The other day I was ordering some items for a JHFH kid. We had bought them something to aid with feeding and offered to help them more. We got a big list in the mail of items recommended to help and as I ordered I found myself somewhat overwhelmed. So many of the items they were ordering where things that we used and tried with you. And when we were doing all of this with Linda, finding some of these things were not so easy. And now I could easily order them on amazon! The one that shook me up the most was this:
I am not sure why but as soon as I saw it I got a little teary. We had a pink one that we used with you. And Ethan sometimes wanted to use it and he would take it from you. It never worked overly well but it was one of those items that represented hope for me. And options. That somehow we would be able to keep feeding you by mouth no matter how hard it was sometimes. And I know it was hard sometimes and I still often wonder if we should have let up at some point and gone the way of the g-tube. I just always felt it was one of the only ways you had to control what was going on. And to express yourself. You certainly had your favorite meals and then there were some of my keto experiments that you clearly rejected. Who would have thought that a picture of that particular cup would evoke so much? But then again, it never ceases to amaze me how many moments in a day I still have my breath taken away. The other day I gasped out loud while washing the dishes and Ethan asked what was wrong. I said nothing. But really the sound of you crying when you broke your femur was ringing in my head. And I wish I could forget that sound and your expression and that horrible feeling of panic and uncertainty. But I hang on to that sound and all these other memories. And I am grateful that a silly picture of a cup can bring me back to my happiest days – the days when you were here.