Evie the Extraordinary and Her Mommy: The Journey As We Go

I was reading Marie Kondo's Instagram site one day, and it asked people to comment on their home organization struggles.  I thought to myself "why not," and commented that I struggle with keeping my daughter's feeding tube and eating supplies organized on the kitchen counter. Marie Kondo is known internationally for her philosophy of tidying and organizing.  I was surprised to get a personal message from someone on her team, asking for my e-mail address so that they could better understand the situation.  I gave her my e-mail, and sent her a picture of the messy status of my kitchen counter.  Oil, Miralax, calorie supplement, cups and bottles galore, cube trays, chewing devices...etc = no joy on my kitchen counter She asked me a few clarifying questions, about whether the drying rack was for sterilized items, and other thoughtful questions, and then I got an e-mail that surprised me.  The team had been a little stumped on what advice to se...

Sometimes when I'm hooking up Evie's g-tube in the food court in the mall, I look around to see if anyone is watching.  I still brace myself when someone shows interest in what we're doing.  I have no idea what they will say or conclude, but I do my best to explain why she has a feeding tube in a practical way. The Feeding Tube Association just released a brochure that tells our friends and family how to be helpful to us.  I love their list of what is helpful and what is not so much, that I had to post it.  Here is the full brochure: http:// www.feedingtubeawareness.or g/ Family_and_Friend_Guide_to_ Tube_Feeding.pdf Evie's mommy's commentary in italics below ( my original g-tube entry is here ): What is Helpful. Listening. Parents who are just starting on this process have a lot on their mind. They have concerns and they may not know all the answers yet. When Evie just got her g-tube, we were having trouble figuring things out post-NICU stay, and answer...