Update

March 6, 2013 2 Comments

I imagine, based solely on the traffic over the last few days (which has been amazing), that some of you are waiting for an update on Ezzy after surgery. I’m sorry to have been quiet on the subject, but it has been a bit chaotic in that slow-moving way that hospital stays can be. First … Read More

10,000th Pageview Winners!

March 5, 2013Uncategorized 1 Comment

We hit 10,000 views very early this morning–far faster than I had anticipated. Thank you all for your support! Since we didn’t have anyone who both commented on the giveaway post AND followed the blog, I am going to offer one item to a “follower” and the other to a “commenter” to be fair! Congratulations … Read More

My Joyful Warrior

March 4, 2013Special Needs Child 1 Comment

Esmé amazes me. Over and over and over, she amazes me. Her spirit takes my breath away. I have never felt braver, yet more unworthy, than in the light cast by my joyful warrior. Esmé is full of contrasts. She is delicate, but unstoppable. She is patient and unmovable. She is contemplative, but insistant. As she … Read More

A Little Cute Syndrome Love

March 4, 2013 6 Comments

I am sitting in the surgical waiting room now. Ezzy will be about five more hours in the OR. I feel, as I sit here, such tremendous support from all of you readers…it is an amazing feeling to know that there are people whose lives Esmé is touching–people who see the world a little differently … Read More

A light goes on

March 3, 2013Special Needs Child 1 Comment

Well, despite being in the middle of a few rough days, Esmé is just blowing us away with her words. Like many low-tone children Esmé struggles to produce sound clarity and variety. She clearly understands a wide variety words and increasingly complex requests. She selects between a variety flashcard images (dog, firetruck, apple, etc) and … Read More

The Alleged Surgery

March 2, 2013Special Needs Child 2 Comments

Yesterday was finally the day of Esmé’s surgery. I have been very apprehensive, but have also been looking forward to this, in the way that one looks forward to such things: that they will soon be over. I have been looking forward to seeing where she will be in a few weeks–to see what we … Read More

More Fun with Insurance

February 27, 2013Advocacy, Special Needs Child 1 Comment

So, as my dear readers know, Ez is having surgery at the end of this week. The surgery has been a long time coming (see more about the surgery on this post). Since our Children’s Hospital is in another state and the surgery was only scheduled a week ago, I have been sort of wrapped … Read More

Flying Under the Radar

February 26, 2013Advocacy, Special Needs Child

Ezzy’s ability to be so very mobile in her gait trainer has brought with it a whole new set of issues: Visibility. You see, we have been able to “fly under the radar” in many ways with Ez. She is tiny–about the size of a pretty average 12 month-old. So, it isn’t exactly clear that … Read More

Listening

February 25, 2013Advocacy, Special Needs Child 1 Comment

My hubby and I have spent so much time focusing on “listening” to Ezzy. Since she can’t speak  or sign, and many of her forms of communication are pretty subtle, we are constantly tuned in. There is the little jig dance she does when she needs the potty. The teeth-grinding when she might want to … Read More

Ezzy on the Move

February 24, 2013Advocacy, Special Needs Child 1 Comment

I am so excited that I don’t even know where to begin. I guess I will start by saying that Ezzy’s new whiz bang gait trainer arrived (FINALLY!). It is darling and so much tinier than I expected. It is the Mini Pacer gait trainer made by Rifton. It works differently from the Trojan Pony. … Read More