Todd and I took the kids to Rainbow Lakes outside of Nederland, Colorado the weekend before Labor Day Weekend. Rachel’s urn in tow. These are the pictures Todd took. ❤️
Took the kids camping a week or two ago and had a great time! Looking forward to getting out there and doing more primitive camping. We had no problems eating vegan and were all quite cozy. Julie slept in my jeep, the boys slept in a 2 man tent and Todd and I slept on an air mattress in my Eureka Tent (Colorado made).
Julie even took her first turn behind the steering wheel!
It’s a different kind of Christmas this year. There are 5 stockings hung, the house is absent one husband and has gained one puppy. Rachel’s health is continuing to decline on a continual basis and my other three kids are aware of some of the harsh realities of our life, more than last year. Rachel’s speech is becoming harder to understand and she is mostly in a wheelchair or on the floor crawling but I have her walk to the bathroom and to her wheelchair on the front porch. Often when she is in an angry mood she gets upset easily and screams like a toddler when her needs aren’t immediately met, other times she will sit content for hours listening to her favorite shows and movies.
Her decline has been hard for me because I have always liked to get out of the house and DO stuff. We’ve spent more time at home this past year than we have ever done before and I find it depressing. I’ve avoided the thought of obtaining a wheelchair van because I’m able to lift her as she still has some lower body strength (although it is considerably weaker since this time last year), although she weighs 185lbs. I started looking at them this past week on ebay and there are actually a lot of them in the Northeast for well under $10,000. I like Wasabi the jeep but it doesn’t fit Rachel nor her wheelchair and I am starting to face the reality that I need to find a way to purchase a used wheelchair van or get sucked into a depression from staying home. Its good to get out of the house, its good to do things (even with a 13 year old that has a terminal brain disease).
I want to go camping with the 4 kids in the spring and have been looking at 1970’s airstreams and realized that between a wheelchair van and a camper, we can stay together as a family of 5 and go on trips together.
This life is certainly far from perfect, Juvenile Batten Disease likes to try and ruin lots of everyday things in life. Some days the disease wins and some days we win the fight. Rachel is definitely the one suffering from the disease but I’d be lying if I said it didn’t directly affect the rest of us. Some days I feel crazy from the constant needing, some days I feel sad for the loss of her health and the loss of my marriage, some days I spend absolutely grateful for my good health. Most days is a mixture of the three.
We love her. The yelling, the seizure watch, her seemingly constant needs that have to be met, the depression of knowing that its going to get much worse, her frustration at not being able to be understood when she speaks makes it hard for me to remember who she was before this disease and see the person underneath that I love. The guilt of motherhood is the worst part of being a Mom.
Life goes on and we will forge ahead on this path. The tree is up, the stockings are hung, Santa has been written to. We all look forward to Christmas this year and enjoying a small, quiet celebration, grateful for what we do have and not sad for the things we lack. All we need is a cure for Batten Disease. The cure is a long time away and out of our hands but the van is something I can tackle after the new year.