Moving on

When I was four years old I lived in this beautiful little town set in the hills of western New York. There must've been some kind of magic in this place because when I had children of my own, I could not wait to move back. I'm not sure what kind of memories inspired this thinking at the young age of four. Perhaps it was our neighbors. They were true hippies and I remember showing up at their front door and begging for hot oatmeal and fresh out of the oven rolls. Their table and benches were handmade. At one time, they lived in a cabin in the woods with a blanket for the front door and a rickety handmade bridge to the outhouse. They had rabbits in their kitchen. They had chickens everywhere. But that came after we left Alfred. I say Alfred, but we lived in the neighboring town- Almond.

Perhaps it was the memory of the carved bear that has always guarded the entrance to the Kanakadea Country Store. Maybe it was Peter, the bicycle man who was a friend of my Mothers or her interesting Potter friends who gave her her first (and she says last) "brownies". It's even possible that the night if the brownies itself left an indelible impression on me. We probably played. Sang. My mother may have danced with me on her toes or cooked us a plate of cookies.

But in all seriousness, this was the place that felt like home.

We left the Alfred area and we moved around the county quite a bit. We lived in the state of Maryland for a couple years. I went to about 10 different schools and so I did not have the ability to make lasting friendships as a child. And this was something that I promised would never happen to my own children. I know that there are many families that have to move around a lot, military families, nomads and those who move for jobs and because it's a hard economy. And often, they thrive. I have good memories of all of our homes, pretty much but even so, I wanted to give my children roots. 

And I underestimated the strength of those bonds, the anchor that those roots gave them. 

This week, we found out that we have 30 days to find a new place to live. We've been living in Alfred for about a decade and for about eight of those years we lived on the side of the hill a few miles from town. Two years ago, we moved closer to town and into a house that is known by  everyone here as Briarcroft.

We have had a very happy teo years in this home but now it is time to move on. When I told my daughters that we were finding a new place to live- I called it upgrading- they burst into tears. I had no idea that they were this attached to the house that we live it. But after talking to them, I realized that it was not so much the house we live in (although they adore the house and love our neighbors) as the town we live it. Obviously, they all have friends and have been in the same school all their lives. This in itself is huge for them. They have friends and they have a church; our small town is almost like our family. My eldest daughter said that if we leave, Christmas will never be Christmas again. In her heart, it is not about the gifts or even the cookies and candy but it is about the way our town becomes a magical, wonderful fairytale place in the winter.

I was trying to look at the huge opportunity the universe could be presenting to us. The world is suddenly wide open and we have no choice but to go and explore. For all I know, we are being called West. Or South to a farm or co-op, perhaps a place I can learn Midwifery. 

 But then I go back to what has been bedrock of child raising for me. When the world is chaotic and difficult and when people come into our lives and hurt us- we create our own sanctuary. I have not had many babysitters and I have not gone out very much. I believe my home is our nest and I feel in my heart that I belong in the nest. With my children. If I have to live with a disability and wake up sick every morning, the blessing is that I am here. We have a routine every single day when they get off the bus. I am always there, every day that I can be there. It's not very often that I'm not opening the door for them. 

But even though this is a nest that we are very attached to, it is not the nest itself that matters as much as those of us who built it. Together. We can build our nest in another tree and as long as we are together… It will be a beautiful tree. It will feel just as safe.

And so, right now I am trying to inspire the children and begin the process of helping them accept this new opportunity. I am determined to keep them here where they are happy. These routes that bind them- they are GOOD. 

They will always have a love for their home town and the friends and families that as a village, helped raise them.

As hard as the work will be- and moving five children is hard, no matter what season you do it in- I want them to learn that nothing worth doing is ever easy.

I want them to learn that worry doesn't make the job go faster or easier. Worry does not change a thing- other than to make you more stressed and physically Ill. I believe in post traumatic growth. We choose it. 

Our lives are in the care of a force more powerful than I. I believe in the process. I know with certainty that every little thing will be alright.

Nobody can MAKE me feel less strong and less powerful, less happy and no SITUATION can do that, either. Once you learn to be content with what you have, in whatever state you find yourself in and living in this most precious and momentous moment: you are always ok.

I am standing on the rock of All is Well. Always. All ways. And that is what I can teach my children. 

Oxygen

I feel as tho I start every morning with my fingers crossed. I am afraid to hope but this week has been wonderful.
I canceled our visit with Seth's case manager last week because our previous visit seemed to upset him. I did not want to risk ruining a perfectly good day. I worry that any good day can be jinxed by a misspoken word or a promise not kept.
But yesterday I had to risk breaking the fragile ice we walk on and invite her in. I reminded Seth that the program was voluntary and I thought he would opt out. But instead, he talked about college and his future with excitement. He sounded hopeful- like any other teenager about to enter adulthood. He saw possibility and promise in his future. I wanted to cry with joy but played it cool, as if it was not the best day of the entire year. I wanted to kill the fattened calf and break out the vintage wine. Send shouts of thanksgiving to the heavens.
I have hope. I am not living each day in fear.
Not this week.
Not today.
And today is what matters.

Work

I am watching Discovery Health, a show called Bipolar Mysteries, about four young children and their families and their journeys over time.
A father just said that he never believed medication was an answer but begged if there was another tool, a book to buy or a video to watch - anything- to please show him. Teach him. He said he had come to realize there is no fix; just work.
They adopted a child and found out both birth parents were bipolar which increases their daughters risk of inheriting the disease to seventy percent. I was adopted, by my father, and my mother allowed me no contact with my birth father and half siblings. Three of my half sisters are bipolar and one committed suicide. My mother wanted to protect me and hoped to spare me what could be an environmental influence, she thought. But my child has had a psychotic break and there is no protection from this. And it's true, if this is his diagnosis, that there is no real absolute fix. It is too early to tell whether or not this is an acute break or a chronic condition. They are very careful when it comes to diagnosing children.
My prayer is that he gets well. We will get through this together and do whatever is necessary. As much as I want answers and solutions, I am glad to be spared a definitive diagnosis. I BELIEVE there is a future. I BELIEVE there is hope. I will never give up.
It hurts so much to see my child in pain. I feel like I wake up with my fingers crossed, hoping that today will be a good day. Hoping he will be happy today.
Each day has to be taken as it is and we live moment by moment. It seems like he has more good days now that the medication is kicking in. But he hates knowing that he is living with these drugs, that he is not well without them. As glad as he is for the respite these medications bring him, he is confused and hurting and angry that this happened to him. I don't blame him. One day he had his future mapped out and was talking to NAVY recruiters and the next day, it seems, all of those dreams were put on hold. And at sixteen, he does not understand that this is a temporary feeling and that tomorrow is worth living for. Every good day is a day worth living for.
I wish I could talk to the families on this program. Or any family that is going thru this- and I know that if I am feeling this way that others are too.
I hope that this blog reaches one of them and that we can support each other.

Shock therapy

I dreamed about Seth tonight. He was in a kind of therapy boot camp and the therapist had taken the kids to an ocean cliff. It was not a terribly high cliff but far too high for my peace of mind.
He told Seth to stand at the edge. He must have thought that it would scare Seth into thinking straight. That when faced with a chance to die, his will to live would kick in.

But Seth looked out at the ocean and he fell forward. He closed his eyes and just let himself go.

And I caught him by his shirt and hauled him with strength I did not know I had, into my arms. And then I held him against my chest like an infant and sobbed. I cried and I cried and kept repeating as I wept," thank God I have you, thank God I have you."

Apparently, having Seth disappear yesterday on his bike- spending over an hour searching, talking to police and then knowing he had gone to buy medication to hurt himself but for some time not having him safe with me- has created a fear that is haunting my sleep.
If only he knew how loved he was. If he had any idea... Has any child ever been loved more? I love that child in a visceral way... He is made of my flesh and bone and I grew him, held him inside of me... Cried when he took his first breath.
If he knew how it would kill me to lose him.
I am so tired... But I am unable to sleep without playing this out in my dreams.
I pray that my unshakable faith will carry us, as it has so many times before. I believe that love never fails. I believe in a God of everyday miracles.
I believe in angels.
I believe my child will live.

16 and will party

On Thursday I took sage to her bi weekly doctor appointment, where we discuss how her ADD medication is working. I was concerned that the latest raise in her CONCERTA dose had not been well tolerated. She seems easily irritated and frustrated. She has been hitting her sister without stopping to take a breath first. Or as I have taught the kids, "take a deep breath and swallow." Her school work has never been better, tho, and we have to try to strike the right balance between school and home. What happens at school affects her at home; what happens at home affects her at school. It is a carefully balanced right rope and in the end, our hope is that she can do just as well as her peers at school, that she can increase her ability to focus enough to read and listen in groups. But she has never been a difficult child. She is not hyper and she is a blessing to be around. I don't want her to suddenly be angry or anxious.
The doctor said that because she is so stressed with the situation here with her eldest and most loved brother, that we cannot know if her new behaviors are linked to the medication or are anxiety related to her brothers depression.

There are never any clear answers. I wish there were. I wish someone could say to me,"do THIS" and having done so, things are suddenly alright again. There is no magic wand. The pediatrician said she did not know how I managed. "I have faith." I answered. And this is true. I am never alone, even when I am most afraid. God is with me every step.
Having said that, I told Seth last night that if he committed suicide, I would wake up every single day for the rest of my life asking "how could you do this to me?" And I would fall asleep asking the same thing. Forever. All of us would. Seth said,"you cannot put that guilt on me." I am not trying to make him feel guilty but I want him to know the impact he will have on us. The sorrow will be all consuming, all day, forever. The "what ifs" and "why" questions would haunt me.

But, last night, he attended a party with friends for the first time in a long time. I kept my fingers crossed, praying he would get through it without scaring anyone and that on this night he could be like every other kid. He sent me pictures from the party and I laughed to see kids sleeping everywhere, piled up on couches and smiles on faces. He asked if he could stay the night and tho I worried and sat up most of the night, I knew I needed to let go and let the magic of friendship try to work. This morning I picked him up and he was stuffed with pancakes and laughing. He asked if we could pick up a friend and again, I whispered my gratitude. This friend was his best friend and had pulled away from him in a big way. He has been so lonely and has felt so judged. Although I am waiting for my mom to arrive and have a million things to do, I agreed to drive twenty miles to pick him up. I hoped we would keep things light but he began joking about his death in the car. His friend told him that he should stick around and achieve something. Seth said that he was thinking he would sky five and do crazy stunts, have a million adventures packed full if adrenaline since the end outcome didn't matter to him. He said that if he survived he would have a thousand stories to tell and if the parachute failed to open- well at least he would have lived.
He started asking questions about whether psychological problems could be fixed and we tAlked about successful competent and even famous people who have recovered and led amazing lives. I told him that even very sick people- like the man who shot president Reagan, are better and walking around.
And that's when he said the one thing I have prayed to hear...
"I think I will give therapy a try." He said.
I wondered if I had heard him correctly.
"You are going to give Sam a chance to help?" I asked. Sam is his brilliant therapist. I have high hopes that Sam can help.
"Yeah." He answered.

So today, he is giving life a chance. He is renting a bike and riding around town with a friend he has missed.

I feel a burst of hope. Today is a good day. And every good day is a GOOD thing.

A breath

I have this thin thread of hope today. I think perhaps the medication is kicking in. He said that he felt better and maybe does need this medicine. He is at a friends party, sleeping in the basement with other friends. And he is shopping on Amazon for camping supplies and talking about college.
He told his guidance counselor today that he has not changed his mind an yet I see signs of hope and am allowing myself to breathe- just for this night- and to allow him to be away from me to let his friends work the kind of therapy that only real friends can work.
I took my nine year old daughter to her doctor and arranged for twice weekly counseling for her. I need to be sure that she, also, is supported during this very anxious time.
And I am looking forward to a weekend visit from my mom, who can take just a little pressure off me. I decided to join the book club at church, as well. It is important that everyone dealing with mental illness in their home to have outlets. I still hope that this story will reach someone living with this daily fear of losing their child- and I hope they are strong and remembering to care for their own needs. It is not possible to walk this journey alone. Prayer and friends, normal family outings for ice cream and swimming- all these things lift the burden.
I am remembering to still love myself. And to live. And to breathe.

Thirty days

It sounds like the title of a horror film. What do you do when your child says he will die in thirty days? Yesterday my son told his 9 year old sister, my baby, that he would be gone in thirty days and she was so terrified. She waited until she could talk to me alone and she told me that this was supposed to be a secret, that if she told anyone he said he would do it sooner.
One would think that because of how much he loves her he would not want her scared, he would not do this to her. But he is not thinking in a rational way and he believes that he IS helping her by preparing her for what he says is his inevitable death.
He says fear is ignorance. He is doing what he has to do.

Living with this death sentence is the scariest and most horrifying thing imaginable. I'm not sure I could do it if I was faced with a terminal illness and I wonder how to do it now. The only thing I CAN do is keep him with me and make sure his doctors and case managers know what is going on. I have to trust them with his life. Every one is doing all they can to save him but he feels that someone as sick as he is being told he is ( by friends, by doctors) should not be walking the earth.
Growing up with an autistic brother, he managed that stress by coming to believe that someday he could make a perfect world where there were no developmental diseases or mental illnesses. He would create a better place. That thinking always scared me and I always felt it was a symptom of a bigger problem. At the time, his therapist said it was just a teens way if managing stress. However, now HE is faced with his own imperfection and he is judging himself out of existence. I wonder if he feels like he just can't back down from this principle he always stood by. If he set the bar for everyone then he has to be willing to hold himself accountable to the same standards.
I hope there is a break thru in the next couple weeks. I'm trying so hard to make the most of every day. In the end, he will probably at the very least be hospitalized again this summer and everything I had HOPED to do this summer with him will not happen.
Preparing four children for that is impossible. So much is out of my control. I have to trust god with my family and do everything I can to be the best support to them possible.
Thirty days... How does that feel to my son? What do his thoughts and dreams look like? Is he scared? He says he has a calm acceptance now that he knows what will happen. And to me, that is very frightening.
I don't want to imagine life without him. The world without him. I'm going to do all I can for him.
If he only knew how loved he was.

Pride

Today, my son served communion at church, dressed in a cardigan and red tie. I watched him as he sat with the other teens, as their liaison to the board- striving to be an example. And I know that every single day is a struggle for this kid. I know that he is exhausted with the struggle. This kid is heroic. I can't begin to tell him how amazed I am that I CREATED him, I brought him into the world- I'm responsible for this amazing human being and PROUD of not only who he is but proud that I had some part of that.
I have made choices that Hurt others. Hurt ME. I have tried every day to make each day better than the last- to grow and to be a force for change and to be as honest as I can about not just who I am but of the journey it took to be who I am. I try to instill values in my kids but there are times I wonder if I have just made a huge mess of things.
But as I watch these children echo the lessons that I most wanted to teach them I realize that somehow despite my mistakes, in always holding myself accountable for those mistakes and in being honest about those mistakes, I have taught them life lessons that will save them some of the pain- I hope. They are honest and authentic people and they won't ever wonder if I'm going to be there or if I will judge them because they know I have their back and they know they have the guidance they need.
Right now, I have very few answers for my child as he struggles to make it thru each day. And I can't say for sure that he will make it. But I know he CAN. And I know that when he does, he is going to make ripples that spread far. I don't doubt for a second this kids character and I am so proud of the man he is becoming. What a kid.

One day at a time

I had the boy all packed and ready to go back to the hospital this Tuesday. I didn't see how we could avoid it this time. I decided to try to call his new therapist. I had a thin hope that if he could connect with this guy, although he had not seen this counselor for many years, that we could avoid that green mile.
I kept reaching the answering machine and was running out of hope - and time, as school was letting out and the other kids coming home.
S told me that we all needed to prepare ourselves for his death because he just could not live this way anymore. He said he was waiting on a sign from god to tell him if this was the right way. I told him that when we try to test God and when we ask for signs we can never be sure what we see is the answer. Especially when we are hoping for a particular outcome. And I had this horrible fear just then that the wrong song would come on the radio and that would be his sign. That would be his death sentence. I turned off the radio.
We had to stop at the bank and although he was packed and seemed alright with the decision to go to the hospital, I had to make him get it in the car and ride with me. I can't leave him alone right now.
I finished my business at the bank and as I went to leave I looked behind me and there was a local pastor who I knew had the therapist personal cell phone number. That would have been the sign. For me that would have been God reaching out his hand. And I gave him the message and he agreed to call this therapist to see what we could do.
I returned to the car, I told S that this was the miracle we needed. If he was looking for a sign, this was the sign. I do not think he agreed. But just a few moments later my phone rang and I was able to take him immediately to the office. Thank God.
S is able to talk to this therapist in the way he had not talked to anybody in months. And when we left I was told it was safe to take him home.
I'm still getting calls. I received a call from the case manager and from his guidance counselor and neither thought that he was safe to be home. I half expected the school to call the police and have him taken to the emergency room. Waited anxiously for the bus and was so happy to see him step down across the street. Every single minute with him right now is borrowed time.
The only reason he is not in the hospital is because he has expressed a strong desire for camping and hiking this summer. He has plans in the intends to make those plans happen. But he told the school not to expect him to be back in the fall. Out of sheer anxiety I asked our pastor to please meet with me. She had several ideas for me. I don't feel safe that he is not taking his medication and she suggested that I make a deal with him, that he can be home and free this summer if he agrees to get back on his medication. I picked his medication up from the pharmacy and I told him what we needed to do. He agreed. Has been two days now on medication And we agreed that if there was no change in two weeks we would talk over this issue again.
I cherish every single second with my children. Right now I take nothing for granted. He is on my radar at all times, he is in the back of my head every single second of every day. There's not a moment I'm not aware of him. When you have a child who is suicidal, did not sleep well at night. You wonder if you'll be there when you go to wake him up in the party. You wonder about how you will handle it, if you will send the other children to school and pretend everything is okay… And then break down the minute the bus pulls away. You think about things you wish you didn't have to think about. You think about things that nobody should ever have to think about. Not when you have a healthy child, a child who is almost never sick… a Child free of disease.
It is unbearable to see your child in pain and to be unable to comfort him. My child does not want to live. He does not feel worthy of life. He feels that if he is sick, that he has no purpose and he should be gone. He feels no hope. And he has no concept that the pain he was feeling is temporary. There is no Band-Aid for this. I cannot wrap him up in my arms and make him love himself.
But right now nothing else matters. No plans that I might have matter. There is nothing more that I have to do than be a mother. This is the sole purpose of my existence right now and my hope is that if I can get him through the next couple years… He will be okay. I wish I could stress to every other parent I see how valuable every minute is with your child. Nothing else that you might want to do matters. All five of my children need me in ways they have never needed me and may never need me again. What matters is right now. This moment.
I will hang up any phone call, I will stop eating, I will rush home from the most important of meetings if my children need me. There is nothing else.

Inadequate

Everything was going so well. Until last night when I received a text from one of my sons friends.
He is doing it again, she said. What is he doing I questioned. He says he wants to kill himself again she said.
Christ. I actually texted Christ. Oh no. And then I ran upstairs my shirt barely covering my boxers and burst into his room. He was not in his room, he was not under his blankets, he was not in his closet in a ball. I ran through the hall stumbling over toys and anxious suddenly that I would find him blue and cold just like I see him in my dreams. He was in the bathroom. I tried to talk to him through the door… He asked me to let him finish in peace. I didn't stop talking. I'll never let you go I said, I won't leave you until you're well.
And today we traveled from doctor to doctor and met with a case manager. Everything he said scared me. I told him I loved him… I told him that he could tell me he worshiped the devil and ate babies, that he wanted to rape and pillage and cause mass chaos, I told him that my love for him was unconditional. He could tell me that he felt like he was a warning in a man's skin and I would love him. I would never judge my child. He said if I really loved him that I would let him go. Don't I want him to be happy? Is It fair to expect him to suffer? In his mind this mental illness that he has, the sickness as his friends put it, is not something he should have to bear. And if I love Him I would understand that and let him go. I will never ever let you go I told him.
He has no fear of death, this child of mine who are was raised to be spiritual and not afraid. And he wonders why suddenly I'm so afraid of death. I'm not afraid of dying actually… I am not afraid of the natural order of things. My child committing suicide is not the natural order. It is not supposed to happen. No amount of metaphysical talk can convince me that this is part of the plan.
And so we packed for the hospital. We packed because I can't sit next to him 24 hours a day. I can't protect him in the way that I need to protect him. And I will never let him go… So we packed. And then we went from one doctor to the next asking for help. And in the end his doctor said we should take it one day at a time. He will promise me every day that he is safe And he will tell me if he is not. I wonder if this is enough. He tells me there's something about him that if I knew i would judge him. He said even his doctor said it was wrong, that this is how society acts and beliefs. There are rules. I don't know what this thing is but I can't imagine ever judging my child.
Maybe I should not know what this dreadful thing is that he fears. This thing he's only told a few people and watched as those people turn their backs.
I only know one thing. I love my son.

The palette I work with

It is supremely hard to convince a teenager that there is more to life than the very narrow existence they have led this far. As they exclaim over bullying on Facebook and where they sit during lunch mod, they are not looking to hear "this too shall pass". That in itself is a foreign concept to them. Teenagers live very much in the now. They simply don't BELIEVE that in a few short years what was on their timeline or what went viral on YouTube will be forgotten or just one more thing to chuckle over.
As I try to explain to my son what a gift his life is, he cannot see beyond the pain.
This is a generation used to instant gratification and high def, extreme sports and mind blowing technologies. Mindfulness is not taught- iPad technology IS.
I am grateful to be alive with every jaw dropping sunrise, with every smile, with every lesson learned.
But I am not sixteen.
I explained to my son what an opportunity he has- just by being born. His very birth in the blossoming age of Aquarius is a gift. We are reaching new frontiers every single day. Not only was he born here on earth- honestly the best planet in the galaxy, and stunningly beautiful, ripe for exploration- but he was born in America. He has freedom and wealth and the chance to succeed. He was born healthy- a big plus. He is good looking and intelligent, qualities that when paired with being a white male can get him far ( whether that is right or not-it is the status quo).
So, earth, america, healthy, white and male ... Right there he has the basic palette to create a life and make it whatever he dreams up. Add to that palette that he is loved and not abused, admired and not rejected, conscientious and respectful, spiritual and wise beyond his years.
If he only saw past the surface and could appreciate how amazing these gifts are, he would never seek to throw them away.
There are children digging through city dumps for grains of rice, children born without limbs, abandoned children... Children whose entire life will exist of war, AIDS and starvation.
How blessed we are.
If we wake up every single day grateful, we will feel abundant.
I hope that we teach our children gratitude and show them just how much they have to offer.

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.

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.

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.

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.

Confusion

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.