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.
4769 Dover Street
Wheat Ridge, CO 80033.
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→
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.
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:
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).
I’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.
She 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→
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→