First of all…. Preparations for chronic medical care

So you’ve recently discovered you have a child with “special needs”?  That means you have special needs too.  

1.  Get a diary or notebook – take it everywhere.  Write down whatever the docs tell you (briefly) and whatever questions you have.  Include doctors’ names, phone numbers, etc. INVALUABLE! 

2.  Buy 3 tote bags (big) with zipper tops.   

  • Pack one for baby/child. Extra clothes, toys, blankie, etc. I have syringes and feeding tubes as well as a replacement g-tube in mine. 
  • Pack two for you.  
    • One for clothing etc. Buy an extra set of clothing or two for yourself if you need to, deodorant, extra hair dryer, shampoo, etc.  
    • One for pens, phone numbers, sudoku puzzles, a book that would be fun to read, tissue (the hospital ones are scratchy). 
  •  Then put a note inside each on top of packed items – a list of things  that aren’t already in there: your diary/journal.   This saves much anxiety and grief when you have to head out to the hospital.  Take a camera.
  • Keep these three tote bags hanging in a closet so they cannot be disassembled by other kids in your house. 

3.  As a matter of practicality, have extra bandaids in the house, also Tylenol, Ibuprofen, whatever you might need. I don’t use much of  that stuff, but when I have a headache I do not want to go looking for the Tylenol!  I bought an extra refrigerator and freezer for our garage so I could stock up on things used most often and not have to run to the store if I could avoid it. This was a luxury, but well worth it!  

4.  Be gentle with yourself and your spouse. Neither one of you knows it all.  Neither one of you knows what tomorrow will bring, but even if things aren’t rosy it will be easier if you are together!  

5.  Take a break whenever you can.  Find something that will make you laugh out loud.  Allow yourself to cry.  Don’t think into the future.  Focus on the day you are in…. the rest will show up without invitation!


3 thoughts on “First of all…. Preparations for chronic medical care

  1. Love the extra refrigerator! That is a really good point about planning ahead when you have the time so that things are easier when it’s hectic or overwhelming.

    Thanks for the great ideas, and for participating in Try This Tuesday!

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