My childhood was different from anyone else I know, but to me it was normal.
You see, my mother has brain damage. It happened when I was born as a result of a medical error. So literally from day 1, all I have ever known is my mother with brain damage.
Her vision is impaired along with her short-term memory. There are many other issues, but they are harder to explain than with just a few words. She can see directly where she looks, but then everything else wiggles. She had to learn how to walk, talk, and exist again. She can remember everything before her pregnancy, but anything after that is fuzzy. She can’t retain memories.
My mother can’t drive, read, do more than one thing at a time, remember what I look like if I’m not in front of her, cross streets in the city, or find her shoes (ever).
I started trying to help her when I was about 3 years old. I became a seeing eye dog, in a way. I learned how to cross the street so that I could lead her. We lived in a small town, so it wasn’t terribly difficult. I had to help her when there were weird patterns on the floor. I would walk with my back and head perfectly straight so she could put her hand on me while we walked together at a very slow pace.
I had to help her remember people’s names, phone numbers, where our ride had parked the car, which person had given us a ride that day, what we needed at the store, and anything else that came up. I had to listen to any instructions given to her, understand them, and explain them to her in a way that she could understand.
When she wrote a check, I had to point to the lines so that she could find them.
Sometimes she would only be able to get us a ride to our destination, but not home again. So many times we would end up walking somewhere and just waiting until my dad was off from work and could pick us up. It is still somewhat amazing to me how many people said no to taking us home – people we knew.
My mother was very aware of how she used to be, and she was devastated. She told me all the time what a failure she was. I think I get that more now that I’m a mom because I feel like a failure all the time too, and I have no disabilities. I wish I had known that when I was little.
She cried almost every day for years, and I would hug her and listen to her. I wanted to be there for her, but I’m not going to lie… It was a little exhausting. But I did it anyway.
While other kids whined and threw fits, I didn’t have that luxury. A fit from me would have put my mother over the edge. It would have been too much stimulation, and she would have had to go sit by herself for a few hours in silence to get over it. I knew this, so when I needed to cry, I did it alone. I never wanted her to know when I wasn’t okay.
On the flip side, I saw my mother’s heart. When you are literally stripped of your whole self, your character comes out. She is patient, kind, loyal, and loving. She truly cared about what I cared about. She moved mountains just to take me to the pool… or to get school supplies. And when I was sick, she always found a way to get me to the doctor and get the supplies we needed for whichever illness it was.
My mother and I were a team. We helped each other. We have been through hell together, and there’s nothing that can break that bond… even when she’s driving me crazy! Even when I’m extra stressed and I take it out on her… we are unbreakable.
I learned how to spot neurological problems in other people and how to respond to those things. I learned how to be compassionate. I learned what it took to take care of someone. I learned how to teach a skill in 3 sentences or less. I learned to be responsible, how to listen, and how to care. I learned how to persevere and never, ever, ever give up. And I learned what the worse in for better or worse really looks like.
When I was younger, I had hope that she would get better, and she did for a long time. She worked so hard to improve, and things definitely got a lot better as I got older and more time passed.
But now… she’s getting older, and I am noticing it more and more. She used to be able to be reminded of things, but now there are big gaps of missing information/experiences. She doesn’t even realize it most of the time. She’s able to function through the day, but there’s not a lot of continuity. She doesn’t have Alzheimer’s, but aging doesn’t help anyone, and she started at a lower point brain-function-wise.
There are times when I miss her… Sometimes I think how much I want to ask my mom for advice or her opinion, but I know I can’t because it’s too complicated and she won’t be able to follow the conversation. And if I told her that, she’d cry and cry.
So I’m still crying alone and protecting her from my struggle. I am scared of what’s going to happen, and I feel very alone. It feels sometimes like my teammate is slipping away.
I don’t have any answers for how to deal with this… I’m crying as I’m writing it. But if you’re going through this, you aren’t alone. We need to support each other.
If you know a child with a disabled parent, that child probably needs someone who can be understanding. And the CHILD might need a break. If you can go over and help out and let the child play for a while, that would be a great gift. But remember, children don’t have the language skills they need to really say what they need/want. I didn’t have any relaxed fun… or relaxed time really. I was always stressed. If there’s anything you can do to alleviate stress, even just for a few hours, it makes a huge difference.
To this day, I love it when my mom laughs because she didn’t for so many years. I even secretly taped her laughing. She has the best laugh. If you can bring laughter to any families struggling, do it. Laughing saved me.