Tag: disease

To put it as directly as possible: my oldest daughter is dying, I’m a single Mom and life is a bit tough at present. I realized that I was due for a magnificent stress relief yesterday. I was at the bus stop putting my daughter on her bus with my Mother at my side. It was not a regular moment, my Mom was in from Boston visiting myself and my children. I had let my daughter stay home all week from school so she could spend every waking moment within fingers’ reach of my Mom.

Rachel’s new school is full of people just like me and just like you with feelings, hopes, laughs and tears.  Young people who have been admitted to the school because they were born with (most) a disability or acquired one along the way like my Rachel.  I know that some of the kids there will probably attend the school until age 22 and will transition into the mainstream world.  I also know that due to privacy the staff is unable to divulge medical information to the other children about Rachel or her fate.  When I am visiting, different kids will strike up a conversation and I have started to tell them things about Rachel.  That she was totally normal and healthy, reminding them (especially the boys) that she is only 13, that she is blind. Last night I told two of the other students that Rachel is terminal and the name of her disease (Batten Disease) so that they could read more about Rachel. There is a boy at her school who is truly amazing.  He can maneuver his iPad with his feet faster than I can with my fingers.  He took a liking to Rachel over the summer when(read the rest)

Another installment of my life is below. Life is not always Facebook pretty. This morning: So picture me in yesterday’s yoga pants and tank top with plaid shirt over the top. I’m doing my morning chores, a little more relaxed because school is closed today due to the winter storm that is finishing up. While I’m making coffee, getting my 13 year old on the toilet to pee, drawing her bath, dishes, laundry, etc… I’m also reliving yesterday. Going through my head are the scenes from last night… And I step in dog poop in my new $10 flip flops from Santa. I promise that I let the dog live. I didn’t want to… Last night: The kids have been home for 2 weeks. I made a beautiful ham dinner that I call “thanksgiving” and it’s the same dinner I make every week to show gratitude weekly rather than yearly. Ham, gravy, peas, cranberry sauce, and special mashed potatoes. It’s pretty awesome and a favorite with my kids. I call my kids in to the kitchen so I can make them a plate because, like us grow ups, kids don’t all like the same exact combo. 1 hates gravy, 1(read the rest)

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