Being full time caretakers for our son (in addition to working full time jobs) is something that we are grateful for in that we received the necessary training and support from medical staff, family, and friends to get from where we were to where we are today. While exhausting in the extreme, we can provide our son with needed medical care on a daily basis as well as be there for him in ways that only a parent can be – reassuring him that all of the scary things that are happening are actually good (trach care, physical therapy, new wheelchairs, etc.), customizing his equipment and daily routines to better fit his daily schedules, the list is endless.
That being said, it takes a lot out of us to put it lightly. Reilly needs someone with him 24/7 that is equipped and trained to deal with a medical emergency, so one (or both) of us are always “on” (ie. work mode vs home and relaxing). Date nights and social life are nonexistent (social distancing and isolation due to Covid was just more of the same for us), our to-do list is always growing as Reilly ages and matures, multiple alarms throughout the night to adjust his positioning…it is hard to really sum up just how much we have on our plates.
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