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 Sharpies...to 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...is 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, first...my 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 out...at 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.
This THING.
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."

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 lies...in 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.

Burning up the Phone Lines

After dropping my son at the hospital...as 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 charges...you 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.

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.

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.