Dear Krabbe Disease

Dear Krabbe Disease:
You have officially tried my patience this summer. I am truly exhausted by your presence in my house. You have officially sucked the life out of my soul and spirit and have created a sense of despair that I did not know possible. I am sick of living with a gorgeous child who is trapped inside her body; she cannot walk, talk, eat, poop or bathe on her own accord.  She is alive and beautiful; she laughs and breathes and giggles and smiles and burps like the best of us.  But you vile disease have robbed her of her ability to hike up a mountain with her twin sister. She can't have pillow fights with her grandfather.  She can't even wade in the lake or swim in a pool without a huge amount of assistance to cool off in the summer heat.  Instead, you cheap lousy bastard have moved into my house, which is already too small.  You have set up shop next to the oxygen tanks and suction machine and monitors to make sure we know we are never having a typical summer.  Every summer your presence seeps into our house with a horrible reminder that we cannot have too much fun, otherwise, you might throw a tantrum and spike a high fever just to remind us who is boss around here. Day in and day out you are a major killjoy! Your presence adds tension to every relationship in the house.  Thanks to you Krabbe, we have a parade of people in our house who get to witness how we parent, houseclean, cook, fight, love and relate to each other. We have an audience for everything we do, including coping with your ugly face.  I'd like to kick your scrawny little unmetabolized lipids out the window so I could feel what it's like not to have so much pressure surrounding me for a while.

Consider this an official eviction notice. As of today, you are no longer welcome to reside with us. You cannot take my daughter or any of her allies or other little people who you have also tried to destroy. You can just go away now.
Sincerely,
A really tired and angry mom.      


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When Kirsten isn’t dealing with progressive deterioration of the brain of various family members, she is a professor of Communication Studies at the State University of New York. She is also the mother of two awesome seven year old girls who are going into second grade and she loves living in Vermont.