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


January 29, 2013Special Needs Child 1 Comment

You know what? Fuck milestones. Yeah, I said it: Fuck milestones. Seriously, don’t people have anything better to talk about than when their kid held up their head, rolled, walked, whatever? WHO in the hell cares? I mean sure, it is beautiful and wonderful to celebrate our children achieving things. Three cheers that little Jimmy … 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

Big Girls

January 21, 2013Special Needs Child 2 Comments

While visiting our Children’s hospital last week we met a little girl who really really touched me. This child has a rare genetic mutation that causes a number of developmental delays. She is six years-old, has limited communication skills, and uses a wheelchair for mobility. After speaking with her and her mother, it struck me … 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

It’s been awhile (again)

January 2, 2013

Yeah, so it has been awhile. I would like to say that it was just the chaos of the holidays that held me back from posting…but really it has been more than that. I think I have been spinning my tires. We have been in somewhat of a holding pattern here. Esmé’s seizures have been somewhat at … Read More

Weight Loss

December 9, 2012Uncategorized

I need to lose some weight. Really. That baby weight never fully went away…and whether it is the fact that I am not chasing after Ezzy, or because I am a stress-case so much of the time, I am not really sure. But the fact remains: I need to get in better shape…to feel better … Read More