My high schooler.  Beautiful just like her Mother. Rachel goes to Fletcher Miller Special School in Lakewood, Colorado and started a new class this year.  I’m always nervous sending her to new people but in her class this year is another student who is verbal.  Last year, unfortunately, she was the only verbal “kid” in the class.  She, like a typical teenager, would prefer to stay in bed all day.  But I need to work and we both need a break from each other.

Almost a month ago I posted a request asking folks to send musical birthday cards for Rachel’s 15th birthday.  Our family has experienced the power of social media and the internet.  Last fall I posted a “Go Fund Me” seeking donations to help me purchase a wheelchair van as Batten Disease is taking Rachel’s ability to walk.  I was able to buy “Cartman” the low mileage wheelchair van at a very low price within a few weeks.  People are incredibly generous and kind.

Rachel (on the right) is turning 15 on May 18th and I am asking my internet family to send her MUSICAL birthday cards. She is blind and terminally ill because of Juvenile Batten Disease. Rachel Vontungeln 4769 Dover Street Wheat Ridge, CO 80033. Please share and thank you.

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.

I am pretty sure this video was taken at summer school in 2010.  Massachusetts Basksetball State Championship Coach and Special Education Teacher, Liz Londergan? took the time to show my blind daughter Rachel how to shoot hoops and Rachel sunk one!

Last night Rachel and other students at Fletcher Miller School were honored by having their art featured in a show in the Corner Gallery at the Lakewood Cultural Center.  I have a lot of respect for her art teacher, Jenni, as you really have to think outside of the box to teach a blind person to create art beyond finger paints, wikki sticks and tactile stickers.  I’m really proud of both Rachel and her teacher and going to the show was a very sunny moment for me.  I tried to take her picture with her art and her certificate but she, much like her mother, was a bit of a shit about it.  LOL. We also took a look (those of us that can see) at an artist, Chris Kreig, who had a really cool “BIG” exhibit, I put in a couple of his pieces with Julie posing at the bottom.

Thank you to the Beyond Batten Disease Foundation for allowing me the use of their beautiful graphic.  The video on their home page reminds me of Rachel about 5 years ago.  I started sobbing while watching it and it took me 2 hours to recover so I could write this blog entry.

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.

Having a blind child makes you look at life a different way.  Blindness without anything else, like Batten disease, causes you to look at life in a profoundly different way.  Last night I saw a clip about a cat named “Honeybee” who is from Fiji and was adopted.  Her human takes her on hikes with a harness and leash and wears her in a pouch on the way down from the hike.  Absolutely beautiful, simple video and worth a watch: