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.

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."

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.

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.