Sunday, March 31, 2013

Looking Death in the Eyes...

As I have said before, I am a nurse. I work with nuclear and uranium poisoned patients. Lots of them are war veterans and others are old uranium miners. Most, if not all of them, have severe lung problems and struggle to breathe every second of every day. I am usually here to help them live their every day to day life. Today, one has chosen  a different road. I am now here for him for a very different purpose. Hospice. I am simply here to make him comfortable. I am no longer here to help him with his day to day life. I am here to help him die as comfortably as possible.

It is a very unsettling feeling, looking over at this man I have grown quite fond of over the past year and a half, and know I am helpless in the outcome of his health. Everything I have been taught in my studies and work have just been thrown out the window as of today. My patient has decided he no longer wants to fight the battle. He wants to rest. Who can blame him? He's been fighting for years and still been sick most of the time.

As I sit in this chair and look over at this man lying in bed, I am literally looking death in the eyes. I can see it is not long until life no longer flows through this mans body. The feeling in the room is strange and I find myself afraid to witness his passing. It would not be the first time I have watched a person pass from this life to the next, but it would not make the moment any easier. Many are afraid of dying or watching someone die. Both do not scare me. At least I thought so until today.

Today I am afraid. I do not want to see this man die. He is kind and loving. Today death scares me. The feeling in the room is the same as it always is for me when someone dies. Cool, Quiet, and lonely. No matter how many people are in the room that is how it feels to me. I don't know how others feel, but this has been my experience. Today my stomach is in knots. I don't want to be in charge when he passes. Inside I still feel like I am seventeen and should never be left in charge of anything, ever. I hate that we have to grow up....

Since I have been in the health care industry I have witnessed 3 people die. When each person has died of course, I sobbed, and then I really start to reflect on my own life. This time, it is different. I know the entire family and patient. Looking death in the eyes makes me realize how unprepared I really am.

As I have talked to each patient over the years, there is one thing they will always say, "Enjoy your kids while they are young". Have any of you noticed that that it usually almost everyone's biggest advice? Maybe it is just me, but, that is the advice I ALWAYS get. SO---as I sit here looking across at my dear friend, with hardly any life left inside of him, his advice is like gold to me. A dying man's last words of advice is about his family. His lasts words of advice is about his kids.

So now, as I look over at my sleeping patient, I finally realize why I am terrified. I am terrified it is going to be me in that hospital bed. It is going to be me giving out the advice and telling my stories of regret. All I want now is to go home and squeeze my babies and be grateful for the love they bring into my life.

Sometimes it might be good for us to look death in the eyes. Face our fears and fight the obstacles life throws at us. Maybe we should treat everyone like this is the last time we will ever see them. Give them a big hug because this is the last chance you have to give them one. Say the thing you always wanted to say. (but were always too afraid to say it.) Stand up for yourself when you never had the courage to do so before.

When death stares at you, you can't help but stare back. You can't help but reflect on your own life and think, "Would I be satisfied if it all ended right here? Right now?" It's a definite "NO" for me. I am going to take my old friends advice and run with it. "A life full of regrets, is no life at all." I'm going to enjoy everything while they're young!!!

A world where drills like these exist.....

I have worked two graveyard shifts in a row and my sweet little Lexi comes running out of the house to greet me upon returning home from my 12 hour shift. To say the least, I am exhausted. I am now not prossessing things in my head correctly. I need sleep. But I am so happy to see her happy face.

She hugs me and immediately says, "IT"S DRILL DAY!!! Did you remember?!" I look at her perplexed. Of course I did not remember. It was the furthest thing from my mind at that very moment. "Um.....No. I did not remember it was drill day." She looked at me half disappointed half shame-shaming me. I looked at her desperately. "Come on Lex. You gotta cut me some slack. I'm not awake. What do I need to do?" She tells me all the things I need to do and I am immediately bugged. Seriously?! Chase gets out at 10:45 AM and Lexi at 1:15 PM. I need to personally check them out of school or they will not be released. I realize it is a drill because of last December. (the Sandy Hook Elementary School massacre.) Although I think it is a very needed and fantastic thing to be practicing, I am still so put out it is today of all days. I am tired and grumpy. I so don't need this today. Between picking up the two, sleep will be short lived. I struggle to fall asleep.

I end up only sleeping an hour that day. I have gotten chase. I didn't have to check him out. Picking him up was quick and easy. I had no idea what I was in for with Lexi. No idea.

Lexi calls me from the school. I am late. I feel terrible. I hurry and drive over to the school and cars are lined up all around the school and parents are walking into the school from far distances. I sigh and park. I am far away from the school. It is a walk to get there. I am still thinking very selfishly.

Then suddenly a flash. I see a mother desperate and devastated on the phone standing by her parked car in front of an elementary school. An elementary school that could have so easily been my child's elementary school. A picture I had seen from the December Sandy Hook Elementary Massacre. A picture I will never forget.

Reality was sinking in. This was a drill in case someone came to hurt my child. This is me coming to see if my child is alive after the unthinkable has happened. My heart sank and began to ache. Do I really live in a world where we actually have to practice these drills? I turn the corner and see a humongous cluster of students and teachers in parallel lines. Teacher's with clip boards in hands and each child's name on the list. The scene is so disturbing to me, I begin to cry.

Crying for the mothers who turned that corner and went to that teacher with that clip board and their child was not on that list. Just the panic I felt wanting to get my little girl home was horrible enough. I went straight to Lexi's teacher and Lexi raced into my arms. Instant peace. I love this little girl completely. I need her in my life. Only then could I calm down. But the tears would not stop. I felt sick inside for those mothers and fathers who came and left with those same feelings.  Feelings of panic and pure terror that the worst has happened to their child. I felt the tiniest bit of panic and I thought I would burst.

I do live in a world where drills like this exist.

Our Elementary did an exceptional job in their drill. They would not release ANY child to anyone but a parent or a guardian. Those teachers knew their kids and knew their parents. It was amazing to see the organization and knowledge they had about their students. I felt comforted in this drill despite how disturbing it was to me. The reasons for why we have this drill is an absolute nightmare. But--I am so grateful they did this drill. It is a harsh truth. I hope the reality never comes to anymore schools in this world, but, we all know that will never happen. We have to be prepared. Thank you to our Elementary.  

I am crying for my babies. I am crying for those innocent children and those brave teachers. My heart, my love, my tears, my thoughts, my prayers, and my entire empathy as a mother goes out to all who lost their sweet baby. My gratitude, love, and faith in the good of people goes out to the teachers that died for those sweet children. The world is truly a lesser place without them in it.

Thank you to those family members who have stood up to be heard and made it known we need these drills in our schools. Because of you my child is a little safer. Your pain will not be in vain. You have made my child's school a safer one. Thank you from the deepest part of my heart. Here is a list of those precious angels and their strong teachers. Thank you again to those family members who are taking a stand against gun violence.

Charlotte Bacon (2/22/06), 6 years old, female
Daniel Barden (9/25/05), 7 years old, male
Rachel Davino (7/17/83), Staff member, 29 years old, female
Olivia Engel (7/18/06), 6 years old, female
Josephine Gay (12/11/05), 7 years old, female
Ana M. Marquez-Greene (4/4/06), 6 years old, female
Dylan Hockley (3/8/06), 6 years old, male
Dawn Hochsprung (6/28/65), Principal, 47 years old, female
Madeleine F. Hsu (7/10/06), 6 years old, female
Catherine V. Hubbard (6/8/06), 6 years old, female
Chase Kowalski (10/31/05), 7 years old, male
Nancy Lanza, 52 years old, female (mother of shooter Adam Lanza)
Jesse Lewis (6/30/06), 6 years old, male
James Mattioli (03/22/06), 6 years old, male
Grace McDonnell (11/4/05), 7 years old, female
Anne Marie Murphy (7/25/60), Staff member, 52 years old, female
Emilie Parker (05/12/06), 6 years old, female
Jack Pinto (05/05/06), 6 years old, male
Noah Pozner (11/20/06), 6 years old, male
Caroline Previdi (9/07/06), 6 years old, female
Jessica Rekos (5/10/06), 6 years old, female
Avielle Richman (11/17/06) 6 years old, female
Lauren Rousseau (June 1982), Staff member, 30 years old, female
Mary Sherlach (2/11/56), Staff member, 56 years old, female
Victoria Soto (11/04/85), Staff member, 27 years old, female
Benjamin Wheeler (09/12/06), 6 years old, male
Allison N. Wyatt (07/03/06), 6 years old, female

What We Have Once Enjoyed We Can Never Loose

This post is dedicated to my Grandma Ogden. I am so sorry for your loss. I love you. I miss you. I can't wait to give you a big hug. This is also in memory of my Aunt Donna.

One Christmas instead of giving gifts I wanted to give a memory to my family. I think there is no better gift than a cherished memory.  In our family Jesse, is a cherished memory. Sometimes in life that is all we have left of someone. A cherished memory. But that is what I love about memories. That is what I love about the heart. All those who leave us in this life live in us. They become a part of us.

There is a famous quote by Helen Keller that says, "What we have once enjoyed, we can never loose, all that we love becomes apart of us." It is a quote that really made me stop and think. It made me stop and think because it was so true. I am who I am today because of the people who raised me. I am who I am because of the people I have loved and let into my heart. They are a part of who I am. Even in death I will not loose them. They remain ever so close to me. They remain in the deepest part of my heart. The part that loves, cherishes, remembers, and knows that this is not the last time I will see them again. The part that gives me hope and strength. Strength to endure the pain I may feel in their absence.

So on Christmas Day instead of giving gifts I wanted to give a memory of Jesse to my family. I remember being so scared to share it with everyone, just like I am to share it with you now. But I felt as time was going by my memories were starting to fade. So I decided to write them down. You never realize how beautiful a person is until you write down everything you love about them. Try it one day. If there is someone you admire, write down what you love about them. You will be surprised how long the list is. Appreciate them while they are here.

When Jesse went missing I thought a huge chunk of my heart was taken away. When in reality,  he just moved in. My heart swelled with love and admiration for him. It was overwhelming. Every memory flooded my brain. My love for him is stronger now than ever before. He is a part of me. I am so blessed to have been his sister. My time with him was short, but he was worth every second. I will take this pain just to know him. I am a better person because of my sweet brother. Here is the Poem I wrote describing who Jesse was.

JESSE
Beautiful brother
beautiful friend
Beautiful soul
Beautifully complicated
 faces shine when he enters the room
No matter the topic
Humor is never far from his lips
Joy whenever he is near
Spontaneously stupid
Crazy fun
Unconditionally loved
Amazingly witty
But surprisingly tender
Always a comfort
Always understanding
Always a gift to be around
Grateful to know him
Grateful to love him
Proud he is family
Never knowing his own beauty
But always seeing others
His absence piercing
But his spirit strong
His love all around us
His memories treasured
His laughter cherished
His beauty incomparable
Together again
Our Family Forever

For all those who have lost a loved one, from the deepest part of my heart I wish you comfort. I pray that you find peace in your sorrows. I am never one to say the road is easy all that matters is that you keep getting up. Doesn't matter how many times you fall, how gracefully you got up, it matters you keep getting up and you cross that finish line. Remember, "What we have once enjoyed we can never loose, all that we love becomes a part of us." 

Grandma Ogden---I love you. I am so sorry about Aunt Donna. Please know you are in my thoughts and prayers. Love to all my family at this time. You guys are the best!!!

Wednesday, March 27, 2013

That Did Not Just Happen....

This really did happen, all in one night, and all to me.

Stomach Flu---A Mother's Worst Nightmare!

Kirt, my husband, was coaching my sons soccer practice right around dinner time. Lexi got a little cranky and said, "My stomach hurts!!!" So naturally I think, "Oh my gosh! What a baby! I swear I feed my kids every hour and they are still hungry!!!" So I load Lexi, Beckham and my friend Britney, in the car, (poor Britney came along for the ride). We decide to go to Arby's just down the rode to get the kid's Dinner. By the time we get to Arby's Lexi is practically screaming that her tummy is killing her. Britney and I decide she may have diarrhea by the way Lexi has described her pain. I swerve and park asap. She looks as though she might explode. All three of us are in a panic. I get her out of the car and we are running to get into Arby's. I am pulling open the door into the main lobby of Arby's and Lexi starts to cough. It is the barf cough. "Oh no." I think. "Run!" I shout. And we run to the grass in front of Arby's and State Street. By now, I am practically carrying her. It's too late, she is barfing on my arms and hands. "Whatever." I think. People are driving by and watching my poor Lexi barf. I actually saw one girl see us and turn away and dry heave herself. I couldn't help but laugh.

With nowhere to wipe my hands but the grass and my jacket I smell wonderful. I didn't dare go into Arby's. They were already unhappy with the mess we left in front of their building, I knew coming inside would be pushing it. By now I am feeling really bad I thought she was faking the tummy ache. I picked my pale faced little girl up and put her in the car. I still went through the drive thru and got food for the kids. That was fun. Poor Britney pretended she couldn't smell a thing. WOW! What a good friend.

So, Lexi is very sick by now. It is tax season and Kirt is an accountant. He was gone the rest of the night. I have no idea where. Landon tells me his tummy hurts. By now, I believe my children. I learned my lesson. As he was saying "My tummy hurt's" he let out the most beautiful burp and barf splashed all over my bare feet. I thought, "Awesome. It doesn't get any better than this." Cute little Landon looked up at me with his blue, blue eyes and said, "Oh, mommy, I barfed on you......I'm sorry." As much as I was grossed out, it was totally cute. After this night, my kids were lucky they were so cute......cause they had nothing else going for them......kidding. I really do adore my kids. I'm a really sarcastic person......I'm sure if you don't know me my posts do not translate very well:)

I clean and wash off my feet but still I have not showered. Gross huh? I know. But you know when you don't shower for the day because you know you are going to be cleaning all day? That's how I felt.....I just knew the night was not over.....I knew there was more barf to come. It was pointless to shower.

I decided to make all the kids sleep upstairs in one location. This way I could sleep by all four of them and we could have a community barf bowl and I could get to all of them in one swift movement. So, I set up our big blow up mattress. We watched a movie with no problems and all fell asleep but the youngest. Cute little Beckham. He was being so cute! He had his head on my shoulder and he just kept talking to me. We talked about the dog and the cat. His favorite color. How much he loved his dad and then BARF!!!!! All in my face and mouth. THAT DID NOT JUST HAPPEN! No way.........I am in complete shock while I accidentally swallow a little of my child's barf. "Ok. That did just happen" I thought. I sit up. Beckham is un-phased as he giggles at the sight of his mother's face covered in his previously eaten dinner. The only words out of his mouth is "Mommy, yuck" I slowly get up and am so grossed out, I laugh. How can this night get any worse? "It can't", I thought. The worst is over. I wash off my face and mouth. Amazingly, because my hair had been tied back, the delightful mixture did not get into my hair. Still no shower....totally gross. I KNOW. WHY??? I still felt deep down inside, there was more. More that these little monsters had for me. (and by monsters I mean beautiful lovely children.) I change the bedding. The rest of the night it was Chase's turn. All he did was dry heave. Poor guy had nothing in him.

Now, you would think that is all I have in my family. I would too. But turns out we are both wrong. I have animals too. So I was up until  4:30 AM with my cute babies. AT 4;30 AM my dog River had and ear ache. I knew that because when I finally got to sleep she woke me up with her whining and scratching her ear like crazy. I went to pet her and my hand rubbed into some sticky goo that was leaking out of her ear. That is when I got grossed out. I gave her some doggy pain medication, cleaned out her ear, made a note to get her to the vet, and sent her off too bed.

By then, I was exhausted. I went downstairs to my bedroom where Kirt was, (he got home really late that night). It was pitch black so I had to feel my way to the bed and around to my side. I got into the bed and Kirt asked how everything was. I told him everything. There was a slight pause. "Kirt, did you fart???" There was another pause, "No....did you?" "Um.....No." I said, because he knows I am always proud of my farts and claim them whenever they are mine. I sigh and plop my hands to the side of the comforter. SPLAT!!! That did not just happen!!! I knew what my hand was in before I even turned on the lights. I knew what my hand was in before I even lifted up my hand to move it off of what it was in. I knew what my hand was in as soon as it went SPLAT!!! "*#!*#(*^@#" I said. "What?!" said Kirt. Sounding very annoyed that I kept talking. "I just put my hand in cat crap!!!" I yelled very loudly. "No you didn't" Kirt said. Not wanting to believe he had been sleeping next to cat crap the entire night. "Um....YES I DID!!! LOOK!!!!" I flipped on the light switch and we saw the best sight of the night. It beat all the barf on the hands, feet, in the face, and down the throat by a mile.

Yes. This is when I got the cat and it is still banned from the house. This is when I dry heaved. This is when Kirt dry heaved. This is when.....I did finally give in.......I took the shower of all showers. I scrubbed and scrubbed. I am so clean and yet I feel so dirty. This is when I thought, That there is no way that that day just happened?!!!

Monday, March 25, 2013

Autism-My brother Seth

For those of you who know me, I come from the "Pinegar Bunch". 3 boys and 3 girls. It was a long standing joke in the neighborhood in comparison to the Brady Bunch. That is, until Seth arrived.

Seth was a normal "annoying" little brother, or so I thought. He pulled my hair whenever I came near him, drooled all over the place, and needed a lot of mom's attention. He was developing like all of us did. He was starting to say "mama" and "dada". He was even starting to repeat after mom and dad when they would say the prayer for dinner. Then one day it all changed. It honestly seemed to change overnight.

Seth was about 2 1/2 and Mom had to have surgery. She was down for about 2 weeks and Seth was sent to my Aunt Carolyn's so Mom could heal. (it was a pretty serious surgery.) When Seth came back he no longer spoke. He no longer looked at us. He would not go to my mom. Seth was gone. It was as if the Seth we knew left and an entirely new person came and took over his body.

I remember feeling like I wanted to reach inside of my brother and grab a hold of Seth and where he was hiding. I wanted to reach in and pull him out. I knew he was somewhere deep inside that body of his. How does a person just disappear like that? As a sibling and a child it made no sense to me. I think of my mother. What a nightmare. What a nightmare for any mother. I know I felt like I lost my brother. She must have felt like she lost her son. I want to cry for all you mothers out there who have had to go through this. To have your baby developing so completely normal and then seemingly the very next day they just leave........and all you have is the shell of what they used to be, my heart, love, and adoration goes out to you.

I remember just wanting to scream at him. He would just stare at walls. I didn't understand it. Where was he? Why wasn't he looking at me? I was so frustrated. I was hurting and I didn't know why. He was there and yet I felt like I had lost my baby brother. Why was my mom teaching him things he already knows?

As I grew to understand it, the easier it was to accept. We all tried to accept that this was the new Seth. The new Seth was silent, did not speak, and spent a lot of time staring at things. Seth went to a special school. At this point in time, Autism was in its' infant stages and many did not understand it. Far too many children were being misdiagnosed or simply untreated. To tell someone your child had autism was like saying you suffer from "ambiguous loss". Few understood the entire meaning of the word. But like most things, you would be surprised how many people you know suffer from it. (Just like autism today). There is so much more awareness about autism. People understand it more, and the treatments are so much better.

As time went by, we were fortunate enough that Seth started to respond very well to treatments. Seth began to talk. (People with severe autism sometimes never talk their entire lives.) As Seth began to talk he also, like any child struggling to communicate, would get frustrated.

Seth had a temper. I remember one day in particular, Seth and I got in an argument. Seth loves Video games, books, and TV. He has a great educated opinion. He does not like it if you disagree with him. He is better now. Back then, he was not. I did not like one of his movies that he was in love with at the time. I did not think this would get a huge reaction, but it did. Seth reached into the silverware drawer and pulled out a long, sharp, knife. "AH!!!" I thought. RUN.  And I ran. I ran so fast that I could have beat anyone, anywhere. I was running for my life. He was fast. He was ready to kill me, (figuratively). I ran and had just enough time to get to the bathroom. The only room with a lock on it. I got in and quickly turned to lock the door. As I slammed the door I saw Seth's face. He was furious. I hurried and locked it. My heart was racing. Seth was pounding on the door but it didn't matter. I was safe.

I would not come out for 4 hours. That was when mom would be home. That was when it would be safe to come out. Rule #1-Never make Seth angry.

There would be a lot of scary moments like that. Seth was unpredictable. But--autism gets a bad reputation because of a lot of things on the news. Seth and most other autistic children like him are like any other disabled person. They need help like everyone else. Everyone is unique and one case does not define an entire kind of mentally handicapped people.

In Autism, it is known if a boy has autism, it can range from mild to severe. If a girl has Autism it is usually pretty severe. With Seth we have been very lucky. Seth, in his early years, didn't talk at all. My mother is a first grade teacher. She used that to her advantage and taught Seth relentlessly. She bought special programs and books to help him learn better and faster. Thanks to my mother, Seth is able to communicate to the outside world. You can talk to him and have a normal conversation with him, (for a little bit. Then you must talk about Greek mythology) He is a master in Greek mythology. He knows everything about it. It is fascinating to talk to him.

As a family we have talked about it and have figured Seth's mind has developed and relates best to those that are about fourteen to sixteen years old. In terms of video games and books. He tries to relate to children but simply cannot. He does not understand them. There have been numerous times he has felt threatened by them. In his mind, Seth has told me, that my 6 year old boy Chase scares him. When Chase has tried to play with his Uncle Seth and "Wrestle", Seth will feel threatened. He says he feels Chase could beat him up. He says he feels the need to fight back. And he has fought back. If we are not careful a real fight will happen. Seth honestly feels like my 6 year old is attacking him and could really hurt him. (Seth is gigantic in comparison to chase.) Relating to children has always been a challenge for Seth. He simply does not like kids. He tries. It is cute to see him try to be a "good uncle".

Seth is what you would call someone with "high functioning" autism. He is very smart and his memory is ridiculous. He can quote an entire movie word for word if he wanted to from beginning to end. (without making a mistake.) If I were to recommend a movie it would be "Rain Man" with Tom Cruise and Dustin Hoffman. A classic. If you haven't seen that, you've got problems.....kidding. But it's good. It's about an Autistic Savant. Which is basically someone who is autistic and is a prodigy or genius at something. Dustin Hoffman happens to be good with numbers. That movie reminds me a lot of Seth. I think Seth is that way with video games. That boy should get paid to play video games, he's that good.

There is a lot of speculation on how Autism is caused. I can say I'm a little stumped too. There has been speculation about food allergies (gluten), infections, problems at birth. I want to say it's genetics. I'm a nurse, (LPN), and I'm not buying into the whole immunization thing. I'm pro immunizations. The metal alloy they claimed caused Autism has been taken out of all immunizations. So that should cause some mothers some peace of mind. Now, even though I am pro immunizations, since I have a brother with autism, I was pretty freaked out. I spaced those immunizations out at 2 1/2 years old and watched my kids really carefully. I didn't do them all together. I was so bugged with myself. Because I truly don't believe immunizations cause Autism. But, what mother wants to risk it??? So for all you mothers out there who struggle with the deciding on immunizations, I get it. But---We do live in a great country and are so lucky to have these things available to us. People around the world die from so many preventable diseases. When there was an outbreak of smallpox in Utah I thought we should take more advantage of the great country we live in. We shouldn't count on others to do it for us. But----again, just my opinion. No judging here. I understand the other side of the argument as well. I understand everyone is just trying to do what they think is right for their child. 

I you were to ask my mother, she would say she knew something was wrong with Seth from the very beginning. At first they thought it was muscular dystrophy, and that went on for 2 1/2 years until Autism stuck.

A lot of Autism I have noticed,  is connection. They have a hard time connecting to this world. Most of the time, in the early years with, Seth he was in his own little world. A world you just wanted to yank him out of. A world you just wanted to be a part of. I would find myself wondering how someone could stay silent that long, or stare so steadily and reverently.  My mother said she would notice my brother not maintaining eye contact, even as a tiny infant. She stated that it surprised her that he would not respond to her coo's. By 12 month's he was not babbling. One really big sign was that he would always line up his toys in a straight perfect line. ALWAYS. These are all huge signs of Autism.

As time passed, Seth became the life of the party. Since Seth was so hard to "discipline", if he wore anything we were lucky. When I was in high school, Seth was about 13. I was never embarrassed about anything, so it never occurred to me that it might be awkward for anyone else to see my brother dressed the way he dressed back then.

Seth would go to school and when he got home, he immediately stripped down into nothing but his whitey tighties. At this particular time, I was home. I had brought my 3 girlfriends home with me and we were talking and laughing in the front room. Seth bursts into the front door and begins to strip. (I think nothing of it). I have seen this a million times. This is like you seeing your mother walk up the stairs. I continue with the conversation as if nothing was happening. All my friends did was stare. They could not believe what they were seeing. Seth is a tall and big guy. Not fat, just big. He was 13 then. He was not A "little" boy. Whitey tighties were really snug around this boy. He was even starting to grow chest hair. My friends start to go red. I finally stop what I am saying. I am so confused as to why they are staring at my brother. "oh yeah" I thought. "Seth, you can't strip here. There are girls here." Seth stops and thinks, "Oh. Oh yeah. Ok sis. Sorry sis. I'll be downstairs sis." Then he comes over to me and gives me a big hug. I am sitting in between all of my friends. Seth is just in his whitey tighties. I am laughing so hard. He turns and leaves. "Man! I love my brother!" I think. He just made my day. All 3 of my friends were officially and totally uncomfortable!!! I was loving every second of it! After awhile, we were all laughing. I love how innocent everything is with him. It is so refreshing.

I think of all those mothers who are raising handicapped children. I think of how hard it is. I know my mother cries sometimes at night because she had and has hopes and dreams for Seth's future. Some of the things she wishes for him may never happen. A wife, a college education, a full time job. But--Some of those dreams she wishes may come true. As mothers we hope only for the best for our children. I have to say, to all those who are struggling to raise a handicapped child, how much I admire and respect you. The difference you are making in your child's life is one that will not be forgotten. I truly believe they are sent down to bless our lives. I was just a sister to a brother with Autism. He has taught me so much.

In the beginning I said I felt like I lost my baby brother. But I didn't. I got Seth. I lost nothing. I gained  
Seth. Life would not be the same without him. I have been taught what it means to be truly patient by him. He taught me to laugh and not care what people think. He taught me not to judge people on the outside. He taught me to look deep inside and see what is in people's heart. He makes me see the bigger picture. We have been so blessed to have him in our family.

To all you mothers out there with your special little babies, you are so amazing! I'm so grateful for all you do. Seth is now 21 years old and looking back, I cannot believe that all the times I thought I was trying to help teach him something, he was actually the one teaching me! Thank you, my cute baby brother.

Sunday, March 24, 2013

Ambiguous Loss: Frozen Grief-part 2

I never thought of my grief over my brother going missing as "frozen grief". But now that I think about it, it kind of is. These past five years I've tried everything to unthaw the layers of sadness and they just seem to keep building a thicker wall of grief. I was freezing to death. Not knowing how to deal with the emotions I was having was literally driving me nuts. I tried to break free from the cage I felt trapped in several times. Each time I did, the harder I fell. I didn't have the right tools or know the right steps to take to make the right choices to grieve in a healthy way.

Ambiguous loss is the technical term for what I am talking about. It is open-ended grief. Grief with no closure. For example: My brother going missing. A soldier killed in action-no body found, an orphan never knowing who their parents were, divorced parents-where one is out of the picture and not known whether they are alive or not. Another kind of Ambiguous Loss is when there is physical presence but mentally the person is no longer there. I'm talking about Alzheimer's Disease. Where the person is physically there but mentally they are lost.  There are many other examples of ambiguous loss but those are just some of the few I will name. Many people suffer from ambiguous loss in this world and don't even realize it.

I was so excited when I learned about Dr. Pauline Boss and her studies. She is a pioneer when it comes to ambiguous loss and her book called, Ambiguous Loss: Learning to live with unresolved Grief ,  has really put things into perspective for me. If you do not face your grief you will be frozen in it. No matter how much you avoid it, it will always come back and haunt you when you least expect it. You cannot progress in life if you have not dealt with a past issue. The past issue will always hold you back and keep you from being you true self. Avoiding something never solves the problem. It just prolongs the inevitable.

As my "Frozen Grief" prolonged the more hopeless the process felt. I truly felt trapped in a circle of endless torment. Dr. Pauline Boss' book describes Ambiguous Loss so perfectly and so profoundly. She talks about the ups and the downs, the mixed emotions you have, going through the grief cycle over and over in your mind. Enough to drive anyone crazy. This book makes the crazy feel sane.

In my previous post called "The Circle of Grief" I talked about how the stages of grief were not stages. When someone goes missing, or with Ambiguous Loss, it is like a continuous circle or cycle of grief. You can be in denial, then accept the situation, bargain for a different situation, then fall into a deep depression all in one day. Sometimes it will shift by week, maybe months.

My favorite chapter in this book is called, The Turning Point, In it she states at one point most people suffering uncertain loss will hit bottom. Then suddenly, or maybe even after a long time, shift their opinion or point of view about the person or situation they are in. They will re-evaluate their loved one who is physically or psychologically not not there. New information may arise about their loved one or they may tire of the state of which they have been living. Tired of being in a helpless state, this is the stage where action is taken. This is where the person experiencing ambiguous loss begins to gain back control of their life.

For families with loved ones with Dementia and Alzheimer's Disease, regular meetings or therapy,  can help people understand why they have been stuck in their healing process. Why they have been so confused, drink too much, eat too much, or sleep too much, (for example). Their maladaptation, or different ways of helping them cope, are usually unhealthy and once they have been identified, it is their first step to recovery.

What was so comforting to me, and is for so many of the people experiencing Ambiguous Loss, Is knowing that it has an actual name. The feelings that you are going through are completely normal. Feeling like your feelings run in a circle every day........is completely normal. Depression, anxiety, and complete confusion, is completely normal. Guilt, shame, and blame, is also normal. But......you do need to talk about it. That is your first step to recovery. Getting together with the family that shares the problem with you and talking about it. Hearing each others perceptions.

In the beginning, It was easy just to pretend that Jesse was just alive. So for 5 years we didn't really talk about it in depth, if at all. So I started this blog. I have done more healing in the past 3 months than I have in 5 years. If you look at all the comments back and forth from family members, we have had our own little therapy sessions. My family and I are in the Turning Point stage. Jesse's memorial is scheduled for July, and to be honest, I can't wait to celebrate his life!!!

For people who have a missing loved one, it is also important to have regular meetings if at all possible. It is a tuff subject for some to talk about and sharing different points of views can be frustrating. When my family first got together for the first time, (and the last:)) to talk on this subject, Two of my brothers were positive Jesse was dead. My sisters, Mother, and I were furious!!! A brief yelling  and crying fit pursued and then all parted ways. We decided we never wanted to hear each others opinion in a group again.

Feelings have calmed down since and we are all of the opinion that we all have our own opinions and we are going to celebrate his life and let everybody think what they want. You can't make someone think the way you think.

COPING---In the process of coping with ambiguous loss Dr. Pauline Boss recommends activities that are more active and social. I know when I heard the news of Jesse, it was a dark house, I stopped running, and I no longer wanted to talk to anyone. Remedy for disaster. The sun and endorphins are great natural things your body needs and will help boost your mood and keep you healthy and strong. She also recommends humor. I remember I was having a particularly hard day and kirt came home with 4 seasons of "How I Met Your Mother". We laughed the rest of the night. I felt of whole lot better.

For people who are caring for others they MUST take care of themselves as well. They MUST give themselves regular intervals of respite times and not feel guilty. It will be too hard on you and you will burnout.

She also states spirituality is key. Now in the beginning, when Jesse first went missing I wanted to disagree. BUT---I hit ROCK BOTTOM. You NEED spirituality. I don't care what your beliefs are, what you believe in, or WHATEVER, you need spirituality. More importantly, you need God. And yes, there is a God. Because he unfroze that block of ice I lived in for 5 years, picked me up out of the mud it created, showed me a little sunlight so I could slowly warm up, dusted me off, and sent me off to fight my battle. I tried to think I could do it without him but......without him I wouldn't be here writing this post.

The last step in Ambiguous Loss is: Making Sense of It. This is the most difficult step because the grief remains unresolved. But if you can't make sense of it, then all you do in life in endure. And that is no way to live your life. For me, here is how I have made sense of my brothers disappearance. I hate that it happen. NO. I'm absolutely devastated that it happened. BUT--This blog has brought new meaning to the word "missing". I now know what I can learn from this experience and turn it into a positive and help others. I want to help others who have missing loved ones. I have connected with so many who have lost loved ones. People who had no idea that the word "Ambiguous Loss" even existed. People who didn't have the tools to help them cope or even start to heal in a positive way. I can use my experiences for good and help relate to others in a way some may not.

This blog has been able to post stories of missing person cases and hopefully many more. I hope to help others spread the word about their loved one as I would have wanted someone to help me when we needed help.

If anything I hope this post taught all of you a new definition to a new word. Because when I first heard it, I thought. "What in the crap is that???" Pretty long definition, HUH???

Monday, March 18, 2013

Challenges we can't handle???

I have often heard people say, "God doesn't give you challenges you can't handle". I thought it was a great saying and I believed this to be true almost my entire life. Until one day I was faced with a challenge I could not handle.

This blog is about all of the thoughts I have had over the past five years and lessons I have learned. It is also about the lessons I am still learning. One big lesson I have learned? God does give you challenges you can not handle. Let me explain...


I thought I was a strong person. I am independent. I have an education. I am strong willed. I rarely ask for help with things and love to be in control of my life. Well, 5 years ago my life spun out of control and I realized I was weak. I couldn't understand why I was handling things so poorly. I felt so helpless. The life I had worked so hard to build was crumbling beneath me. All of the sudden I had no control of my life. I was too proud to admit it but I needed help.

I believe in God. I believe in something greater than this life. I believe in a higher power. I believe in life after death. I have always believed this. I still believe this. But, when I was faced with the challenge of my missing brother, I questioned everything I ever believed in. All the security of my faith seemed to be removed and I felt completely vulnerable and weak. I questioned everything in this world. How could God give me this challenge? I knew I could not handle this challenge. I became angry with God. I turned away from him and didn't look back.

I stayed angry with God for a few years and my faith in this life was fading fast. I decided to talk to my mother about how I felt. My mother, despite everything she has been through, is a woman of great faith. Her unwavering faith in God is what truly saved my life. I told her how angry I was with god and that this challenge was just too much for me to bear. My mother smiled and looked at me. She softly spoke and tenderly gave me a hug. she said, "Niki, I know people say that God doesn't give you a challenges you can't handle. That is completely untrue." I frowned and looked up at her, "What do you mean?"And her response will forever be engraved into my mind. She sat and thought for a moment and said, "I believe god does give you challenges you cannot handle on your own. This challenge we are facing as a family is too hard to bear. You are right. Niki, I have found that my biggest challenges are only able to be fought with God standing there by my side.  God does give us challenges we cannot handle, it is only through him, and with him, are we able to stand and fight these challenges".

This statement really hit hard for me. I had turned away from God for a long time. I hadn't even realized I had. It was only then I knew I had wasted 4 years of my life. 4 years had been wasted being angry and bitter with God. 4 years I had spent hating the life I had been given and 4 years I was ungrateful for what good things I had in my life.

I look up to my mother so much. The challenges she has been through in her life are unimaginable to me. Despite all of the challenges she has been through, her faith in God has never wavered. She has remained true and trusted in God to help her through her trials that she has been given. Her peaceful presence calms me whenever I am upset. She is truly an angel on earth.

I thought about what she said to me all week. I knew what I needed to do. I swallowed my pride and knelled down and prayed like I have never prayed before. As I began to pray, the tears I had denied myself for so long came streaming down my face. "Lord, I am not able to bear this burden on my own. I need your help. Please...Please...please" I whispered, "help me." I sat and cried for a very long time.

Looking back It was the hardest prayer I have ever spoken. BUT, it was one of the most important lessons I have learned in my life. Swallowing my pride and asking for help is what softened my heart and got me to open up and start this blog. Had I not asked for help, my heart would be hard and unkind. Today my heart is so full of love and hope for the future. That is all thanks to god and my mother.

God does give us challenges we cannot handle on our own. Through god, our burdens can and will be lifted and made easier to bear. The difference for me was night and day. He is always there waiting to help us. We just need to ask. I am so grateful to have a mother who has been such a good example to me. Her faith in God has helped me through the most difficult challenges.
 
I found it so amazing that admitting I was weak made me stronger. Most of us at one point or another will be faced with a challenge we cannot handle on our own. Having God back in my life has made all the difference. I have learned that I may turn away from him, but just like I would never turn away from my own children,  no matter what they did. He will never turn away from me. I learned he was always there waiting for me to ask for help. I was just too stubborn to ask. He is there for me like I am there for my kids and he me loves unconditionally.

I hope if you get anything out of this post, you get that the challenges in this world are too hard to bear alone. Pride is the ultimate killer. God is the ultimate savior.