Sunday, December 28, 2014

Speaking Candidly About TBI (Traumatic Brain Injury)

I try to stay positive about our situation. I really do. But sometimes it sucks.

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

"A smooth sea never made a skillful sailor"

I haven't blogged in a while. Between my husband's boat schedule and then a series of crappy events, life has been in a bit of a tailspin. In other words, shit hit the fan.

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. (2016 update: Some significant things that had happened onboard the sub came to light after this and that definitely contributed to his brain injury.)

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.
The amnesia and disorientation persisted for roughly 5 hours at the hospital. During that time my husband had a CT scan, chest x-ray and was vomiting from the head trauma. He began to become more aware and remembering basic things like his name, age, year etc. The Dr. was originally going to keep him, but since there was no bleeding in his brain, they discharged him early in the morning with the diagnosis of a Severe Concussion and Cervical Strain.

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.

Well, shit.

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

Zayne finally did it! He donated his beautiful hair!

I took Zayne to my hairdresser today to have his hair cut so he can donate it to Wigs For Kids. We started growing it when he was 3, when he was 4 he said he wanted to grow it long enough to donate. So we did! We waited long enough so that when he donated he would still have enough hair left for it to be on the longer side. He was so excited to go and have it cut for donation today. He kept talking about wanting to give his hair to WFK for them to make a wig for a little girl or boy who has lost their hair. He also said he wants to grow it again, so he can donate again.

He is just really such an awesome kid. He said he misses his hair, but he is so happy he donated it. I'm proud of him.

I bonus for him.... He thought my hairdresser was cute... haha.

OF COURSE I took photos!


Saturday, May 17, 2014

A Warning To Parents

I wanted to put this out there because I let my guard down and was not as aware of my surroundings as I usually am and what happened was an eye opener.

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

Beautiful Innocence

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

And just like that... You can't look at dolls quite the same way.

I walk upstairs to check on my younger 2 who are playing nicely together (shocking) with the dollhouse. I listen outside of my daughter's room for a few minutes. She makes her dolls talk with this voice higher than her own.
Then... I hear her doll say this.
"No, I don't have a gina (vagina). I am a doll and they just gave me nothing. I can't even go pee pee."
I went into my bathroom and laughed so hard I had tears. We all know that toys are generally without identifying sex organs, but there is just something so amusing in the innocence of a 4 year old having obviously taken notice of this.
My kids sure do keep me entertained.

Sunday, February 23, 2014

Moments Like This

Moments like this are the ones I treasure. They are so far and few with how demanding my husband's schedule is. I hope that my children remember these moments always. I know I will.

"A truly rich man is one whose children run into his arms when his hands are empty." - Unknown

Wednesday, February 19, 2014

Being a Parent is Terrifying

Being a parent is terrifying. It is also amazing, rewarding and the best thing ever. But really, it is terrifying. It is scary and stressful and... hard.

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.

Thursday, February 6, 2014

My Appeal To Everyone: Please be less judgmental of anything different than what you believe

I always fear blogging about Atheism or the fact that I am Atheist. I fear losing wonderful followers because they might be deeply religious and uncomfortable with me being the way that I am. This post came to be, because of a blog post by a fairly popular blogger. I do not plan for this to be a rebuttal or to even directly address his post itself. I just want to address some overwhelming assumptions and stereotyping of what he, and judging by the responses to his post, many others believe about Atheists.

I will clarify right now, that I am not claiming to speak for all Atheists. I am speaking for myself, my husband and all of my personal experiences with many Atheists in my life.

Atheists are not "Anti-Christianity".
As an Atheist, my personal belief is that the bible is not a factual encounter of history. I do not believe there is a God or Jesus. However, I do not think there is anything wrong with anyone who does believe in those things. I don't argue it. I won't argue it. I feel that people should believe in whatever makes them happy/fulfills needs that they need filled.

Atheists are not all on a crusade to take down organized religion.
We just aren't. Sorry. There are definitely Atheists who take a stand against anything religion, but they are a very small group. Just as not all Baptists are like the Westboro Baptist Church and not all Mormons are like Warren Jeffs and the FLDS community. There are "extremists" in every organized religion. I don't consider Atheism a religion, but it can be loosely lumped into that category for the sake of argument. 

Atheists do not lack morals.
Christianity does not equal sound morals and Atheism does not equal lack of sound morals. Atheists are just as capable of morality, good will, compassion, empathy etc. without the guidance of a diety, a bible, scripture, so on and so forth. We prove this every day by living our moral lives, displaying kindness and caring for others.

Atheists do not worship Satan.
We don't believe in him either.

I could go on all night, but what it really boils down to is, the only difference between us and the devout Christian across the street, is the fact that they believe the bible and believe in God. We just don't believe it is true. That's it. We have different beliefs. It is really not all that controversial when you look at what it is, instead of looking at all that it isn't.

Instead of being a "closet Atheist", I have decided to be open about it, so that I can show that it's really not a big deal. I know it sounds kind of silly, but the judgment, assumptions and people being blatantly intolerant is hard to swallow sometimes. Especially when it comes to my children.

When people say that Atheism or the lack of religion is what is wrong with this country every time there is a school shooting or a similar horrific event, it stings a bit to realize that my family is looked at as "the problem" with this country. We are good people. We are raising our children to be good people. It IS possible without religion. I promise.

I don't want to have to explain each year why we think we have the right to celebrate Christmas when we don't celebrate it for religion. (But the answer is, it is a largely commercialized holiday that both my husband and I grew up with and we celebrate it for family togetherness.) It is annoying to try to explain why I have 6 children even though I'm not part of a religious group that is known to have many children (Yes, people ask this.) It hurts when people say that our children can't possibly be raised with sound morals and to be good people without a religious foundation. It is frustrating when people say that a marriage will never last, can't be strong and is not worth anything without Christ in it.

I'm an odd ball in pretty much all areas. I'm a homeschooler and a large majority of homeschoolers in the US are some form of Christian (It is even challenging to find secular curriculum for homeschoolers.) We have what is considered a large family and people often ask us if we are Mormon or Catholic. My political views vary from "Republican" all the way to "Liberal", depending on the area in question (I support equal rights for gays. OH EM GEE! I must be a liberal!). There is no Atheist Cookie Cutter.

Please just give us a chance. Please don't let our religious beliefs affect how you view us. Please don't lump us all into the Westboro-like weirdos of Atheism. We are people. Human Beings. Not the sole destroyers-of-the-nation.

Tuesday, January 28, 2014

Valentine's Day Pictures

I never take pictures of the kids for Valentine's Day, so I decided to do it this year! It was a quick spur of the moment "shoot".

Ahh they are too cute.