Thursday, May 9, 2019


Last night our middle daughter was calling for Sam at bedtime because she was waiting for him to read her a book.  I was getting Sonzee's TPN supplies put away, giving her meds, and getting her ready for bed.  I let our daughter know he would be there in a minute.  During the time she was waiting, the other two elders called for him as well.  It doesn't make me angry that this has become the norm, it just is how it is.  But the moment flashed a memory in my mind of a time, that seems to be from a completely different life, but was just a few years ago.

There used to be a time that bedtime took hours because each child chose a minimum of 2 books and both Sam and I took turns going from bedroom to bedroom.  There was tickle time, laughter, talking, and books.  There was "Emmmmaaaa" being called and I was the one who cuddled next to each of them and endured the 2-hour long ordeal.  Sam and I joked about the length of time it took but also felt it was so ridiculous....I think about it now and cock my head to the side as the word perspective flashes brightly in my mind.

Since February 11, 2015, bedtime routine has never been the same.  Children certainly adapt to the situations they are presented, but it comes at a cost, and the price in this situation was their ability to rely on my presence.  In the beginning, it was hard on all of us, then at some point during all the hospitalizations, it became their norm, but for me, remains a constant heartache.  Each night when they ask for that extra kiss from Sam, for him to read the book, or for him to come back in, it is a reminder of all the nights I haven't (and won't) be there, and for the sacrifices that come living the medically complex life.

The Mighty Contributor

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