Our boy 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. 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 some, I give him water from his sippy-cup, my left hand cradling his precious head. Then I re-secure the netting and shuffle off to the bathroom before heading back to bed.
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. Weird, I know, but that is where my thoughts go—sometimes often.
Last night, while I was doing a quick browse on Facebook I saw a status update by my friend Emily. She said:
Ronan needs your thoughts today, friends. Please send good vibes his way.
Ronan is her toddler (though sorrowfully he can’t toddle) who is dying from Tay-Sachs, a dreadful regressive genetic disorder. He has become blind, is mostly paralyzed and has begun having seizures, all symptoms that at some point in the not-too-distant future will be followed by his death.
I went to sleep last night with the image in my mind of little 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. I’ll hope to see Orion shining in the 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.
To learn more about Ronan: http://www.ourlittleseal.wordpress.com/
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. Weird, I know, but that is where my thoughts go—sometimes often.
Last night, while I was doing a quick browse on Facebook I saw a status update by my friend Emily. She said:
Ronan needs your thoughts today, friends. Please send good vibes his way.
Ronan is her toddler (though sorrowfully he can’t toddle) who is dying from Tay-Sachs, a dreadful regressive genetic disorder. He has become blind, is mostly paralyzed and has begun having seizures, all symptoms that at some point in the not-too-distant future will be followed by his death.
I went to sleep last night with the image in my mind of little 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. I’ll hope to see Orion shining in the 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.
To learn more about Ronan: http://www.ourlittleseal.wordpress.com/
To give to Tay-Sachs research: http://www.ntsad.org/
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| Ronan |
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