Poem about grief and anger after son's diagnosis - Mothering Forums

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#1 of 4 Old 01-15-2014, 09:55 AM - Thread Starter
 
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I wrote this a few months after my son was diagnosed with a rare genetic disorder where he can't be exposed to UV light. I thought others here on the special needs parenting forum might relate to the emotions I've had to cope with.

 

Snippets

Snippets of anger trickle into my life.
When I drive and see the mothers with the strollers,
The father wearing the baby,
The children walking around in shorts and flip flops.

Snippets of anger trickle into my life
When I go online and see the photos
Of babies at the beach,
and playing at the park.

Snippets of anger trickle into my life
As I ignore the glares while my baby cries from his covered carseat
As I endure the stares as I close the blinds
And wave my magic device around, seeking safety.

Snippets of anger trickle into my life
When I hear about another person's sister's boyfriend's cousin who has a disease not actually similar at all.
When I laugh again at the unoriginal tension breaker "At least he lives in the right city"
When I remove the affect from my voice while explaining the effects of this disease.

Snippets of anger
Snippets of sorrow
Snippets of pain.

 

http://livingavibrantlife.blogspot.com/2013/07/snippets.html


Mom to ds 10/12 and dd 2/05 ribbonrainbow.gif

Blogging about living with xeroderma pigmentosum at www.pacificnights.org/ and about life in general at http://livingavibrantlife.blogspot.com/
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#2 of 4 Old 01-17-2014, 09:07 AM
 
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Love this, very heartfelt. I have a micro preemie with autism and one with ADHD and Tourette's, no one gets it.
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#3 of 4 Old 01-29-2014, 09:40 PM
 
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Wow that was great. Do you have a link that explains about this disorder for us who are unfamiliar?


"All that is necessary for the triumph of evil is that good men do nothing." -Edmund Burke (1729-1797)
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#4 of 4 Old 01-30-2014, 10:02 AM - Thread Starter
 
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Quote:
Originally Posted by newmum35 View Post
 

Wow that was great. Do you have a link that explains about this disorder for us who are unfamiliar?

www.pacificnights.org/about/ is his website. Thanks for asking!


Mom to ds 10/12 and dd 2/05 ribbonrainbow.gif

Blogging about living with xeroderma pigmentosum at www.pacificnights.org/ and about life in general at http://livingavibrantlife.blogspot.com/
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