Check out the abridged version of this post on the Feeding Tube Awareness Foundation website, where I posted as Chief Communications Maman! It seems like such an appropriate thing to be writing about my daughter Esmé’s tubie for Valentine’s Day. You see, I love my girl’s tubie. It saved her life. But, I am not … Read More
Advocacy
Feeding Tube Awareness Week: Day 4
The topic for today, day four of Feeding Tube Awareness Week is:We can all use a little help: Friends and Family I feel lucky to write about this topic, because my closest loved ones have been such wonderful examples of how to be supportive of tube-feeding. So, I will be using their actions as the … Read More
Feeding Tube Awareness Week: Day 3
Today’s topic from Feeding Tube Awareness is “Been there, done that: Help for New Tubies” Getting a tube is an intensely personal decision. But, by the nature of tubes, it can be a decision that has to be made quickly…I remember that when I was struggling with the decision to place Esmé’s tube the nurses … Read More
Feeding Tube Awareness Week: Day 2
The topic from Feeding Tube Awareness Week Day 2 is: It Takes a Village: Tubie Resources and Support Really one of the most amazing parts of entering the world of tubies has been the tremendous support and knowledge within the community of tubies and their loved ones. So many of the parents of tubies are … Read More
Feeding Tube Awareness Week: Day 1
It is Feeding Tube Awareness Week! Last year I still felt like a bit of a new Tubie Mama. This year I am starting to feel like a veteran. I really do love Ezzy’s tube…but I haven’t always. It is quite amazing how much emotion a little tiny plastic device can inspire: fear, hope, frustration… … Read More
Feeding Tube Awareness Week
I am so very excited that Feeding Tube Awareness Week is here! I’m excited for a couple of reasons. First, I am thrilled to say that I am now one of the Mommas over at the Feeding Tube Awareness Foundation. I am so proud to be helping the work that FTA does in raising awareness … Read More
Esmé’s Feeding Tube Awareness Week Video
Here it is!
The Trojan Pony
We have been working on Esmé’s mobility for some time now. She can roll. She loves to roll. But lately she has been increasingly interested in being upright. The problem is that she is not strong enough to hold her own weight or coordinated enough to balance…but she is also TWO, and she does not … Read More
A day in the life
I haven’t decided if this is a boring idea for post yet…but let’s see. At the end of many of my days I wonder “what the hell happened to this day?” So, if I am wondering this, everyone else must wonder what the hell I do all day. Yesterday was a bit of an average … Read More
The Voice.
There is a blogger whose words were a huge inspiration for me to start writing like this. And yesterday I read another post of hers that floored me. The post, titled, “Waiting to Exhale” on her blog, What I Would Tell You, outlines how, as a mother of a medically fragile child, she finds herself holding … Read More