Dreading the weekends

Posted by in (Team) Rachel & Batten Disease, Blog

I’ve been wanting to write this post for months but have had such a hard time coming up with the right words.  This is a problem I never seem to have but it has been so hard for me because I’m too close to the problem.  I’m not sure that makes sense, my head feels crazy every weekend and sometimes I want to sleep it away.

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Grief Released

Posted by in (Team) Rachel & Batten Disease, Blog

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.

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Posted by in (Team) Rachel & Batten Disease, Blog

For Thanksgiving we had a great time at the Schnelker household who graciously offered their home for Thanksgiving:













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Mother to Son

Posted by in (Team) Rachel & Batten Disease, Julie

During our time together this morning my Julie shared this poem with me after I shared a bit of my pain with her, stressing that the best part of our lives has yet to happen.  Which is a light at the end of the tunnel of darkness we are going through now.  She is an amazing child.  I believe she drew this poem from her time in 3rd grade last year with Mrs Buttkus:

Mother to Son


Well, son, I’ll tell you:
Life for me ain’t been no crystal stair.
It’s had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor—
But all the time
I’se been a-climbin’ on,
And reachin’ landin’s,
And turnin’ corners,
And sometimes goin’ in the dark
Where there ain’t been no light.
So boy, don’t you turn back.
Don’t you set down on the steps
’Cause you finds it’s kinder hard.
Don’t you fall now—
For I’se still goin’, honey,
I’se still climbin’,
And life for me ain’t been no crystal stair.
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The world seems to be spinning faster and faster

Posted by in Life


Rachel had another grand Mal on friday night, this one was while we were at a carnival sitting in the very top of the zipper. We were tipping back and forth as they were loading people into each car waiting for the ride to start and she starts convulsing. John was on another ride with Julie, London and Boston on the other side of carnival. I got Rachel away from the cage so she wouldn’t bang her head and started yelling down to the short line “Stop the ride, stop the ride, my daughter is having a seizure.”. Not sure if the ride attendants understood me but someone got them to stop and bring our cage back to the ground so I could get out with her as she was still seizing. When we got down I looked at the most capable teenagers to go to John (good thing he was wearing a lot of lime green and is really tall so is easy to recognize) and he came running.

She went home with John and I stayed with Julie and the boys and after my adrenaline stopped pumping we finished out the night on a good note. It is very important to me that Julie, London and Boston keep as normal as possible and not let Rachel’s disease overshadow every childhood memory.

The best part is that we all went back on Saturday night and Rachel and Julie both rode the zipper… TWICE! 🙂

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