Traveling with chronic complex care issues…?


Last year my husband took our 13 year old son on a one month trip. They drove from Chicago through Kansas, Arizona, California, Colorado, Wyoming, etc. Needless to say, my darling daughter and I did not go. Just to refrigerate her food for that kind of trip would be quite a daunting task. And feeding her through the g-tube on a long car drive is more than I want to do. It ceases to qualify as a vacation when it is more work than being at home!!!

I’ve been reading a book called “What About Me?” All about the life of a sibling of a child with special needs. Okay, did I need any more guilt? I think not.

Anyway, I want to make sure I am not surrendering unnecessarily (!) to separate lives for my kids, separate lives when it is a big event that is “too much” work for me, etc. So, figuring out when I must respect my limitations and when I can challenge them is the puzzle of the day. Sudoku is easier and preferable.

So the guys are talking about a trip out east this summer. Do I slow them down by going along? Will I wish I had stayed home if I go? Between g-tubes and food and laundry and oh by the way I hate camping so it cannot be that, and the ever increasing distance in developmental age between these two kids… arrgghhh is it even something worth considering? Do I give my son the impression that I always stay home with his sister and am not involved in his fun trips?

This is a hard one and I sense there is no clear answer. Time to get creative. I’ll keep you posted.

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