Okay so today didn't go so
well in the world of love and marriage. Fighting is never fun but it's something that does happen here in the
Shaw household on occasion, especially when dealing with Corey's brain injury.
I mentioned before that my husband suffered a
TBI Traumatic Brain Injury when he was 18, cracking his skull, leaving him without the ability to remember a lot of things.
So knowing that you must also know the things we
deal with as a family on a day to day basis, loving each other the best we do, and yet coping with the reality of this disability.
"The brain is like a command station of a space ship. To understand brain injury, think about what would happen if the command station were hit by a meteorite. If a meteorite hits the command station, the command station may not be able to control the direction the ship travels or what the ship does.
The brain controls how the whole body works like the command station controls the ship. After the brain is hurt, it may send out the wrong signals to the body or send out no signals at all. A person with a brain injury may have trouble walking, talking, hearing, or seeing. They may even need a machine to help them breathe." -How to talk to Children about a Brain Injury article from brainline.org
Corey forgets
most of the conversations that happen the day before. He goes to sleep and wakes up and requires reminding the following morning of what was said, where we went or what happened.
He will
yell at the kids for something that happened
yesterday or a week ago, thinking it just happened because his brain hits a
trigger reminding him with an image of the event, despite the fact the event took place in the past.
He has a difficult time
relating to kids who are
rude or
don't listen to him. Sometimes it makes him feel
stupid, almost as though he is beneath them and they know more. This happens when they remember things he doesn't and points those things out.
He forgets to say how he
feels. With brain injury survivors,
connecting to their emotions can become difficult. A lot times we know how we feel because of images, things that have happened. We remember how we felt doing something or how something tasted or smelled.
Strong feelings
crop up based on images from the past, reminders of grandma's perfume when she tucked us in as kids, or a
look dad gave when he was
angry with us. For my husband this is difficult because he has no memories to draw from and due to that finding his feelings and connecting the emotion to the brain (
which has no past reminders) can be so
challenging he often feels lost.
Talking and
explaining things makes him come
off sounding like he is making excuses for things when he's not. A lot times when Core is explaining how he feels, because that is difficult to begin with, it sounds a though he is
blaming. Many times he
speaks the way a ten year old would when
trying to describe how he feels.
"Why are you yelling?" I will ask.
He will reply,
"because I'm frustrated Jake isn't listening."
He sounds
hurt and upset about it, but the
focus remains in a tone that sounds like Jake when he deals with his friends.
I hit Ariel because he called me stupid. The mature
logic of a parent isn't always there to
see the situation without seeing it in
tunnel vision.
Most parents can rise above their kids rudeness, examine and see their age, recognize their limits and why they are behaving badly and then deal with it accordingly. For parents who suffer from a
TBI it's almost like watching siblings rival with one another.
Corey
reacts emotionally to what the kids do, rather than
stepping back and recognizing the age difference. He reacts as though they did or acted a certain way on purpose to bug him. Understanding his emotions and being able to
stop and think isn't always easy for him because of his TBI.
These are just a few of the challenges we face. Living with a person who suffers from a
TBI is hard. It's
damn hard I'm not going to lie. Jake and Trace become angry when daddy forgets their
birthday or that he was going to play hockey and now he's too
tired because everything we do all day long requires
brain power and his is used up and now he needs to
nap. Or how come daddy can remember lyrics to a song but not that Jake has a judo at four o'clock? The brain
remembers what it wants to remember, it's a
mystery doctors are still trying to figure out.
Sometimes I get
lonely. I married my
best friend. But if I'm down or low or feeling upset, so is Corey. So much to the point he reacts just as angry or upset as I do and it's as if I'm not allowed to
share those feelings with him, hiding them in the way I do the boys so they don't see mommy crying or upset or angry because
kids need to be kids and they don't need the
worry.
Sometimes with
Corey it's the same. And then even when I do
share my feelings, which we talk about everything, even though I know it will be
forgotten the very next morning what I said. The
loneliness becomes a
blanket of hollowness inside of me. But because I love him I understand this is part of his TBI, I work through it, talk to friends about it and try to find ways to cope and help him because it's the disease that affects and causes Corey to do some of the things he does, not Corey himself.
Corey is a
special person. One of the most special and
unique people I've ever known. He's strong and confident (
most days) and can
handle things better than people realize.
He is loving and
compassionate. He has a wonderful sense of
humor and plays with the boys in a way most dads don't, becoming a
child himself at times. He always
hugs and
kisses and says
I love you when they do. He's open and
honest in talking with both myself and the boys about his brain injury, answering any questions they have or tries to ease their fears he won't forget them.
Because Corey
forgets each day together is a
new day. There are no real
grudges in our house. We live, love and forgive and
start each day as new because it's new for daddy.
Yesterday is
gone and he's taught both the boys and myself to
cherish each morning
sun as it rises and each
moon that glows at night because tomorrow is another day and today is all we have. Here and now... that is what he says.
The boys understand it and love being able to live each day without carrying their past regrets with them like baggage.
Corey says what he feels without worrying about what others think. Many of us pause, lie, fudge the truth worried we may
hurt someones feelings and we are so worried about tomorrow.
Because Corey forgets today and tomorrow is new; he's very
honest with people about his feelings (
respectfully) of course, but he doesn't
worry how what he says will affect anyone. It sounds
selfish I know but it's actually very
freeing to live that way. The
connection you make to others that way is very
rewarding.
Besides, he can't help it. He speaks from his
heart with the ability his brain
allows. And for that I love him.
He finds
humor in everything. Many people with
disabilities cannot be made fun of. Corey is the opposite and has often been the
butt of many jokes from our family and friends and even me
(sorry babe) about his
forgetfulness and how he is and the things he's done. He's a good
sport about it.
Guess it helps he forgets the jabs the next day
LOL.
The hardest part of living with someone who has a
TBI is explaining to others. My parents, friends and family don't always understand.
"What do you mean he's sleeping, it's two in the afternoon!"...
"How could he forget to pick up Jake from school?"...
"Why is he so hard on the kids? They are just being kids."...
"Why does he make it sound like he knows stuff?"...
"How come he can't remember what I just asked him do?"...
I'm
tired of explaining it. I'm tired of people
frowning upon him because he feels too upset if too many kids are in the house and it causes his brain to hurt and he can't
cope and they don't understand.
I'm tired of
feeling alone and as if there is so much
wrong with Corey because of comments people make, instead of what is
really wrong, the
inability of people to understand what living and loving someone with a
TBI is truly like.
Corey I love you baby. I'm sorry we had a fight. I'm sorry I get upset because I think you should be like everyone else and just buck up and face things, deal with the kids like I do, face things like I do and God for being angry because you don't remember things like I do.
You are a good man. You are loving and kind and we will make it through the rough patches, together like we always have, you and me babe.
The boys love you. I love you. Don't blame yourself for what you don't remember or can't handle. It's who you are and we should all just shut up and understand that, especially me.
I love you cowboy. Tomorrow is a new day!
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