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I finally worked up the nerve (guts, balls) to ask Rachel’s bus driver and monitor to take a picture with Rachel. Out of total manipulation I asked them on Rachel’s birthday and was successful. Below are Rachel with Sandra; the bus monitor who is originally from Brazil. And Boston with Rachel and Ruby; Rachel’s bus driver who is trying to teach Rachel (and me) a little Spanish and apparently does the best Mickey Mouse impression.

Rachel with her awesome bus monitor, Sandra (from Brazil). <3

Rachel with her awesome bus monitor, Sandra (from Brazil). <3

In many places here in Denver we have community mailboxes. I like to call them mailbox trees (Rachel is photographed near one of the trees near our house).

Within these plastic boxes, (yellow and blue) are small USB books on tape provided to her by the library of Congress. Audio books. Books on tape. They come in the mail, for free, and this library has extensive content for all ages.

So imagine how ironic it is that these books are mailed, for free, to blind people all over the United States, yet the “outgoing” slot is too small to fit them.

Are blind people supposed to drive to the post office?

Just a morning WTF moment.

Rachel trying to mail her books on tape for the blind

For Rachel’s Birthday, my mother requested a “Feel Better Friend” through their website and organization based in Olathe, Kansas.  Here is Rachel with her friend who was hand made to look like Rachel.  So cool! Rachel turned 16 last week was diagnosed in 2009 with Juvenile Batten Disease, a very rare and progression brain disease which has caused her blindness, cognitive and speech loss as well as worsening memory and swallowing issues.

debt graphic

I’m up to my eyes in debt since my x ran off to find himself. It literally makes me want to die and I don’t know what to do. I’ve spent the last year living off of credit cards just to support my family. It makes me feel sick on the daily and I lose a lot of sleep over this every week.

Ready to live on cash and need to find a way to start chipping away at this mountain before it crushes me. Where do I begin?

For Rachel’s Birthday, my mother requested a “Feel Better Friend” through their website and organization based in Olathe, Kansas.  Here is Rachel with her friend who was hand made to look like Rachel.  So cool! Rachel turned 16 last week was diagnosed in 2009 with Juvenile Batten Disease, a very rare and progression brain disease which has caused her blindness, cognitive and speech loss as well as worsening memory and swallowing issues.

Sweet Sixteen.  I keep seeing that sentiment in cards and online messages.  For Rachel, it was a very good birthday.  She woke up to gifts and cards from all over the world, hot muffins.  Lunch at school came with pizza delivered by me, Todd, Julie and London.  Dinner was more pizza and cake and we invited her father to join us.  More presents, more cards and the phone calls came rolling in.

For me, her Mom, it was a bittersweet birthday.  She was supposed to get her driver’s license.  Being able to drive was a HUGE deal for me and I look forward to all of my kids driving and putting together their first car.  Rachel will never have the life she deserves and her birthday is hard for me.  I put on my brave face as much as I could but especially while she was around.

Here are pictures from May 18, 2016, her “Sweet” Sixteenth Birthday:

I wanted to get pictures of her driver, Ruby and bus monitor, Sandra, but I didn’t have the nerve.

Ruby is shy and I’ve been working on her since January to talk and it’s been working! It’s was probably torture for her, the beginning, but I believe I’m tolerated now. She’s sweet as pie and puts up with my crazy. smile emoticon. Her husband is a huge Red Sox fan so I knew she needed me as her friend. lol

I promise to ask for their pictures before the end of the year. ❤️

And that school bus? It was brand sprawling new for Rachel to start school at the beginning of this year!!

In many places here in Denver we have community mailboxes. I like to call them mailbox trees (Rachel is photographed near one of the trees near our house).

Within these plastic boxes, (yellow and blue) are small USB books on tape provided to her by the library of Congress. Audio books. Books on tape. They come in the mail, for free, and this library has extensive content for all ages.

So imagine how ironic it is that these books are mailed, for free, to blind people all over the United States, yet the “outgoing” slot is too small to fit them.

Are blind people supposed to drive to the post office?

Just a morning WTF moment.

rachel with her audiobooks for the blind

My 12 year old is pretty mature for his age and has a few older step brothers. He’s been exposed to lots of stuff and has a mature sense of humor.

I keep hearing that the movie is R rated but that its not appropriate. He has seen too many R rated movies to count and enjoyed most of them (as much as any adult would have). What’s your take? Do you think Deadpool is too mature? Like, really really R rated?

My 3 younger kids have chosen non Christian beliefs in matters relating to the origin of life, leaning heavily into science. I am an atheist but my oldest child very much believes in God and I respect her beliefs.

Easter is a Christian holiday and while most of the meaning of the holiday is commercialized I’m not really feeling like I should participate in Easter baskets and Easter egg hunts when my younger kids “don’t believe.”

But I feel guilty not participating and skipping a major holiday here in America. What’s your honest advice?

Rachel Vontungeln 15

I haven’t blogged in forever and I owe myself an apology.  I need this blog.  For posterity’s sake (my memory is shot) and to get my feelings out.  Feelings. I sound like such a bitch.  Feelings. FML.

I texted my landlord in December to see if she had any larger homes for rent and within a few weeks I was starting to move my kids and all of our crap to a new home in Northeast Denver. Continue reading “2016 is here and so are we” »

The Wasabi clan finally pulled together some halloween attire.  I turned myself into a zombie doctor with the PPE that I was given to work with Rachel.  Julie became a kid zombie with a little make-up and Continue reading “Stand Tall Colorado 2015 Car Crush” »

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.

This kid, with a head full of curls, turned 10!  I can’t believe it has been ten years since he was born at home, in Colorado Springs.  I feel like I’ve lived 5 lifetimes since then.  He’s a very smart kid who wanted a camera and a small soda fridge for his room.  He took this picture with his new camera.  Love him!

Boston Fenway turns 9

I love an overexposed photo.

Boston is pretty rotten in the weeks (months!) leading up to his birthday.  It’s all he can talk about, think about.  Today was the big day and he had his best birthday ever!  His favorite present?  An emerald green fuzzy bath robe that was a replacement for a zip up robe that was a present from my best friend.  A present, a robe, that we named “Robie” and my children take turns stealing.  One less child to share with. Continue reading “Boston Fenway Turns 9!” »

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