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.
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