→ (Team) Rachel & Batten Disease

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!

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

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

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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→

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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→

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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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Julie pulled this video up over the weekend of Rachel and Julie doing the weather. I cannot believe how much she has declined. It was a huge kick in the gut watching this.  Life is so fucking unfair, I just can’t stand it sometimes.

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The merry go round that is my life seems to be spinning faster these days. John moved to Denver on Friday and is staying with us for 10 days. It is pretty interesting to have him in my home after so many months apart and so many bad feelings between us. This is for the kids and hopefully we will be able to be somewhat nice to each other for them. Continue reading→

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This past weekend I brought the 4 kids plus their father who just drove out here from Boston to the Breakfast with Santa put on by Rachel’s Special needs school (Fletcher Miller in Lakewood, Colorado). It was a great time, huge value for the money and a nice, inclusive environment for kids with special needs and their families.

Here are some pictures I took of my kiddos and a few of people that love Rachel (Hi Kristin and Becca).

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Julie, Christmas at Fletcher Miller Breakfast with Santa 2014

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

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Rachel with a magician on the stage at give kids the world in florida

Rachel with a magician on the stage at give kids the world in floridaI’ve asked my kiddos to write today about what they are thankful for.  This is a common theme in America in November that I think is total crap.  Many of us are selfish and take life and health and love for granted throughout the year.

Boston and London realized last night that there are website statistics which compare their posts in views and comments. They asked me to assign them a topic which will hopefully get them the most post views so I had them jump on the “Thankful for” posts.

I was thankful earlier today for having the common sense to record this video on our make a wish trip back in 2009.  Watching it feels like I am being split open and all of the happy is being shopped vac’d out of me but I’m glad to be able to see what my girl was like before this fucking disease activated inside of her.

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rachel and kat von tungelnShe really enjoyed the long weekend visit with my Mom. I was sure that she was going to be nasty to me this week after my Mom left but I was pleasantly surprised (and wrong). Truthfully I think that is another sign of her cognitive loss. I knew the decline was coming, it is always coming and coming and coming. Her ability to walk is nearly non-existent but I was born to be somewhat of a “brick shithouse” so I have no problem maneuvering her. The order for a hoyer lift is in as well as a new air mattress and an inflatable bed bath for her hair. Continue reading→

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This year Rachel dressed up as a pirate, Julie was a midwife, London was Captain America and Boston Iron Man. We had a great day and was able to attend a few high school sponsored trick-or-treating events and also went to Rachel’s school for a halloween parade. Continue reading→

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IMG_7735Rachel has been very difficult the past couple of days thanks to Batten Disease.  Constantly yelling, needing, demanding you come to her *NOW* and yesterday and Friday evening she was requesting to go to the bathroom several times.  Usually she only goes to the bathroom about 4 times a day (sometimes less).  Her walking is terrible and I am literally holding her up to make it the ten steps to the toilet.

I’m at the point where I’m ready for her to start using her absorbent briefs.  I think that would be safer for her… and apparently my back.  There was no big event yesterday where I “pulled something” – but I woke up in excruciating pain that is not going away.

Rachel was so upset last night.  She is still asleep now.  Friday and Saturday night she didn’t go to bed until midnight.  Saturday night she had her meds a 6:15.  I need to get some rescue medication for nights when she is extremely emotional, sad, angry, ADD, and all over the place.  :/

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Today is like any other day.  Well, today is London’s 9th birthday and I let Rachel stay home today to hang out with all of us and simply relax.  I can’t believe my children are 14, 10, 9 and 8.  Seems like a happy day, which it is, but it is also a very sad day for me.

This sadness I keep inside because my children don’t need to have a sad mother.    I have been avoiding this for a long time but today…

Today I took delivery on Rachel’s hospital bed.

She’s had a hospital bed at my Mom’s house and really quite enjoyed it.  Using the controllers to move her head and legs up and down.

I don’t see this bed as a fun, good time.  I see this  bed as death coming closer to my door.

I hate this disease. I hate this bed.

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Surreal to have a child’s stuffed animals on a hospital bed in OUR home.  I don’t like it.

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She is all happy because I made her ramen for lunch.  Ramen slides down her throat which has an epiglottis that likes to forget to close from time to time.

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Rachel listening to Disney Junior.

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Please someone wake us up from this nightmare.  All of the parents of dying kids are living in a nightmare.  Nightmares are for night and you’re supposed to wake up from them in the morning being grateful that it wasn’t real.

Except this is real.

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