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Thursday, September 27, 2012

One Year Ago Today





















This is a photo of Kenan coming out of sedation from his diagnostic MRI. The images would prove inconclusive but it began the process of more than just explaining his symptoms, it led to a true understanding of our son. Two weeks later we would hear the words Krabbe Leukodystrophy for the first time. Although the disease has taken much in the past year, it has not taken him. And for that, our gratitude for all things Kenan overwhelms the words right out of me. 

Saturday, September 15, 2012

As the Smaller Things Become Smaller



Like a bolt of lighting dividing the air, this is the one sound that can separate my hope from my despair. For the few seconds that it lasts, I am suspended, free from the grip of either; I am at peace and so is he. This is Kenan's sigh: what graciously remains of his *non-pain, verbal communication. The second his sweet voice fades away, the two extremes crash back in on me. 

There will come a day when Kenan sighs his last sigh just like his smile, laugh, and cry before it, only we won’t recognize it as such. It won’t announce itself. Days sometimes weeks will go by before we realize it is gone, along with the chance to name it "Last".

*I've used the word non-pain rather than pain free because pain free as a state of being does not apply to any child with a leukodystrophy.


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Monday, September 10, 2012

A Wish for September

September is Leukodystrophy Awareness Month and Kenan is making his wish.

Saturday, September 1, 2012

We Love Summer Series

We Love Summer #10: 8/31/12
















Everyone needs alone time: Kenan napping amongst 
the minnows at South Shore Beach. Happy Labor Day 
weekend everyone!