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.

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.

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 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."

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.

Acceptance

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 change...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.

Expectations

My son has been in the hospital for fifteen days. After the initial shock of admitting and testing, learning about different diagnoses and beginning medication I felt that it was important to share this journey. How many other parents are there going through this? There are so many feelings when your child is admitted to a psychiatric unit. Confusion,blame,regret,hope,failure,hope..failure again...It is such a roller coaster of emotions. Every day brings something new.

We were preparing for my sixteen year old to come home when he relapsed and had to begin discussing his transfer to a longer term facility. Are there words to express how that feels? Is there anything I would not give to stop this from happening?

This is my oldest child. My son. We were just at a NAVY recruiter planning his future. Discussing colleges. Buying goggles for the swim team and planning on track season. Those are dreams that will take time to adjust but dreams that I won't give up on. Some things will have to change now, that is a certainty. But dreams die hard. There is a "letting go" involved here and it is harder for some than for others.

Many people noticed my son changing. He was not the kid he had always been. He was overly focused on the metaphysical to the point where all else was excluded. He wanted black out curtains on his windows-I thought to better focus on schoolwork-but it was really to shut out anything that could distract him from this new world he was creating for himself. He began to think of himself as a messiah. And nothing anyone said, no matter how logical or practical our words were, could make a difference. It was a complete helplessness. I began to make every effort I could to make him happy. I eased up on his chores. I stopped badgering him about homework. When he said that he thought a new living room couch and having the house fixed up would make him feel better- we did it. When he wanted a new room, space to himself- we made it happen. When he wanted new clothes and a hair cut and we thought that would boost his self esteem and make him feel more confident-we bought Galliano jeans and Express sweaters. There was nothing we were not willing to try if it would make him want to live. But these were all band aids. The real issue was happening in a place that could not be reached by us. All the love in the world was not going to fix it.

He had posted his ideology, his manifesto as it were, on Facebook. He was going downhill in a very public forum. There was no way to "hide" what was happening. Everyone was noticing, across the board. And our lives were changing as we sought ways to adapt and took any measures possible to help center our child. We are blessed to live in a community that is very close and very supportive. His guidance counselor visits him and his friends send cards and letters. Our local pastor, whose church we did not even attend, began visiting him a few days a week. His siblings drew him pictures and made picture albums to remind him of the happy times we had, and could still have MORE of. His father and I, separated for eight years, have tried to work together as a team to the best of our abilities and this has not always been easy. But it is best for our child. There is tension, blame to be passed around...and then acceptance to be found.

Today, we meet with his doctor and therapists to go over his test results. We will find out what the next step is. I have had to take every day as it comes and more than than, live in the moment as completely as I ever have. I had to be reminded that I had tickets to a musical with my other son, tickets I had had for months and was so excited about when I bought them. Something like a musical or a day out just falls under the radar when one of your children is in need. Yet, my other four children need me more than they ever have and I spread myself thin attempting to make everyone as happy as I can.

I want to HOLD my child. I want to take him back to infancy and do everything over again. I want to micro manage this situation and make all of the decisions myself. I see him progressing and want him home but am told he is not ready. When I see him staring out the window, wishing for some fresh air and normalcy I want to give it to him and yet, this is out of my hands. There is nothing I can do...but love him.

We have so many hopes and dreams for our children. And we do our very best. But, we can only accept what comes on a day by day basis. Perhaps, by sharing our journey, I can help someone else. He is already taking this chance to help kids he meets on the unit. Perhaps there is a silver lining and I just have to search for it. If anything, I am more focused and attentive to how every little thing I do affects my children. I am told that there is nothing I could have done to prevent this. I have gone over it a million times, and I am sure I will again and again...but the truth is that this illness is not something I could have stopped. We caught this as early as we could and are doing everything in our power to empower him and love him...and help him grow into wholeness. Every decision we make as parents has a consequence. I have to decide, today, what the next step will be and much of that is out of my hands.

Letting go, and loving. Lessons I thought I had learned. Loving my child for who he is, no matter what that means...a lesson worth learning.

A sub best eaten alone.

Last night, there was a concert at the elementary school. My two best "mamas" and our families sat together and we watched our daughters, bedecked in their finery and so very proud of themselves, perform. This was Isabella and Gillian's last performance with the elementary chorus. Next year, they move on to a different chorus and as fifth graders will have their own lockers. And bras. Braces possibly. Boyfriends. It was bittersweet watching them and hearing their sweet voices. I am desensitized behind my video camera and am concerned with getting the picture. But my dear friends had tears in their eyes. They were the emotional wreck I become when I watch the video later. Over and over again. Our children are growing up.

This morning, I awoke to a pot of fresh, hot coffee. Seth is fifteen and this morning he had my eight year old up and in the tub with her clothes in a little pile, ready for the day. After her bath, he blow dried her hair and styled it for her. When Sage was born, Seth cut her cord. They have always had a bond. We are having difficulty getting Sage to pay attention and focus, to the point where sometimes it takes her twenty minutes just to put on a pair of socks. She needs constant reminders. This morning, when I ran short on patience, Seth said, "Here, let me try." Considering the last few weeks Seth and I have had, it was a jaw dropping moment.

Seth has devised his own personal schedule. He tries to go to bed at six pm and then wakes up at 2am to do homework and enjoy the very early morning peace and quiet before the rest of the kids get up. Sometimes this just does not work out and yesterday he fell asleep on the couch at four pm and was still sleeping when I went to bed at ten pm. I know that Seth deals with a large amount of daily stress. Having a large family means that I don't have the luxury of much one on one time with each child. I am often spread very thin and watching my eldest, knowing that I cannot go back and change a thing and that my time with him at home is drawing to a close, I feel regret. I love having a huge family. I love the chaos and the laughter, the noise...even the mess sometimes. I know I will miss having stuffed animals on the floor and spilled milk at the table. I have learned to appreciate the crayon marks on the wall and the hand prints on the windows of my car. I do wish I had more time for each child. I am blessed to be able to stay at home with them. I may be poor but I am rich with love. And even though it may be difficult on all of us when I am sick and in bed, I would not trade these years with my children for anything. Not even a high paying job. Seth and Ian are irish twins and with this comes a kind of intense sibling rivalry that I don't see with the other children. Because Ian is autistic, it just adds to the problems that Seth deals with on a daily basis. A disabled brother means that Seth stands out in school at a time when all he really wants to do is blend with his peers. He has a brother he can't possibly understand and this is frustrating to Seth. Like me, Seth is a fixer. He just wants life to go smoothly. In a family this size, with three special needs children, it just is not possible.

When I spoke to Seth's doctor about the problems we were having, he encouraged me to allow Seth the illusion of control and power. I was told that in a single mother household, the eldest (especially if they are male) take on a large amount of responsibility. Even when I'm not intentionally putting that responsibility on his shoulders, he still feels the weight. The obligation. Seth's doctor told me to try to give Seth a chance to use that responsibility and to give him privledges that reflect his status as the oldest son. This week, instead of fighting Seth at every turn, at feeling insulted and judged when Seth tries to point out a different way of doing things-I listened. I try to do things like make sure he has the biggest helping at dinner. I try to implement ideas when I can. Usually, when the children are arguing, I will take them aside in private and speak to them. Or let them work it out themselves. Siblings are good practice for life. But Seth felt like I was NEVER taking his side. He was not HEARING me take his side and it bothered him. He felt that because Ian was autistic, I was giving him special favors and I was being unfair. I usually say to the kids that there is just no way to BE fair in this situation. Even Stevens never works. I treat them differently because they ARE different. And I have very high expectations for Seth which is why I push him harder. Being the oldest also makes him a guinea pig. Anything positive I have learned about parenting, I learned by making a mistake with Seth. It can't be easy to be him. This week I made sure that he heard me taking his side. A new pair of Leo Gutti jeans and a Hollister shirt from ebay helped, also. I don't think there is anything wrong with a little bribe here and there. I even let Seth drive.

This morning, I was so amazed that there was coffee and laundry in the drier. I was so proud of Seth for taking Sage under his wing. I decided to buy Seth lunch at Subway and take it to him. Lunch for two and I headed into the school with a big smile on my face. Usually, I have lunch with Sage and just as she is leaving I am able to catch Isabella. When Isabella is finished, I run to the high school cafeteria and sit with Riley for a bit. Ian will duck into a doorway and hide if he sees me coming so I know that my time hanging out with Riley and his friends is probably limited. Seth has not wanted me to have lunch with him in years and I thought that the sub would be persuasive. His friend's were definitely jealous of the big lunch but Seth was worried that his friends would think it wasnt cool if I sat with them. And he did not want to be the guy sitting at a table alone with his mom. He suggested that we take a drive and eat while we drove. What a great idea, but one I will have to implement next year. We were running out of time. I looked at Seth and I knew it was important to him that I understand. And I did. As much as I had hoped for a little time with Seth at lunch, the object was to show my appreciation and make him happy. So I grinned and gave him his food and then I left him to do his "thing". I'm working very hard to understand that he is growing up. He wants to help and if I give him a chance, he will. He wants respect desperately and respect is a circle. When I show him that I respect him and that I am listening, he responds. I am blessed that he feels it is ok to tell me how he feels and knows that I will understand. I hope the doors of communication stay open for a good long time. I miss the little boy who would throw himself into my arms in the middle of the classroom but I'm very proud of the man my son is becoming. It takes daily work, on both our parts. We are very different people. He does not understand that I love the simple life, that I'm happy not working if it means I can be there for my kids or that love means something different to me than it does to him. But we are learning to respect our differences and work together.

I still have a few years of childhood left with my girls. I still have ample opportunity to show all five of them that they are loved. I hope that three years is enough time to teach Seth what he needs to know in order to thrive as an adult. It is never too late to start again and I don't want to have any more regrets. Perhaps this is a week of new beginnings for a boy who is growing into a man and a mom who is never too old to learn.