Friday, January 30, 2015
When someone looks "fine" or "ok" and acts seemingly "normal", it's hard for people on the outside to really comprehend the struggles they are facing on the inside. I'll admit, it's even hard for me, the very patient and understanding spouse of a man with a moderate TBI to understand some days. And some days, truthfully, it's exhausting.
Only those who are the closest to them, really see the daily obstacles. Those on the outside have difficulty seeing past the initial observation. I have helped my husband through seizures. I have watched light-hearted conversation with friends or family take every bit out of him and him need to sleep after. I've watched him fight to hold it together while the normal daily workings of our household start to overwhelm him. I've watched crippling anxiety prevent him from being able to watch our daughter open her gifts at her 5th birthday party or seeing someone at the store sending him into a full blown anxiety attack and having to go right home. I've ridden the daily emotional roller coaster with him. I've held him through some really low, lows. I'm there to constantly remind of him things he can't remember... I'm kind of like his right leg. He could live without me and get by ok, but having me here to lean on makes it a whole lot easier to keep walking.
Whether we want to admit it or not, Traumatic Brain Injury affects our daily life, in more ways than one. From daily tasks to relationships. We all just keep on pushing forward though. In the ideal setting, such as the TBI program my husband was part of, everyone gets it. They understand that there is so much more beneath the surface. So much more. However, in the real world, there are individuals walking around recovering from brain injuries all around us and we don't even realize it. They have to navigate a brash, impatient, unsympathetic world, while appearing to be "normal", all while dealing with a brain that has it's wires crossed. There is no magic pill to just make it all start working right.
I think one of the most frustrating things for both survivors and caregivers is when people say "He looks just fine." or "She looks like she is all better now." Looking fine or better on the outside is not an accurate reflection of what's going on, on the inside. For me, I take comments like that very personally, because my children and I are here experiencing the daily struggles along with him. I feel that it not only minimizes what he is going through, but it minimizes what we are going through as well. This certainly isn't an easy road to walk for any of us. People see the smiling, maybe even upbeat man they are having a short conversation with, but what they don't see is the anxiety, sensory overload and often emotional unraveling that comes after. It's like he's holding his breath and just waiting until the conversation is over to relax and breathe. It's an inner struggle, which I imagine is partly comprised of pride, that makes him force a certain appearance with most people. Those who are the closest can see subtle differences despite that, but most others, don't.
My husband is still who he was... but he isn't. Some days I see a beautiful glimpse of our "old normal", but our "new normal" is what we are living with and we have come to terms with that. We appreciate the moments when he is able to be a little like his old self though. Even if it's something as little as getting through a shopping trip without having to leave abruptly because of anxiety or sensory overload. That little thing, is actually really significant to us. We definitely stay home more. He needs naps almost daily. He forgets things every day. He's here though, and mostly healthy. For that I am thankful.
Traumatic Brain Injury in the real world, to put it frankly, freaking sucks. The survivors need to know there ARE those of us who care and understand. All of us right legs... well, we kind of need that too.
Thursday, January 1, 2015
We had our first child with stitches.
My mom almost died in the hospital.
A week after hurting his foot, my husband sustained a TBI.
We lost a large chunk of my husband's paycheck each month abruptly, due to him going on Limited Duty because of his injury.
On Halloween, I broke my foot. The base of my 5th metatarsal to be exact.
Friends have faded away.
Our dryer died last week and has yet to be fixed.
And more... but I suppose this stuff was the most notable.
My husband's TBI has changed everything and has dominated most of our life the last 4 months. This is something we'll be dealing with for a very long time and we are accepting that. This last year has tested us many times. We have persevered and we will continue to persevere. We are strong and only get stronger.
I have an amazing family. My children are amazing. My husband is amazing. The small group of friends who have stuck around through the tough times are incredible. 2015 has to be better. It WILL be better. We don't know what this year will bring as far as my husband's career or his recovery, but I do know good things have to be coming our way. You have to have the rain, to get the rainbow. We're just waiting or our rainbow.
Our hearts are bigger.
Our hearts are more full.
We are grateful.
We are resilient.
We. Are. Resilient.
Sunday, December 28, 2014
Sometimes things are pretty good too. But it doesn't last long.
I've previously mentioned that my husband sustained a TBI. As we move along in this journey, I have learned and realized a lot of things. I realize now, that my husband had a mild TBI from the accident that nearly killed him in 2005, Between Navy Drs. not being proactive and his failure to push the issue because of stigma and worries about his career, he never received treatment for it. Now, so much makes sense. So many things we went through for years makes sense. There is no ignoring his moderate - severe TBI now though. Oh No. Just when a day is going so well, a seizure will sneak right in there. Or anxiety will get the best of him. Or his memory being so bad ruins his day.
Another thing I have quickly learned, is that the Submarine Community severely lacks education on brain injuries. They will educate submariners like crazy about sexual assault and substance abuse, but brain injuries... not so much. The lack of education leads to deep ignorance on the matter. Ignorance that tears an individual with a brain injury right down. The lack of support, the stigma, the false accusations, the shame... It all takes an incredible toll on the person with the brain injury. I don't know if it's a lack of understanding or just a group of not so great people, but my husband was alienated by most of his "friends", he wasn't given the same farewell that other people leaving his boat received (injured or otherwise.) and we definitely weren't given the kind of support that others received. Just because his legs weren't shattered to pieces and he wasn't in a coma, doesn't mean his injury is any less deserving of support. Or any less of an actual injury. And it definitely didn't make it ok for people to falsely accuse him (mostly behind his back of course) of either faking the injury or hurting himself on purpose. (His moderate-severe TBI is medically documented. So you can shove THAT ONE up your ass. He also couldn't have hurt himself like this on purpose. You know who you are.)
You know, TBI doesn't just happen to the person who is injured, it happens to their family. My husband's condition has changed our whole life. We don't know what is going to happen with the Navy, we abruptly lost a large chunk of his pay, which stresses us financially because he had to go on limited duty to be treated, our every day life is impacted by his TBI and while he is still the same person... he isn't the same. I have to take care of my husband during and after seizures now, Our children have to see their daddy have seizures. His anxiety, mood swings, depression, fatigue, cognitive issues and memory issues all effect the whole family in one way or another. I feel overwhelmed sometimes.. he feels guilty... It's hard. It's hard on him. It's hard on me. It's hard on our children.
Lack of understanding... That is one thing that is a huge frustration. Especially from family and friends. Look yall, don't ask my husband every time you talk to him what is going to happen with the Navy. He is already dealing with so much with his TBI and he has other medical issues that have developed from his work environment over the years, he is also dealing with. He has no idea what is going to happen. We all know I'm an over-sharer... You'll know, when we know, what is going to happen with the Navy. And jeebus, stop asking him about him finishing college. HE WANTS TO! He HAS wanted to, but the vast majority of his career has had such an incredibly demanding (this word is just not even good enough for how awful it was) schedule that he was not allowed the time. Right now, he is not in a place that he could do it. HE HAS A TBI. TRAUMATIC, BRAIN. INJURY. He has to go to sleep after doing a half day of menial work or making phone calls. He can't concentrate. His short term memory is horrendous. I'm not sure what else to say for people to understand the gravity of what he is dealing with.
My husband can walk. My husband can talk. My husband can hold a conversation (sometimes). These surface things make him look fine. People look at him and think he looks fine. He does look fine at a glance. But if you look at him, really look at him, his eyes have a sadness I've never seen before. He has seizures. He has difficulty controlling his emotions. He has anxiety, He has depression, He has mood swings, He has severe memory loss. He has trouble articulating. He can't concentrate. He has a lot of cognitive impairment, His hormones are even all screwed up because of frontal lobe damage. None of this he can control. None of this is something he can just "get over" or "push through". He has real damage and real issues. Just looking at him, no you won't see all of this, but the few people who really know him will see a difference when talking to him. But no one sees what we see here at home with him. This is the place where he isn't in a protective bubble, painfully struggling to be "normal". We see all of the problems, We see the pain. We see the anger. We see the frustration. We see the sadness.
This is such a lonely journey we are on. My heart breaks for my husband because he is going through so much. Most of his "friends" disappeared and other than his parents, his family couldn't care less about him. The TBI clinic here on base is the only place that has shown him real support and caring, I try to be his biggest advocate and his biggest cheerleader. I also try to put some lightness into the difficult situations. When he is having a terrible time with his memory and forgets something, sometimes I'll try to make light of it and we can laugh about it.
I'm still trying to find my place in all of this. I feel like I don't have a support system. I do have a few friends who I know will listen, but I feel guilty talking to them about it because I know they don't really understand. It's just a lonely, isolating journey for us.
Traumatic Brain Injury is something that changes lives. I never realized how very little I understood that, until I experienced that life change myself. I don't know all that my husband goes through, I don't know the full extent of his struggle and pain. I try to understand it the best I can though. I'm even trying to understand my own feelings. I've been through almost losing my husband and sometimes this feels harder than that dark time in 2005. But then I realize that it kind of all comes together. All that has happened to him is one big giant weight on my shoulders... on my heart.
Traumatic Brain Injury just sucks.
Saturday, November 15, 2014
My husband's boat started going to sea, so he had been gone and then between underways while he was helping me "winterize" the back patio in preparation of him being gone most of he Fall and Winter, he dropped a gutter stone (the large, HEAVY stone thing used to direct water flow under a gutter) on his foot while moving it (August 31st). His foot was originally thought to have been broken, but they later determined it was not. It was however very badly hurt with deep contusions. This injury prevented him from leaving for the next underway with the sub. The tentative plan was to fly him out to a scheduled port call if it was healed enough to do so. My husband being the man that he is, with the incredible work ethic he has and the pride he has in his job, was pushing himself hard to make that happen.
One week after crushing his foot, he took a terrible fall down the stairs (September 7th). Really terrible. I found him unconscious on the bottom landing after hearing him fall while I was sitting on the front porch (he is roughly 6'2" and 240lbs. It was loud!). I called 911. When he came to, he was very disoriented and had no recall whatsoever. He'd ask what happened and when I finished telling him that he fell, he'd ask again. It was seriously that bad.
When the EMTs, police, duty chief on base and whoever else showed up, he was still on the stairs and in tough shape. They were asking him what day it was, what year it was, how old he is, his birth date, who the president is etc. He wasn't able to answer any of it. He did remember me and the kids. He couldn't remember the kids names or ages, but he remembered we have 6 of them. He kept asking them over and over what happened, the same as he did with me. He also kept asking if the kids and I were okay. It was really scary to see. At one point I had left his side to answer questions, you know, because they had to make sure he wasn't drunk or on something that could have impaired him and caused him to fall (which he wasn't, for the record). When I wasn't by his side to reassure him repeatedly that the kids and I were okay, he started crying and panicking. He was on the stretcher at that point. That was the one moment I almost broke down. In the ambulance he was asking if we were in a car accident and started asking again where the kids and I were and if we were okay. I was sitting up in the cab of the ambulance with the driver (I wasn't allowed in the back with him, so they could fully asses him) and I could hear his repetitive questions, sporadic crying and confusion.
::Side Note:: I am so incredibly fortunate to have the friends/neighbors that I do. Several of them were over here to help in an instant. One followed the ambulance to the hospital to be with me, while others were here to stay at the house with the children. It was amazing.
So here we were. An injured foot and an injured brain. At that point he was still on crutches. He slept that entire next day after the fall. The one person from the boat who we saw that day was pretty insensitive and rude. They were going out to sea the next day and he had to check into his temporary assignment. The weeks that followed consisted of me driving him to and from different places on the base. Dr. appointments, squadron (where was was temporarily attached to) etc. It quickly became apparent that his symptoms from the head injury were not resolving themselves and he was referred to the Neurologist on base at the TBI clinic. To this day, he still had no memory of the day he fell or the day after. So we don't actually know what happened. We just know he landed right on his head, hard.
He was diagnosed with a moderate-severe (basically on the high end of moderate) TBI. Traumatic Brain Injury.... that is one of those things I always associated in my mind with war. Bombs, bullets, that kind of thing. The Dr. put it into perspective for me. A closed head injury caused by blunt force trauma is the same on the inside. The brain still slams around and sustains injury whether it was a car accident, a fall or the force from a bomb. This was also my husband's 4th or 5th head injury, between football in high school, his bad accident in 2005 and slamming his head working in the sub. That increases the potential for it to be more serious and cause permanent damage.
We have since been learning, as a family, to adjust to the pretty prodigious impact it has on his daily life and ours. I have learned so much about TBI. I wish I had educated myself when I knew others who were dealing with it. There is just so much I didn't know and didn't realize. The symptoms.. oh the symptoms. With the TBI came hurtful rejection by people who he thought were friends, rumors on the sub he was on and all of the TBI related symptoms. But together we are learning, adjusting and pushing forward as a family. We're working through a huge host of symptoms from seizure activity, to anxiety, to cognitive impairment. He participated in a 4 week long program for TBI and PTSD and is under continued care of the Neurologist and some other medical professionals. I guess we'll see what other diagnosis we face as time goes on. Perhaps I'll even make it a point to continue to blog about it.
Oh but wait... there's more. On Halloween, after coming home from taking my husband to have an EEG done, I stepped out the front door, rolled my ankle hard and broke my foot. I BROKE MY DAMN FOOT just walking out the front door! Rolling my ankle broke the base of my 5th metatarsal on my right foot. Did I mention it's my RIGHT FOOT? So I can't drive either.
We have Tony's recovery which is a huge thing, Wyatt's ongoing issues we're seeing a new urologist for, Cameron needing to see a new allergist, Alex's quarterly endo visits and now me needing to be under ortho care for my foot. We just have all sorts of excitement going on around here. I'm anxiously awaiting some good things to come our way. I guess we'll just look at it as becoming some real skillful sailors in this sea of life.
You bet your booty I sage smudged this freaking house this past week when I was able to hobble around enough to do so.
"A smooth sea never made a skillful sailor."
Monday, May 19, 2014
Saturday, May 17, 2014
Tonight on our way home from an outing with the kids, we stopped at Whole Foods in Glastonbury, CT for some things we needed. While shopping we noticed a man, probably in his 50's, with a nice camera (you know I like cameras!) kind of slung across him like a messenger bag, with the camera resting on his hip. I didn't think too much of it, I often carry a camera. It was getting close to closing time at the store, so I stopped at the end of an isle with my kids while my husband went and picked up a couple of other things we needed in various isles. I noticed the man, standing at an end cap looking at his phone. I glanced down to the camera and noticed the lens cap was off. I thought it was odd, but was quickly distracted by finally finding yogurt Cameron can have (Dude! Almond Dream makes some! SO Delicious brand does too, but they have rice starch in it, which he can't have.).
Unbeknownst to me, my husband had already been picking up on something amiss with this individual. He spotted that the lens was focusing. When he noticed him on the end cap across from me, he went down an isle and was watching what he was doing. He was using his phone to control his camera (For those of you who are less tech savvy, this is a pretty common feature now) and take photo after photo of the kids and I, while previewing them on the phone. My husband called my cell phone from down the isle and told me the man was photographing us. I quickly walked the kids and I over to my husband to make sure he as CERTAIN. When he said he was in fact certain and that he saw the photo previews on the mans smart phone, I went all mama bear and made a b-line for the man, who had moved down the isle he was near, still looking at his smart phone.
I quickly (and perhaps a bit angrily) confronted him, asking why he was taking photos of my children and myself. He sort of stumbled on his words for a few seconds and I could tell he was about to deny it. I cut him off, told him that photography is my hobby, so I KNEW he was photographing us and that I could see the lens focusing. He nervously started explaining how he was just getting into photography, taking a class etc. and that he likes to take candid shots, but people get weird about being photographed, so he was trying this so he wouldn't upset people.... Then he made a few more excuses and told me a story about taking photos of something in NY and a woman was upset she was in the shot, called the cops on him and he was made to leave. It was clear I was not happy and he said he could delete them if I would like. I told him I absolutely did want them deleted. So in front of me, I made him delete all of the photos of my children and I. He had a good 20 or so of them. I suggested that if he wants photos of people out in public, he should ask them. I let it go after that and we went on our way. The man pretty quickly checked out and left.
After arriving home, I felt increasingly uneasy and at the suggestion of several friends, made a call to the Glastonbury PD. They basically didn't care and said since it wasn't happening right then, there was nothing they could/would do. (I thought maybe they'd do a report or something. Maybe ask questions? I don't know... Silly me.) The detective sounded annoyed.
This man was secretly photographing my children and I. He was standing there, facing a different direction, while looking at his smart phone... appearing as most of us do. He was going to great lengths to take these photographs undetected. He made it appear as if he just had his face in his smart phone enthralled in something, when in reality he was snapping high quality photos of my children without my knowledge. I'm a bit upset with myself for not being more aware and in tune with my surroundings. This experience tonight was honestly a bit scary. Here you have it, one more thing for us parents to worry about. As if cell phone cameras weren't enough of a concern.
If YOU happened to be at the Whole Foods in Glastonbury, CT this evening (May 17th 2014) between 8 and 9pm, some guy just might have a photo of you.
Thursday, March 20, 2014
Today my 4 year old daughter was playing with her princess dolls. The princesses were flying around with a jet pack, they were chatting about the sites, discussing their different dresses and they were getting married. Bell and Cinderella were getting married. Lots of little girls make their dolls get married.
In that moment I realized how beautiful such a little thing is. In her innocent world there is no gay or straight, there is no fight for marriage equality, there is no difference between loving the same or a different gender, there is no difference in skin color. In her innocent world love is love. People are people. It really is beautiful. I don't want society to take that away from her. My husband and I are raising our children in such a way that they know there is nothing wrong with same sex marriage, there is nothing wrong with being gay, we are all people and we all deserve the same love, respect and rights. I wish we didn't even have to teach them that though. I wish the innocence, the complete lack of bigotry they were born with and the view that we are all the same, wasn't tainted by the prejudices of society.
Wouldn't the world be so much better if her innocent world was what our reality is? I think so. We should all learn from the innocence our children are born with.
Monday, March 3, 2014
Sunday, February 23, 2014
"A truly rich man is one whose children run into his arms when his hands are empty." - Unknown
Wednesday, February 19, 2014
This morning I had read that the 10 year old little girl Hailey Owens, who there was an Amber Alert issued for yesterday evening, was found dead. She was kidnapped just blocks from her home, walking home from a friends house. We all know these things happen, but this story was a harsh reminder that it is real and it can happen to anyone, anywhere. Even our children. Even mine.
A couple of weeks ago my older 3 boys (11.5, 9 and 8) were across the street at the park. I looked out and saw my 8 year old chatting it up with an older man. I hurried out there to make sure there was nothing shady going on. The man was harmless, he was there with his grandson. But what if he wasn't harmless? I had a sick feeling realizing that my 8 year old is still so innocent. He didn't think twice about telling this man his name, his birthday, about his siblings etc. The older 2 boys were there close by (I tell them that they must stay together), but didn't try to interfere with the conversation. That was a slap right in the face of reality for me. I have talked to my children before about being careful with strangers. But I obviously had not talked to them enough.
After reading this story about this little girl, I called the older boys into my room to have a talk with them. I told them about her. I talked to them about how to be safe. What to do in different situations. We just talked about all of it. I told them that I don't want them to live with fear, but that I just want them to be aware and use some caution. For me, it has always been important not to shelter my children from reality, even the harsh things. I do not shove it in their face, but I try to give them just enough exposure so they are not sheltered.
We all need to do this. You... you need to do this. Have another talk with your kids. They need to be reminded. I know my 8 year old sure did.