Clik here to view.
losing sight of shore
The four of us were sitting around the table tonight, enjoying Chinese takeout. (Well, to be totally accurate, Phil, Zoe and I were enjoying it; Ethan was asleep in the wrap where he spends the...
View ArticleClik here to view.
speak up
I've been looking back over old posts on Instagram and Facebook and here on the blog, taking a moment while Ethan is asleep to see his journey unfold all at once instead of step by heart-wrenching...
View ArticleClik here to view.
my mustard seed
We just got back from another cardiology appointment. All of this is starting to feel normal. Pulling up to hospitals and filling out forms and using every trick in my book to keep the baby happy so...
View ArticleClik here to view.
sparrows and lilies and babies and me
I feel paralyzed right now, weighed down by the length of time stretching between my last words and these ones, unsure of how on earth I'm supposed to choose the right ones now that my fingers are...
View ArticleClik here to view.
a hundred and thirty-eight
I feel like I've been doing nothing but throwing the darker pieces of my heart at you here recently, and I am so grateful for the way that you have carried them when they were too heavy for me. I want...
View ArticleClik here to view.
equal parts
At morning rounds last Sunday, the resident following Ethan's case took a deep breath and listed his heart defects and his history up until now, stumbling a bit over some of the unfamiliar words....
View ArticleClik here to view.
not bad for a broken heart
It's CHD Awareness Week, and one of the challenges floating around the web is to post a picture each day this week for a certain prompt. Today's is diagnosis and even though a picture is supposed to...
View ArticleClik here to view.
new life
I'm sitting here in the dark, rocking a congested baby to sleep for his last nap of the day while stomping feet and laughter echo up from downstairs where my husband and daughter are playing. Over the...
View ArticleClik here to view.
a letter to myself, a year ago today
Today is the one year anniversary of Ethan's diagnosis. I'm shaking my head as I type this, an incredulous smile on my face as I look at how far we've come, the rest of me terrified when I think about...
View ArticleClik here to view.
first and last
I got a call from the geneticist down at CHOP the other day; Phil and I submitted samples of our blood for testing back in November when Ethan went in for his Kawashima, and the results had finally...
View ArticleClik here to view.
awareness
Did you know that, along with being the perfect opportunity for Star Wars references, tomorrow is Heterotaxy Syndrome Awareness Day in the great state of New Jersey (and lots of other states across...
View ArticleClik here to view.
more
We stood next to each other under the hot sun, watching our little ones toddle around the park on chubby, brown legs. How old is he? she asked me, gesturing towards my son, who was trying to climb the...
View ArticleClik here to view.
rock in the river
It's been too long, hasn't it? What's that platitude? Something about long days and short months, and I didn't really believe it until all of a sudden I'm no longer the mama of babies, and both my...
View ArticleClik here to view.
apples and oranges and a new year
Sitting here on the cusp of a new year, there is too much in my heart for me to keep it there, and so I turn here, just like always, to let it overflow even though it’s been nothing but echoes and...
View Articlehandling the hard stuff: coping strategies for kids facing medical procedures
To start off, let's state the obvious: this blog has been silent for a long, long time. If you're looking for updates on Ethan, we keep his Facebook page, Hope For Ethan, updated on a consistent basis...
View Article