Crystal Clear

Cancer, My Friend and the Blogosphere

A very dear blogosphere friend from The Wide Awakes has quite the story to tell with his post Cancer, Me and the Blogosphere.

He is truly living the life he has been given. On the eve of my surgery,with only a few silly silly silly anxious thoughts in the back of my head, it was just the right post for me to read before I head to bed.

Full of joy, gratitude and love for family, country and God... it is Crystal Clear, Cancer is no match for him. Posts like his need to be shared and spread far and wide.Take a moment to head on over there. I am certain you will be back and it won't just be for updates on his well-being.

On Easter Eve

    Twas the night before Easter and all through the house...The eggs are all colored, the baskets filled, and my heart is heavy and worn. How do I write...How do I?

    As has been my experience before, I find prodding as well as comfort in the blogosphere and the Wide Awakes community. Over at Cao's I see a beautiful rose in honor of Terri and the roses that will be placed at Michael Schiavo's home in protest. Eric of Vince Aut Morire inspires with this post and his Wide Awakes post Blood, Toil, Tears And Sweat .

    Perhaps the greatest comfort and inspiration came from an e-mail from Kender of Kender's Musings: (printed with honor and permission):after commenting on Eric's fantastic post he wrote:..

I believe I can speak for almost all of us, if not every one of us, when I say
We Are Tired!!
We are Disheartened.
We are Crestfallen and our Hearts Ache.
It is a sad irony that on the eve of the day that Christianity celebrates the Resurrection of its' Savior that we have been forced to accept the unacceptable.
That, on this night before we rejoice the promise of Life Renewed and Eternal Life, we must dry eyes that well up with tears for the life of an innocent woman who was the victim of evil men and the pawn in a game that would see us led down a dark and evil road.

Tomorrow is Easter. Spend the day with loved ones, and let not the sorrow that grasps your hearts with a heavy hand cause you to forget that, though this battle may be lost, there will be more to come.

I choose to believe that had Terri known of our feelings, our words, our actions, our Love and our hearts that surely she would have said,

"Weep not for me good people, but neither forget me when yet again you shall be called to battle the forces of darkness.  Instead use the memory of me to steel yourselves and carry on the fight, for the very future of all that is Good and Right may depend upon your resolve, your fortitude and your Faith."

Yes, this I choose to believe. Rest my friends. There is much yet to be done.

 Well said and greatly appreciated...

    My prayers and thoughts are with Terri and her family, who have shown me faces of faith, strength, courage, and grace.

Blessed Be

The Importance of He Said, She Said

The Importance of He Said, She Said.

I Would Not Be Able to Stand It

   

Remember if you choose to comment on this post that I AM NOT  A CHRISTIAN....
    However, I did see The Passion of the Christ (Full Screen Edition). I am not expressing  any judgement of any involved but frankly I guess I am not that good of a person..... If I were there I believe I would storm the building and (yes if I didn't have children) risk being beat up and shot to give her water or food or take her from there....I am amazed at the restraint of the people there... ......I most certainly would do it if it were my child being starved.... I don't understant how she does it...the Schindler's faith is truly inspiring....Please underdstand I  am just terribly moved and upset by this and am ....I guess just live-blogging Fox News as we await the answer.... I missed that great part of Hannity but saw the end and am very very proud of him and Greta.....I plan on moving to CNN in a moment becasue I like to surf some of these stories from all stations and frankly don't care for any of them....Next post  will either be about the letter I am going to send to my long time most favorite Talk Show hosts John and Ken of KFI640  because of today and this afternoon I have decided to completely stop listening to them unless they apologize formally to the  man they were screaming and raging at  (Lou Sheldon of the Anaheim-based Traditional Values Coalition) .this afternoon who was on the show on behalf of Terri...right now I am going to go do a bit of story time..most definitely a distracted mom tonight.... I willl continue blogging this in a bit....

Crystal Clear Saturday Roundup

     If you couldn't quite tell... I was quite distressed, outraged, and incensed yesterday afternoon... I spent the rest of the evening replying to some readers and scouring the web while listening to Amazing_Grace over and over and over...and OVER...
    I have written to some readers of my fear and anger and struggle with feeling my faith was being wrestled from me...I hate that feeling.... By the time I finished "wrestling" and was safe in my faith again,  I had to head to sleep as I had to be at a mandatory continuing education seminar in Woodland Hills today at 8:00 a.m. on of all things....Domestic Violence: Assessment & Treatment with Alyce LaViolette of It Could Happen To Anyone : Why Battered Women Stay.
    Several colleagues around me found the seminar to be uncomfortably cursory and elementary.  I came away with a few Crystal Clear inspired gems I couldn't help but want to share with my few remaining  but faithful blog readers and those of Blogs for Terri , especially with regards to Tim of Blogicus' suggestion I  provide more of my thoughts concerning  Michael's current behaviors in light of my previous thoughts.

    In that post I wrote about the misunderstanding many have about abusive men. Today some interesting numbers regarding the behaviroal characterizations of abusers were presented by Ms. Violette. As I generalized before, the numbers of monster Antisocial/Generally Violent Sociopathic abusers is reportedly only 8%-25% of abusers. These are the monster types....the type most lay people think of  unless they have dealt with an abuser before. Think CRIMINAL whohas high likelihood of drug/alcohol problems,  has violence problems with everyone and has a difficult time functioning in society.

    The other numbers presented  refer to  Family Only  also called Hitters/Infrequent Abusers as between 50%-56% of abusers. This type is  behaviorally characterized as  having  among other things ...observed low  rates of violence in family of origin, low to moderate impulsivity, adequate social skills in non-marital situations, lower level/sporadic violence, and remorseful/more empathetic. Think of the guy next door who has a job and kids and you would never suspect of flipping out on his wife and family. . The other group, Dysphoric/Borderline Overcontrolled Hostile group of abusers, was reported as between 25%-42% of abusers. This group in comparison to the Family Only experienced more parental rejection and child abuse, low to moderate extra family violence, some substance abuse, low to moderate level of empathy, hostile attitudes toward women, and high level dependency on wife. Think of the kind of whacked neighbor next door who inappropriately overreacts to small transgressions, may have hard time getting along with others in life, and you just really don't like very much but don't always have a reason as to why you don't like to be around them.

    As you can see from the numbers...

The vast majority of abusers are people we'd probably never suspect and are amongst us right now.   

    As far as how I see Michael from the time of Terri's collapse to present day, I feel obviously I need to again throw in a bazillion caveats and disclaimers. That having been said and hopefully very well noted by all,  Ms LaViolette brought up the Woody Allen movie, Crimes and Misdemeanors.From her description and example of that movie, I sat bolt straight up in my seat and thought of Michael Schiavo.

    Having almost killed one's beloved, how the heck does one live with one's own criminal misconduct? For a while there are actions out of love as well as guilt, shame, and remorse. Gradually over time there is a distancing..,you don't see  the beautiful young woman you married to be the mother to your children...you see suffering YOU know YOU caused...Where her family sees Terri, YOU just see a shell of the person you loved ...and you can't stand it...You can't stand her dependence and you can't stand her weakness and neediness. You can't stand knowing  you are to blame so through  externalizing blame onto doctors and nurses and anyone in your way, you come back to an emotional homeostasis.   Abusers are highly adept at defending their own integrity. Through the distancing of time and the distancing of one's self  from the problem and one's own actions, one can move from a heinous crime all the way down to considering it a mere misdemeanor.

    In Michael's interviews as well as his determination to kill Terri, I believe we can see how well indeed he has faired at accomplishing the gradual distancing of himself from the problem, the externalization of blame,and seems to have sincerely convinced himself if not all of us that the problem really is the congress, the senate, the governor of Florida, the President, and of course that infamous  Big Brother sticking their noses in his/Terri's business.  At this time, everyone else is to blame for his troubles. Everyone except Michael. Wickedly, with the assistance of Felos, Greer, and the  death culture,  he almost found legitimacy.

Crystal Clear UU Sunday

With recent comments and questions about  UU principles, I decided to start taking, at least for this Sunday, time to write about some personal reflections about UU Principles & Purposes...I think you will find at least in my experience of UUs, I am among a smaller part that is more conservative politically and socially than the rest. I am Pro-life and voted for President Bush although I loath his plans regarding  a guest worker plan and have very strong feelings, thoughts, and experiences regarding illegal aliens.

   

    I lovingly joke about my Ventura UU congregation that you can't trip without falling into a therapist. Therapists and social workers tend to be I think most would agree a more liberal group of people and so it seems people (not just tp) are somewhat curious on how a therapist and a UU....are quite Conservative politically and socially... Thus arrives a series (I hope and plan for if there is interest) of posts that might even entice more conservatives who aren't completely comfortable with Christainity to explore UU...or just to share some grist for the mill ...or for my own spiritual practice...

We, the member congregations of the Unitarian Universalist Association, covenant to affirm and promote:

The inherent worth and dignity of every person;
    I remember reading all of the tenets of UU and thinking YES! Yes I do, I   want to publicly agree to this covenant as well as affirm and promote these principles. I was so excited to find an "organized" religion that I could embrace and feel a true relationship with in calling myself a member. After years of feeling "left out", because I didn't accept Jesus Christ as my savior, I was finally appreciated in a place where I could explore my beliefs. I could reconcile as well as affirm the  faith I held in my heart and person. I began at this point to really wonderfully and with great relief and peace begin to for the first time in my adult life feel congruent with attending church and want to  refer to God. I still believe I would be a different and better person if I had known of UU earlier in my life.

    How though could I and how did I and do I find myself affirming and promoting people like Hitler, Timothy  McVeigh, and Osama Bin Laden as well as Mother Theresa, Jesus, and Gandhi?

Crystal Clear Problems in Jumping in Mid-Stream to My Blog

    Yesterday's (a bit provocative even in my eyes too) post seems to have brought forth some questions and thoughts by tp regarding congruence between my values, my religious principles as a UU, and illegal aliens of Latin American descent. Part of why I posted it is still in personal process and research. All I really can say at this point is...well ...stay tuned... it is in development and has to do with some honest and valid thoughts and concerns ...yes...in my own mind about skapegoating and scary  historical similarities.  Contrary to what some people may want to think or believe about me... good or bad...I really am not an idiot.
    There is a passion and genuineness  in my blogging that I especially enjoy  and don't believe I will ever tire of...it has to do with putting thoughts and beliefs out there into the blogosphere that are  not necessarily always Crystal Clear or crystallized and seeing what happens next. Of course the dangerous and potentially uncomfortable part is that there are times visitors will will have not only their own valid opinions, experiences, and values regarding an issue to interpret my post(s) by but then jump in quasi-midstream without having read much or all of my other writings and share virtually nothing of their own background in their comments making a point or asking for clarification. Many times the clarification requested by a commentator is already there in previous posts or in the longtime running themes of my blog! Even if all of my posts have been read and digested there remains the possibility there will be respectful disagreement. I can handle respectful disagreement  and won't lose sleep over that or ever try to hinder  it in  any way. However, I  still have a great deal of ambivalence about letting comments "hang out there" that are  not supported with facts or links to relevant information and are indeed distortions. Example, illegal aliens are not illegal immigrants or undocumented workers. Just as I would have been rightfully considered an illegal alien in Japan or Hong Kong if I hadn't procurred the right legal papers...people who overstay visas, don't have visas, etc..are indeed  illegal aliens. They are here illegally. Immigration is a legal process. If these individuals  were here legally, we would be having a different discussion. I grant you there would still be a great deal to discuss in my mind about immigration reform...but it would be a different discussion and exploration.
    My personality finds it difficult to leave questions, comments, and gross distortions  hanging out there in the comments section. Yet there are times when I frankly would rather blog about something different and figure that "theme" will most likely come up again at some point in the future and I will pick it up when I feel interested. However,  I also feel a great responsibility  to provide the information or links requested from commentator(s) where I feel it is necessary or useful to others. Unfortunately, I surf a great deal and don't always remember where I get my own information from! I can assure you, and frequent readers who trust me know this to be true of me... I don't just take MSM information at face value. I always try to seek out the actual document or report and read it myself even if I don't remember to post a direct link to it. I also always use my own personal experiences, knowledge, and training as a psychotherapist when I blog. I feel this is part of what sets my blog apart from the plethora of "me too" blogs and "me too" posts on blogs.
    Nevertheless I am still not sure whether I am more comfortable or uncomfortable with someone who knows me and  respects me  but often disagrees with me such as Andy and Amy having a question or comment hanging out there that goes unacknowledged or the person who is just surfing on by...I do know whether the comments or questions come from a new reader, a stranger, or frequent reader... I always take questions and comments seriously and always greatly appreciate them whether I choose to blog an answer or not...

Could Have Gone Without Panties at All

Please pretend you don't know me.
Ok...so you really don't need to pretend...
Depending on how much of my blog you have read though you may or may not know that part of why I started blogging again was to deal not only with the stress of getting a diagnosis for Nethan but to have a record of the journey so that some mom a mom even one mom at some point in time could find this and  read this and know she was not crazy and that she needed to keep pushing and pushing and pushing. I did not start this blog to go off on tirades about illegal immigration or the war in Iraq or how much I love my country. All those things have been ways to spend some time as we go along this journey but the real reason is coming home now again to roost so to speak.

Although yes I know and admit I am a bit crazy... I have known all along something was not right and that indeed there was something W R O N G with Nethan. Appropriately so, I named that feeling and referred to it as the Mommy Alarm and at times have written and spoken about it as BLARING and then going on Snooze.

     I blame myself for not really sticking it out with the first or second or third GI  ok well I  really don't blame myself for not sticking it out with #2 Dr. Harvard idiot at UCLA but well I can't help but blame myself for NOT just sticking it out with the first Ped GI in February 2004 and making him do SOMETHING...
And if I could ever forgive myself for not sticking with him , how do I forgive myself for not going ahead in June with the surgeon Dr. Burns at CHELLA who wanted to do the biopsy for Hirschprung's Disease...NO I had to be Ms. Know-it-All and had concerns about his developmental issues and Hypotonia and  wondered if it might not be some type of Muscular Dystrophy and so wanted a muscle biopsy done at the same time as the nerve biopsy and so wanted to wait for a Neurologist to tell him how to handle the muscle tissue Only the Neurologist at Muscular Dystrophy Association didn't think muscle biopsy was needed and wanted to shuffle us back to a GI...so then it took firing the 2nd Ped Neurologist at UCLA Dr. Grossman...DO NOT blame myself for firing him- and would NEVER suggest anyone waste time with him) who also didn't think a biopsy was necessary and then finally on the 3rd Neurologist Dr. Baum, I got the clue that I needed to stop firing these arrogant rat bastards and try to stick with one of each to get them to see I was serious and knew what I was talking about and that there was and is something wrong with Nethan... Along the way I have had to deal with far TOO many people asking and suggesting about could it be his diet...or a milk allergy or could it be the breastfeeding or about have I tried homeopathic alternative  health shit or an acupuncturist or chiropractor...Yes I know trying to help but how do explain to each and every soul that you are doing the very best you can even if it isn't good enough and that you are  having to charge the god damn health insurance premiums and co-pays and trying to also work a job and raise a healthy boy you can't even get to Tae-Kwon-Do regularly enough for him to test for his first stripe?

So here we are. I finally stopped firing doctors. I finally embraced my position as the crazy histrionic Peri-menopausal single mother who lives for her kids who is starting to now also have health problems of her own. Admitted,  to both the Neurologist and the Gastroenterologist that I would not fire them...YET  and would try to stay with them but that I didn't agree with them at all.
    So in today's follow-up, which there was a high degree of a chance would be with a different Gastroenterologist since it is a team from CHELLA, it actually was the same doctor. Dr. Derdoy. Dr. Derdoy who saw us back several months ago and assured me that the problem was functional and admitted that indeed functional fecal retention wasn't very assuring or enough for parents BUT that he really didn't think it was Hirschprung's or anything ...Just be happy he was going with the ADULT dose of the ADULT PRESCRIPTION laxative Miralax. And he could be on it for years and years...Shoot..here is THAT summary of that visit...read it for yourself....Today...armed with my big girl underpants and a bunch of photos of his belly I waited in the lobby assuming it would be a new doctor...Ends up it is Dr. Derdoy again and although nobody had the common sense to FAX up the records from CHELLA (were seen at the monthly clinic up here in Ventura)  he only needed to look at Nethan's  belly this time to say yes there is something wrong with Nethan. Now he jumps all the way from don't worry about it to the other end that he wants a surgeon to perform the HD biopsy and to do it not only in a full biopsy but wants a lapraoscopy performed to have 4 different segments biopsied....that yep...thinks it could be HD or something along the lines of Intestinal Dysplasia...Which folks...is what I wanted ruled out back when he was ....

3 MONTHS OLD

Not only that but thinks and forgive me because I am too tired to look up correct medical terms and links right now  but that Nethan might be a good candidate for one of those valve things they use to feed kids parentereal nutrition to relieve the pressure/distention or to realize there might be a possiblility of a colostomy...Reassures me that we need to do the surgery to know

what is going on but that yes..there is something wrong with Nethan....
We are first going to start off with an upper GI which should be scheduled by the end of the week. He needs to speak with the surgeon and we need to get pre-authorization for the lap but plans on it not being too far off in the future...Oh and tells me I am doing a fine job as it is Crystal Clear Nethan is well-nourished and is on his growth curve and thriving emotionally...

Folks- No we don't know it is the HD or NID which I have my blog to show I thought those should be ruled out way way way way back ...we still have no clue and yet I am supposed to be happy...no ...ahem..relieved??? we are finally making headway???? It has taken many hours for me to be able to sit here and blog this....Trust me... I am NOT relieved I am NOT happy.... I am PISSED off....Then the stupid therapist in me reminds me that my anger is out of my fear. I do better, as do most people, feeling pissed off than feeling fearful and powerless. Obviously I have every right to be pissed off but it won't get me or Nethan where we need to go...I am angry with myself and the medical profession but I should know better than to back down from my Mommy Alarm...So although the anger flares up and I am letting it do so...and I don't know how long it will do so...I let it slide into fear... and there my friends is the answer.....

The answer is in faith...my faith. My faith is 100% certain and unshakeable and true and solid and will not be rocked...This is all supposed to be...I was meant to be his Mother and I am his Mother and I know we can handle whatever comes our way...with Faith....

Yet Another Reason to Love the Internet

Register to VOTE! Yep...Frankly I don't care whether you are a Democrat or Republican or Independent and I honestly hate discussing politics with people who try to change my views...I may some day throw in a political rant or two or more just because I want to share my view not because I want to debate it. Most people are shocked to know I am registered as a Republican...But like I said I don't care what you are I just really want everyone to vote!
Yet another funny thing is that I think Politics are a lot like Religion. Once again I really don't care that much what religion you are, I just really hope you have a faith and practice it genuinely. Most people are not shocked to know I am a bonafide member of the Unitarian Universalist Church of Ventura. Unfortunately, I have not attended as often as I used to over this past year but when I do attend I am still welcomed and still known. I am sure when Nethan gets a bit older we will attend regularly again. I am probably one of a very very few registered Republicans at the UU church. Sometimes I wonder how I am a "religious liberal" and yet a "political conservative" and other times I am certain it must somehow explain how and why I am single and never remarried...Yep I am quite a paradox...

Cont'd Revisiting Several Miracles

Thanks so much for the birthday wishes!!! I really appreciate it. Definitely improved my day because it started out with a skin cancer check and having 2 chunks cut out of me to biopsy ...One to biopsy for skin cancer and the other to check for a neurofibroma.Well if you haven't read yesterday's post I would stop and read it and then come back...

Re-visiting Several Miracles

In about two hours I will have really entered the 4th decade of my life. Yesterday, friends from work celebrated my 41st birthday with a scrumpdilicous potluck. I was quick to point out I would not be 41 until Wednesday but they just chuckled. Phenomenal food and company. Like a well fed cobra, I will be digesting it for a solid week. Hopefully the smell of garlic won't last quite as long.
Consumed with worry and fret regarding Nethan's health I nevertheless paused for reflection on the potluck 2 years ago. Yep, May 25 2002....

Tick Tock

Down to the last hours.
A few times I have reflected on how all this anxiety about Nethan has cheated not only Nethan but Bryceton as well. That of course led to the reflection of how cheated I feel. I feel so cheated of enjoying Nethan and even Bryceton a bit these past few months. This day in day out worry takes its toll. I have no idea how people with children with serious, chronic, or terminal illnesses manage. I think this must only be a glimpse of what they must deal with day in and day out. I am hoping the realization I feel cheated of the past months is enough to snap me out of missing the future. It is not fair. Life isn't fair. It is awful. It stinks. However, there are still moments. In fact, there are many moments each day I can hold on to and savor and treasure and cherish. His laugh and his smile can fill my heart if I only will let them. The way he molds himself to my body and thoroughly loves and enjoys me, those things are not awful. They are what keep me going and I need to stop and remember ...

Ok God I Get It

I finally seem to be coming back into it. At least part of it. I research and research and research to get back to what I kind of already felt or knew in my heart. I originally stumbled upon some thing on Neuronal Intestinal Dysplasia a while back. I thought it made the most sense for Nethan and it made sense too for what Bryceton went through back years ago. Just because HD is more known doesn't mean Nethan's isn't the NID. I think Nethan will grow into his colon and I need to STOP fixating on what is wrong or finding out what is wrong and do a better job at fixing it right now. DUH she says as she hits herself upside the head.
With my umpteenth zillionth google search on various gastrointestinal subjects such as suction biopsy and NID and various combinations of such, I hit upon a new site.Denise's post sounded similar to my experience and since this was just in October I just had to know what happened to her daughter. So I emailed her and received a very quick response and offer to chat with me via AIM. As luck or fate or God would have it, she was online. We had a chat and bless that woman for the struggle she had to go through as well to get her daughter appropriate care. Chatting with her helped me get me back to where I slipped away from regarding Nethan. I now know what I am going to do, or rather continue to do. And more importantly it has helped me to manage this anxiety about MD or tethered cord or whatever other thing I might google up... His developmental stuff is likely linked to this constipation but not that they necessarily go together as part of a disease. He is in pain and has been in pain; when suffering a little one can not also take on regular growth and development. Thus, we get the constipation worked out and the developmental stuff will follow. Simple, huh? So why did I get so off-track and side-tracked? Well just answered that one for myself, cause that is who I am. I do that. I learned an awful lot in the process but didn't need to really do anything else other than pray. Yep, just always turn it over to God. It does work and thank God it always will work.