The Truth Shall Set You Free

To feel or not to feel that is question.

2008-11-29T19:46:00.001-08:00

Why do people always say ( in response to a situation) if you are angry, sad, etc . that you are "choosing" to feel that way. Well of course you are- no one but you feels the way that you feel. But choosing to feel a certain way does not exactly mean that you are "in charge" of preventing yourself from naturally feeling the feelings accompanied by that emotion. I guess one does have control over what they do what their feelings rather then control over feeling them.

I mean think about this- Do you ever hear someone at a funeral say, God your a choosing to feel grief? The automatic understanding is that someone will rightfully feel grief- and that they are entitled.The choice and dysfunctionality comes with not the feeling but how we let that feeling effect us. What devastates one person may not even make another flinch.We should be empathetic to those that are devistated and those that stand their ground.

Sound of Silence

2008-11-29T19:46:00.000-08:00

I long for the hours when I can be alone in silence, no screaming children, no barking dog, no ringing phone. I live for those moments, in those moments I feel like I will be renewed and refreshed - but then it hits me. In the silence and reality of those moments is when I hear myself. I listen to the beating of my own heart, the churning of my own stomach. I feel the tears role down my cheek and the voice in my head that tells me to get a grip and the other voice in my head that tells me to go ahead and let it out- let it go. Today as I listened to that second voice I prayed for that the feeling that I sometimes have, the feeling that someone is with me, that someone is holding my hand- I prayed for that feeling to come, that someone to come because the reality, the emptiness and the loneliness was all that reached out for me- and I let it embrace me.The fear of it doing more than that, the fear of fear swallowing me whole made me tremble and lose my breath.It ( Fear) being just one of many things that overwhelm me these days.

Overwhelmed is an encompassing word- It verbally illustrates, anxiety, depression,despair, emptiness, loneliness and partial defeat.

Truth Be Told......

2008-09-24T18:55:00.000-07:00

The truth is consistently accurate but inconsistently comfortable.I rather be overwhelmed by the discomfort of the truth than to live with the comfortable limitations of half truths. I am overwhelmed on a daily basis by this life's tragedies and blessings - I am humbled most by the people who speak the truth no matter if they are given a blessing or handed a tragedy.The truth is not what is handed down to us in a didactic approach or through well organized text. Truth is not often found in textbooks or letters preceding or following a person's surname.The truth about the truth is that it is waiting to be expressed in each of us. I believe when we spend time with people- when we really come to know them- when we take in their whole story-is when we expose their truth and by listening to them, not judging them- that we expose our own truth about who we are.

Work in progress.......

2008-06-05T17:28:00.000-07:00

Tomorrow I have a second interview (usually a good sign) for the job that I have always wanted to do, the job that I feel I am called to do, the job I feel in a sense will fill a longing to be true to that which completes me on a professional level. As I sat in a therapy secession last Friday my therapist challenged me to explore the anxiety and fear related to "something good" happening to me. Something good , being this job offer that would not only help my family out financially but should also extinguish a burning desire to do this type of nursing. I know in my soul ( the dungeon of insecurity) the answers are clearly there to this fear and many more.

It is insanely simple- no need for paragraphs upon paragraphs of pros. It comes down to the old"waiting for the next shoe to drop". I am not sure when it was that my cognition became so distorted and negative- it just is. I have spent years in therapy trying to change it- aware that is is something that I and I alone must do. So fear of what you may ask? Fear of not being good enough, fear of failing, fear of ....the list goes on but the biggest thing that stands in my way is fear of being happy. I cannot remember when the last time that feeling happy did not bring on a sense of dread and feeling like the happy feelings were temporary and fleeting.Guess I am weak- because most of the time I rather o without happiness that to have it snatched from me.I should know that happiness is a state of mind that you create for yourself- it is independent of natural disaster and betrayal. If you have allowed yourself to be happy once- I believe that you can return to it. Part of having something good happen to you is believing that you are worthy of it- that you deserve it, hat you may have earned it. Having something good happen to you- should be just that. I am fearful that I have placed a lot in getting this job. I think to myself- what if I get this job and it is not what I imagined- or I am not what I imagined in it.What scares me is that this job nor anything else should be solely responsible for my happiness or self worth. I should be worth more than that.

I want this job because for many selfish reasons.I feel less helpless when I a helping and empowering other people. I feel less fearful of my own mortality when I can help others face their death with comfort and dignity. I just want to make an impact on the world- lend my service and heart to others who need the littlest of things. That makes me feel whole, complete and powerful. I want to find a place (maybe that's a job- maybe not) that I can face myself everyday with a little more self respect.

Well I feel like I am not completing the assignment.....Happiness ( as I imagine it) scares the hell out of me. I am sure that when someone is happy they are comfortable. I have a great deal of things that make me happy- but to say that I am is too much for me. To admit and know happiness would be to not fear anything- and fear is so much an overwhelming part of me. I am scared that things that make me happy will be taken from me. I am afraid of loss. Very interesting that I would be in a professional specialty where loss is part of a shift to shift thing. I guess I landed in the hospice field as an implosion therapy.

Hospice care teaches you 1. how to live your life to the fullest, 2.how to let go of all that weights you down and holds you back, 3. teaches you how to be happy with yourself when you look in the mirror of mortality.

I have been looking for some spiritual guidance.Some visit from and wise angelic who will lead me in the right direction. I am learning that my own voice can serve as a guide - I just have to trust it and most of all not fear it.

He always says"Anything worth having is worth fighting for"

2008-04-20T17:56:00.000-07:00

My husband Brian does not write often. He does not write letters, checks, or simple post it notes. I mean him no disrespect when I say his penmanship is illegible, he cannot spell worth a lick (neither can I) and his grammatical ability is probably that of a first grader. Because of these few shortcomings he often does not write anything down in front of anyone-only for himself to see and even that looks like a blind, left handed Parkinson's patient wrote it. I tell of his handicap not to disrespect or embarrass him in any way - but moreover to dry home the message of my post.

Since I found out that Brian would be leaving in November for a year to go to Iraq with the Marine Corps- I have been flirting with a shock and anticipatory grief. I guess I am one of those people that attempts to digest the thickest part of the meet before actually eating it (impossible to do). I have never struggled to understand Brian. I know him so well I feel like I have known him all my life. Our first date we sat in the same booth for over five hours and talked- we never ever stoped talking from that moment on. Our relationship has been one long conversation.

Brian and I frequently talk about the reasons why he feels an "obligation " as an American and a United States Marine to make a contribution to the "war on terror" and to contribute to the liberation of the Iraqi people. I don't believe that we talk about it to help me to cope with the reality because I have always known this to be the truth about what he wanted to do with his life. I believe that we talk about it cause I want him to know that I get him. That I love him unconditionally and I rather live scared sleepless than to have him forfeit something he feels he must do. Some people have a hard time with this idea. Some don't support the war and some might say he has done his time and he should enjoy the rich life he has made for himself. I stand always in the same place- along side him in whatever he wants to do (like it or not).

One of the shear beautiful things about Brian is that he is an outstanding human being- he doesn't even know this about himself. I knew it from the moment we met.

Brian has a cabinet that is set aside in the kitchen for all the personal junk he takes off him when he gets home at night ( wallet, cell phone, money, notes etc). The other night I was cleaning it and I came across one of his field journals. It is and canvass olive drab book - the size of a novel. On its cover is a hand drawn devil, skull and an amtrac (Brian cant write but he can draw well). I have seen it before and know it to be blank inside. I removed it from the cabinet and thought - well he isn't using this -its blank I will put it upstairs. As I placed it on a pile of items that were destined for someplace other than the cabinet- it fell to the ground. In mid air I saw all the blank pages fall open like an accordion as it fell to the ground. Blank pages-two hundred ed or so blank pages- except for the last page. There was about two small sentences written at the top of the page. I brought it closer to my face - it looked like Brian's distinct penmanship- but everything was spelt right and neat. The writing was so neat it got my attention more than the message- clearly his life must depend on this legibly written message. Clearly a quote from someone else:

"It is better to die on you feet than live on your knees"

A blank book with one solitary message. This made sense to me.Sweet irony. This is Brian-take what you are given although it may not be much and make something out of it.Don't spend your time miserable- you have plenty of time to miserable when your dead. Kill or be killed. You are what you make of yourself. A type of mind over matter: if you don't mind it don't matter. I read this quote and I thought - this is him.This is what he is about. I am sure that this quote means many things to him. I think Brian spent much of his youth and adolescents living on his knees-unable to rise up against the negativity that others had against him. I wager to say that when he was a kid he probably thought he would never be strong enough to stand on his own two feet. The Marine Corps made him believe that one didn't need a leg to stand on when one had their pride and honor.

It is now 2008- 12 years in the Marine Corps (or the suck as they call it) and he is ready to "die on his feet". He is a true American, a die hard jar head and the most unselfish human being I know. I hate to think of what this year will be like for him. Lack of sleep, stifling heat in loaded down uniform, the risk of being emotionally/mentally wounded, all the comforts of home gone.
Missing out on all that you have worked so hard to build.................

Brian's dad was a Marine and Vietnam. He had a plaque which was given to Brian when he died- it used to hang in our den- I am not sure where it is now but it said, "The more you sweat in peace, the less you bleed in war".........I have been alone the last five nights as Brian is away on training with the Marine corps. In June they train for three weeks straight. 5 nights, 3 weeks, one year long deployment after 9-11 and 12 years in the Marine Corps..........I am holding on to what that plaque says.....

What does this mean.....

2008-03-24T17:43:00.000-07:00

If I could play piano like a world renown pianist- I would enter a large room with dramatic drapery and dimmed light. A shiny black grand piano in the center of the room. My hands would allow my fingers to comfortably rest upon the keys as if it were their home. An uncomplicated row of keys played slowly till the spirit moved them into a passionate concerto. An arrangement played from the heart with an ending rendering a great sense of expression and accomplishment.

If I were to dance like a prima ballerina I would lace my steal toes and glide across the hard wood with grace and choreographed preciseness. I would receptively spin finding comfort in each predictable turn and peace in weightlessness of my feet and soul.

If I were an accomplished gymnast I would walk the straight beam with strength and confidence- I would communicate my presence in flips and fast passes while gracefully remaining upright only to make a powerful calculated dismount.

Searching for a piano to pull up to , a floor to glide across a beam to back flip off of....
A way to express what lies within a song, within a dance, within a dismount.

Favorite commercial

2008-02-27T18:55:00.001-08:00

My favorite commercial on TV is the AT &T commercial. The one where the daughter gives her dad a little monkey to take with him on his business trips and then he photographs it in everyplace that he goes.The music is perfect a sweet endearing song and the end when the dad comes home you can see the relief in her face as she hugs her daddy. This commerical does many things for me- it reminds me of Brian's sweet relationship with his children, it reminds me of all the times I wanted to be with my dad but couldn't , the end where i shows te daughters face as she latches on to her father reminds me of every night when I hug Brian when he comes home.
The realistic but negative parts of my mind play a more cynical picture of a father that has a less glamorous job than this dad in the commercial. What if the father in the commercial is a policeman at the scene of a murder, or a solider in battle, or a an undertaker? I suppose you all are like - You sick ticket....but that it what makes this such a sweet untouchable commercial. I always think how would there be room for this kind of sentiment in jobs where you absolutely need to leave your personal life and love ones at home.....

Brian does not wear his wedding ring much anymore-in his police work the inmates use it as leverage to talk smack and in the military their is risk for injury from equipment. Brian always says there is a time and a place to let your mind and heart feel your family-but much of his military and police career does not allow for that. I understand this.....But how do i make my children understand this during deployments and overtime?

in any event look for this comercial, disregard my doomsday approach and just enjoy it cause i absolutely love TV cause of this commercial-and the Dr.g medical examiner.

Wide open spaces

2008-02-27T18:39:00.000-08:00

Dear Kristen-I grew up in you neck of the woods-and could not wait to escape. I have not been back in years. I am wondering, how do you feel about where you are living. Not about your house, but about your geographic location. If you cold live anywhere else-where would it be?Peace.
Amy

Amy-
"My neck of the woods"? Rural Albany County is not my neck of the woods, nor my husband Brian's.We both grew up in Albany-me in a nicer section than B. People always say they are one or the other-a country person or a city person. I am more of a "home" is wherever my family is. I must say though that I have more hillbillie in me than the average.....I like country music, I drive on the lawn, my nearest neighbor on my street is more than a half a mile down the road, I live closer to a tavern than a gas station, and i have no problem going to Stewart's in my pj's. No really I enjoy where we live because there is no loud highway, no cop sirens or loud fire engines. My front lawn is lit up by the fullest of moons and the star filled sky. When I look up at night out the big windows above my front door feel embraced by nature and the silence. I look at the back door at a doe or a fox - I become more interested about their day that the gossip of a city neighborhood. I love getting my children out of the car and knowing that it will be a good ten minutes before they hit road.I love everything about living out here. I think people who live in this sort of community are like me....they would give you the shirt off their back- they just need space to live.....where did you live?

A moment on the lips , and inch on the hips

2008-02-20T19:33:00.000-08:00

quikast has left a new comment on your post "help": which do you prefer...entenmann's or freihoffer's chocolate covered donuts?

Hmmmmmm, knowing you as well as I do I know that you are a gigundo chocolate lover- however I on the other hand am not. Plus it is not nice to engage me in conversation about sweets when I am trying to cut back. I know not of these chocolate donuts that you speak of. I know of the kind that are soaked in chocolate with yellow donut inside.I Love freihoffer's classic old fashion choc chip cookies but has to be in the brown box not white.As for entenmann's- i think of their choc cake with white frosting and cakelike sprinkles in frosting.REminds me of my grandmother Kay.

All time favorite sweets:
spice cake, cinnomin red bears

McCain 08

2008-02-18T20:48:00.000-08:00

parry05 has left a new comment on your post "help": Why is the media turning on Hillary Clinton? Will John McCain turn more to the right as the election gets closer and will you be voting for McCain and why or why not?

Parry-

I am really ignorant when it comes to politics. I know very little about the way of government. I choose my candidate weather it be local election or a national on one 3 things- 1. Charecter, 2. crediablity, 3.ideas. I don't consider myself a good young adult because I dont really concern myself with rising gas prices, the economy, etc ( I dont even know what else). I am mainly a military wife concerned about the direction the war on teror is going in and what that will mean for the united states and my husband. Because I am an idot in terms of the issues, I am not sure I am good one to ask or that you will find any worth in my opnion. So, in the third area of "issues" I vote MCcain, because I believe that he will be mot supprtive for our troops and most dedicated to the objective. On charecter and crediability I Vote McCain. I know of now greater display of ones loyalty for their country than to lay down their life for it, to be a prisoner because of it....If I wasn't such a wussy I would do it myself . ...

Hillary Clinton is a passionate female under her shark like exterior. In my ignorance I guess I believe that Hillary Clinton would be the best democratic Candidate. I rather her over Obama who does not seem crediable but rather deceptive on my radar. Why is Hiliary under such scrutiny- I believe because of Bill......If you associate with Liars than people start to believe you are one.By not leaving him when he did what he did to her makes the American People ( who also lack morality) to believe that he wears the "pant suits" in the family. I believe that Bill Clinton was a fairly good president up until his scandelous relatons. I do not think that the country wishes to relive times of scandal and disgrace and I believe it is Bill's scandal and disgrace and the idea of a Clinton Dynasty that will prevent the American vote to go to Hillary. I believe the biggest injustice a president can do for his country is to bring on scandal and dishonesty- to create an envornment of distrust. I believe that this is what bill did and as a result people cannot help but associate Hillary with that.

McCain has a badge of courage on him and I hope that courage will lead him to victory. I believe that he represents America well. I believe him, I trust him- just from a womanly radar basis and not based on evidence based knowledge.

The media in my mind could destroy the legacy of mother Theresa for Christ Sake.

I wish that I would give you a better answer for this - but I really am not politcally Savy. I make descions with my heart, my radar and based on charecter...typical woman...why do you think we are not allowed in combat?

THis is a great question- sorry i was a dud in aswering it.

Kristen

Dear Candy: Hope Floats

2008-02-18T20:45:00.000-08:00

Candy has left a new comment on your post "help": Dear Kristen,Your strength is a great power of example to me...another Mom living with autism in the family. Can you write a post about hope? Hope for ourselves, spouses and children. Without hope there seems to be nothing to look forward to. Hope is so necessary in life. I'd love to hear your view on this.

There have been several times in my life when I have run out of hope, or shall I say times when “life” had exhausted my ability to be hopeful about an undetermined situation. There were times that I felt like my ability to be hopeful was curtailed by a underlying feeling of unease , cognitive distortion, and by turning on the nightly news.
Hope as I define it : Ones ability to maintain control of their thoughts and feelings during times of adversity and mold those thoughts and feelings into a strong foundation that will withstand negativity, evil, tragedy and “let downs”. Hope is ones’ ability to “hang on to themselves” when someone or something is trying to pull them into darkness. It is Hope that acts as a life vest and protects the heart and soul of man from drowning into a see of despair.
As an oncology/hospice nurse I have learned that one can have hope in the darkest of hours-even when death is imminent. I cared for a family the other night who lost one of their own. The husband, well into his eighties looked at me a 28 year old chronically depressed cynic for a ray of hope. He said, “in all my years I have never lost “faith” ( his translation of the word hope) that the world is a great place. He continued to attempt to express himself between sobs and whispering in his dying wife’s ( of 62 years) ear; How in this moment am I to find faith, to find Hope- it is over for me - she has been and is my everything……..”
I paused for a moment, the hopeless part of me wanting to say, “yes, you will surely die emotionally today and physically very soon because you cannot live without her. I wanted to not fault him for wanting to crawl in a ball where he will sleep and starve himself to death-because that would feel better than being stripped of his faith and hope prior to losing the most important person in your life……..”
But I have been at this a while, weather I personally believe it or not the dying and their grieving families have taught me that there is hope in the darkest of hours…even in the death of your sweetheart…. I pulled up a chair next to him as the family excused themselves to allow him to have some time with her. I said,” Today you will leave here without your other half, but only you can prevent yourself from leaving behind your hope and faith. It sounds to me like she and the love that you shared gave you faith , hope an belief that the world was a decent place. Do not dishonor her memory by abandoning that….I have hope today, that she will peacefully die a dignified death in the arms of the person who brought her strength , love and comfort. I have faith that she will rise up and be with her loved ones that have gone before. I am certain that the hope of one day joining her in paradise will sustain your corporal life and aching soul until you reunite. I am certain that hope is not lost here today. He looked at me long and hard, I made definite serious eye contact (the kind that does not wander). Did he buy it? Did I buy it? Did it help him was more the question? Did it help me to bury all my personal loss? For a moment he wiped away his tears and kissed her softly as if it were their first kiss. He whispered something in her ear in what I believe was in French. She began to Cheyne Stoke ( a clinical term for pre death breathing). I grabbed his hand and said , “ these are the last few moments….” He looked at me with horror and turned back to her with calmness - He whispered, “ I love you- I always have, your are all I ever wanted in this life- I will live only off hope that I will be with you again ……”
So, he got it! The message of hope, which is that you can take the worst of any life situation and find some goodness, a lesson, a reason to go on or come out better, a comfort. Hope may not always be rational but it is vital for the sustenance of the soul.
Dear Candy-
When I found out I was pregnant for Sam, I had an overwhelming sense of certainty that unlike his sibling who died in utero- he would survive. Being certain of his survival I began to have hopes and dreams for him, the biggest of which was that he would be a “happy” person-content with who he was. On the day that he was born-the world seemed hopeful. I had no negative premonitions or thinking that he would have anything other than the most traditional entrances into the world, with the most standard baby to preschool years. Sam’s entrance into the world was kinda rocky that day- he was taken by the neonatologist who was standing by (he was a maconium aspiration) right away. Brian did not get to cut the cord and I am not even sure I got a good look at him. I struggled to see him, I heard no cry, all I could see was Brian standing over as they shoved pipes down to clear that which he had ingested ..and then the scream….weak but there…..loved that sound. Once he pinked up they brought him to me in that well anticipated moment and placed him in my arms. Instantly I felt- This is not him, something is wrong. He feels stiff and startled- I can tell he is not comforted by me- the bond was blocked.
The hope at this time was that I would not bring everyone down (including him) with my hopelessness. The biggest of all that I hoped for was for me to be dead wrong in my assumption that he was in fact “different”.
Time passed and I one day learned that he was indeed very different. After I accepted he was different but before I knew that this difference was called Autism- I did research into his behaviors. I began to understand that he experienced the world differently, heard things different, saw things different, felt things different, responded different. It became clear to me that the key to understanding his difference and to understanding him was to force myself to see things the way he did, before I could force him to see the way I see things. By understanding this vital difference I could be more cautious and caring for him as I dragged him away from his life of self injurious, self stimulatory, repetitive behaviors and brought him into a new world were verbal communication could provide opportunity and fulfillment of his desires.
On the day we got the diagnosis, it was probably (surprisingly enough) one of the more hopeful days of my life. His doctor was excellent in pointing out that although he was starting out from his own little world that he could easily live in ours with exhausting hours of work. (Family) Hope: being given a diagnosis that is not terminal. Hope: Having a diagnosis that has treatments available. Hope: having a stable , strong family to help one through a tough time. Hope : that we had caught it early ( I wanted him in treatment on the day he was born..lol). Hope: that what ever the outcome institution or graduation we were going to stand by him….
For our children, Hope: that despite diagnosis that he can be happy and live a full life, Hope: that he will have friends and experiences that will may him happy, Hope : that other children and adults will treat him fairly and not judge who he is on the premise of his behavior.
For our spouse: Hope for the parents is key. We have to believe that there will be a life for our child. The key to achieving such hope is dependent on the parents ability to let go of the preconceived notion of who their child was to be and how life would be for them. Once Mom and Dad can let of what they thought things were going to be like, can they live in the reality of what truly is. Hope: is believing that the couple will stand together and work side by side rather than be separated by stress and tension of the uncontrollableness of life. For couples with children on the spectrum new intimacy is found in the consolation of one another as each lets go of the child they thought they were going to have and celebrating the resiliency of the one that they have.
For the mother: Hope is that the matriarch will rise above the shear disappointment of a dream gone different ( not bad just different) and help her son or daughter to speak, to touch , and to love like they never heard the word Autism. Hope for the mother: is knowing that no one blames her for her genetic contribution, that her child does love her despite his inability to express, and that her spouse’s misery will lesson overtime as acceptance creeps in.
In this families journey through Autism , we have always believed in the hope of some sort of recovery. In the beginning Sam’s doctor gave us this hope, she encouraged us not in a skeptical way but in a parental way- that if we applied ourselves we could attain what we wanted for him. Early into the diagnosis I realized that if I took as much energy as I was wasting on feeling cheated that I could apply that energy to helping him to speak and emerge from the world of isolation that he lived in.
Recovery and its definition is different for everyone. Recovery for us was not about speech but about behaviors. If you eliminate the self injurious, self stimulatory behaviors that you can open the door to speech and education. Medication aided in treating the accompanying epilepsy - but the truth is that we will never change the electricity in Sam’s brain, and I am not sure that if I could I would.
It is Autism, much like my job dealing with the dying- that taught me what hope is. Hope is knowing that there is more than feelings of overwhelm and emptiness and lost dreams. Hope is the fuel of parents who drive to the ends of the earth to help their child. Hope is the ability to feel that it is okay to let go of your comfortable pristine dreams and take the road less traveled- if you are a believer, one who has hope , the road less traveled may take longer but it always leads you home.
This may not be the traditional answer that you were asking for - but it is hat came to my mind when I thought of hope……
Kristen.

help

2008-02-14T09:08:00.000-08:00

I am at another point in my life where I should be writing to purge my feelings- but I am not comfortable at the keyboard either. I am looking for any readers- if there are any left to give me a topic which they would like to hear from me on. Many of you know me personally, some just over the phon, some just over the blooger or the email- please help me with this.....

the topic can be serious, humerous, political whatever- the goal is just to get me writing and have me not focus so much on literary perfection but rather and exploration on how I feel about something...could be as stupid as tell me what you think about grass- or as deep as tell me what you think about death....it does not matter....I any case you know that I will provide a brutelly honest peice so please becareful what you ask for...

kristen

Mommy, is Morgan ok?

2008-01-03T08:23:00.000-08:00

My therapist when I was a little kid use to remind me (when I would try convince him that something either didn't happen (when it did) or that something wasn't bothering me) that if a past event or current worry is able to provoke visible emotion (crying, shaking, physical symptoms) than it is something very real and it and the feelings that go along with it need addressing. Because I always think so little of myself, because I know that my perception of events can be altered by emotion- I often er on the side of caution and assume that the event or feeling is not really occurring.That other people do not see it. Sometimes I am often that first to see something and many people will contribute to my flip flop thoughts by saying that I am over reacting or they will attempt to give a justification. I believe that people can do this for several reasons..1.) denial 2.) they want to make your situation better so they attempt to be more positive than reality based and 3.) because they truly are not aware.

When Sam was young and he had his problems I kept telling everyone that he was not right. I believed it was more than the maternal intuition that hit me on the day that he was born. I believed at the age of 18 months that it was blatant and why could no one else see it? People would say his behavior was the terrible twos and he just needed a little spanking and stronger parenting. When I had sen recent changes, very subtle changes in Morgan because she is so high functioning I had people saying it was the terrible twos, that she is spoiled, that she is bored, and still others who see nothing over the top about her behavior.

The holidays have come and gone and her behaviors and clinical presentation is escalating daily. My family is sadly aware of what it looks like- her brother. It appears that she may be epileptic on most days but it cannot be denied that she meets some spectrum criteria as well. It has been hard for the family to see Morgan like this and it has been hard for our family to endure it when we were just coming up for air from Sam.

Morgan is less responsive, more self driven. Her tantrums are long, up to an hour ( a terrible two quality) but over everyday stuff like taking and putting on cloths, getting in the car, going and in and out of places (just like SAM). When she gets angry she looks to hurt herself or others by biting. She is lip licking, eye twitching, spinning, lining up items etc. She is anxious about things that she should not be having just turned 2 in November. Mommy, is this my house- are you gonna make me leave and live somewhere else? Mommy are you happy? Mommy am I a good girl or are you mad at me? Is Sammy and daddy safe? Are their germs in my room? What if I get sick in the middle of the night? She is drooling all the time and exhibits much of the stereotypical staring and seizure activity Sam does. She is not sleeping all night and spends her time obsessing about DVD'd , looking at them, carrying them, talking about them, changing them. She spends most of the night thrashing about and banging at the door to get out of her room saying, "mommy I need you".....

What does she need?

I have come from the land of no return. I am now in dejavu. An EEG has been done (without report because of the holidays) I have been in contact with her doctor. I am scheduling a neurologist appointment. Our family will see a geneticist. Etc Etc Etc.....

So, I could hide behind the reality that this is not happening to us for the second time if my family didn't see it. I could hide my deteriorating emotions from Sammy's school (for spectrum kids) if Morgan didn't attend the "typical kid roomed" nursery school. I could hide it from them if today and yesterday she was not that kid melting down in the hall that needed intervention. If I couldn't"t hear her shrill of a scream from down the hall. Between the rolling around on the floor, the non compliant growl, and staff all around her three stepping her to just be able to stand up and walk...........I knew it had become real. I knew yesterday as well when I felt that loneliness set in. I knew when I like all mothers went to the computer to research.

I have read over the last few years more articles about autism, epilepsy and ABA than I have read any other text in my entire life. As I sat there reading I thought- I know what to do, I have done it all before....But do I have the strength to do it?

Is this real? Is this really happening?

When Morgan was at her worst this morning I left her in the hall by herself surrounded by staff. I listened as I walked away them trying to get a social greeting out of her, an ability to self sooth and follow direction. I knew at that moment that this was bigger than a "mother's love" that I had to separate myself from her emotionally at this behavioral point because only they could be objective and help her- and it became real as everyone in that school who has embraced our family for so long looked on in horror at the the thought that history (genetics) repeats itself.

A Teachers aide grabbed me and embraced me and said, " this too will be OK"...I Stood there and took the hug. A person who hates to be embraced I stood there and I took it. I raised my arms slightly to submit to the embrace and dropped them quickly realizing that if i accepted it -it would make all this real.....right now it still can't be.

I Hope the EEG is positive, than I can put her on meds.If it is not positive I wait and go the developmental pediatrician route. She needs a psychological evaluation next - no doubt.....

As Morgan screamed the entire 30 minute car ride to school and then starred off into space with a pale face and drool on her mouth- I heard Sam (my Sam- The one who put his head through a wall and who couldn't speak before 3) say, "Is Morgan Ok"?

I am still searching for the answer to that and many other questions......

Modern Day Holacaust

2008-01-02T18:11:00.000-08:00

********This is an emotional and somwhat intense pros post. Consider yourself fairly warned. I mean no disrespect by th title to that those that perished in history.********

She stands in silence, darkness fills more than the room.
A solitary flame illuminates the shell of the person that she once was.
She stares into the warm light,
without thought,
without feeling,
without a name to call what she feels.....
no feeling, no identity,nothing real -she reaches for something, for someone
and in that instant that her hand grasps that small red tipped wood she knows not what the next course of action will be.

Without thought, without care,without anyone there she gently dips its tip into the flame as not to disturb the flow of the flame.

In the silence and lonelyness of the night she cannot hear her voice, she cannot speak, she takes that wood and moves its piercing hot tip and runs it along her skin.

The last burn saved as symbolic- a last attempt to erase her existence to eradicate any trace of her birth....

The horrific smell of burning flesh, the almost unendurable feeling, the exhilaration of ones ability to feel, The release. the addiction to that release, the familial disgust.

Permanent disfigurement seems a fitting punishment for one so weak, one so limited, one so incapable of expression.....

Incapable of expression?
She begs to differ....
Her scars are the ultimate life lasting expression of her destruction, her expression of that destruction, her rebirth and her surviorship.

Fortitude

2008-01-02T17:59:00.000-08:00

“What lies behind us and what lies before us are small matters compared to what lies within us”
-Ralph Waldo Emerson

This is without a doubt my favorite quote of all times. I t reminds me of what one of my old therapists once said to me. She used to say, ” Try not to fear that which is to come but face it with the knowledge that you are intelligent enough and strong enough to handle it”. I wonder daily why it is that someone like me , with a lot “within me” worries that I indeed in fact will not be able to handle that which comes my way. Both quotes are very truthful when you really think about them. What really do you have to fear about the future if you know that you are suited to handle it. If only life were that easy, if only ones heart didn’t overpower ones mind when action is needed. It is in my opinion that the rational intellectual mind that can separate emotion when acting and making decisions is most successful in living a functional productive life.
People like myself who have no liberation from the emotions that imprison the soul, often are unable to lead productive lives. I have lead a productive life despite this limiting characteristic. Now don’t get me wrong, ones emotions are important and requiring daily validation- however everything in moderation?
I believe many people strive daily for this balance in their life between the reality of the world and the way that they see it, the rational side verses the emotional side, he intellectual versus the feeling.
There is a very distinctive part of me that has existed for most of my natural life. This is the “all or nothing” part of me. People who do not know me may call it the dramatic part of me, family may call it a genetic or learned predisposition, a therapist might call it bipolar or borderlineish- I call it limiting. I see this with my children as well and I wonder if something in each of our brains is not right. If something in the limbic area or area that controls impulse, feeling, emotion, pleasure, behavior, self regulation, etc is not short circuited.
If it is mental illness than neurology -it does not quite matter.
What matters most in ones life is how they live it. How people live their life usually depends on what inner tools the have, how they pool their resources, and staying true to what makes them their own self by participating in events and surrounding themselves with people who make them happy. Things like stress, depression, anxiety, poverty, ignorance, and of course “all or nothing “ thinking can stunt personal growth and prevent the attainment of contentment.
Hence , if we can find what strengths lie within us and be honest with ourselves about our weaknesses than our fears of what is to come should be kept under control.
I am not when it was or at what time in my life I stopped believing that I had the inner strength that it takes to survive the unexpected., but the truth is that I must have - because if I believed that I could get by come what may I wouldn’t be so fearful and unsure all the time.

Fear of standing still

2008-01-02T11:44:00.000-08:00

“Be not afraid of growing slowly, be afraid of only standing still”

In order not to submit to self defeat I have had to accept, that I have (although slowly) grown over time. I have had to allow myself my mistakes without self punishment-or at least attempt to do so. Self punishment comes so easy to me. It is as natural as taking in air and breathing it out. To be kind to myself and admire myself feels as uncomfortable as walking naked through Alaska in the middle of winter. Fear is the second most familiar feeling in my life. My fear has paralyzed me to a great degree throughout my life causing missed opportunities and sleepless nights. Still through it all I still maintain- I am in fact able to be quite functional despite my cognitive distortion. My baseline is other peoples depressed.
I used to be afraid of everything, I now find that I am afraid of being afraid. Does being afraid stunt your individual growth? I can honestly say that I feel it has stunted mine at times and at other times it has saved my life.. My problem with fear is that it insists that you acknowledge your vulnerability and I never like to be vulnerable. Vulnerability places you at risk for emotional injury.
I guess vulnerable is an emotional description . In medicine we would use the word susceptible. These words describe a person at risk for injury or harm. I really had not realized where I was going with all this till just now.
Lately, I feel quite vulnerable. Vulnerable: quick to anger, quick to want to cry, quick to want lash out at others - mainly myself, quick to be overwhelmed, quick to be mal adaptive, quick to be unavailable to even myself.
I realize that my own vulnerability may be arrived at simply by not confronting/processing “the ghost of life past”. You know those incredibly huge things that sprung you into action mode and exhausted you to a point that you could never even conceive addressing how they truly made you feel. You just lived past them and outgrew their acuteness with outward elegance and inward ignorance to how they truly changed your soul.
My soul, the core of who I am wasn’t shaken or destroyed by my parents divorce, by my confusing home life as a child, by my obsessions and anxiety, by my failed marriage built on deception and mistreatment, by my physical separation from Brian during deployments-my soul was changed by my children. The one that I lost to a fate more powerful than my desire and love, The one that I almost lost to his on brain, and the one who is currently lost in her own world of anxiety and ritual. These three beings first seen on sonogram as a flicker of life have changed me forever. Each of them have contributed to my individual growth.
As I heard my son’s voice fill the room tonight as if he were the announcer in a stadium- I realized he had grown. When He spilled cake on my dinning room chair and I told him it was no big deal I realized I had grown. Growth ( a very positive move in life’s right direction) however does not necessarily guarantee full acceptance and recognition of life altering events.
It took my daughter’s recent display of problematic and maladaptive behaviors to realize that this long journey through Sam’s diagnosis and treatment of Autism and Epilepsy has exhausted me and frightened in ways that I never knew possible. Nothing is more paralyzing than seeing your child suffer -wondering if they survived their birth only to live a life in an altered state. I never realized the physical pain and exhaustion that has accompanied these last few years with Sam. Many say (with reference to Morgan ) that she is at an advantage following Sam, because it is this birth order that would allow her parents to make an early detection of an issue and of course lock in an early recovery.
I feel Morgan has lost out following Sam because I am so tired, so not ready to have to fight…..I am more than willing to go the distance for Morgan and I indeed will-however I have not yet dealt with the pain and loss that accompanying his early years . I am not feeling so willing to take on her issues (which are different than Sam’s in many ways). Not only have I not spent a lot of time processing how our life with Sam has been, but moreover I have not considered how Morgan’s issues remind me of my own and in turn give way to a sense of guilt and inadequacy as a parent. There is nothing more painful, nothing more encouraging of feelings of inadequacy as a parent than believing hat you have caused your child ( weather indirectly or not) to be ill.
The most promising of all this are small hints of my own growth. In the face of feeling inadequate as a parent, feeling like I genetically caused my children to be ill, feeling like I had nothing good to contribute to their existence, feeling like I cannot endure facing that they have trouble living their daily life, feeling like I let them down- my growth peaks through. My growth, has been acknowledging that I have given my children kind hearts, caring souls, a good home life and a chance at their own comfort through early detection and treatment of problematic behavior. This acknowledgement of my positive influence on their tiny fragile lives will be absolutely vital to my continuation of personal growth and survival through the next leg of our journey.

Flags of Our Fathers

2007-12-08T17:53:00.000-08:00

"We shall never know the horror you saw on that day or the sadness in watching your comrades perish."

-Mike Breslin

I cannot describe to you what I feel when I see these men here.They take my breath away. They renew my spirit to believe in endless courage, commitment,honor and friendship. Their sadness and sacrifice is not in vein and I hope that they know deep down that I appreciate all that they have experienced on my behalf, for America.

Interestingly enough when I was a senior in high school I toured a Military college (Navy) Norwich university. I definitely wanted to become a nurse and lets face it the military eats them up, trains them well and pays for it all at the same time. My dad being prior navy , I am sure was somewhat proud and somewhat oh brother...and my mom wanted me to have the typical college experience. I wanted what made me feel good, uniformity, rigidity, strictness and of course I am a closet partiot so I drove with them four hours to see a place who's Latin motto I have never forgotten...."Veritas vos liberabit - The truth will set you free". I have learned many truths about myself and the world since that day and I find those truths (some painful) liberating.

EHEM.....Stepping on my soap box.....

Last night, December 7th , Pearl Harbor day. I am a lowsey historian but even to my plebeian self this shoots off a cannon. I am standing in the kitchen and the movie Flags of Our Fathers

comes on, the movie about the flag raising at Mount Seribachi (hope I spelled that right). I stood for a good 2 hours (Back spasams and all) and watched this captivating film which i have seen multiple times.I thought about the truthful light it portrayed America in-a light of forced propaganda, media and the heroic ending to a tragic story. I thought of America's daily need to portray war in a comfortable way for the American people to sink their teeth around when the truth is - is that war is not comfortable. We do often change names, dates and faces to save face, money and votes. The stories of Jessica lynch, Pat Tillman and many others are told not to educate but to entertain the American people. Keep them interested in the battle that we are fighting.Since when did your war become tainted with reality TV like stories.

Can you imagine what today's Veterans think? I have had the pleasure of taking care of many different Veterans, WWII, Korea, Beruit Marines, Dessert storm and Yes even an Operation Iraqi freedom vet. These men are proud men- some pro war- but all are pro military. Whatever is it that there opinion is they have earned the right to speak it.They have ensured that other more cowardly less motivated people have the right to speak it too.

Anyway Flags of our Fathers.....At the end of the movie they speak of why men fight war. They fight in essence for the guy next to them and the ideal that go along with the membership to the republic for which they belong.They illustrate the camaraderie and pride that come from participating in the armed services. They speak of how their Honor, tradition, special training and selflessness make them elite.

As I wait this year out with Brian's deployment orders staring me in the face, I realize that this may just be the bravest I have ever personally been. People say - oh that is a long time away. Well no not really and further more things are escalating at the Afghanistan- Pakistan border. When I watch Flags of Our fathers, the patriot, saving private Ryan and when I hear the annual message at the ball from he commandant of the Marine corps I am prepared at these times to except that Brian is a part of something bigger than most people can understand. He is dedicated American who has given up his teenage and early 20's to sailing the world and training for the worst. He is a man that despite having a family and a civilian peace keeping job chooses to give his time to keep America Safer. There are men and women all over like him doing the same thing. They are quarterbacks of history, the defenders of freedom, America's task force and whether you think so are not they are keeping us safe and liberating other imprisoned people.

Brian loves what he does.He lives and fights for the guy next to him- for the American next to him...Just like the movie said. People ask, is it worth losing him to? My response- I cant think of anything else worthy of losing him to. Weather he or anyone else who loves him wants to admit it he was born to make a difference, born to be a Marine. He is deserving of that which brings him great honor and pride, to participate in the live scenario for which he trained all these years. I believe that Brian has always loved America in the way that I love America, he has said it in that way.But I think Brian began to appreciate himself and respect his own existence when he joined the military. When his feelings of poverty(in a broad sense) were overrun with earned pride , honor and a promise of commitment- and no one could ever take that away. I certainly will never try to take that away from him. I rather he die with honor fulfilling a dream than die of regret at an old age.

pay it forward

2007-12-08T17:16:00.000-08:00

Helping other people gives me a preverbial high. It creates a feeling of overall wellness and peace within me. It makes me feel good about myself and the kind of person that I have chosen to be. I feel great when other people need me because that means that I am needed and in turn often appreciated. Lately there has been a host if incidents where I have lended a hand to a friend or a patient whose life finds them traveling to places that I have already been. I need not ask the higher power why this occurs for I already think I know. When you help someone ski a trail that you have already completed you are acknowledging and validating a part of your life, how you functioned during the time and how you eventually made it over and down the slippery terrain safely.

This last week was parts of my life played out in the scenes of other people's lives......

I have a girlfriend who's child is autistic-she and I often discuss the anxiety of having an inconsistent child and how it feels to be alone with that child. I sat with her in her home the other day until someone arrived. I was in terrible pain with my legs but I sat there knowing that there was a time that I was afraid to be alone with my child. Everyday I still wonder which side of him I will picking up from school. I thought of all the times I have had overwhelming anxiety that someone just sat with me- and all the difference it made to me. I could see the difference it made to her. I was glad to be that person for her- that person who just sat there.

I have another girlfriend who has a set of twin boys. I have been assigned to this nurse as a clinical mentor at my work. I have always felt that she and I have much in common (self esteem and anxiety wise). I went to her home the other day and met her sons, beautiful, intelligent, and clearly spectrum. I revisited a very vulnerable and lonely time in my life where I could most definitely relate to her oblivious/denial nature. I felt as if I had stepped back into my past and I instantly felt like I wanted to help them find their way out. The old Benny Margolis song, "If I could fly - I'd Pick up up and take you into the night and show you love, like you"ve never seen........" From this moment on it became clear to me that our pairing up as nurses was only shear coincidence.Our destiny would be that I could raise awareness, prompt better treatment and help some of the loneliness and guilt that goes with having a child diagnosed as delayed.
We are the same years in age, but we agreed tonight that we have a mother daughter kinda relationship. We both agreed we are comfortable with this. I was honored that she would choose me as preverbial mother.....She is my conscious and verbally reminds me that I am a great nurse and great mother and that alot of what she knows I taught her....I cant think of anybody more fitting for a low self esteem like me....

I have another acquaintance/friend who just lost a baby during pregnancy. I have reached out to her instead of her coming to me.I know what she feels deep inside and I am not sure that many do. She is paralyzed by her emotions and I remember all to well what that is like. She has asked me to write her birth/obituary announcement. I was honored but found it very cathartic. I was reminded how much I still wonder about my Carlin and wonder what would have been. But I am reminded that I have successfully grieved this loss- which proves that I am capable of this for other areas of my life.

Things are not small nor coincidental ...the Chaplin's message today at the hospital I work at was" Nothing is to small to not make a difference. A mosquito is small- but it is a big deal if it is flying in your room at night"...........

I believe I can make a difference by the way I treat people. The way I treat people comes from a desire to be treated fairly and with validation and respect. Nothing is a coincidence in this life- each minute of every hour is orchestrated to be interconnected with the minutes and hours of someone Else's life.It is how we spend those minutes and hours that counts.

Its 28 to life

2007-12-08T16:52:00.000-08:00

At age 28 I cannot get out of bed some days. The other day was the worst. Started with lower back pain and left leg was completely UN able to move forward. Just when I got over having an episode of incontinence in wall mart- I was reduced to being carried from room to room by my husband and dragged to the bathroom (By my arms). When I was being carried I remembered the empty weak feeling of my legs and wondering, When will this end? I have as of late spent entirely too much time in doctor's offices. I have googled everything in hope of adding to my vast medical knowledge. The truth is everyone wants to admit that something is wrong- brain lesions,cognitive, memory,speech impairment and degenerative bone disease as proof. Proof of what though? Some will say it is immunologic, some multiple sclerosis but it all ends in a great big diagnosis of nothing yet. It is frustrating Mris every 6 months, blood work every 3months, lumbar punctures and nuero/behavioral evals. I have a neurologist, a rheumatologist, dermatologist,gastroenterologist, a psychologist, a nueropsychiatrist and a partridge in an undiagnosed tree. I just keep on going - and when I cant feel my legs, or i forget to take my cloths off before I get in the shower, or i forget my way home or poop/pee my pants- i just think god it is great to be alive (and not to have all the anxiety I had when I moved).

See the truth about being the kind of nurse that I am is, I see alot of bad things and alot of horrible deaths. I see people lose all their faculties and look way older than they are. To watch me walk sometimes you would think i was 80. But- if this is all i got to deal with I think I can handle it so long as I am allowed to live a life at least in to my 70's.

Sometimes I feel my pain kill Brian as much as it kills me.As I lay in bed unable to move most of my lower half he leaned over and put his head on my shoulder and whispered he loved me. I thought God I need to get better because he loses it when I am out of commission. I mean he absolutely goes crazy. As my family and Brian filtered in and out of my bed room that night I felt very supported.I would like to feel like through my own caring ways I earned that support and that no matter what comes of my medical fiasco that they will all do their best to be right there. I realized that I am kinda the center of the family . The home base. I have always been labeled the "needy"one- but I think my family needs me to need them. I Believe at times they need to be around me more than they even know.

Time will tell...........

2007-12-08T16:10:00.000-08:00

As I closed the door to my daughters room tonight , the whole thing seemed surreal. I checked on my son who had gone to bed at 5 (God I worry about him) and I began to wonder when my life morphed into what it was. I feel like time has flown, I look at Sam and Morgan and think- woah (Joey Lawrence WOAH) I remember him so little when we lived in our old house crawling along the floor ( Breath sniffle) and I remember carrying her in my stomach and feeling her differently than I did him. Lately Morgan has change a bit. She had gotten sick and everything has been down hill since then. She is the typical two year old above average in intelligence (per her doctor) but she is less responsive to things she should be responsive to and more responsive to things that shouldn't grab her attention. She spins, flaps, bounces and has an extreme amount of guilt and anxiety for her age( I am sure some would say the same about me). Average everyday people would not see anything wrong or different about her because they do not live with her- but her teachers in the preschool and some family members see what I speak of. The same family members that knew from day one that something was different about Sam. I am not saying that she has a pervasive developmental delay because there is nothing delayed about her - if anything she is above where her peers are so much so that I sometimes feel like I have a 2 foot 45 year old walking behind me. Since her preschool teachers brought somethings to my attention I have had her profiled for SID Sensory Integration Disorder, she scored at risk. Who the hell isn't sensory right- we all have our quirks- but when you are so perseverative on something that you cannot complete something else than you got a problemo......

I have believed for some time now that she too has epilepsy.This epilepsy may be in fact why she constantly craves input and why one minute she is fine and the next she is out there. She has many of the epileptical form steropities that her brother has (predominantly lip licking, smacking, sliding head, twitching eyes, picking at herself as well as stare spells where she is unresponsive. Her teachers have noted to the "Absence spells" the agitation and profound anxiety/guilt (Is it my fault mommy am I to blame? is me being a bad girl is what caused this?, Is daddy coming home? He didn't die did he?) I mean really what 24 month old talks like this and nearly bites her entire nail off if she feels guilt. I am driving in the car with her the other day and she become severely agitated and is screaming her head off.A minute later silence. I look up in the rear view and her head is completely over in her lap. I pull over on the high way thinking she choked. I place my hand on her head and race it . She is dead weight. I don't see her respire much but I see a bounding pulse in her neck. I pull back her eye lids and her eyes are rolling side to side like she is in rem. I attempt to arouse her and call her name, shake her, put her hand in cold water, put the window down, stand her up......nothing.....I have been here in this spot a thousand times with her brother.I get back in the drivers seat and think- damn this is so not happening, but if it is it so makes sense. I watch her for the next few minutes and see a fine motor jerk in her right arm and leg. It is constant for at least a minute. I call my sister on the cell who gives me the "well you figured this get her help". But there was nothing to do because if she is truly like SAM than she will wake up and be fine. No sense taking her to the ED. I called her PED. He said to go to the ED - I refused on the grounds of what I just said. I decided to take her to the office at least we would not sit for hours there. We arrived and she was still out.I shook her and opened the door to the cold. I tried to stand her up , shake her, sternal rub the whole nine. Finally after shear fear and frustration i slapped her across the cheak,....nothing....one more time and this time I let it rip....she awoke just as I knew she would confused, clinging,needy- but then in no time like she didn't miss a beat. The doctor looked her over and once again stated that he felt she was extremely intelligent for her age. He said that of course she appeared fine but with the changes in her and the family history he handed me a slip for an EEG. NO way I thought....I made this whole thing up- I blew it out of proportion- I wasted every ones time- there is nothing wrong with her........

I still am holding on the EEG.Fearful that my gut is once again speaking to my heart and mind. I don't want to face the reality that both are children are neurological compromised and disabled. We struggle to control Sam's seizure activity now after a year of treatment and meds. I worry that he will never drive, have the job he wants, go in the military, whatever it is he wants to do because it strikes at any moment and it has in some ways a two steps forward three back feeling to it when it does happen. More importantly I worry about this overwhelming anxiety she has .It effects her sleep and at night she is the terror I remember him to be.Every night when I close the door to their room I wait to hear the slam of her head and body against the door because I feel like we are at that stage with her. I am not sure what I think anymore but I know whatever comes we Will handle it.

My mom watched them today and she gently asked if I noticed how Morgan is- I kinda gave her a this is me you are talking about. There isn't much about my children that I don't notice. I do however see other children- and compared to other children they are more on edge and fixated on things that are not so important...chip off the old block.

My wish for both of them was to be happy. I believe for the most part that they are- however they worry to much for little children. Their environment causes them to worry as they interpret it slightly different than we do. I think a weak neurological status puts you either on high alert or in no mans land.

Brotherly love...

2007-11-07T20:29:00.000-08:00

Many of you who read this blog know that my dead brother in law (whom Sam is named after) has in the past communicated with me through dreams or deja vu experience . Back when my mind was a lot less cloudy- I frequently felt like he was with me and talking to me in spirit which was odd cause we never met. Well tonight for the first time in ages on the way home, I felt like I was not alone in the car . I was excited by this because the majority of my clairvoyance and communication with spirits from the other side has ceased since my emotional health has declined.perhaps I just have an overactive imagination....

so tonight I am driving, I look over as I smell cigarettes. I think ok- this narrows it down. I did not see hear only but two things:

1) Everyone gets lonely at times. I lived in some of the most populated cities and had alot of friends but i felt alone most of the time....

2.) and then strangely- it is shame that Joe Torre is leaving the yanks....

I notice Samuel David #1 always visits when my Samuel David is in a pickle. I have always thought that he was looking out for him.

A part of me that I love...Nursing geeks unite

2007-11-07T19:54:00.001-08:00

"Ultimately, you can't weigh or measure anything about yourself that really matters. Your vision, integrity, passion, intelligence, and kindness will not register on a bathroom scale."

Reminds me of one of the many things that I love and one of the few things I love about me.I remember being about 10 and standing at my grandfather's hospital bed watching the nurse change his colostomy equipment.The smell of the hospital, the nursing uniform and clogs, the beeping monitors, the bags and tubes-all this caused a flurry of excitement inside me. I remember asking her, (sara -I remember her name)if I could help change the bag. I remember my grandfather's apprehensive pride and belief that I would do something with this knowledge and delicateness.( I have not thought about him in so long). I loved him more than I could ever possibly put into to word, but from 10 on I took care of him and showed him just how much he meant to me and then a nurse was born.
That day... I can see Sara in my mind, the pink intestine peaking from the abdomen, the foul smelling stool did not bother me.What bothered me more was that pop had been reduced to this appliance to keep the cancer from spreading.As Sara ran me through the motions I looked at her in awe thinking- i'll never be like her, I 'll never know as much....Like a kid who wished for that hot item at Christmas, I wished to be a nurse. Passing My boards was the biggest thrill,seeing the inside of a body as it layed on the operating table with all the organs looking like they did in text.Holding the hand of the dying, while holding the hand of the loved one that is dying inside.Making a great assessment that yielded better quality for my patient.Savoring the silence of the quieted heart that suffered while cleaning the spiritless body.The brightness of blood, hair loss,vomiting,sepsis....it gets me higher than a kite.
Restoring people to wellness (which is what nurses do) fuels me.When I am at work I am confident, self trusting, invulnerable,not hesitant.There is not doubt in my life that I have become "sara". I enjoying other people find their inner Sara, just as much as I enjoy my own case load.
My favorite thing to teach a nursing student that I am precepting is how to listen to what your patient is telling you when they are not speaking.What do they say with their eyes, their posture? what does their breath or wound smell like.What is the color of their skin or their blood as it comes out of them.With what speed do they move? What does their breathing sound like when you close your eyes? how can you tell they are dying literally and emotionally? How can you place yourself in their shoes so that you can better understand how their feet feel.
Nursing is my passion, my first love,my sustenance. It follows me in my dreams-it is my dream.It is independent of the way I look or what size I am.....It has made me who I am, who I never want to stop being-someone I can appreciate- a part of me that I love.
When I am working I am proud of me, of sara. I am thankful to my grandfather who put his own pride a side to let me view the human body at its worst- to learn how to help, to heal, to hope, and to promote wellness.
These feelings could never be measured on a scale......
They have this whole thing at work, they call it scripted nursing. It is literally a script they want you to say when you enter a patient's room.I was offended when I heard this. I am only 28 but I an old nurse at heart.So, I run through the script as so not to be active non compliant and then I finish it with -oh by the way I have always wanted to be a nurse and I know I will enjoy taking care of you today!

self indulgence

2007-11-07T19:23:00.002-08:00

Today was not good, it was Tony the Tiger Grrrrrrrreat! Started with hair cut and small color. God a little color for me goes a long , long way. I am telling you Britney and I are staging a come back and it is going to be hotter than ever. I was in touch with my diva hood today-something that used to define me.I guess I just needed a hair transplant to switch me into KACHOW mode. After the hair rebirth i walked the mall which I have not done in a while.Bought myself a hot little number from Cache, in a size that I was satisfied with. I continued to 5-6-9 store to buy a sweet pair of cheapo jeans because i refused myself the 119.00 dollar pair in cache I wanted. Then it was over to BEBE and Aldo where I wanted everything ! Great sign that I am returning to the emerald city.

The reasons (as promised) why today was great:

I felt physically better.

got my hair done and felt better about my image

because I did something for myself

because i had minimal negative thoughts (now the therapist is asking , well why do you think that is)...felt better about self image.

When I bought a size 6 in cache realized my perception of my size may be slightly off( that is right Anna I said slightly.lol)

Sam seemed good in the morning

Morgan was dressed to the nine to go to school , she is so cute.

point #21546546464 do something for yourself daily that makes you feel better. Indulge yourself that you are deserving and worthy of it (damn there are some words that can be analyzed). DON'T FEEL GUILTY AFTER! (yes people I did)

damn picture thing on this is not working- got a pic of the dress.

A horse of a different color

2007-11-07T17:30:00.000-08:00

I got my hair cut for the first time in about 6 months. My hairdresser would not color my hair because it was falling out my the head full. He was nice enough to give me back some of my bottled blonde in highlight form to some of the more healthy pieces of hair on top. I felt great after the cut as if i were doing something health for myself. Looking in the mirror at the salon I began to see parts of "my old self" come together briefly enough to remind me that there was a time that all I used to care about was the way that I looked. My hairdresser who might as well be on the payroll as my therapist grilled me on the change in affect l(little does he know it is better), the sickly appearance, the falling out hair and the lack of attention to the world around.

I said, hairdressers are equivalent to a therapist for people who are in denial that they need one (lol), you tell me from my looks what is going on. He said,"you are not over exercising (what are you saying I am fat) your face is not sunk with an eating disorder and control addiction (damn he is good). You do not seem depressed, but you are much quieter, less insightful,and seem distracted by nothing.You look as if you have not slept , you are colorless and your eyes don't seem to tell the same story as your body (this guy thinks like a women) more over you look sick, physically sick-(this is where he gets the joke in) different from your regular Prozac nation persona."

Well, I said in part you have hit the nail on half of its head. I am exhausted, from being exhausted. Sick of being sick.I do not feel depressed but unfortunately I meet all of the DSM criteria.I do feel physically ill and like I am physically dieing and it creates real hardcore anxiety and terror. This being a man that has heard most of my entire story because he is married to a woman who's pathological behaviors are similar to mine- allowed me to speak freely.

I am must say having survived (myself) childhood depression and anxiety (OCD), my parents divorce, obesity,my own divorce, a loss of a child to poor genetics (miscarriage in 2nd trimester), Brian's deployments,my own eating,self injurious and alcohol disorders, moving and my son's Autism and Epilepsy I am pretty well in touch with the spectrum of grief. I do not feel at this time in my life that any one thing has me anymore. Some have suggested that this combination is enough over time to break one down and have them feeling overwhelmed and burnt out. By knowing myself as well as I do, by having a working knowledge of grieving(because of my line of work) and psychology(from years of therapy) I find myself now in new territory-feeling different and confused about the symptoms that present.

I know depression, anxiety, cognitive distortion as well as a marine knows an M16. I am self proclaimed veteran and unashamed and not misguided when I call myself "freaking expert". What I feel these days may in fact be all part of that but I am not willing to surrender to the fact that "nothing physical" is there. I have enough MRI and blood work results to suggest that I might be on to something. My stregnth as a nurse (besides my bleeding heart and obnoxious empathy) is my ability to look at the systems of the body and make an assessment. I am certainly not bragging (we all know how negative about me that I am) but there have been times when my assessment has saved a life or improved the quality of one through my examination. The smells, sites and sounds of the body are my specialty. I only get better with time. I have grieved an accepted the fact that I will always have a form of chronic dysthimic depression or anxiety. Until I found this therapist that I have now (no disrespect to the others who were equally as brilliant) I believed that I would also be a victim to chronic cognitive distortion as well. I feel like with the proper leader and open attitude anyone can re route their cognition to be more positive and less forgiving of the past.

So, having said all that. I am no stranger to the fact that "depression Hurts" (physically). They have a freaking site for crying out bloody loud (depressionhurts.com). I am very familiar with the memory, attention, pleasure defects that can accompany a mental illness. I am aware of the chronic fatigue,changes in sleep patterns,muscle soreness and chronic pain issues. I have worn all of these symptoms like a cloak for many years on and off- this is and only this is why I can say that something co morbid (secondary at the same time) is going on.

Lets recap in a 12 days of Christmas fashion the concerning more physical issues:

Paleness, weakness, numbness and tingling in extremity's,headaches that come and go very quickly (different than in the past), profound sleepiness during certain points of the day which come and go like nausea. profound nausea like when you are pregnant.Tremor and jerking and shivering. Profound concentration and memory issues. speaking and swallowing difficulties, lost time( getting somewhere and not recalling how I got their or how to get home).Dizziness like you would not believe and documented orthostasis (low blood pressure in postural change), sinus tachycardia ( a fast benign heart rythm), an MRI which shows white matter lescions, a positive celiac titer, anemia, folate and b12 deficiancy, diagnosis of gastroparesis (inability for the stomach to empty on time), strep throat every week, an immune skin condition, arthritis in lower back and bulging discs on MRI.Weakness and stiff joints.

But wrap that up and throw all that out the window because none of it means anything. The doctors speak of Mutiple Scerosis, diabetes and Rheumatic disease but are unwilling to commit until more demylination is seen on repeated scan which unfortunately for me is repeated every couple of months. Anyone who knows medicine also knows that many of the diagnoses that they look at have comorid illness of depression. DUH!

So lately the most significant for me is these jerks I got. Most of the time I have a headache prior to or during. My ears pop in and out like on a plane. There is terrible anxiety an akethesia(Inability to stop moving or sit still) accompanying them. A cold shiver comes over and later A profound sweat requiring disrobing.

So I am at Sam's neurologist the other day (his seizures are out of control). She pardoned her self from commenting on my physical appearance. She stated that she has known me for a long time and is confident in her assessment that she felt that I was ill. She allowed me to speak freely about my desire to get answers. I told her of my therapist, my suspected relapse into severe depression, my experimentation with SSRI and SNRI medications, my nerospychiatric evaluation at a local rehabilitation hospital, my reoccurring infections, the lesions in my brain the whole nine. I spoke of my loss of time, inability to find words, laibility,disequilibrium, the feeling like I am watching my life and not in reality, etc. She raised her hand as if to get a word in edge wise. When she broke my desperate ramble she pointed across the room to the child who had just seized in her presence. I am a Neurologist. DO you have one of us yet. I said yes but they keep looking for MS. I have a gastroenterologist, a nutritionist, a rheumatologist, dermatologist, psychologist, psychiatrist, nuero-psychiatrist, and a partridge in a f'ing physician tree. Have you had and EEG? What Sam had I said?

HE is autistic and Epileptic.........You clearly have some nuero going on......your son has demylinated areas in his brain, your mother has white matter changes on her MRI and so do you.....TIme to do and EEG...Time to consider you too might have epilepsy. Your rapid laibility, behavior change in affect as reported by others may in fact be seizure activity.

After I paced around screaming about how ridiculous of a thought that was, after I had engaged myself in the thought that if I had an elliptical form on my EEG that I could now take blame for how f'd up Sam's brain is, after I calmed myself down from the distinct possibility of losing my mind and my license to drive all at the same time..... I thanked her for being so thorough and validating. I told her I would think about it.....

The next day she left a message on my cell-do this EEG, if not for you - for your 2 kids, especially the epileptic one. Oh and by the way we want your son to see a genetic specialist and be tested for metabolic disorders and it would not be a bad idea if you and your mother could participate with a blood sample......

The sweetness of Halloween

2007-11-01T09:27:00.000-07:00

(The following was inspired by holding a friend's newborn on halloween)

The scent of powder, the feel of silky flatness induced by angelic sleep-
weightless and trusting
tiny unstregthened arms wrap around my shoulders as if their love alone could hold the weight of the world....
Velvet for skin. Eyes colored with the dreams created by a shared intimacy and commitment to that life....

A new discovery of balance for that which houses pure unstressed thought, attempting to hold itself high with the confidence that love is the only language spoken.

Mother hovers over in an instinctual manner, uneasy with the most experienced of maternal members embracing her own. Her devotion and protectiveness is appreciated and understood.

Voicelessness is appropriate in this immature phase-however life (sometimes) finds its way to communicate through the silence while the soul develops.

Safety, warmth, contentment and comfortableness with the audible and tactile world is easily felt by the relaxed limbs and slower heartbeat. This being lives to be embraced, loved, spoken to and engaged.

For a moment my eyes close and I allow myself to share her stillness and open mind. I feel like I could learn from her trusting ways, seek protection in her non judgemental arms -by experiencing closeness with new life-allow myself to be reborn again.

My eyes close tight and for a moment I am engaged in my own memories of a not to distant past when I held my own son and daughter were small enough to hold close to my heart.

On days when anxiety overwhelms me I beg for time to breeze by and mature me with each passing minute.
When I hold new life, when I think of holding my own when they were that "new" and when I want so much to feel like I did back then...I pray and beg to whomever necessary to make time slow down....make life drag on in a magical dream like way it was on their first night home from the hospital.

Slow enough to not miss one movement, one breath, one sound, one overture of love.