Friday, January 31, 2014

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. 

Monday, June 17, 2013


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.

Wednesday, June 12, 2013


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.

Tuesday, June 11, 2013

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.

Saturday, June 8, 2013

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.

Friday, June 7, 2013

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.

Wednesday, June 5, 2013

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.