Our boy Calvin has a habit of waking up at 4:30 in the morning. I usually find
him uncovered and rocking, rubbing his head in his palms as if he has a headache, which, because of the antiepileptic drugs, he probably does. I unhitch the
netted safety canopy tented over his bed, step up on the little wooden
stool, reach in to drag him up onto his pillow and cover him again. If
he wants water, I give him some from his sippy-cup, my left hand
cradling his sleepy head. Then I re-secure the netting and shuffle off
to the bathroom before heading back to bed, and by then he is already fast asleep.
On crisp, clear winter nights I can see Orion out the bathroom window. He appears strong and fearless in the sky and I fantasize that somehow he is watching over Calvin. The other night Orion was surrounded by a billion visible stars and I imagined them each as points of light representing seizures that little kids are having all over the world, imagined Orion trying to wrestle those seizures to the ground. Weird, I know, but that's where my mind goes—sometimes often.
The other day, while I was doing a quick Internet browse, I saw a status update by my Facebook friend, Emily. She wrote about how her two-and-a-half-year-old son Ronan, who is dying from Tay Sachs disease and who has slipped into near total paralysis, blindness and had long ago developed seizures, can no longer swallow. She explained how he is now taking fluids and meds through an nasogastro tube, and his body is slowing down.
I watched an outpouring of love and support wash over the social media format, friends sending compassionate messages for this woman and her beautiful child. One message simply read, "Godspeed, Ronan." I cried as I read scores of others from people whose love and admiration for Emily and her Ronan are palpable.
I went to sleep last night—as I've done so many times—with the image in my mind of Ronan being carried—embraced—by Orion, who whisks him through the night sky, between the countless stars, through gossamer clouds to touch the gleaming moon with a kiss to his forehead—smooth, fair and tender. I’ll dream of Ronan as his celestial giant watches over him and his mother in their sweet, peaceful slumber. And I will dream this tonight, tomorrow night and the next, and it won't be the first time. I’ll hope to see Orion shining in the night sky above our home, the same velvety sky studded with diamonds that in reality are beautiful shining stars upon which a million wishes are being made for little Ronan.
Thought provoking works by Emily Rapp:
The Still Point of the Turning World
Poster Child
Someone to Hold Me
Notes from a Dragon Mom
Our Little Seal
To give to Tay-Sachs research: http://www.ntsad.org/
On crisp, clear winter nights I can see Orion out the bathroom window. He appears strong and fearless in the sky and I fantasize that somehow he is watching over Calvin. The other night Orion was surrounded by a billion visible stars and I imagined them each as points of light representing seizures that little kids are having all over the world, imagined Orion trying to wrestle those seizures to the ground. Weird, I know, but that's where my mind goes—sometimes often.
The other day, while I was doing a quick Internet browse, I saw a status update by my Facebook friend, Emily. She wrote about how her two-and-a-half-year-old son Ronan, who is dying from Tay Sachs disease and who has slipped into near total paralysis, blindness and had long ago developed seizures, can no longer swallow. She explained how he is now taking fluids and meds through an nasogastro tube, and his body is slowing down.
I watched an outpouring of love and support wash over the social media format, friends sending compassionate messages for this woman and her beautiful child. One message simply read, "Godspeed, Ronan." I cried as I read scores of others from people whose love and admiration for Emily and her Ronan are palpable.
I went to sleep last night—as I've done so many times—with the image in my mind of Ronan being carried—embraced—by Orion, who whisks him through the night sky, between the countless stars, through gossamer clouds to touch the gleaming moon with a kiss to his forehead—smooth, fair and tender. I’ll dream of Ronan as his celestial giant watches over him and his mother in their sweet, peaceful slumber. And I will dream this tonight, tomorrow night and the next, and it won't be the first time. I’ll hope to see Orion shining in the night sky above our home, the same velvety sky studded with diamonds that in reality are beautiful shining stars upon which a million wishes are being made for little Ronan.
Thought provoking works by Emily Rapp:
The Still Point of the Turning World
Poster Child
Someone to Hold Me
Notes from a Dragon Mom
Our Little Seal
To give to Tay-Sachs research: http://www.ntsad.org/
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| Emily and Ronan, photo by Anne Staveley |
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