Unclench

After my son's latest psych doc visit we have adjusted when he takes his meds and cut one medication dosage in half. This has shifted a few things for us. The meds tend to make Lexi drowsy and create more of a challenge to focusing so putting the Lion's share of them at night has created more energy for him during the day.  This is fantastic for focus at school. He is actually engaging more in his academics and feeling more hope about school.  It also means that at night he does actually get that drowsy sleepy feeling and has been going to sleep on his own somewhere between 10-12.  My son has not slept well since he was five. Since he went into high school it has gotten significantly worse winding up last year with a 7 week insomnia track that ended with a psych hospitalization. Honestly, for him to get 4-5 hours of sleep a night was miraculous. For the last three nights he is getting 8-10 hours of sleep.

Since the addition of the new med, Fanapt, his symptoms have diminished, the rages have stopped, the suicidal threats have disappeared and there has been no self harm and all hallucinations have basically left.  As I said in an earlier post, it seems as though the darkness that gripped him has let up.  The doctor said that the Fanapt not only addresses the hallucinations but it also addresses that clinical depression and suicidal side of his mental illness. The Lamictal is supposed to help level out his moods, which it has for a great part and the Geodon is a cousin to the Fanapt but wasn't really doing the trick and is the med we are cutting in half to see what role it actually plays in the cocktail anymore.  However, the new med does not address the mania.  Lamictal is not fantastic at stopping the mania either. So now I have a kid who has been getting some good sleep and is no longer drowsy during the day and instead paces and talks A LOT telling me all the things he is looking forward to.  The list includes holidays, gifts, money, jobs, cars, movies to make, foods he will eat, and so on and so on.  His stemming is beginning to drive me crazy, he walks around tapping a golf club on the floor every where he goes.  For the first time in a while he has some energy to burn and has forgotten ( like any good teen ) how to put that energy to good use and instead walks around bored and stemming and telling me about all that he "can't wait for...".

Don't get me wrong, I am grateful for the progress.  Improvements are improvements and I am so glad he is hopeful and has energy and is not using it to plot suicide. What I am noticing as I unclench during the day is that I have this overwhelming sense of exhaustion.  I am fatigued all the time now.  I suppose now that I can let go of some adrenal based responses my body is now finally feeling tired. Holy crap am I tired.  I have so much trouble focusing, even my vision is blurry.  I have been tired before, I did summer stock and turned shows over in 48 hours, I have pulled all nighters in college and law school. I have toured with an acoustic folk rock band. I have raised two kids up all night with screaming babies. Never have I felt this fatigued. It is quite a phenomenon for me.  I just want to lay in my bed and stare for hours, maybe even days.

Here's a riddle, why then can't I sleep.  As I lay here tonight, hearing my son snore loud and steady above my head in his own room, sleeping sound...why can I not pass out and sleep???  I lay here and my chest tightens, my muscles twitch and I feel like I can not get enough oxygen.  There are moments I wonder if I am having a heart attack. My mind won't stop. As exhausted as I am during the day, I can not sleep.  I still hear every sound and I stay aware of every movement.

For those who do not know I have a version of juvenile macular degeneration called Stargardts Disease. I am not blind from it but it is a visual impairment. One of the symptoms is that my eyes adjust to the change in light ten time slower then a typical eye.  When I turn out the lights at night everything is so pitch black for awhile I sometimes freak out and wonder if my vision will return and if my degenerated retina cells will receive the low level light rays bouncing around my home and through my window from the moon.  I sometimes have to force my eyes closed and stop looking for the light and breathe, relax and remember to have faith. Sure enough my eyes begin to respond to the low levels of light and I can see my surroundings ever so slightly again. I breathe easier and feel more grounded.

Where is my faith to help me sleep and function? I am not there yet. I am not adjusting yet.  When I go to try to workout, after about a half hour my face just starts to leak and I get embarrassed and stop.  Although i am taking alternative remedies to help my anxiety and acute low feelings about what is happening-because, ya know...this has kind of been a huge bummer-I still feel like I am unable to breathe most of the time.  Where is the wisdom to just shut my eyes and have faith?  Perhaps I need to do that now, close my eyes and remember to have faith.  Let myself adjust to the new levels of meds, adrenaline, low level mania constantly pacing and thumping around through my days and have faith that no matter what I can breathe.

In all honesty, I am just not there yet. I do not have faith that at any second I will not have to jump out of bed and figure out how to manage a life threatening crisis. I do not have faith that the meds are holding. I do not have faith that my heart won't break and I won't fall apart into a million pieces that can't be put back together. I do not have faith that my son won't fall apart into a million pieces that I can't put back together. How can I close my eyes when I am searching so so hard for the light, any light to ground myself and know where I am in the dark space around me?  This blog sounds whiny and disgusting but it is honestly how I feel.  In the dark, trying to breathe and unclench.  I was hoping writing about it would help me "get it out" of my head so I could sleep...not yet. Maybe if I clench my eyes closed like when someone is making a wish...when someone is wishing really really hard.

adjustments

Went to see the psych doc today with my son Lexi. I really like this doctor because she is so direct and straight forward.  She talks to us intelligently and does not have a God complex.  She also seems ot really care about my son as a person, not just a patient.  I like a doctor who see's how amazing he is and not just whatever they are treating.  I have found that to be a rare gift on our journey with many many doctors and medical specialists over the years.

As much as I really like this doctor, the news she delivers is always tough to swallow.  It's not unbelievable, it's just always kind of bad news.  First it was the bipolar diagnosis, then the upgrade to bipolar one and then the upgrade to bipolar mixed with some other serious mental illness all to be mixed in and not replaced by the autism, tourettes, ADD, anxiety disorder and so on.  We finally seem to have my son's latest "episode" under control.  He is on three different meds and for the last week symptoms have gone way way down. She says he is not "stable" he is "heavily medicated" and if we kept him at this level of medication it would/could cause harm.  So, we have to lighten up on some meds.  Her explanation is that we need to find the "sweet spot" with his medicine cocktail to where he is having low symptoms that he can manage or learn to manage but not so medicated that it could harm him or dull him too much.  We are taking out half of one of the meds.  We are also switching the timing of when he takes two of the meds.  All of this adjustment shall begin tomorrow.

On the medication issue, I am glad to lighten up on meds but I am terrified of setting off another spiral. When I talked frankly about this with the doc she said that she can guarantee that because of his age and the early onset of his mental illness there will definitely be other spirals and episodes.  I asked her when I can breathe out and know that my son is somewhat stable.  Her answer...are you ready...by around 30.  I guffawed out loud.  WHAT?!?!  Just a reminder...currently he is 15.  WHAT?!?!  I gathered myself and asked her when we can expect him to somewhat stabilize-just a little-relax into his meds a bit, stop hiding the knives and worrying about suicide.  According to her, we can bring the knives out again but never stop worrying, being on alert and communicating with him as openly as possible.  She says he is still in very early stages of treatment and adjusting meds can be a rough road and even when we get it all adjusted and he seems fine, it will change, it will get worse.  Due to the true nature of his diagnosis and his age of onset she says he will get worse.  Not good news.

So then I go later to the family therapist who has been more of a "you have a kid with mental illness now" coach.  He told me that I need to stop acting as if this is a short term crisis and begin shifting and adjusting into a space of chronic management.  I got the "you need to take care of you" speech which is valid and all but still blech.  I told him that I am not sure how to move out of crisis mode when it feels like the crisis is not over, it keeps unfolding and the news just keeps sucking more and more every day.  I am not even sure how deep this hole will go, how can I plan a strategy to get out of it.  His response was that I may not ever get out of this hole, it might keep getting deeper and deeper for awhile. I need to learn to take time to feel what is happening and "let down" instead of just pushing through all the time.  It is his philosophy that if I do not take time to do this I will not be able to be strong enough to manage my family well.

Well crap.  He's probably right but I don't like it.  I certainly don't want to take time to "feel". BLECH. This feeling stuff sucks!  Who wants to take time and feel what it is like to realize that your son will spend a life time battling darkness and demons.  Who wants to take time to sit with the suffering he feels and his CHRONIC condition.  Who in the HELL wants to ponder the possibilities, the fears, the alternate scenarios.  I'd much rather push through and find the bottom of the hole, find answers, analyze and assess the damage and figure out how to repair it.  I must adjust.  I find myself so much less tolerant then I used to be. I find myself wanting to curse at traffic and unable to listen to the news for the reign of stupidity that surrounds our culture.  I find myself wanting to punch other people for their self centered arrogance insensitive nature and wanting to cut off anybody who does not want to take time to see reality, to see my family and my son for how amazing he is and will always be but instead sees his diagnosis with fear based thinking.

I know that my son is amazing. I know he CAN aw and amaze doctors and that we blew past all expectations of his autism diagnosis.  I know that doctors do not know everything and that each individual is different.  I know all that and still I am struggling to find hope. Not faith...hope.  I do not want those inspirational quote crap sayings that are hung in doctors offices and posted all over feel good websites.  BLECH.  I want real tangible hope.  I want to know how deep this hole goes.  I want to know what am I grappling with and how can I help save my son.  How can I even set up temporary camp in the hole if we are still falling? How do I relax into the fall and find grace? I am not sure I am actually ready to adjust to this new reality.

The Medication Situation

Many people ask if my son is on medication. and the short answer is yes. We have had a long and twisted road with medication for Lexi.  It is a sensitive subject of sorts because he has reacted so negatively to meds in the past.

When Lexi was first diagnosed with autistic spectrum disorder we put him on a very small dose of Zoloft.  This medication made my son absolutely manic. He stopped sleeping and would stand in the middle of rooms laughing like crazy and just pee on himself and laugh some more.  Although my son was intense with autism, these symptoms had not occurred prior to this medication.  Sadly, my son has never slept well since.  Some experts suggest that those prone to bipolar can be triggered by either Zoloft or Prozac.  I am not sure if this occurred but I will tell you whole heartedly that my son has never been the same since.

A few years later we tried Risperdal. Risperdal is an anti psychotic medication. After finally getting in to see the UC Davis MIND Institute the doctor felt that medication might help Lexi with his rage issues and would support him as he grew stronger.  I went for a second opinion to the experts at Stanford Children's Hospital.  They agreed and we began a low dose of Respirdal.  Lexi's rage issues went away and he was able to go into public places without meltdowns and anxiety attacks. It was fantastic.  I remember going to an amusement pizza place in our local area where once I dragged him out screaming like he was on fire because it was so loud and chaotic and on the Respirdal he was playing, smiling and laughing with his sister.  It was SO wonderful to see him enjoy himself and be a part of the world.  Within 6 weeks on the Risperdal, Lexi had gained 24 pounds.  His liver test showed the medication was harming his liver and beginning to start the early signs of diabetes.  We weaned him off of the medication.   Lexi has never lost that weight and he still borders pre-diabetic physical conditions today, that was six years ago.  Once again, my son has never been the same.

Next we tried Abilify.  Similar to Risperdal, this medication is in the anti psychotic family but is not supposed to cause the pre-diabetic situation and weight gain.  After only two weeks on this medication my son began to facially tick.  He had already sort of had some physical ticks and obsessive behaviors due to the autism but these ticks were different.  He would snap into these facial contortions and his limbs would jerk and twitch.  Even when he slept, his body would twitch.  Apparently, this is a side effect of Abilify for some people.  We quickly weaned my son off of this medication.  It took about four years for the twitching to fade. He now ticks in ways that are less noticeable.  He pops knuckles and twitches his knee or feet or hands. Again, my son has never been the same.

Since my son's diagnosis ten plus years ago I have also sought out every alternative method of healing I could find. He has seen osteopaths, homeopaths, naturopaths, curative eurythmists, spiritual healers and more.  We have given vitamins, herbs, oils. He has listened to tones, music, been massaged and held and prayed over. I can not go into the myriad of straws that I have grasped at in order to help balance and unlock my son.  Some I saw small results, some I saw no results. I do not regret trying it all.  Perhaps some of these alternatives have kept my son out of the horrible state that doctors advised me he would end up.  He is very highly verbal, can make eye contact, has learned how to tell a joke and more that I was told a kid on the spectrum could never be expected to do. None of these alternatives were able to help with the mental illness, however.  I will correct myself by saying, none of these alternatives have shown any noticeable difference in saving my son from the torturous spiral of mental illness that he has been on for the last 15 months.

Since March, my son has tried the ADD medicine Stratera, for sleep he was put on trazadone, chonadine and attivan all at different levels and combinations. Finally, with the correct diagnosis he was put on Lamictal and Geodon to help control the mood imbalance and the violent rages.  The geodon immediately caused him to shake and have painful hiccups. One missed pill and he was attempting suicide so we decided not to take him off of it even though all warnings say to stop immediately if shaking as a side effect occurs.  The Lamictal is a powerful newer medication for bipolar that has little side effects but the one to watch for is a deadly rash.  One must go on the medication very slowly or the rash can occur and for some it may never go away.  With amazement, no rash occured and he is now finally up to a therapeutic dose.

The Lamictal and Geodon were not quite doing the trick for Lexi.  While they helped SOME, they still did not stop the suicide attempts, the parasuicidal behavior, the deep depression and spikes of energy. More concerning was the hallucinations that came before medications started and seemed to come more frequently and more intensely.  None of the previous meds were able to address the depth of challenge my son was facing.  My poor son was terrified, exhausted and feeling more and more hopeless every day.  This last time to the psychiatrist, she upgraded the bipolar diagnosis and added a new medication.

The new medication is one that has not been tested on children or teens.  It is brand spanking new and kind of hard core.  It is supposed to be low on side effects.  He started this medication a week ago and after 24 hours he began seeing relief.  It took a few days to get to some serious relief but so far, he is seeing relief from some of the intensities.  His hallucinations have almost completely gone and the ones that remain are mostly harmless. His depression seems to have lifted and his suicidal tendencies and self harm are completely gone.  We have had four days of almost normalcy.  Now I qualify that by saying all of the autism symptoms are still there but the gripping darkness and instability have melted to minimal at best.  He is sleeping more at night then he has in years. He smiles and laughs and has hope again. He ASKED to go to church today and even was able to sit through the sermon.

I am not sure what this medication does completely and how it works as far as whether or not the initial impact is long lasting but I am grateful for the improvements.  Like Lexi, I am beginning to have hope again.  He is currently on Fanapt, Lamictal and Geodon with the hopes of slowly weaning him off of the Geodon due to the negative side effects.  The prognosis is still bleak and the severity of his illness is still grave. Life is fragile. Yes, he is medicated. Yes, I have tried alternative methods.  Yes today was a good day. Yes, I hold out for hope.

Stigma!!!!

Stigma. Defined, it is  a mark of disgrace associated with a particular circumstance, quality, or person. 

Whenever I write or read that word i hear it in my head as if Dr. Evil is saying it from the Austin Powers movies. "STIG-MA" and I so want to slowly place my pinky to the side of my chin and raise an eyebrow.  It just holds that much power.  It should be given that much latitude.  STIG-MAH!

I know from parenting a child with autism for 10 years that the public at large and in generalizations are fraught with opinions and ignorance.  I myself an guilty of an ignorant mind and heaven knows that I am just full of self importance and opinions. I have opinions about so much sometimes I have to put my hand over my mouth to keep them from coming out. I guess my experience me enough to learn to put my hand over my mouth and shut up.

On the autism part, when people hear that my son has a form of autism they assume he is developmentally delayed to the point that you are supposed to speak to him like he is an infant.  Nothing ticks off a brilliant aspie more than saying, "HEEEEY BUDDY!"" to him.  Ok, I stand correct, it ticks him off even more if you try to put your hand on his head and muss it up.  Oh boy...people have almost been hurt.  Anyway...back to topic...I don't know why people assume that when MOST people with autism of any level on the spectrum do not want to be spoken to like they are 1 year olds.  I'm not even sure 1 year old babies want to be spoken to in such a way.  Really!  What is the matter with people.  I never spoke to my kids like they were kids...I spoke to them like they were PEOPLE!!!!

The other side of that ignorance about autism is the multitude of people, some strangers-some NOT, who say things like, "he looks totally fine to me".  Now I have had some folks who say this in a supportive way, like they are trying to tell me that because he doesn't look autistic they are of the mind that he will be just fine in the world.  Then there are the folks who say it in a way as if they are questioning his diagnosis.  He seemed fine to me, he was playing with the other kids and laughing and I saw no signs of autism at all.  And to that, what should I respond..."Oh my gosh...he's cured!!!!"  or "Oh my gosh, the doctors must all be wrong for years and years and you are so much wiser than anybody else".  There are comments that fall in between these two versions but these two themes continue to pop up on a regular basis.  My reply to them is always, "I know."  I just got tired of explaining it and educating those who don't really seem to want to learn.  I'm not saying that they don't care, intentions are always positive but not always thought through to the level of compassion.

As we have recently entered the world of mental illness diagnosis I am learning a whole new level of stigma...did you hear Doctor Evil in your head..."STIG-MAH!".  I know there are a lot of things called mental illness these days but lets take the clinical diagnosis serious, shell we?  As I am researching my son's new, upgraded diagnosis which is a more severe form of bipolar with some other serious mental illness thrown in like a tossed salad of crazy, I am reading blogs and watching vlogs of folks who live with these different diagnosis.  I am stunned and heart broken to report that without exception, in every single account from one of these folks with these serious forms of mental illness they all say that they are tired of people telling them to just "cheer up" or "get over it".  I was reading a chat room where someone posted a question regarding general facts and statistics and some ignoranus decided to offer their advice again saying to "move on and chin up".  I wanted to reach through the computer and punch the person who wrote that.

Just who do we think we are anyway?  How can we tell someone to get over or chin up through something that we can not even fathom??? Just because we don't see bleeding or bruising does not mean that there is not legitimate pain!  Believe me, I am watching my son struggle with legitimate pain every day right now.  He feels isolated, alone, terrified of the demons inside of him, anxiety over whether or not he will have the strength to manage himself next time the mania comes or the depression kicks in.  He does not know how to relate to his peers, how to talk to them, how to tell jokes with them.  He is not sure if someone is mocking him or being genuine and to protect himself has taken the stand that it is best not to engage instead of find out later that you were only being made fun of in front of others as people pretended to be your friend. Can you imagine not understanding those social nuances, the secret code of socially appropriate behavior?  Can you imagine feeling fine one second and the next being sure that the world would be a better place without you? Feeling excited and hopeful for a while and then thinking it is just too exhausting to keep going on, to keep trying.  Your brain chemistry betrays you and either it is creating too much happiness or has created a chemical drought of happiness that causes you confusion and pain all over.

Not everyone's mania looks the same.  Not everyone's depression looks the same. Just like autism, no two people with the same diagnosis look the same but there are similarities that are shared but not identical.  In fact, I find that there are no two mania episodes that look the same although there are key identifying factors.  Distraction is the key to moving forward. Distract from the mania and distract from the depression.  Keep carrots in front of the cart, keep physically moving.  Obstacles, stress and boredom are playgrounds for the mind to go awry.

With all good intentions, some close to us feel this is too much work for me as a mother. A single mother with no real family nearby, handling all of this alone, it is too hard and invasive to my life.  Some worry for the safety of us all with such irrational thinking, exhaustion and intense episodes.  For some, it is just too hard to understand at all and they pull away.  I heard one girl on her vlog say those who did not run for the hills when she was diagnosed came back with torches and pitch forks.  How heart breaking that this is her perspective and I wish I could say that I did not understand.

We do not need to run for the hills.  We do not need to protect ourselves with pitchforks and torches.  Mental illness is scary, frightening, exhausting and completely overwhelming.  Autism is sometimes loud, ugly, violent and isolating.  Both are equivalent to getting hit by a truck but getting hit by a truck offers the hope of healing and instead of people running away, they run to the victim to help them.

I have had family and friends say that they do not know how to help me...prayers are sent, good thoughts are surrounding us but some days it does not feel like enough.  Some family and friends have already packed and ran for the hills.  What we need now is support. I need the torches to light the way to compassion, open hearts and strength.  I need the pitchforks to scare away the demons that haunt us and the isolation.  We need to feel the support of those around us now more than ever.  People to come and hang out with my son, my daughter, myself.  Someone come and take them to a park, or a hike or to a movie.  What if someone offered to take them to their classes while I arrange the IEP's or call the Crisis Team.

Where are the casseroles we would bring the victim of the head on truck accident?  Where is someone to just hold our hands because WE are scared and confused and exhausted?  But this is not cancer, or a truck accident or something that others can see...this is mental illness and autism.  This is a perfect storm in the brain.  This has involved suicide attempts and deep darkness that can consume the light and hide it away.  This is scary and can touch us all.  We have all smelled or tasted that darkness at one point either in ourselves or someone we love.  It may not be understood because we all fear it in ourselves.  It is insidious and confusing.  Isn't it easier to stigmatize it then to face it?

The First Blog of our Journey

I'm not sure where to begin except with where we are right now.  Right now I have a 15 year old son who is an amazing young man.  He is handsome and when he smiles it makes the world a better place.  Since the day he was born it has been obvious to all who meet him that he would be an intense beautiful soul that would somehow impact our world for better.  Sadly, his road seems to be one with out ease. Oh, don't get me wrong, there are others who have worse lives and circumstances but clearly the road for my son in 15 years has not been an easy one.

The first five years of Lexi's life were choked by my bad marriage and some abuse toward he and his sister.  I will correct this statement by saying that my intention in getting married was to have a good marriage and I believe it was also the intention of his father.  We were best friends. Lexi and his sister were born out of love.  Along the way, some mental illness issues surfaced for their father which have led to all of us doing a lot of therapy.  My husband left the marriage when Lexi was 5 and we moved closer to my family shortly thereafter.

Lexi was already displaying concerning signs, symptoms since h was one year old.  He was an early developer and walked at six months old.  He laughed and played and was such a beautiful baby but it did not last. He was a beautiful toddler who was  prone to frequent intense rage tantrums, head banging and obsessive behavior. I was one of the only people who could understand him.  It got worse and more intense. I was restraining Lexi 5,6, 7 times a day for a half hour or more each time in order to keep him safe from himself. I have a multitude of stories of being in public and having strangers shame me, offer their judgement and opinions of what they had no way of understanding as my daughter stood by watching and listening to it all.  When he broke his kindergarten teacher's nose, I knew I could not avoid the inevitable any longer and I took him to be assessed.

He was diagnosed with Autistic Spectrum Disorder-pdd-nos.  He was also diagnosed with Anxiety Disorder.  Along his journey he has had the added diagnosis of PTSD, Tourette's Syndrome and ADD and our most recent addition is Bipolar Disorder I.  All of these diagnosis cross over, share symptoms, look alike from different angles but none of them define who my son is and who he can be.  I have learned that a diagnosis is important because it gives people who do not know him a place to start.  When someone is not "typical" then people go into fear or confusion and when you can throw the labels out it gives them a starting place.  Only the most shallow stay at that place.  Anyone with half a brain can move past the labels and see the person.  What an amazing person to see.

This last year my amazing person tanked.  No, really...tanked.  Things were going well up until then...had him in a special school for kids on the spectrum with average to higher i.q.'s.  He had made a few other aspie friends and we felt he was finally learning enough coping skills to transition to a regular high school with an amazing program for kids just like him.  What we did not get told is that the funding was lost for this program.  Teacher's improperly trained were brought in to sae their jobs in the state financial crisis.  The ability for him to work at his higher academic level was greatly diminished and therapies were wiped out.  Feeling his frustration with the slower academics we tried placing him on the main campus...with 3000 other kids.  Bad move.  The violence began to take over our lives.  We were almost evicted from our apartment and he became crazier and crazier.

We moved back to a small town we had lived in which coincidentally had a small charter school that fit his needs perfectly.  He did recovery credits and pulled himself through his first year of high school with a grand finale of spending the last week of his freshman year in the psychiatric hospital for his first 51/50.  For those who do not know, a 51/50 is when you are a danger to yourself or others and they need to put you away for a minimum of 72 hours to help you calm down, be assessed and get your head together.  We followed this hospital stay up with suicide attempts and parasuicidal behavior as we cycled in and out of the hospital a few more times over the summer.  When we finally got in to see a real psychiatrist, not just a band-aid doc from the psych hospital she clarified the diagnosis of bipolar.

Gotta admit, this one was thrown out years ago by a team at Stanford Children's Hospital but I couldn't handle it then.  Somehow autism seemed easier to deal with than mental illness.  Autism was a neurological disorder...bipolar was an illness-chronic and forever.  I could not handle thinking of my son suffering with an illness such as this his whole life.  In reality, he was dealing with it anyways whether I wanted to deal with it or not.  There it was...crazy town all around.  At this point, my boy was just simply suffering.  The depression that kept trying to kill him.  The mania that tore him out of his body and straight into craziness.   I can not explain how hard it is to breathe when you watch your child suffer so deeply.

 I have begun, slowly but surely, facing this new diagnosis.  In the same fervor that I took on his autism, I too must take this on to be his champion.  I must champion for him to live and smile again.  I must champion in pulling him through his intense dark pain until he can find the light again.  I must keep him alive even if he hates me for it, which he does right now.  I must smile and hold stable no matter how much I feel as though I am cracked and broken all over by his horrific ups and downs.  Every day is filled with uncertainty, minute by minute, hour by hour the world can shift from good to bad, from calm to explosive, from happy to wishing death upon himself.  I can not leave him alone for fear that he will not fail on a suicide attempt. I can not leave him alone because he is not right in his head most of the time and his judgement is so damaged he is lost in his illness.  I can not leave him alone because he is so lost in his darkness that I am afraid he can suddenly become irretrievable.

This blog is about finding ways to help Lexi, what it takes, what it is like...to document the journey and to be honest with our story...as I pray for a happy ending...some day.