Feeding Tube Awareness Week: Day 5

February 13, 2013Advocacy

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

Feeding Tube Awareness Week: Day 4

February 12, 2013Advocacy

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

February 12, 2013Advocacy

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

February 11, 2013Advocacy

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

February 11, 2013Advocacy

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

February 10, 2013Advocacy

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

The Trojan Pony

February 2, 2013Advocacy, Special Needs Child

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

January 25, 2013Advocacy, Special Needs Child

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.

January 8, 2013Advocacy, Special Needs Child

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