose wipes, worries of impending illness, feeding preps, tube feedings, oral feedings, calls to doctors, supply counts and reorders, medication refills… and that doesn’t even include my own self-care, care towards my other children and husband, taking responsibility for our home and pets — respite is what I need most.

Then, why is it so difficult? Why was separation a whirlwind of panic when I crave it so often? Something so simple as a bus ride on a school field trip set me into a spiral of anxiety. Is it because I wasn’t on the bus, part of the environment, all eyes on my son forever more? Why is the idea of another planned field trip, a long ride on a bus, strapped safely in his wheelchair, a day away from him where he’ll be cared for by a nurse and watched over by a paraprofessional, off the books? How can I crave respite so badly but shut down when the opportunity arises?

I can not control anything relating to my son if I’m not there. Could I if I were? Probably not.

I can manage and adapt but there is no guarantee for a single minute of his day in regards to his health, routine, or general well-being. If I’m not there, what if…

This is a loss of control I just cannot accept yet. It’s a work in progress.