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
Special Needs Child
Milestones.
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
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
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.
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
Smiles and Anger
I just saw another mother posting on one of my special needs support group that her 19 month old daughter smiled today–for the first time. This is something that we, I won’t say take for granted, but perhaps that we can lose as a point of reference with Esmé. She smiles so much. She always … Read More
Living Sincerely
I recently read this article in the New York Times Opinion Pages about Living without Irony. And I have to say I have been unable to stop thinking about it. I have had a rather low tolerance for living ironically for awhile. I think at first it was because I just couldn’t keep up, you … Read More
Our Experience with Epilepsy: Part 1 Calling it What it is
November is National Epilepsy Awareness Month. I thought it would be appropriate to spend some time here talking about epilepsy. I’m not going to hit you with the stats about how many people live with epilepsy and all of that. However, you can check out some information like that on this pdf from the Epilepsy … Read More
Rosie/Ezzy the Riveter/Tube-Feeder
Last July there was a facebook image circulating that showed a blue-haired woman dressed as Rosie the Riveter breastfeeding her baby. The image came from this post on a blog called Strawberry Mohawk. The image was intended to be “for all my fellow breastfeeding moms out there struggling with our nursing rights and image.” For … Read More
Three and a half weeks
Well, it has been over three and a half weeks with only one seizure. As I write this I realize that it sounds slightly insane to celebrate “only” one seizure in three weeks. One seizure in a lifetime is not great, am I right? However, in the two months that preceded this three week period, … Read More