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