So my name is Kat (Kate) and I have four children. My oldest is Rachel. She is 14, blind, developmentally disabled and can’t eat, toilet, bathe or do very much on her own. She is unable to maintain her temperature on her own and is having a harder time walking and will yell multiple times throughout the day until you figure out what she wants to get her needs met.
To say she is a handful, is the understatement of the fucking century.
She was healthy. Perfect. Sweet. Sighted, Never a brilliant child but certainly normal for her age (well, medically speaking, she was “within normal limits”).
She and I have been on this journey together for 14 years. It has been a rough road. When I was pregnant with her I lost my shit, mentally, and although I don’t often admit this, I was induced 6 weeks early because I didn’t care whether either or she or I lived…. or died.
Very dark days back in 2000.
When she started to show signs that there might be something wrong I had three mains sources of guilt that I hated myself for. Daily.
1. I lightly smoked when I was pregnant with her.
2. Her biological father made zero effort to be in her life either emotionally or financially (he has been consistent like that for nearly the entirety of her life. Apparently he thought they would have a relationship when she grew up. He is an idiot who went on to have two beautiful and perfectly healthy daughters).
3. I remarried and had 3 more children “back to back” and for a while chalked up her difficulties to some kind of rebellion to her younger siblings.
None of those three things actually matter. It took me a long time to get through those. July 2009 I found out she had Juvenile Batten Disease and was dying.
The whole process has sucked for her. She has lost so much, we have lost our normal lives. She is losing her ability to walk and talk and has a very hard time with bathing and toileting. Both activities she and I dread everyday. Because of accidents and period issues she has gone from underwear to wearing adult pull-ups.
I see other parents with children who have the same disease and I compare. I never compare with the parents who have infantile or late infantile batten disease because they truly are very different diseases that have their own set of problems.
I see other parents who pray for a miracle cure and I steer clear of them because I know that the miracle isn’t coming.
I see other parents who will keep their child alive for as long as they possibly can and while I support their level of intervention, I know that isn’t what I want for my daughter.
I see my face when I am helping her into the bathroom, I feel my arms ripping to safely lower her nearing 200 pound body into the bath tub. I feel my frustration level rise when I have to hear her yell yet again because she is upset.
She hates being bathed very much like a cat does. The getting wet, the getting in and out of the bath, the feeling cold while she is dressed, the hair brushing. I could write a whole paragraph on how much she hates having her teeth brushed. I don’t blame her (close your eyes and have someone else brush your teeth just once) but it has to be done even though she and I would rather skip it.
I see the other parents of Batten children who have the same form as Rachel and I feel like the other kids are happier. Rachel has been consistently unhappy for a long time. She loves my mother back in Boston when they spend time together and she has moments of happiness and giggling but for the most part she is either yelling or unhappy. I can’t imagine what it is like to rely on another person to do everything. To eat, to pee, to watch a tv show, to be washed. But I look back and think of her time with her teacher of the blind, Anneliese. She loved her time with Anneliese. I want the Rachel that appeared when she and Anneliese worked together to bake, to craft and to make music.
I want a happier daughter because I know that will lead to a happier Mom and a happier life. I have employed an external respite facility to have her for a few hours twice a week and she starts school next week.
Now I have to look inside myself, inside my tired body and figure out what I can change to make this happier Rachel happen. I’m open to suggestions because if I can figure this out it will change our lives in so many ways. I know most teenage daughters hate their Moms…. but Rachel, mentally, isn’t a teenager and she certainly didn’t go through puberty and exhibit the “NASTY” that I may have been seeing in my younger daughter entering into “the change.” (Not naming any names. Right, Julie?)
I also need to teach my younger children to have more patience for their sister…. and I must lead by positive example. This is the hardest thing I will ever, ever go through. This is the hardest thing they will go through. Oh hell. I hope this is the hardest thing my other, unaffected children will ever go through. I can’t even think about that.