The Land of In-between

The Land of In Between

It is my understanding that the place where catholics believe a sinner goes to explain their sins and wait for a determination between heaven and hell is called purgatory.  I find it interesting that the dictionary also defines “purgatory” as a place of mental anguish and suffering.  I can say with great certainty that the land of in between is not a comfortable place and definitely understand why mental anguish could be used to describe such a location.  When one is on their way up, there is movement and focus on forward motion.  When one is on their way down, their is focus and effort to stop the slide.  Sitting in between leaves little to productively focus.  It is like driving through a valley for hours on a straight highway, time may be passing but the mind wanders and plays tricks on the thoughts.  It is a chance to survey far off in all directions where you see nothing but you see the wind blow, the dust devils, the heat vapors.

Here I sit.  My “in between” is in all directions of my life.  It would be so simple to think it is just about me, having graduated from law school, taken and failed the bar exam once and now waiting for results from my second and hopefully final go at the exam that is hopefully going to change my life.  Wouldn’t that be enough to cause mental anguish and suffering?  I mean, let me go further with this, I have been working full time and going to law school for four years and then went down to part time in order to appropriately study for the bar exam.  It is not cheap to take the bar and most success comes from taking months off prior to the exam to hyper focus and cram your brain full of crap needed to barf back out during exam days.  I stocked up, begged, borrowed and got through the first exam giving it my all.  I fell short. Honestly, it was by less than 1% but short nonetheless.  

So then I needed to pick my crushed soul back up, dust it off and rally into the next exam by begging and borrowing more from every resource, even my own physical stamina.  You want to see how fast a 48 year old woman can gain weight?  Just make her sit in a chair for 10-12 hours a day staring at a computer and handwriting notes.  And for extra measure, tell her that her whole financial future relies on this success and watch the cortisol pack on the pounds. It is okay, Cortisol and I go way back to when my son was younger and randomly launched into violent self injurious attacks several times a day.  I have felt the warm hug of the pounds of stress and lack of sleep for almost two decades now. I would like to consider the pounds of fat compensation for the lack of functioning adrenal glands since I’m pretty sure they shriveled up and moved out years ago.

Now I wait.  It has been a two and a half month wait since I took he bar exam last.  It is shorter than the other wait from he first time.  The first wait was four months.  It is different this time.  I now know what it is like to think you gave it your all and still fall short.  I know what it is like to get excited and put together a resume in preparation to move forward and then have no use for it…yet.  I know what it is like to see that look on my kids faces when they finally register not only that I failed but that we are going to live in this weird, stressed out desperate place for another six months.  I know what it is like to be working at an internship with a job potential and watch it slip through my finger tips because I fell short.  Did I jinx it by being happy and excited and hopeful?  Was I cocky? 

Wouldn’t it be great if that was my only place of purgatory?  If my part time work was steady and stable and my kids were in a stable place and my home was stable?  Would the bar exam/legal career purgatory be enough mental anguish?  Apparently not.  My place of work is on the verge of shutting down, being sold, self destructing and it is my understanding that with only two weeks notice at any time I may not have a location to work from.  Yes, that is the worst case scenario leaving the best case scenario that someone awesome buys the business that houses my work and they love it, care a whole bunch and grandfather me in at a low sublease and all is hunky dory.  It could happen.  I have absolutely no control over this whole process.  I could bail out and go find somewhere else but have chosen to wait it out.  Reason being that my clients have stuck through my off and on bar exam absences and potential shift at any moment to less hours due to launching legal career that throwing a geographical change on them will likely bring an even deeper shedding of clients.  After 2 bar exams I have lost a significant number of clients as it is and I don’t want to invest in building up my when my true direction is to change careers altogether.  So, I take it one day at a time, one client at a time. 

Then there are my kids.  One is about to turn 18 and reach adulthood.  He is a kid with high functioning disabilities that we have held together with a variety of services and assistance over the years that will all go away on his 18th birthday.  This includes various financial support and resources for therapies.  There is the whole power of attorney vs. partial conservation debate going on trying to determine what is the best way to protect him and be able to advocate for him when needed but only when needed.  When he turns 18 and he can start working, what will happen? How will he do? Will he remain stable? Will it overwhelm him?  Will he rise to the challenge and impress the shit out of me like I know he can?  Again, it could go either way and I have no control over this process. It is his journey that I can only parent.  I equate parenting to that of a pinball machine.  I am the paddles the try to push him up and keep him from falling into the hole and when all forces come together to help him hit some points and ring some bells and flash some lights I cheer loud and proud.   I am very lucky, he has scored all time highs in his life despite the many “tilt” messages he has been dealt.  

Then my other kiddo is one who is still in struggle and shift mode.  Her health issues went in to full bloom this last year and caused her whole life to come crashing down painfully around her.  It took us so long to find her help but even the help is not returning her to full capacity and the pain and struggle wears on her and by proxy, me.  Nobody knows if she will get back to full physical strength or if her health issues will continue to flare up on her an knock her down.   She begs for me to help her but I am again with little power to help or comfort her. I love her full strength but can not make her well.  How much does a parent push or hang back and let her figure out her direction in all that has shifted?  How much of this is her personal journey that I need to simply parent and not intervene? How much do I have to watch her suffer in pain while I pray and hope she can find joy and happiness despite it all.  

Then there is prayer. I have always been a relatively spiritual person with full understanding and without doubt of God, the Higher Power.  I have studied various forms of acknowledging that power and have always believed in prayer and moving energy.  I am not sure if I believe any of it anymore. For simplicity sake I say it is the helplessness I felt watching my daughter suffer that has made me question it all but that is just a drop in the bucket.  Dare I say it was the straw that broke the camels back.  It was all of it.  It is all of it.  The crap ass life I had, better than some, worse than others.  The abuse and attacks I overcame.  The survivor label and so on I have done therapy to help me assimilate.  The bad marriage.  The abuse.  The autism. The kid with such severe mental illness breaks that the psychiatrist told me to consider the child I once knew as dead and learn to embrace the new child.  I rallied and prayed and meditated and had faith and hope and believed in better each and every day.  Then the girl got so sick and felt so much pain and nobody could help her, seemingly not even God.  Similar to the bar exam experience as an encapsulated piece of that give it your all mentality and still falling short.  So what do I believe in now?  I have no idea.  I can’t reconcile any of it.  I keep waiting for inspiration or the ability to pray again without feeling so much anger and sadness and betrayal.  

My home has been beaten, abused, torn up and punched through and is in great need of repair, freshening, deep cleaning and more but there are no resources left.  I await the gate to open to achieve and acquire more resources and it is here that we loop right back to the beginning.  I drive through this valley letting time pass as I watch the dust devils of memories, hope, emotions and anxiety swirl about.  I day dream of what it will be like if this happens or that happens and I have moments of absolute paralysis in fear of what if this happened or that happened.  Like the stuffing that fall out of the holes in my couch, I pick myself up, stuff myself back in and put a blanket over it knowing that one day I hope to do better.  Until then, I drive in the land of in between.  Purgatory 

So what do I do in purgatory?  How does one handle the land of in between? I will tell you that my grace, along with my faith, have fallen away.  I whine and complain and vomit a lot.  When I felt hopeless I could always turn to prayer but what do you do when you think prayer is futile. I mean, really, what can I do. I just keep going.  Yes, we can quote Dory.  I keep on interning and trying to learn new skills for an impending legal career.  The more I can do now and learn the more employable I will be one day which can only counter act any challenges to employment that my degenerative vision might bring.  I look for new agencies and resources to help my soon to be adult child.  I research power of attorney options.  Best possible purgatory antidote was getting a puppy which will one day be trained to be my low vision dog.  Puppy therapy is always good and my puppy is particularly amazing. I avoid people who don’t know my status of fragile sanity.  I keep taking girl to doctors. I keep taking care of the clients that remained faithful.  I contemplate the benefits and detriments to taking up drinking as a serious habit.  I cave in to junk food more than I should in an effort to numb some of the mental anguish. Sometimes I fantasize about driving away, just keep driving, like Thelma and Louise, “drive”.  Mostly, I just get up and take each day as it comes and try not to vomit each meal.  I take a lot of antacids.   

While I am not catholic and have only known very little about the catholic religion, I use their language for my in between status. I am here, confessing my sins of the soul as I wait for the determination of heaven or hell.  I drive the long valley highway hallucinating on my memories and emotions trying to pass the time.  I am not lost and I am not moving up or down and it takes all focus just to keep up with the movement of time.  I love my puppy and get drunk on puppy breath.  I hold on to my tiny mustard seed of hope and wait. 

My 2014 Resolve and New Years Resolution for 2015

Well, it is time to leave another year behind. In so many ways this has been a year I do not want to forget. I have learned a lot this year.  Top on my gratitude list for 2014 is that there was not one suicide attempt.  My prayer is that those are a thing of the past.  No mental hospitalizations and no 5150's.  The family has found new hope and support through a church community that the children chose and feel very accepted and committed to be apart. We have had ups and downs and all arounds with each kid  as the grow through adolescence.  Overall I am extremely proud of my kids as they have grown, chosen to  overcome obstacles by bravery, compassion and strength.

We now have Mickey, Lexi's service dog, with us and he is a spiritual appendage to my son that gives him strength he didn't know he had. Mickey makes all of us smile and when the intense storms blow through, Mickey intuitively hangs on and helps wherever he is able. He is a true member of our family.  Up there near the top of my gratitude list! My son smiles on a regular bases now...I didn't know his face worked that way! What a beautiful smile he has!

Both kids have been successful at public high school. This has not been without some great life lessons for each of them but the biggest lesson is to keep showing up and get the work done.  Isn't that a hard one for the grown ups as well.  Knowing their struggles, my heart bursts with pride watching them persevere.

I have been told by some that I am different now.  Taking stock on time and place I would have to agree.  I started law school in 2011 and my son was young, mental illness had not triggered, my daughter was finishing 5th grade. I had a different perspective on life and my part in it. Today, I understand more about how little I can control and how strong I really am. I also have learned that most people, well intended, have opinions that they know very little about. Most opinions turn into judgments and those judgments are isolating and stigmatizing. My bruises from this realization are healing but I no longer dance around the straight up.  Maya Angelo said that people will show you who they really are...believe them. I do.

I also have seen who I really am...believe me.  I am loving, compassionate and enduring. My loyalty is direct and steadfast but my tolerance for misinformation, ignorance, judgments and stigmatization is gone. Allowing those things to befuddle me only is a waste of time and energy of which I have little to spare. I am more direct now and to the point. Whether others understand or not I know that I have hit places of pain I could never have imagined and kept breathing. I white knuckle hope and prayer that very few could ever understand sometimes making it one minute at a time, one day at a time and hold outs for a productive and healthy future for my children. I could never ever explain that to anyone and, for the most part, have stopped trying.

Somehow the resolve in it all keeps me going. The questions have faded, the shock has faded, the search for a fix or a cure has faded and the acceptance of faith gets me out of bed in the morning, keeps me breathing and gives me strength to weather the storms, the good days and the future.

2015 holds challenges ahead. I will keep praying that my son's mental illness will not degenerate and I promise to feel kicked in the gut every time i notice or am directed to see it's worsening. I promise to celebrate every good joke, every accomplishment and kindness.  I promise to find success in every day because sometimes just surviving the day is worth celebrating. I promise to be fortified and strengthened in gratitude by the angels in our life who fortify us with their kindness, encouragement, faith and love. I promise to keep reaching for grace no matter how frequent I fall short.

Personally, graduating from law school feels surreal and mind blowing. I promise to celebrate it with shock and wonder at myself at the end of April.  I promise to cry an complain and stomp my feet as I train for the marathon of the bar exam. Self doubt and fear will be my enemy and I promise to scream loudly in their faces, even when they are in the mirror.  I promise to give everything I have inside to pass that bar exam in July. I know that I was called here, pulled here and that same source, calling, pull will drag me through victorious eventually.  I promise to be grateful for every prayer, positive thought, offer of forgiveness and patience and blessing that comes my way. I also promise to ignore anybody else's doubt, negative statements, fear and foe to my success.

Standing on the lessons of 2014 I move forward, stronger, ready to take on what may come, what storms may blow, what challenges lay ahead. I will be less social in my bar preparation, I will be more stressed, I will be a little uglier and my house will be a fright. My kids will be neglected and I will be less groomed then my mother would hope and the most I can say is I will try not to smell or offend but that might be the most of it.  Those who hang on to our friendship through my neglect and intensity of 2015 are saints and those who let go are practical.  I am grateful for it all and look forward to a year from now when I can put it all behind me and stand on the lessons of 2015 with grace and honor.  Hope to see you there.

Small Victories

It may seem stupid to some but today I am just in shock. It is hard to explain why I am in shock but it is because I passed.  I didn't know that I could pass.  I hoped I would and I worked hard but I didn't know I could.

You see, so much has happened. I have spent so much time in the chaos of my son's disabilities as his mental illness triggered over a year ago and the suicide attempts began and his craziness blew up like a bug bomb in the kitchen pantry. I have spent so much time throwing out what has been damaged and sorting through the wreckage as I try to keep moving forward, keep him alive, functioning and happy. I have been trying to keep my daughter as damage free as possible while also helping her stay in our new reality. All the while I have been continuing my studies part time in law school.

Most definitely my law school experienced changed as all of this exploded into every aspect of my life. My support network practically disappeared but other types of support came out of the shadows. From clients who deal with similar loved ones feeling free to tell their version of crazy and understand mine, a fairy dog mother who occasionally drops food, clothing or pet supplies at our door and keeps us going with her angelic kindness, a Mom who has risen up to be one of my only true sounding walls in the Universe and a new church community.  As isolating as crazy has been it has also been incredibly revealing. Many fell away all of a sudden, many opinions and judgments were launched at us feeling like hand grenades some days or even land mines we need to tip toe around.  The landscape in crazy town is very different.  There is no way to know what each day will bring and for that matter, the world here can change on a dime and all we can do is be prepared to stay calm, know where our shelters are in case the storm gets too out of control.

And yet, one of my sanity keepers has been law school. I think if I did not have law school during this sleep deprived crazy town shake up I would probably have been swallowed in self pity, overwhelmed, grief.  I had something demanding my attention, pulling me out of my head, my grief, my shock and forcing me to take a breath and change my focus.  Sometimes I physically had to hold my head in order to focus because I felt like my thoughts were on the verge of implosion...maybe they were.  I stopped having faith that I was a good student but I was a student who had tenacity and persevered.  Now, as I round the curve in my last year of law school it is time to look at the bar exam. One of the steps to taking the bar exam is the national legal ethics exam called the MPRE.


The timing ont he MPRE couldn't have been more crappy. As the service dog organization I had contracted with and the service dog my son had pinned his hopes and life too crumbled and the chaos of that mess became hours daily of emails, phone calls and worry the MPRE loomed in front of me and immediately following the date of that exam were my final exams for the trimester I was currently attending.  I insisted upon this date though because if, by chance, I did not pass this exam I would have yet one more try at it before I was too deep in the muck of bar exam prep and I wanted that cushion.  I launched into my studies for this exam through all the chaos, the Crazytown storms and so on.  The form of questions for this exam are my mental nemesis and my score was wretched.  One day I would have a passing score on the practice exams and the next day I would bomb it.  I read, practiced, studied, listened to lectures, podcasts, anything and everything to help me.

I took the exam with accommodations for my visual impairment which threw me for a bit. I listened to a cd of the questions and the answer choices and then circled my answer.  It was truly the first time I learned to close my eyes and just listen. I have always tried to read and listen but with the degeneration of my vision the two together were creating almost a static in my brain.  The questions were hard, confusing and so many of them I just laughed at and circled an answer in a "whatever!!!!" type of thought process thinking as I walked out of the exam...I have no flippin' idea how I did on that.  There were so few question I actually thought I understood and was clear on the answer choice.  I was pretty sure that my brain was now completely destroyed and that Crazytown had rotted my potential. I thought I had no chance in hell at passing the bar and finishing law school was really just an exercise in stubbornness.  I had resigned to the thought of if I passed it would be by the grace of God and if I fail I will continue to take it and the bar until I pass just out of spite-just so cCazytown will not win.  I walked out and let it go.

This morning I got my score on the MPRE and I not only passed, I ACED it.

Ok...I got my kids out the door to school and all of a sudden started crying.  The last year and a half flashed before my eyes, the pain, the fear, the ER, the psychiatrist appointments and the constant bad news, the torture in my boy and the fear in my girl and my feeling of utter helplessness and confusion.  I couldn't breathe for a few minutes as all of it swarmed my brain and I stopped on one point of truth...I passed.  Through all of that I persevered and did well?  I may still have redeeming qualities in me yet.  I might be more then all of this pain. I might be more then parenting successes and failures, crazy kids, botched service dog organizations and I might actually be ok.  I ACED it.  By the grace of God I ACED it.

This is exactly what I needed as I move towards the bar exam and towards graduating and wondering what in the world am I doing, visually impaired, mayor of Crazytown and not even able to find time to do my hair or wear make up.  I might be ok.  To quote a song I grew up believing and admired, "she might just make it after all."  Unlike Mary Richards I do not want a husband...I want a life.  I want happiness and to help people and to affect change for the better in my world.  Thank you God for giving me this nudge...this gift.  I ACED it.  By the grace of God, I ACED it.  By the grace of God I go forward. I celebrate my small victory.

The Manifest of WOW! In Gratitude.

When you kid goes off the deep end a bit and has hard times it is interesting the give and take that happens in your circle of support. When you have not really slept in almost a year and you have learned the ins and outs of the mental health system so well that you can quote law and patience rights pamphlets and you know every local ER, all the nurses names and which ones are on which shifts, something inside you gets stripped down in a way to a no nonsense, I don't have time or energy to manage b.s. attitude.  What happens is you really see who gives a damn and who does not and you kind of learn to let those who don't really give a damn swim in their own pool, with love and acceptance but when you see those who really do care and step up to show you how much they care…it's like it changes the meaning of life all together.

What a journey!  I don't even know how to explain how much my perspective has changed except to put it in the perspective of this fundraiser we threw last night.  From the deep family of mine with some family members who won't acknowledge what we are doing to some who are working almost as hard as me, even long distance to try to support our cause and everywhere in between.  Family that drives several hours just to make sure you have someone FROM YOUR family there to support you and those who simply text to cheer you on…but it all means so much from my perspective.

Then there are friends…wow…I mean you really don't know your friends until you are sitting in an ER and someone offers to bring you a smoothie or a cup of coffee knowing what you are going through and how long you will be in there for…or friends who just call and leave messages saying that they care, they don't need to know the details…they just care.  I mean WOW!  Again…means the WORLD. Then you barely meet some folks for a few months and they get it and come out to support you…help you with whatever your goals might be.

The Lion's Club of our local town agreed to partner with me to throw an event…folks I don't even know care so much about my kid that they wanted to help him, Friends and Lions cooked soup and salads and found ways to deliver them, lend crock pots and salad bowls, sell tickets, advertise, hang flyers, repost and share info on social media and then come and support the actual event.  Some insisted upon helping set up, some unexpectedly stayed and helped clean up.

I walked around during our Soup N Salad Fundraising dinner and became absolutely in aw of who showed up.  At one point the room was filled and it was hard to find a place to sit.  Everyone was positive and happy and there with care and generosity.  Nobody was afraid of my son or judging my daughter or I because of his differences, they were there BECAUSE of his differences.  When Lexi felt overwhelmed he had cart blanch permission to just leave, go outside and get fresh air, calm down.  At one point I saw him sort of shaking in a corner, smiling but totally frozen with overwhelm and I helped guide him out the door for air.  How hard it must be to feel so loved and happy but still be totally overwhelmed.  Nobody in that room thought he was weird, judged him, me or thought anything negative…he was totally accepted…we were totally accepted…better yet SUPPORTED.

When it came time to draw the raffle prizes and announce the auction winners Lexi and I stood in front of the whole crowd.  As I started to thank everyone for coming I became totally overwhelmed with gratitude…choked up for a minute like a dork…standing there in complete aw.  It was all physically manifested in front of me. All of it, the long distance, the care of everyone who had gotten us that far along with those who were right there in front of me.  It was so powerful.  It was kind of a moment when I was glad that I have a visual impairment and could not see all the faces clearly because it just would have been too much to take it in at that level.  My breath left me for a moment and I just could not speak.  I was not going to let a tear fall because I knew if I let any of that emotion leak out it would get ugly so I took a breath and had to almost side step my own overwhelm and get down to business of raffle and announcements.  I then went in to this almost completely surreal dreamlike space…it all just swept over me and kept swirling around me.

As the night wrapped up and we came home with sore feet and I had forgotten to eat anything but was so filled with aw and amazement my stomach couldn't take any food, I washed all the soup pots, the crock pots and salad bowls and then just sat there.  Lexi paced for about two hours in our house just wired with the energy of the evening.  There were not a lot of words…it just all seemed so amazing.  We literally spent our evening surrounded in love, support and generosity of all those who are working and care so much about keeping my son alive and helping him and my family.  Wow! It has honestly been  such a lifetime of judgement, criticism, battles and struggles that when you have an event to condense down into one place all of the love, support and CARE…it is incredible.  No words can ever truly describe it.  Thank you is not enough.  Wow…in gratitude.

My Two Cents and my Own Casserole

Last night 60 minutes ran a story of tragedy that daringly exposes some of the broken pieces our mental health system has become and I have the link here: http://www.cbsnews.com/news/mentally-ill-youth-in-crisis/ .  This man deserves your time to watch his story and his son deserves our conversations about it.  Further down the page is a 60 Minutes Overtime segment where the interviewer and producers are interviewed regarding the deeper issues that they saw.  It is that interview that really spoke to me.  It is about the stigma of mental illness.

I have written in my blogs about the stigma of mental illness as we have been on this journey and I have written about one of my ER visits with no beds available so my son sat in the hallway on a gurney for 26 hours. I have written about the casserole phenomenon where churches and friends bring casseroles for the sick, broken body parts, cancer, heart disease, etc but nobody comes for mental illness or autism.  While my son has been in and out of the mental hospitals in our local area and I have sat for hours, even days in the ER waiting for him to get a psych bed, only one family takes my daughter in and nobody else calls, brings food, offers to give her rides or even a hug. My own church at the time basically ignored my cries for help as my questions to God swirled in my sleepless insanity and my physical health held on like a thread.

I have friends who care for a sick or elderly loved one and think it is comparable but unless that sick or elderly loved one might kill you in your sleep or themselves, you have no idea.  That statement to me is as stupid as a woman saying she understands what it is like to be a single parent when her husband travelled for a week away from the home...really???  These statements are made with the best of intentions and slightest effort to reach out and understand. I give them credit for what they are worth.

One of the points I want to follow up on is a furtherance to the interviews here.  At one point the producers said that they have young children who freak out and "tantrum" but this goes beyond that.  It is truly hard for people to understand how this goes beyond a "tantrum".  A regular tantrum can be dealt with rationally, the kid will come around when rationality hits them.  When you need to take something away or behavior modification techniques are successful then you have a kid that can be dealt with.  The mentally ill are not rational.  Seriously, this is huge.  Sometimes you can crack in to the crazy and get them to calm down or use a different part of their brain which can reduce the neurological storm but there are many times that this can not be reached.  I tell my daughter, it is like talking to a meth addict when they are on meth.  Don't try to rationalize, parent, manipulate, behaviorally modify or reason with the mentally ill having a "flare up" or unbalanced moment.  Most of the time it is finding a coping strategy to wait it out with the hope of some sort of intervening medication to kick in, if you can get them to take it.

The interview speaks of the holes in the wall, the physical damage done by the mentally ill.  Yep, that's all real.  I know folks who have had "rough" teens that have similar damage.  My family and I were asked to leave our last place we rented due to my son's behavior and the damage he caused. His irrational and "quirky" behaviors, the holes through walls and doors, windows broken, etc are unattractive to most and sure makes a gal hard pressed to take pride in her home and family. We live in shame just based on our physical environment sometimes. I certainly don't invite folks over and always feel embarrassed if someone "drops by" but I have to let it go and use my great excuse of being a part time law student to make me feel better.  The truth is, if I were not in law school I'd probably be driven crazy by the condition of my home...I'm a clean and organized person who used to love to have folks over and took great pride in my home...I had to let that go a while ago. I am humble in my coping strategy for sanity.

My son's latest break through of his meds as his bipolar worsens left me with a psych doc appointment like a punch in the gut...he's basically doing no academics anymore, he burrows in his room and getting him out to interact with the world requires greater force then a crow bar. The psych doc once again told me to lay off, "he is not normal, he will never be normal, he will not have a normal life and if he is happy then leave him alone.: For 15 years of autism training I was taught to help him fit in to the world, into normal. Now I have to let him rot, stew in his stink in order to alleviate stress. A happy brain degenerates slower then a stressed brain and slowing down the degeneration of mental illness and the psychotic breaks that follow does less damage then him not learning geometry or having "appropriate" social interactions.

Seems so weird and hard to calibrate to and understand. The psych doc held her arms up and spread her hands as wide as they could go and told me, "his autism and mental illness is HUGE to handle".  I was not caffeinated enough at the moment to keep both hands in scope...I'm not sure the hand gesture demonstration was completely necessary...but maybe...I'm kind of thick. Maybe she caught a mental illness autistic fish "THIS BIG"!  I'm not sure what my role is here...keeping him happy? He barely participates in chores, life, anything...do I allow that? If I am normal, how do I speak the language of "not normal".  Isn't that like asking a parent to suddenly learn french because there child can no longer speak english?

I know that an autism service dog will help drag him back in to the world but the wait is long and the journey a rough one to raise money. Try raising 12,500 while working, doing law school, managing crazy town with autism and all the psych, therapy, doc and school appointments that go along with it (not to mention the large amount of trees sacrificed to document this journey with all of these services and forces of "care").  My son needs 24 hour supervision and is only in school 2 days a week because he can not handle any more. Then add in the sib of it all and her challenges and break downs...and she has plenty, believe me. God has humbled me to my knees so many times they are bruised but I don't stop praying. We have lost friends and family members along the way but those that step up are valued even more.  I'm not sure where to look for hope so I just hold my hands open wide.

I make my own casseroles and have stopped attending my old church. Nobody really can understand unless they have lived it.  Nobody could possibly understand what it is to watch a child that has grown up the same age as your child thriving and excelling and smiling with pride for that child and a crushed heart for your own wondering why oh why God would torture your child/family and bless another. I white knuckle faith and speak out as often as I am able to help break down the stigma and the fear and to help educate anyone who gives a damn. I stay on vigilant suicide watch and ready to kill the buzz of mania at any given moment.  I manage sensory overload and "stemming" teen and try to find every opportunity to educate his rational moments with social appropriate behavior and care. I hug the sibling and try with all my heart to give her confidence in my strength and int he world as she walks on shaky ground each day. I am not victim to my son's "temper tantrums" but an advocate for my son's autism and mental illness. I am advocate for my families right to be a apart of the world and redefine "normal".  This is my two cents added on to the 60 Minutes story from last night.

2013 The Lesson of the Mustard Seed

Well, like everyone else, I find the last day of the year a perfect time to reflect and release.  What a year we have had as a family.So much has happened and we have hit new lows and found new highs.  I always thought that 13 was my good luck number because it is the day my son was born but this last years strains me to find good luck in it.

Lexi winning the silver medal in Special Olympics Golf

Last year at this time I was still unpacking boxes from our recent move back to our favorite town.  How grateful we were to find an academic program that suited my son and returned us to small town mountain life.  Little did we know at the time that we were headed into one of our biggest descents as a family.  As Winter progressed, so did my son's mental illness giving rise to many calls for help as Spring approached to all of his service providers.  Things were getting way beyond my ability to manage . By Mother's Day my son went in for his first psychiatric hospitalization only to have five more from then to Thanksgiving. The mental health system moves VERY slow and it took so long to see the psychiatrist and begin true assessments for a diagnosis.  In the meantime, symptoms continued to worsen and new ones popped in to play.  I would say that the very hardest part of the whole summer was the lack of understanding and shock.

As the diagnosis became clarified and medication was tweaked and tried and tweaked some more the shock wore off and the reality and grief process kicked in.  At one point my daughter burst in to tears alone with me and said she was afraid to leave the house ever day because she was never sure what she would come home to and if her brother would still be alive.  Every morning when I went to wake up my son my stomach would tighten as I would pray that the bipolar did not win and allow him a successful suicide attempt while I slept. I can write this out but nobody could ever really know the sick feeling in the gut that is constantly at play with an unstable child who is determined to kill himself unless you have lived it first hand. His thoughts were twisted and dark and the damage done by the psychotic breaks is significant and somewhat permanent.  In a way, not only will my son never be the same but neither will my daughter or I.

Lexi's scars-he wouldn't allow stitches-some of these bled for five days

As we have had a month and a half of stability (mostly) my son said it feels like so long ago that he was in so much pain and he is so glad to leave it behind in 2013.  My family has started to step, cautiously out of survival mode and in to a more healing place, looking to heal, rebuild, strengthen again.  I have enough information to know that stability is VERY fragile and with a bipolar autistic kid everything can change in a minute or less but I have also been taught to change my expectations and responses.

I leave behind in 2013 my hopes and expectations of my son as I used to know him and I treasure him as he is now, alive!, finding joy in music, painting, golf and his own personal brand of humor. My daughter feels safe enough to be irritated by him again and we are working on getting her ADD back under control.  I have begun to sleep a minimum of 5-6 hours a night and although I still have a tight stomach every  morning I wake up until I hear him answer my calls, I am digesting food better and getting sick a lot less.  We are trying to focus on our health and physical well being more as a family, engaging in different sports and activities, initially to counter the side effects of Lexi's medication, but also to help with brain clarity, mental balance, stress reduction and my visual impairment.

I have had many friends and family express concern for my daughter and I which is not easy to answer.  Yes, this has been hard on us all.  I am a single full time parent and a working Mom who is a part time law student and I have a degenerative visual impairment called Stargardt's which is made worse by stress.  It is truly one dimensional to consider that signing over my parental rights to the state and putting my son in a home would be better for my daughter and I.  I do not judge those who have had the strength to do this but I am not in that place and I hope to GOD I never will be.  I have researched my options and understand as many perspectives as I can possibly see from where I stand.  That is my son, my child, my daughter's brother and I believe he is mine in all of his disorders and mental illness and unique challenges for a reason.

I was reminded today that God does not ask us to have a mountain of faith but merely hold on to a mustard seed of faith...that small...and it will help get us through.  I have white knuckled my mustard seed and for that I am grateful that today is a good day.  I make no declarations of "I will never" or "I will always" because I have been humbled hard and think declarations are dangerous.  Taking care of my daughter and I, for now, is keeping my family together...our threesome.  We may lack grace at times but we NEVER lack love.

My family...traveling our journey!

I am not sure what 2014 will bring us and I have learned that making plans is a set up for disappointment so I will merely have loose hopes and goals and many prayers.  I told my son that if there is one thing I know that we can leave behind in 2013 is the shock.  We can be grateful for the medications and research being done on autism and mental illness and we can now walk with more understanding of what is happening and continue to look for different approaches on how to manage it all.  All three of us need to manage our family, my son in his mental illness, my daughter in her focus and anxieties and I in my grace, stability and strength.  I am grateful that through the vast amounts of sleepless nights, excruciatingly stressful months and the grief and pain that God has kept me strong and relatively healthy.  My eyes have not degenerated too much, my attitude can rebound and there has been no physical collapse. (knock wood)  !!!!

Is 2013 a bad luck year? I could see it from that perspective or I could see it as a year I was humbled and stripped down to find the truth in life, the mustard seed to hold on to, the grace in taking life one breath at a time.  Thank you 2013 for those lessons and I am so grateful to move pst them into more ease and joy.  May 2014 bring more smiles then tears and more digestion then sickness, more stability then shock and more hope then fear.  I begin towards the end of my law school career, beginning my fourth and final year in May and the acceleration toward the Bar Exam in 2015. I have the privilege of being on Law Review and exploring the perspective of a "legal scholar". I am blessed to watch my children grow and meet the challenges of adolescence one with ADD and the other now understood to have Autistic Spectrum Disorder AND Bipolar. I look forward to reaching our fundraising goals and receiving our autism service dog in the early summer months of this coming year and all the benefits related to that blessing. I am grateful to be honest and open in sharing my journey so that perhaps the shock and grief I have felt along the way could comfort or enlighten another to branch into acceptance.  Thank you 2013 and welcome 2014...let's see what you got!

An autism service dog trained by Pawsitive Service Dog Solutions

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.