The kids are totally stoked with the Halloween decorations adorning the front yard in our little rented home.  It has been nearly a year since I broke my ankle.  A whole year of living in this house.  Another year of Batten Disease taking a stronger hold of my child.  A year of Julie getting taller and more mature.  A year of my boys fighting, getting better at video games and learning how to cook.

I love this time of year.  Its bittersweet but still my favorite.

Rachel with Sam on Bike Day 2015

So this is a yearly event at Rachel’s special needs school called “Fletcher Miller.”  The idea is to get all of the kids together, regardless of ability, and have them ride a bike.  I got there and put Rachel on a bike and pulled / walked with her around the track.  I missed this last year (2014) and the principal, Bob (who is Spongebob in the pictures below) was nice enough to email shots of my girl. Continue reading “Rachel at Bike Day for Fletcher Miller Special School 2015” »

Rachel decided it was time.  She was ready to hold “Rosie” the Tarantula that lives at the Butterfly Pavilion in Westminster, Colorado. They have dozens of Rosies to swap in and out throughout a typical day and this Rosie was presumed to be about 10 years old.   Continue reading “Rachel conquers her fear of Spiders!” »

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. Continue reading “Rachel’s First Day 2015” »

Time is a funny little concept that drives so much of our actions, interactions and stress.  I’ve signed onto my blog tonight to share a picture of my oldest daughter whose hourglass is running far too quickly.  I’m turning 37 on Monday and I can’t remember much of my life since getting my driver’s license over 20 years ago.

I’ve done a lot in my 37 years.   I’ve made my parents proud and I’ve made them feel beyond disappointed.  Worse than that are the moments in my life I’ve made myself disappointed.  You relive them over and over and over.

I never finished this blog entry that I wrote two years ago, almost to the day.

My daughter’s hourglass ran out.  I’m still here, fighting to live every single day.

Blog entry completed 8/23/17.

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. Continue reading “And the birthday cards for Rachel came flooding in” »

Please send Rachel a musical birthday card for her 15th birthday

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.

Boston, London and Julie at Hull Gut, Peddocks Island in Hull, MA, March 2015

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. Continue reading “Dreading the weekends” »

Not the best pictures (too many pictures to edit!!!!) but they’ll do! <3  Thank you so much to Sue for having us over yet again, being super generous and awesome and drinking margaritas with me at 10am.  <3 Continue reading “Easter 2015” »

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.

Rachel with her art and certificate of awesomeness!

Rachel with her art and certificate of awesomeness!

Rachel with Jenni the Art Teacher and Bob the Principal of Fletcher Miller

Rachel with Jenni the Art Teacher and Bob the Principal of Fletcher Miller

Julie standing in front of some really cool art by Chris Kreig

Julie standing in front of some really cool art by Chris Kreig

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. Continue reading “Rare Disease Day 2015” »

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. Continue reading “Grief Released” »

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:

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