Some days are pleasant but most days seem longer than usual and every day is a new battle. There’s always something to do, somewhere to go or someone to visit.
Life with the Bearded J’s became more hectic when we assumed full responsibility of my aunt Lisa, who’s 49 years old and was born with Down Syndrome.
She was my childhood buddy, I remember spending summers at my Grandma’s house, with her. Lisa and I would color, play games or cards, sing karaoke and dance our hearts out. We would swim on sunny days or play Super Mario Bro’s on rainy days.
When Lisa came to live with us, I expected it to be like the summer’s we spent together, decades ago. Although those moments still happen, they are far and few; that’s not at all what normal life is like. I had no idea the amount of care and attention she would need and desire.
I don’t know if Lisa can still do all those things we used to do for so many summers because she won’t even try. She’s changed so much and it’s heartbreaking because her regression is highly noticeable.
Some days I think Lisa’s developing Dementia, which is common in adults with Down Syndrome. Other days I think she’s still confused about everything that happened with my Grandparents and the events leading up to her arrival at our home. But every day I know I’m going to have to reteach her something that she once knew how to do. And every day, Lisa wants to argue with everyone about anything.
Lisa loves to fight. Everyone needs a good argument every once in awhile but she needs it every day. They aren’t normal tiffs or sassiness that kid’s dish out- I would prefer those kind. These are full blown yelling and screaming at each other arguments, over nonsense. Half the time I’m not even sure what starts it and each time I don’t know how to end it. I say stop, I try to ignore her and I walk away, but she keeps going. There are times when I have to take the kids up stairs and turn music on because her screaming has made Jace cry and terrifies Jenna.
There have been times when Brandon has to step in and say “enough is enough,” and allows me to take a time out. Then there’s times when Brandon isn’t here and I can’t walk away from the problem. Those are the moments that scare me. Yes, I’m scared. Not of one person or one thing but of the whole scenario. I know it’s not normal. This isn’t how people live, this isn’t how my family lives but this is what our life has come to.
I’m scared because I don’t know what to do and I don’t know if all this will leave my kids emotionally scarred. Will they be better because of their time spent with Lisa or will she leave a negative impact on them? I’m scared because I don’t know the end game.
Do I wipe my hands clean of the situation? I can’t, Lisa doesn’t have anywhere else to go. Do I spend the rest of time living in fear of the repercussions from the decisions we made? I have to. I can’t turn my back on family, especially not Lisa.
I’ve read every article I can get my hands on, I’ve reached out to my Grandparents and other family members on how to cope with her but nothing has helped. This isn’t like raising a child where you can mold their behavior through therapy. Lisa is set in her ways and she won’t change a thing for anyone, there are no tricks that help. No matter how many times you say something, she’s going to do what she wants because that’s how her life has always been. Even in incidents that are life threatening, she does what she wants with no regards.
Lisa has taught me a lot about life. As a child she taught me empathy. As a teen she taught me sympathy. Now as an adult, she’s putting those two traits to the test.
My life hasn’t been funny lately, it’s been exhausting, hectic and HARD. Caring for Lisa has been the hardest thing I have ever had to do, and because most of Lisa’s shenanigans are not something I want to share -they don’t embrace her positive side- I have no place to vent.
I started writing as a form of therapy. When I needed someone other than Brandon to talk to, I have turned to you and it’s always worked. But I can’t completely open up about Lisa and what hurts worse, I can’t find any humor in what I’m going through with her.
In the beginning- I could laugh it all off. Her escapades seemed silly and still had shock value. I made excuses for her behavior, tried to cover it up and not let anyone see how badly she had regressed.
Six months later- I feel emotionally broken. Nothing shocks me now, I expect the worse going into everything with no hope of a better outcome; I know how she is.
At times I’m desensitized from it all. Then there’s moments of overwhelming emotions. It’s hard to explain but I do know that none of it brings forth humor.
Some things are better left unshared. I have always kept the best and worst Bearded J moments to myself, Lisa moments are no different.
I want to vent to you but I can’t. I just can’t.
I already feel like I’ve said too much.