Tag: guilt

Rachel and her StuffieIt’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.

is drawing to a close and I’m up by myself tonight (a special shout out to our cat, Krabs, who is sitting next to me while I type). Christmas was good, we went to my Mom’s for Christmas eve and raced home to put out the reindeer dust, milk, cookies and carrots. Santa brought Rachel the “babydoll” stuff she asked for, PIXOS for Julie, an army tank for London and the Buzz Lightyear “yard” that Boston has been talking about non stop. It was a really nice day and the kids have finally calmed down from all of the excitement.

Today I brought up our Geotrax stuff that has been sitting in the basemenrt for at least a year and the kids played with it for HOURS. For whatever reason we don’t have a complete remote control train for the set (either the RC or the train but not a matched pair) and I looked everywhere. The kids manually pushed the trains for hours and had such a good time. I was going to play with the wii fit tonight but I didn’t have the heart to put away their train stuff. They are such good kids

I am absolutely broken over Rachel and what her disease will mean for her future. It is so unfair and I try not to think about it because I just cry hysterically and it doesn’t do me any good. I’m very good about keeping my emotion hidden, especially when I have to. She made me a box for Christmas at school with her paraprofessional with a little note that she had me read out loud. And here I am sobbing but doing everything I can to not let her hear my voice crack. Her hearing has become quite acute as her vision has been failing and she picks up on things she didn’t used to.

I hate this disease and how powerless she is. There is no fighting what is to come. No treatment. No hope. My child is slowly fading away and is generally unhappy, anxious, unsure and not living a life filled with quality and happiness.

And all I want to do is crawl under a rock and die for every moment that I fuss at her for things out of her control. The natural guilt of motherhood has always been difficult for me but it is borderline suffocating now. Balancing 3 presumably normal children who make a lot of noise and hopefully have very long lives ahead of them while taking good care of Rachel and making sure she has good moments and opportunities in her short life. That balance is absolutely impossible to strike and fills me with incredible guilt.

And while I have this inner symphony of juggling and guilt and batten disease and giving them good childhoods, I put a smile on my face and take them places and cook them dinner and show them how to “whack and unwrap” a chocolate orange and making sure they use the correct “Terry’s” terminology. How do you have a normal life in the face of the disease? I’m not sure of the answer but I do know that I am working my ass off to try and make things normal and wonderful and happy.

The kiddos and I already planning to make edible valentines for all of their classmates instead of the lame box o’ cards.

We’re also planning to learn how to make the PERFECT homemade Carrot cake to celebrate the birthdays of my mom, brother and his girlfriend (in March). Anyone have a good recipe?