Saturday, March 23, 2013

Sunset gratitude

A perfect sun is setting over Elmira tonight. A perfect circle of gold is slowly sinking behindthe Allegheny Mountains. I am driving into the horizon on a yellow brick road with sunlight dazzling my eyes and a perfect scattering clouds in front of me. If only I was lying on the side of the mountain with my hands propped beneath my head watching this sun slowly sink and all of its majestic glory.
This moment right here and right now is a perfect moment. How can we ever be positive that we will have many more such moments? It is good to be here right now. I feel alive and thankful.
I am driving on my spare tire. It was not meant to go great distances and I had to push that poor little tire ttoday. I cannot help but feel that it is this little worn out tires purpose today to force me to drive slowly and to look at the world around me. I am crawling along in the granny lane. Normally I am flying along like a little white missile at 80 miles an hour, in a hurry to be somewhere, racing along and not taking notice of everything going on around me.
On my last long drive I was riding with my 15 year old son. We were talking about how strange people think he is when he starts up conversations with strangers. In his mind nobody is a stranger. I want to drive up alongside another vehicle and point at the sky a motion to them they look! Look at this! Do you see what I see? And they might think I'm a little bit crazy. But we are all part of the human family. We are all brothers and sisters. We should be able to talk about a sunset with a complete Stranger and treat them like we have known them all of our lives. Because we have known them all of our life. We are all the same. I want to say thank you for creating this beautiful world with me. Didn't we do a good job? Are we amazing? Aren't we the best artists ever?
It has been a very long week. But we can all take a moment to appreciate the beauty that surrounds us. We have to know that we are in this together. We have today. We have now. And we are not alone.

Friday, March 8, 2013

The Sharpest Sharpie

Because tomorrow we are all going to visit Seth for the first time as a family, I wanted to bring him something special.  There is a long list of "contraband" items and I have to always go over that list carefully before I bring him gifts.  Food is considered contraband which actually saddens me more than it might other parents.  Seth and I have a ritual cappuccino and danish when I pick him up from school, from a friends house...or lately, when I visit him.  Little routines like that mean a great deal to me and my heart sank when he told me that because the food was so awful at the hospital, to not forget his coffee and danish-and I had to tell him that I could not.
I decided that I would take a big poster board and white t-shirt to the school today at lunch time.  I wanted to have lunch with the kids and I figured that this would be a great thing for Seth.  I want him to know that he is still surrounded by friends.  People still care.  I don't think he will be ostracized because this has happened.   Perhaps in any other school he would be, but not this one.  We have such a remarkable group of kids.  Maybe it's because we live in a small college town.  Maybe it's something in the water.  But the kids here are truly amazing.
I had no idea that when I walked in with a poster and sharpies that there would be such a rush.  I emailed the guidance counselor but missed his return email, which suggested I bring the poster to his office and let kids sign it there to avoid any big distractions at lunch time.  He definitely knew what he was talking about!
First, Isabella's class rushed me.  Forty or so fifth graders signed the front, before I could even get it ready for the high school and Seth's friends.  One child asked this little boy what had happened to Bella's brother and the boy replied that he had tried to commit suicide.  Sharp intake of breath on my part and then a firm denial...and a suggestion that he avoid listening to rumors. I hope that hearing it from me, Seth's mother, will make the rounds and that rumor will be dispelled. All I wanted was to pass out fill a piece of paper with smiley faces and hearts.  Somehow I thought it would akin to signing a yearbook. Everyone was writing "Get well soon" but, Seth would never understand that. He does not think he is sick. And sick even the right word? Technicolor GET WELLS all over a poster...and me wondering how to explain any of this when I am more confused than all five hundred of these kids.
And then, a boy of around fifteen came up to me.  He told me that he was really worried about Seth.  First, he said, Jason died.  Jason was their classmate who died in February, very sadly, of brain cancer.  "Jason left and then he died...and now Seth is gone..and I'm worried that he will die, too" he said.  I reassured him that Seth would not die.  That he would be ok.  "Does he have cancer too?" he asked me. And I knew that someone needed to reassure these guys. My God, some of them are wondering if he is going to die! But even if I could make an announcement over the school loud speaker, I wouldnt know what to say! "Please come sign a poster if you miss Seth...and please take note: He is not dying."
Far from dying...he is LIVING. And living is painful sometimes. Living has its highs and its lows...and I hope beyond hope that these kids realize how normal all of their roller coaster emotions really are.  It's all part of the trip.
I was not prepared for the questions.  I was not prepared for those kinds of feelings.  I don't know WHY I did not think about that, mind was really just centered on bringing something hopeful to Seth tomorrow.  I have been consistently worried about his friends, especially his good friends, and I sent a list of names to the guidance counselor so that they could talk to Seth's particular group of friends, reassure them and answer questions.  But there were just so many today that wanted to sign and to ask how he was.
I finally just said that he had had too much high school.  High school overload.  When asked specifically, I said that the blood tests showed his chemicals were just out of whack and we have to get all of that figured out before he can come back.
I am going to have to ask Seth, tomorrow, what he wants me to tell his classmates.  Seth made all of this very public when he threatened his own life on Facebook.  It became a big conversation, at one point sixty comments to one status update.  These days, kids operate in a spotlight.  Nothing is hidden.  They hit "send" before they think about consequences.  But, honestly...I don't even have a diagnosis yet.  He is still being tested.  All we know for sure is that his reality is different than ours.  He is incredibly smart, very deep...and very spiritual.  He has been toying with ideas that most people never even think about, much less base their decisions on.  All of this is complicated and there just is no "pat answer" that I can give a group of kids who are worried about their friend.
I myself am still in shock. Seth had his future mapped least the first few years of his future.  He had goals and he knew what he had to do to reach them.  It was a definite thing, we thought, that his first step would be to join the NAVY and have them pay for college.  It was for sure that he would take flying lessons and become a pilot.  We had plans for the summer.  And then, the universe interfered. It angers me.  Why THIS child? Why MY child? He had his shit together. He was a conservative, well dressed, well mannered and goal oriented kid! And suddenly, out of nowhere...this.
This thing that has no name, even now.  I can't predict the future anymore. I don't KNOW what to expect. Every day brings something new to my attention.
But I do believe that this is no different than having a child hospitalized with diabetes or appendicitis...any other kind of illness. My child is in the hospital and he is in pain.  He needs cards and flowers and phone calls and visits.  He needs care.  This was not his fault, or my fault...or anyone's fault. This is a chemical problem, I am told, that the medication is correcting.  And I want him to have friends when he returns-just like any other ill child.  He is still Seth.  He is still my little boy.
I was so glad to have Seth's guidance counselor take over this project today.  I left the school quite numb and shaking.  And grateful, at the same time.  Grateful that so many of those kids wanted to sign his shirt.  So many of them said they missed him and were worried about him.  Perhaps if he knows this and feels it, the way I feel it right now, it will lift his spirits.
Perhaps it will make him fight harder to get out of that place and back here, where he belongs.
In the meantime...I wish someone would give me the right answer.  I wish I knew what to say.
For now, it would sound something like this:
"Thank you so much for caring about my child. I don't KNOW what is wrong, exactly, and I'm not sure how to explain it to you.  I am having a hard time understanding it myself. But, it's good to know he has friends. He misses all of you and will need you when he comes home."

Thursday, March 7, 2013

Preoccupied...for the moment

First thing this morning (and barely awake) I drove the 75 miles to meet with a social worker.  I wanted to plead my son's case.  Because the first test they gave him was inconclusive, I still had a chance to work some "mama magic" and hopefully defer any other diagnosis.  My gut tells me that this brilliant child of mine just needs time to work this all out in his head.  He has had to deal with too much stress in the past year.  And, recently saw his entire reality crack when he realized that his Dad was not who he thought he was.  He had held his father up on a pedestal that was completely unreal. And it is easy to be king of a child's world when you only see them for a weekend here and there.  Especially your own child, your son, who WANTS to see the best and can be easily manipulated to look the other way.  When his Dad began visiting him here, at our home, with me as a buffer, he began to see the way things really were and he couldnt deal with the reality.  I know that eventually he can work all of this out but I worry that putting him in a marathon when he is barely standing on his own will break him.
I pled my case and then spent a half hour with Seth.  He wants to put in his written notice that he is requesting a hearing and I asked him to give it a few more days.  He earned full privileges today and can walk around the campus, go to the gym and eat in the dining hall.  This bit of freedom should help him, especially when he needs time to himself.  But after speaking to him, I knew that there was so much more bothering him.
He told me a story about a little girl today.  She had a melt down on the unit and began to cry, to beg the nurses to let her leave. Seth told me that she kept sobbing and saying "I promise to be good, please let me go home. I promise if you let me go home I'll never be bad again. Please, please let me go home to my mommy. I swear, I promise, I won't be bad."  I could see her, in my mind's eye and my heart broke for this child.  Another little boy was running from the nurses and they tried to catch him.  He ran by Seth shrieking down the hall and they eventually caught him. "I think they tazed him" Seth said to me.
"I am sure they probably gave him a shot and that calmed him down quickly" I responded. And I hope that is true but my mother told me that they CAN use tasers if they have to.  On children? I really hope that is not the case.
I asked Seth if he was able to help any of the other children but he said no, he cannot relate to them at all. The social worker told me he hangs back, sits on the couch or in a chair in the corner.  He is not trying to relate to the other kids. I don't think he knows how.  He said it is utter chaos and he sits and tries to handle himself as best he can.  To bear it, he said.  He is just trying to get through it.

So, tonight, I tried to beg off the "move and groove" night at the elementary school.  I felt so drained, so completely exhausted and quite simply just ill after my visit today.  But my eight year old wanted to go so badly and her friends were going to be there.  I can't neglect the other kids and make this any worse for them and as it is, my patience is not functioning the way it normally does.  I am abrupt and distant and trying to be strong for all of us. I'm really not tolerating frustration.  So, we got dressed and grabbed a slice of pizza and I immersed myself in line dancing with Sage and Bella, and their friends. Sage requires a great deal of hands on help to stay focused and I helped her with the games, which involved many steps. Ian had to come to the school an hour early for the rehearsal for the school play, in which he has a lead. Looking at the clock, I knew I had to race outside and wait for Seth to call.  Riley also wanted to speak to Seth.  We hustled to the auditorium so that I could arrange a ride home for Ian and then ran to the car where Riley tried to reach Seth on the cell phone.

When I returned home, there was a text from someone who was at Move and Groove night at the school.  Apparently, she had been talking to one of the girls and I abruptly took my daughters hand and left.  I felt terrible. I did not notice that they were interacting...and I wouldn't be rude to anyone in that way. It is never "me" to be impolite to people.  The last year has been hard and not everyone has understood some of my choices.  Not everyone understands that I am forgetful because of the Subclavian Steal Syndrome, or that the reason my ex husband stays here a night or two a month is because it's the best way for me to supervise his time with Seth.  I feel judged on all sides...and now I am appearing rude to people I would never be rude to.  Aside from this blog, which I hope will reach other parents going through this with their own child, I'm not broadcasting how difficult this entire situation has been for us.  Tonight, I was so preoccupied with thoughts of what was happening seventy five miles away on a locked unit that I may as well have been alone in that room full of a hundred children and their parents.  My heart was elsewhere.  I was seeing children crying, begging for their mothers.  I was seeing little boys race down long hallways only to be restrained when they finally hit a dead end.  And I was seeing Seth, in my mind's eye trying to stay solid, stoic, and sane in the most difficult situation he has ever faced.

I was so happy that I could relax, even for a few moments this evening, and watch my daughters prance around, with balloons stuffed in my bedtime boxers. Wiggling their big butts. Laughing. Being silly.  We watched American Idol and tried for just a bit to be a normal family. My father sent me a text telling me he loved me and reminding me that God is with me, every step of the way.  Carrying me when I cannot walk.  THIS is where my strength the faith of my parents and the laughter of my children.  It is really tough to keep up appearances and being in the moment, when you are missing one of your children, is a near impossibility.  But I have been reminded...and that is my task for the next few days.  Live in the now.  Enjoy the laughter when it exists.  Be kind to those around me and SEE them instead of looking through them.  I am glad for the lesson, even when the way it's presented to me is a challenge.

Everyday Invincible...and conquering my world one breath at a time.

Wednesday, March 6, 2013

Burning up the Phone Lines

After dropping my son at the relieved as I felt after viewing pictures of the hospital that almost made the place look like Club Med...I threw up. I was in a terrible mood all afternoon and stayed in my room most of the afternoon. Just after I pulled myself together, he called to beg me to get him out. I could hear screaming and general chaos in the background. Suddenly, it became very clear to me why they do not let parents visit the unit.  Nobody would leave their child there if they knew how bad it could get.

Today, I began the day by calling the Mental Hygiene legal experts.  The news was not good. Four doctors recommended my son's transfer.  All of them worried that he was not ready...not safe.  And yet, he is nothing like the other children on the unit.  Most of them appear to be severely autistic.  Why are there no options for kids like MINE? If you cannot afford the thousands and thousands of dollars a private hospital are left with very little. The most I could do today was advocate on his behalf.  I called St.James, the local hospital he was transferred from.  I begged them to call Elmira and plead for privileges ..anything that would make it possible for him to get away from the chaos when he felt that he needed to.  They operate on a point system and because Seth has not been there more than a day, he has not earned enough points to go to the "fitness center" or even the dining hall.  He is stuck in an environment unlike anything he has ever seen.  They assured me that he was where he needed to be and told me how I could reassure him.  I don't think ANYthing I say will reassure him, certainly nothing less than "pack your bags, I'm coming to get you".
I finally was able to speak to his social worker. I told her to picture your All American boy.  Sports teams, AP classes, composes music on the piano, a wonderful big brother. The kind of kid that other parents WISH they had.  He's a fantastic, smart kid.  Right now, he has had his reality shattered and needs to get back on his feet but he is NOT out of his head disturbed.  I worry that this WILL make him disturbed! I worry about the affect just a few days in this place will have on him.  One thing is for sure...he will NEVER say another crazy thing in his life (hopefully) after being exposed to the worst of the worst.  Hopefully he will come out grateful for his life, his sanity, his family. His freedom.  But on the other hand...what if this scares him so much that when he really does need help he won't ask for it? What if he becomes afraid that telling the truth will result in him being locked in a nightmare?
I was up all night. So many scenarios went through my head.  Finally, I bought some Advil PM just to catch a bit of sleep. I think about him constantly.  I'm distracted or on the phone all the time and the younger kids have taken to yelling and fighting out of nowhere the minute they see me on the phone.  And therefore, it's very obvious to me that they resent all of the attention being focused on their older brother and need some on themselves.  It's very, very hard for me to be in the present when my mind is with him.  This afternoon, I did some online drawing classes with the girls and we all watched Survivor as a family and ate ice cream.  I think they really appreciated that time together.  I felt guilty for not calling Seth.  I felt like eating ice cream when he is eating bland food that is delivered to him on a hospital tray was a guilty pleasure.  And I replay so many t hings that have happened and try to learn from them, so I don't make the same mistakes with the other children.  Four doctors have told me there is no blame.  They have said to me over and over again that this is an organic, biological, chemical problem.  It does not take away the regret.
I told the Social Worker that I was worried for him and that someone there needed to be his advocate and make sure he knew where he could go when he needed to relax. They have prescribed him anti anxiety medication but he has never taken it and won't ask for it.  And he worries that if he DOES ask for it, that they will just write down that he was anxious and it will be another strike against him.  He needs to be here, with his family and his friends, with everyone who loves him.  And I know that they tell me I can't keep him safe and that this is for the best...but there has to be another way.
Tomorrow I am leaving at 8am and driving to the hospital to meet with the Social Worker. She seemed surprised that I was willing to come at any time, with a moments notice.  I have to wonder what she is used to dealing with. Wouldnt any mother drop everything to come, if it meant her child could be home sooner?  Am I that different from other parents that just accept what has happened and carry on with their lives? I feel like a piece of my SOUL is missing.  There is nothing I would not do to make him well and have him with us.  I am so grateful for the good in my child.  I'm grateful he is not one of the children screaming in the background when he calls me.  I'm so utterly and completely thankful he is not the little boy in the room next door who spends his day banging his head on the wall and I pray for those parents and for that little boy.  I'm proud that my son was not one of the kids stealing the keys from their teacher at the hospital today.  He has not lunged at anyone or tried to choke them.
I will pray for those who have to cope with such things...but pain and regret and loss are all relative and as grateful as I am for what I have, I feel this immense sense of loss and helplessness.  I have a beautiful boy and he is not with us tonight.  And I pray for him as well.

Tuesday, March 5, 2013

Get me out!

I was only home for a few hours when my son called and begged me to find a way to get him out.
I actually had felt better about the entire situation until that moment. I saw a fitness center and pictures of a calm peaceful atmosphere. I saw a recreation room surroundsound gaming and a large projector where they could play Xbox.
The dining hall looked nicer than the dining hall I had in college! Everything seemed better and he seemed calm and accepting of the situation.
But on the phone just now he sound desperate. I know now what they did not want me to see. Seven-year-old children who are severely autistic and banging their heads. Children choking other children, screaming, yelling, nurses with their hands so full that they can't even realize that Seth needs them too. Nobody has spoken to him and he is not the kind of kid who will ASK for help. He wants to conquer this on his own and tho I always encouraged that strength I see now that asking for help when you need it is ALSO a strength.

I suggested he go find a nurse and let the nurse know he
needed help. He needed a quiet room. He said he was not allowed to just go lay down in his own room, everything is very strict and structured there. I suppose that there were 100 questions that I did not ask when I signed those papers. I made sure that they made him a voluntary admissions so that he would never have an involuntary admission following him and his future. These are his permanent medical records. He still has a bright future ahead of him and I want to do everything possible to make that happen. But the other chaos that exists in admissions are driving him crazy. He is so desperate. He's begging me to find a way for him to get out. I called the nurse and I spoke to her about Seth. He's quiet, smart, extremely intelligent. Needs to be in a stress-free atmosphere. Cannot handle chaos. Tomorrow I will call the social worker and see what I can do. It should not take them more than a couple hours to see that he is different from these other children. His very presence is a calming presence. He is very Respectful and considerate. Very smart. I Don't believe he belongs in this place.
How could I have believed pictures of an empty fitness room and an Xbox screen so big it would fit my entire living room walls meant that it was a good place for my child? I should have known this place was filled children so disturbed they could not live at home. He is only there so we can pinpoint a diagnosis, he is not there because he's banging his head on walls, he is not there because he is unsafe.
It is 8 o'clock at night and I am at the school rehearsing my other sons school play. And helping my eight-year-old do homework. There's so much that I still have to do every day and I don't know how to rescue him. I want to ride there on my Whitehorse pull him from the building take him safely home and talking and his own bed. But I'm helpless. Honestly, this is not a feeling the mother can except. Tomorrow I'm going to save my child.

The long drive to admissions

I am following the ambulance. The ambulance has chains under it and I can hear them clanking on the highway as we passed cars and drive over the speed limit on our way to the hospital. Everything is a crystal clear focus, church bells ringing in town, bright green lights, bright red lights to give me a little bit of time to try to see him in the window of the ambulance. They brought him out tied to a stretcher and I wanted to reach out and feel his fore head for fever. It seems so odd to see him on the stretcher that way. The ambulance is red with yellow stripes on the back and it says advanced life support. I'm trying to think of this is saving his life. It isn't easy when I want so badly to bring him home.
I have a child who is autistic and somehow I always pictured this sort of journey with him. Yet we have been so strong and we've avoided this the entire way with him.
Passing the airport I see a plane land and think of his plan to be a NAVY pilot. Passing the mall I want to buy him a new EXPRESS sweater .
So so hard.

Monday, March 4, 2013

Soccer socks and AXE

Seth called from the hospital and needed his gym clothes and shoes from the boys locker room at school. At first I panicked. It's the only thing he has asked for. He has gained eleven pounds in 20 days and knowing this new hospital has a fitness center has him sounding almost chipper. A little hope goes a long way.
I called him and he guided me through heretofore forbidden territory. The locker room smelled like sweat, socks and AXE. Luckily I found what he needed.
But even this success brings tears to my eyes. These are his track shoes and track season starts this week. Instead of running with his team, he is taking his shoes to a hospital. I'm emptying his locker, but not for a bus ride to State Finals... It is a sad, lost feeling.
I'm so happy to accomplish this one thing. Anything I can do to mother him gives me joy. I am not sure how I will be a strong support to him when he is so far but tonight, thankfully I was here at school for my other child's rehearsal and can do this for him.
I am still dreading the drive tomorrow. Even though I signed the paper for his transfer, for some reason (because he is a minor) it is still considered an involuntary admission. I hope like hell he won't be there long.

The Impossible

I really Tried to find a way to get out of signing the papers for my son's transfer this morning. I called legal help lines and mental hygiene and the county health department. I sent emails, one especially long email to his primary therapist asking for him to seek some kind of least restrictive setting. I promised a kind of true vigilance that I've never even thought about before. I envisioned myself sleeping outside of Seth's bedroom door at night to keep him safe.
And I spoke to other family members to see you how they felt about me keeping him at home. He had promised me, even sworn that he was not suicidal and even his brothers were upset with me for being scared to have him home. I believed him to a certain extent, enough to have him home. I believed I could keep him safe. It was obvious that his judgment was still impaired but suicidal he was not. I am not blind or deaf or dumb and I can see that his thoughts are disordered and his judgment is impaired. But I want to do my job and keep him safe. I don't want to trust him to strangers. I am his mother and I doubt that anyone knows him as well as I do. I just want to love him and make him well.
And there are three definite criteria involved for a child to be committed to a state institution. My son was not suicidal, is not a danger to himself or others, and there really were no true safety issues that I could think of, at least that I could not resolve quickly if I had to.
Mostly, it was hurting me to see him running around looking out windows, a hamster running through tunnels hoping for an exit. It hurt to see him confined. It hurt to see him begging for freedom and know that it was not up to me anymore.
Finally the hospital called and told me to come in for a meeting at 2:30 PM. His father would Attend the meeting through speaker phone. His doctor would attend as with his therapist and I hope my son would be there also. I had to pick up the girls from school to take them to a doctors appointment and they had to wait in the waiting room While I had the meeting.
Just before I left the house I received an important phone call from my mom. My brother is being re-deployed to Afghanistan. He is having a quick wedding before he ships out and it's very important that my son be allowed to attend this wedding.
My only thought was of missing him. I kept thinking if how i wanted him home with me again. I just want everything back to normal. I want to keep my own child safe and hold him in my arms. I don't want to trust him to the state. And I feel like I know him better than anyone else.
I would have to persuade the doctors that Seth could be safe at home. But I was told on the phone that if they truly wanted to hospitalize him they could call the hotline and report me for not doing my job as his mother. I can't allow that to ever happen, i have to protect all of my children not just my eldest.
The kids on the unit wanted a pizza party with Seth before he left. I stopped at Pizza Hut with my girls and bought two pizzas and dessert for the kids up on the unit. They were so happy to receive it and their smiles and their hugs were so good to see. I told my son i loved him and I asked him what he wanted me to do. he told me he had met with the doctors and that they had convinced him this was not something we could fight. He had resolved in his mind that this was what would happen and wanted me to sign the papers. He thought anything would be better than the boredom and loneliness he had been feeling, many times the only kid on the unit. I had stayed up all night wanting this out of my hands and after the meeting with the doctors I knew finally that it was out of my hands for good. His main concern was his education. He is falling behind in school and it was going to take a lot to catch up. Apparently at the state hospital they have full-time school and staff that can help him catch up. He will be allowed to walk and exercise and play at the bowling alley and the gym.
I have hired some people to help me redecorate his room while he is gone. He has a new computer from grandma and a new bedroom set coming and we are going to make it a nice safe retreat for him when he returns. I don't know when that will be and that scares me.
I have adjusted my mind and let go of expectations. Have gone to the confusion and the grieving although the grief is still there and I'm not sure when it will end. And i am ready to put 1 foot in front of the other and move forward . I am ready to love that child just as he is and i will never stop loving him.
Tomorrow at 8:00 AM i have to be at the hospital and I will follow the ambulance to Elmira state psychiatric hospital. It is a trip I do not want to make. I wish this was a dream. It's a nightmare tinged with love. And hope. And great trepidation. I wonder if I'll sleep tonight. I wonder if I can rest by mind. All I really wanted was to drive him to the hospital myself, to have one last ride with him before this journey begins, to stop at a fast food restaurant in buy him a big mac and soda. The normal things. The things I missed most these two weeks. I wanted to blast the music in the car and left with him just one more time before he enters the place that we really don't nothing about. I have the worst decisions of this place although I'm sure by everyone that it's really quite nice. It may be nice but its a jail filled with doctors and nurses and they're not his mother and will not hold him when he cries and they will not comfort him or give him spiritual advice or smile at his jokes like we do.
Finally he is taking a journey that I can't go with him on, his first real journey alone. I can love him behind the scenes but I cannot make him well. Love will not move this mountain although I hope in time it will tunnel through it.
I know that I am not alone and that there are many parents in the same confusing situation. My prayers and my thoughts and my heart go with them tonight and I share this with them. For them. So they know they're not alone. It's very hard to not feel alone. It's very easy to be consumed by stress. I have four other children that need me and I have to be the strong one. And I am.

Sunday, March 3, 2013


Today I brought my 14 year old son to visit his brother. They played with the physio balls and laughed. We played monopoly.

And then we were told that videotaping ourselves, even with no other patients in the room, violated privacy laws. They asked me to delete the video I had made of the boys playing..laughing and wrestling like two normal brothers. I made sure we emailed it to me first. I couldn't delete it that way... I kept thinking to myself "what if this is the last REAL moment with him?"
They say this disease is only beginning but sometimes he seems so damn normal. How can they ask me to sign those papers when he is begging me to take him home? Sometimes I think I HAVE to sign because its the only way to keep him safe. Other times I second guess myself and think he is entitled to this search for truth. He swears he is not suicidal... He tells me he is ok now.

But in the same breath he asks why it's ok to be a kamikaze pilot and considered sane but anyone else willing to die is crazy. He told me that if another teenager told him that God was saying he had to die, that he himself would be able to discern if it really was the voice of God and if he decided it was... He would help them die.
His thoughts are all over the place but the criteria for staying in the hospital is that he is a danger to himself and that question is beyond me. I don't want to ever lose that boy. I want him safe.

I guess it's possible that he may hate me for signing. And I want it out of my hands. Why does it have to be me? Can't the doctors do this without me?

I need a sign... I need to pray and I need some kind of still small voice to guide me.
I need to know the right answer.
Tomorrow I'm supposed to follow that am balance - they won't let me take him. I can already picture that drive and don't want to make it alone.
My sweet confused boy is sitting alone staring out the window after 19 days of confinement and desperate for his freedom.
I pray tonight for an assurance I don't feel right now.

Saturday, March 2, 2013


Before I became a mother, I had planned to enter the monastery. Or, nunnery, as it were, in Santa Barbara, California. It was a Vedantic Monastery and I felt called to follow a spiritual path. My dearest Swamiji, who passed on with a smile on his face ravaged by cancer, was a lovely and incredibly human being. He would hand me a hundred dollars when I came to the temple in Toronto. And he introduced me to Vrajaprana, a nun who was also an author. I was working as the assistant to a writer who was writing a book about the man who introduced Hinduism to the west, a disciple of Ramakrishna. I was filled with purpose.

And then I screwed it up. As usual.

But when I called Vrajaprana to tell her that I would not be coming, that I was, in fact, pregnant...she was full of wisdom and compassion. I was fasting and hiding myself from the world, devastated and confused. I was not only pregnant but I was pregnant with my boss's child. And he was a married man. I could not have screwed up bigger. Like so many other women who are insecure and vulnerable, I fell for a sob story straight from a cheap novel. And within a week, I was pregnant. I wanted to go out with a bang. No pun intended. It was just my last hurrah. I did it out of compassion for someone who felt unloved and lost. For whatever reason I did it, my plans were now destroyed. Vrajaprana told me that flagellation was no longer sanctioned and would not help me. Guilt can only destroy. She also told me that she had had a child and when her child was old enough to be independant, she entered the monastery. So, all hope was not lost. I had a decision to make and I needed to focus on the present.

And so, I began eating and meditating. The realization that motherhood was in itself a spiritual pursuit came from those meditations. But I still screwed up. I was now knee deep in a situation that had so much capacity to hurt and to kill the spirit that it took me many years to crawl out of it. An affair can be exciting and you find yourself caught up in it. In the end, nothing good comes from it. Except in my case, I found myself married to my ex-boss and with five children. It took almost dying to wake me up from the illusion I was living. It was almost dying that taught me what a gift life is and how short time is. When I almost died, I began to live.

I can see the path I have walked clearly and am filled with gratitude for lessons that I have learned. But sadly, every mistake that i have made has been lived not just by me, but by my children. Children are fresh slates and if I were to keep a record of every time one of my decisions caused my children pain, I would not be able to face each new day. Yet, whenever I think that in some way I have caused my kids irreparable damage, that they will be confused adults with no sense of purpose, they will parrot something I said to them or show such incredible depth and empathy and compassion for others that I can only rejoice. Somewhere, in the confusion of the last fifteen years, I taught them life lessons that will give them a foundation.

I like to call myself invincible. An everyday, average conquerer or the universe. A viking. An amazon. I never give up. I am nothing if not tenascious and sometimes that kicks me in the ass. I will never be knocked down to the point where I cannot get back up. If I have to crawl on my hands and knees, I will. Every set back is an opportunity to grow. Stepping outside my comfort zone is something I do with a sprint and a leap. I see this in my children now and am so grateful that they are not seeing my life as a defeat and are in their own way finding ways to grow and do not give up. Last year, when Isabella was told that she would spend the next year with a teacher that she feared, I told her that I would try to get her out of that class if she wished. Isabella said to me that she WANTED this challenge. Not only did she want to face her fears but she wanted the chance to be the one student who made this teachers job worth working. She would be the student that reminded her why she became a teacher. It was taking a lot on her shoulders. I worried. But I stood by her and together we learned a great deal that year. She learned that she can't be responsible for someone elses moods. Or stress. Or anger. She is very sensitive, very intuitive and she always wants to do her best. If she is doing her best and someone is STILL upset, she takes that personally. As the year progressed, I watched her stand her ground and go thru her day with a smile even if she broke down in tears later at home. Crying is ok, I told her every time. A little nervous breakdown won't hurt you. But get back up. Take a deep breath and swallow is my mantra to my girls.

When, after four years, my partner ended a relationship that I thought would last forever, I knew that I was not the only one hurting. My kids thought of L as their mother. And they were devastated. It was important to me that I hold it together. But to deny that I was also hurting would have been plastic. I made sure they knew that I felt their pain but also that I was not going to stop living. Tears were ok but quitting was not. Determined that this would be a life lesson and not a defeat, I told that that people will always come and go. But they come with a gift. And we have a gift to give them. When we hold onto something after its purpose has been fulfilled, we are going upstream. We are not supposed to chain people to us. We are only postponing the next phase that the universe has for us when we hold onto something that should really be set free. If we impacted my partner, if we sent her with our gift and we grew from the experience then that is enough. Time to move on and see what spirit has in store for us. We might not understand another person's path but it is not our place to judge it. We must let them walk it. We are on our own journeys and why would we want to stop in the middle of the path when we are meant to keep walking? I know that we all felt that pain and that we grieved but we are healing every day and by learning this lesson I pray they will avoid unnecessary heart break in their own lives. They have learned that heart break happens. And that a broken heart won't kill you.

I am not living behind the walls of a nunnery. But my home is my sanctuary. When I see my values reflected in my children, I kvell. I swell with pride. I am filled with gratitude and love. I wanted to change the world. With five children, I AM changing the world. I have watched other children and I have seen the very worst that life can throw at us. My children are still children and they are still learning. They are not always kind. They are not always compassionate. Definitely they do not always respect the people around them. But I see how gentle they can be and when I compare them to many of the kids on the playground, I am comforted in the knowledge that they are going to grow up to be adults that I am proud of. Seth is the most goal oriented, driven fifteen year old I have ever seen. He lets his little sisters sleep with him. He wakes up before the sun just to enjoy those very spiritual, quiet, still moments as the world wakes up around him. Seth is filled with a wisdom usually reserved for those twenty years his senior. He struggles just like every other teenager but he searches his mistakes for the silver lining and then he works to not repeat that mistake. Riley is the most affectionate child I know. He still wants to be snuggled and hugs the people around him. Often. Ian is a gifted writer. Because he is autistic, he can look at a situation and find a solution that most people would never see. He is the bravest kid I have ever met. Even when he walks the halls of school alone and deals with comments that would sink me to my knees, he holds his head up and he goes back. And Sage...Sage has an imagination and way of looking at the world that will change everyone around her. If someone is sick, she will lay her hands on them and close her eyes and heal them. She talks to spirits. She sees angels. She is of a new generation that is born remembering Who They Really Are and she reminds me every day that we are God "godding". Isabella is still taking under her wing those who are broken and filling them with love and acceptance. I do not need to discipline Isabella because she is always immediately sorry when she reacts like a normal girl with hormones and works to repair any hurt she has caused. She is beautiful in every way.

I don't take this job lightly. I am their teacher. I am their example. I am not healthy and need to rest often but even this is a blessing when it enables me to be here full time for my family. Being chronically ill also teaches the kids to be kind to those who are not well and to give of themselves to people in need. Of course, this is hard for them. And some days it is not easy to find the energy to be fully available to five growing kids. But I am here with my arms wide open and ears to listen. And advice that I can already tell is not all bad. I can only be who I am.


Yesterday, I was told that our insurance won't pay for a long term stay for my son. An entire team of doctors sat at a table with us attempting to explain the unexplained   He needs long term treatment. This is not something acute, they said, when I attempted in my own mind to explain that perhaps he just got so stressed out that he crashed...but would be ok, eventually. They said that this was just the blossoming of a bigger illness.  This was not a one time break.  They need more time to really define the diagnosis.  It could be a bipolar illness, with aspects of a thought disorder. OR, it could be a thought disorder like schizophrenia with manic aspects.
My mind didnt want to accept that.  We have a capacity to choose, to heal.  I have NEVER thought anything impossible.  
I went to the hospital to see him last night and I listened to him talk about suicide.  It is almost a religion to him.  He feels that it's part of his destiny.  Sometimes, he said, God gives someone cancer and they die.  It is meant to happen at that time, and we miss them but understand that this is natural.  But, he said, perhaps God gave him a mental illness AS his way to die.  He thinks it's the same thing as cancer or even a car accident. Just another way for the soul to depart.  The end game is the same.  I could argue til I'm blue in the face and talk myself in circles but since he believes this is just one more way to go and no different than any other way we could die...he cannot be convinced.
While visiting, they brought me papers and asked me to sign for the transfer.  I couldnt sign in front of him, as he sat there begging me to find a way out.  He is an active teenaged boy who has been confined for seventeen days now.  He has gained eleven pounds and spends too much time looking out windows, longing for the outside.  Since the insurance is not settled and we won't know until Monday how this is going to be paid for, I did not sign the papers.
If I am going to get the bill for this, I can't pay.  And yet, I fear for him. I want him with me more than anything in the world.  I want to bring him home and convince him that he has a long life ahead of him in which he can research all these big questions, he can talk to all kinds of quantum physicists and ask all the questions he wants. He can talk to gurus and swami's and ministers and teachers.  He is obsessed with the bigger picture. Spirituality, metaphysics. Quantum physics.  I want him to learn and to grow...but rationally.  I want him alive.  If he says that he is a 4 on a suicidal scale of 1-10...I certainly won't risk forty percent.
As I was leaving, I passed another mother sitting in the hallway surrounded by bags that contained her daughters belongings. She said, "Are you ok"? and I as I put my hands up to say "I don't know", she said "because I'm not".  I understood completely and we spoke for a few moments about our children.  I tried to offer her hope.  Her daughter has an eating disorder and is cutting. Her daughter had refused to visit with her.  I told her that my son had been at that point and it was very common.  I gave her my name, my phone number, my facebook information.  I hope she reaches out.  It would be good to talk to someone who knows exactly what this feels like.  Mother's don't like to feel helpless where their children are concerned. 
I want to micro manage. I want control. I want to MOTHER him back to health. I want to believe this is temporary. I want to believe that he is just so smart, so totally brilliant that he found himself researching philosophy and spirituality and religion and physics and just became confused and overwhelmed.
He isnt alone in his beliefs. Many of his beliefs are shared by millions. It is the direction he is taking these beliefs that cause the problem.
All I could do was hug him, give him a few new outfits that were bought by a dear family friend who cares for him, and ask him to read and exercise when he can...and not to give up hope.  He wanted me to take him with me. And if I could, I would run with him to the ends of the world and FIND the key to all of  this.

If these doctors, all of them, all their tests...all their combined expertise...tell me that this is only the beginning and that there is no end in sight, not now...perhaps not ever...then I need to center myself and prepare for the long haul.
I will accept what I must accept. I will seek to understand the things I cant change.
I will love him and love him and love him....
But I'm not sure that I can ever accept that there is no hope.  God works in ways we can't begin to understand.  I must believe in our capacity to heal.