The big kids are off at camp, little brother is on a walk with his babysitter, Sonzee is in her P Pod, Sam is in Phoenix, and I just finished vacuuming and doing a couple of loads of laundry. The last 24 hours have been a complete whirlwind of experiences and emotions, scratch that, the last 5 days. I feel like that is synonymous with life in general. We spend all this time anticipating and preparing for a wedding, a family celebration, a big event in general and then when it happens some things go as planned, others don't, but after it is over you just want to plop onto a fluffy piece of furniture, let out an exasperated sigh and reflect on what just occurred.
Since 2016 when Sonzee received her first intestinal feeding tube we always had steps in place for what to do if the tube came out. The first summer in NY with the NJ tube was so scary because it had just been placed, she was fresh off a 28 day hospitalization that had included TPN and left her stomach unable to be used, but at that time we were not even fully aware of the extent of her GI issues. It was all new to us and we had limited experience with intestinal feeds in general. We thankfully never needed the tube replaced during that summer, but we had our backup plan in place; to go to the hospital we initially attempted to go to this past Friday. Every summer since, that was the plan on record, and every year we skirted by with no tube issues. Thankfully all of the other summer hiccups had been easily handled at the local regional hospital or the urgent care clinic. I suppose "luck" eventually runs out, and maybe that was why my gut was nagging at me as summer 2019 approached.
Until yesterday I looked at the summer as a sort of escape, a place for us to go as a family and reset so we could take on the next school year and 11 months in general until we could again escape. What is something that I have known since the beginning of life with Sonzee but for some reason always need some sort of harsh reminder is that there is no escape. There is no putting a medically complex life on hold. The challenges are always there, they will always be there, it doesn't matter that you planned to leave them back home, miles away, as if they didn't exist. The only difference is that you have an extremely long yet amazingly beautiful view as you drive to attempt to sort through your emotions, to reflect on everything that is occurring, and to realize there is no way to plan a reset button.