The hospital dietician looks at me surprised, a vague air of concern crossing her face. She’s been called in because the nurse didn’t understand my answer to his question about what Esmé eats. “Esmé gets a blenderized diet through her g-tube.” I say, slowly. This isn’t my first rodeo, and I know what’s coming. “You … Read More
Special Needs Child
Nigh Nigh Mum Mum
When I was a young girl I read everything I could find about Helen Keller and her teacher Anne Sullivan. Even now I remember how excited I was by this powerful story of Keller’s intelligence and desire to connect–coupled with Sullivan’s tireless belief that something would get through to Keller. I imaged many times being … Read More
Sick
Esmé is sick again. Yes, again. Honestly this has been non-stop. I know kids get sick all the time, but this is just ridiculous. I try very hard to balance her exposure…she does not attend school right now because we have felt like the germs are just too much for her. But she’s not in … Read More
Thoughts on my Mother’s Day
I had an absolutely beautiful Mother’s Day yesterday. I, honestly, could not have imagined a more perfect balance of time with Ezzy, time as a family, time with my own mom, and time alone. And Ezzy was in the kind of delightful mood she is so known for…all day long. She was giggly and smiley … Read More
Mother’s Day: What she would say…
I just read a lovely post A Mother’s Day Letter for a Special Needs Mom it was an imagined Mother’s Day letter written from the perspective of a non-verbal child to his or her mother. Yeah, yeah, I got misty-eyed. But it made me think, I wonder what my girl would say to me for Mother’s Day? … Read More
Two Years Ago
Today marks the second anniversary of Esmé’s aspiration pneumonia and cardiac and respiratory arrest in the ER of a local community hospital. She was 3 1/2 months old. There are so many things about that day that changed everything for us. Through our 27 months with Esmé there have been a lot of pivotal moments: test … Read More
Onward…
I have posted on here before about my process of “mourning.” I say “mourning” in quotations because that is what I have been told it is. But increasingly I feel there is something about that word that just doesn’t fit. It rubs me the wrong way. Yes, I feel sorrow for some of the things … Read More
Why I have a doctor headache this week….
At this point we have dealt with a lot of doctors. We have an appointment with her 21st doctor in a bit over a week. In addition to the specialists that follow her now, we have had several that, um, didn’t work out for us and many many doctors that have overseen Esmé’s care when … Read More
Confessions of a Blenderized Diet Feeder
I have been spending a lot of time thinking about something lately: the potential of discussions of the benefits blenderized diet (BD) tube-feeding to make those tubies among us who cannot or chose to not go the route of blenderized diets feel somehow inadequate. In reading my friend and colleague’s post on her blog, Feeding … Read More
Bubbles!
It seems these days my favorite thing is bubbles. Ezzy has always been motivated by bubbles. One of her first object related sounds was a blowing noise for “bubble.” She started doing it around Christmas. At first I thought she only did it when we were playing with bubbles, you know, to ask for more. … Read More