handling 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...
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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...
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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...
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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...
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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...
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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...
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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...
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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...
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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...
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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....
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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...
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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...
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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...
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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...
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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...
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introducing ethan
My son is a month old now, and so I suppose it's high time I let you know he's arrived and that he is living up to the promise of his name in ways we didn't even dare to imagine. Ethan Vikash was born...
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hard to believe
It's still hard to believe that this is the view from the balcony where I eat my dinner most nights, safely holed up in the home of the complete strangers who didn't hesitate before they opened their...
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mommy, where are you?
It's ten-thirty on Tuesday night, and I should be in bed. But yet again Zoe just woke up screaming (her sleep has been a bit rocky since the move to Philadelphia), and in the middle of her cries her...
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new dreams
The day everything changed was the last day of winter. On Saturday the hardest spring of my life will give way to summer, and somehow I've lived through almost an entire season now, knowing that the...
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the mama i'm going to be
It's funny how your perspective can shift so wildly, how a good day can come to mean something so different than it did a few months ago. Today was a good day. We spent four hours of it in the car,...
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