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. 

Shock therapy

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

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

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

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

16 and will party

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

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

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

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

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

A breath

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

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.

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.

Kvelling

Before I became a mother, I had planned to enter the monastery. Or, nunnery, as it were, in Santa Barbara, California. It was a Vedantic Monastery and I felt called to follow a spiritual path. My dearest Swamiji, who passed on with a smile on his face ravaged by cancer, was a lovely and incredibly human being. He would hand me a hundred dollars when I came to the temple in Toronto. And he introduced me to Vrajaprana, a nun who was also an author. I was working as the assistant to a writer who was writing a book about the man who introduced Hinduism to the west, a disciple of Ramakrishna. I was filled with purpose.

And then I screwed it up. As usual.

But when I called Vrajaprana to tell her that I would not be coming, that I was, in fact, pregnant...she was full of wisdom and compassion. I was fasting and hiding myself from the world, devastated and confused. I was not only pregnant but I was pregnant with my boss's child. And he was a married man. I could not have screwed up bigger. Like so many other women who are insecure and vulnerable, I fell for a sob story straight from a cheap novel. And within a week, I was pregnant. I wanted to go out with a bang. No pun intended. It was just my last hurrah. I did it out of compassion for someone who felt unloved and lost. For whatever reason I did it, my plans were now destroyed. Vrajaprana told me that flagellation was no longer sanctioned and would not help me. Guilt can only destroy. She also told me that she had had a child and when her child was old enough to be independant, she entered the monastery. So, all hope was not lost. I had a decision to make and I needed to focus on the present.

And so, I began eating and meditating. The realization that motherhood was in itself a spiritual pursuit came from those meditations. But I still screwed up. I was now knee deep in a situation that had so much capacity to hurt and to kill the spirit that it took me many years to crawl out of it. An affair can be exciting and you find yourself caught up in it. In the end, nothing good comes from it. Except in my case, I found myself married to my ex-boss and with five children. It took almost dying to wake me up from the illusion I was living. It was almost dying that taught me what a gift life is and how short time is. When I almost died, I began to live.

I can see the path I have walked clearly and am filled with gratitude for lessons that I have learned. But sadly, every mistake that i have made has been lived not just by me, but by my children. Children are fresh slates and if I were to keep a record of every time one of my decisions caused my children pain, I would not be able to face each new day. Yet, whenever I think that in some way I have caused my kids irreparable damage, that they will be confused adults with no sense of purpose, they will parrot something I said to them or show such incredible depth and empathy and compassion for others that I can only rejoice. Somewhere, in the confusion of the last fifteen years, I taught them life lessons that will give them a foundation.

I like to call myself invincible. An everyday, average conquerer or the universe. A viking. An amazon. I never give up. I am nothing if not tenascious and sometimes that kicks me in the ass. I will never be knocked down to the point where I cannot get back up. If I have to crawl on my hands and knees, I will. Every set back is an opportunity to grow. Stepping outside my comfort zone is something I do with a sprint and a leap. I see this in my children now and am so grateful that they are not seeing my life as a defeat and are in their own way finding ways to grow and do not give up. Last year, when Isabella was told that she would spend the next year with a teacher that she feared, I told her that I would try to get her out of that class if she wished. Isabella said to me that she WANTED this challenge. Not only did she want to face her fears but she wanted the chance to be the one student who made this teachers job worth working. She would be the student that reminded her why she became a teacher. It was taking a lot on her shoulders. I worried. But I stood by her and together we learned a great deal that year. She learned that she can't be responsible for someone elses moods. Or stress. Or anger. She is very sensitive, very intuitive and she always wants to do her best. If she is doing her best and someone is STILL upset, she takes that personally. As the year progressed, I watched her stand her ground and go thru her day with a smile even if she broke down in tears later at home. Crying is ok, I told her every time. A little nervous breakdown won't hurt you. But get back up. Take a deep breath and swallow is my mantra to my girls.

When, after four years, my partner ended a relationship that I thought would last forever, I knew that I was not the only one hurting. My kids thought of L as their mother. And they were devastated. It was important to me that I hold it together. But to deny that I was also hurting would have been plastic. I made sure they knew that I felt their pain but also that I was not going to stop living. Tears were ok but quitting was not. Determined that this would be a life lesson and not a defeat, I told that that people will always come and go. But they come with a gift. And we have a gift to give them. When we hold onto something after its purpose has been fulfilled, we are going upstream. We are not supposed to chain people to us. We are only postponing the next phase that the universe has for us when we hold onto something that should really be set free. If we impacted my partner, if we sent her with our gift and we grew from the experience then that is enough. Time to move on and see what spirit has in store for us. We might not understand another person's path but it is not our place to judge it. We must let them walk it. We are on our own journeys and why would we want to stop in the middle of the path when we are meant to keep walking? I know that we all felt that pain and that we grieved but we are healing every day and by learning this lesson I pray they will avoid unnecessary heart break in their own lives. They have learned that heart break happens. And that a broken heart won't kill you.

I am not living behind the walls of a nunnery. But my home is my sanctuary. When I see my values reflected in my children, I kvell. I swell with pride. I am filled with gratitude and love. I wanted to change the world. With five children, I AM changing the world. I have watched other children and I have seen the very worst that life can throw at us. My children are still children and they are still learning. They are not always kind. They are not always compassionate. Definitely they do not always respect the people around them. But I see how gentle they can be and when I compare them to many of the kids on the playground, I am comforted in the knowledge that they are going to grow up to be adults that I am proud of. Seth is the most goal oriented, driven fifteen year old I have ever seen. He lets his little sisters sleep with him. He wakes up before the sun just to enjoy those very spiritual, quiet, still moments as the world wakes up around him. Seth is filled with a wisdom usually reserved for those twenty years his senior. He struggles just like every other teenager but he searches his mistakes for the silver lining and then he works to not repeat that mistake. Riley is the most affectionate child I know. He still wants to be snuggled and hugs the people around him. Often. Ian is a gifted writer. Because he is autistic, he can look at a situation and find a solution that most people would never see. He is the bravest kid I have ever met. Even when he walks the halls of school alone and deals with comments that would sink me to my knees, he holds his head up and he goes back. And Sage...Sage has an imagination and way of looking at the world that will change everyone around her. If someone is sick, she will lay her hands on them and close her eyes and heal them. She talks to spirits. She sees angels. She is of a new generation that is born remembering Who They Really Are and she reminds me every day that we are God "godding". Isabella is still taking under her wing those who are broken and filling them with love and acceptance. I do not need to discipline Isabella because she is always immediately sorry when she reacts like a normal girl with hormones and works to repair any hurt she has caused. She is beautiful in every way.

I don't take this job lightly. I am their teacher. I am their example. I am not healthy and need to rest often but even this is a blessing when it enables me to be here full time for my family. Being chronically ill also teaches the kids to be kind to those who are not well and to give of themselves to people in need. Of course, this is hard for them. And some days it is not easy to find the energy to be fully available to five growing kids. But I am here with my arms wide open and ears to listen. And advice that I can already tell is not all bad. I can only be who I am.

Iron Woman and Darth Vader

Everything is easier when you do it with a friend.
Living with a chronic illness is easier when you do it with a friend. I'm guessing that is why they have support groups but I never wanted to be one of those people that sits in a room every week talking about how crappy I feel.
 I would give anything to NOT have my friend be sick even tho knowing I don't face this alone is making every day just a little easier.Not many people even know I'm as sick as I am because this particular sickness is an insipid beast. It lurks. It is invisible. It is easy to fool everyone into thinking I feel fine and yet have the act of breathing hurt. Knowing that someone really GETS this and that I am not alone is bigger than anyone "normal" would understand. Somehow, my friend Jennifer forces her body to do things I could not dream of doing. She runs marathons. She is an iron woman. She is an inspiration. Instead of being overrun by this disease...I'm beginning to run IT over. This is the influence she has on me.
I was never one to really take care of myself. I forget to take my medication. I baby my muscles because I'm afraid of over exerting and suffering the next day when just a little walking would actually improve things a great deal. I eat all the wrong things. And I refuse to wear the mask. I have refused the mask for ten years now.
THE MASK. That Mother F'ing mask. How I HATE that mask.
But...
I have sleep apnea. It is so extreme that I stop breathing more than 75 times an hour. Apparently, I'm lucky I dream at all when my REM stage sleep is disrupted so often. The cure for this kind of apea is a CPAP machine. And I have one with comfortable little (nauseatingly ugly: see ALIEN) nasal pillows and an ELITE O2 machine hooked into it so I can avoid those life changing near death episodes. Not that the first one did not completely transform my life. But I would really like to see my kids grow up...or you would THINK I would but, until Jennifer went for her sleep study and came home with her very own CPAP machine I was not wearing that disdainful mask at ALL. Ever. Even when I knew it could help. Save my life. Make me a happier, better person. It was pride, really. Ego. I feel like I'm eighty years old wearing an oxygen mask to bed. I feel UGLY. My mother made all kinds of jokes with the respiratory therapist about some very creepy role playing she thought my partner and I could make happen with that mask and although I didnt run out of the room when she laughed about it, I certainly could not laugh WITH her or envision any scenario in which that damn cpap would be sexy. Unless you find Darth Vader sexy. Or fighter pilots. Ok...Top Gun was sexy. But I'm not deluding myself that I'm in the same category as Tom fucking Cruise. I'm not even a GUY for christ sake.
Anyhow...the point of this whole rant is that I've been wearing the mask. Because, Jennifer is wearing her mask. She even sleeps next to her husband wearing the mask. The reason I love Jen is that she is so totally fucking REAL. She does not hide behind pretense. She is who she is and she does not ever seem to make apologies for who she is. I LOVE THAT ABOUT HER! She inspires me to be ok with who I am. So WHAT if I have to sleep with a mile of hose strapped to my head. So WHAT if I feel like hell and cant make my house into something out of House Beautiful. So WHAT if some of the University mothers look at me and think that my dreads are a desperate attempt to fit in with art students half my age. Why do I care what they think?
I love my friends because they TELL me what they think, even if it hurts just a little to hear it. I need to hear it. I love that kind of honesty between friends. I love that I can accept myself because I feel loved. I feel loved and appreciated even when I disappear for a month or two every so often to "cave" and get my shit together. I feel loved even when I fall asleep half way thru a party. I feel loved and appreciated for ME. I can only be who I am. And the women in my life that inspire me to use my bread machine, to grow gardens, to walk slowly and to take my time...and to laugh at myself...those women are keeping me alive. That is what sisterhood is. We hold each other up. We compare notes on our kids and our relationships and somehow we affirm each other at the best AND worst of times.
If I could heal my dear friend I would. In a heart beat. I would make sure she woke up every day without pain. But in the meantime, I'm grateful that God gave me a friend who looks like Darth Vader when she sleeps every night. Maybe we can pose for a picture in our masks someday and find it actually funny. She could do that for me.
I woke up today feeling better than I have in a long time. And she did that for me too.

OMG is a four letter word

Chaperoning the fourth grade field trip to Letchworth State Park was an eye opening experience. I have such fond memories of riding the bus to the zoo with these same children as Kindergartners, wearing Little Princess t-shirts and velcro sneakers. In three short years they have grown into the equivalent of my own seventh grade class twenty years ago. When my junior class attended our class picnic at the same park, in the same pavilion, I saw a CD for the first time.It has been said recently that our the life are children live is experientially as different from the twentieth century as our lives were from the eighteenth century.
The kids riding the bus yesterday were sporting iphones and digital cameras. I broke up one fight between boys and confiscated an Ipod when I discovered the fourth grader holding it was watching x rated videos. The girls were catty and it was obvious which clique was holding all the cards. It was more obvious who the ring leader of the group was and she easily drew tears when her minions did not follow orders. I try to see the little girl inside and wonder if it is insecurity that forces her to create a circle around herself. If it is insecurity that persuades her to do whatever it takes to keep that circle intact. The other girls were willing to forsake their own ideals just to stay in her favor. She was the Queen and they were her ladies in waiting. When they started singing together in the back of the bus, I was able to look beyond appearances and see the children still inside of them. Until they started singing, word for word, the latest pop singles. They definitely were not singing girl scout songs. And the boys were not talking about soccer or baseball, they were discussing the latest Grand Theft Auto xbox game.

My best friend is a teacher and she told me a story about taking her class to see the famous Cleopatra exhibit in Philadelphia. In order to go on the trip, the kids were missing another activity at school that day in which they were being given cookies. The kids were bored and listless and complaining constantly that they were not getting their cookie. Our local kids don't have the chance to see such famous museums but it is quite possible that if they did, the same would be true. If it does not have multimedia or lasers or a coffee house, it just is not going to excite the kids of today. It is a sad phenomenon and I wonder why we would encourage it. All I hear is "mine" and "want" and "bored" from my children and it was not that way just a short year or two ago. Things are different now and by different I do not mean better. Don't we want them to think for themselves? Don't we want them to be KIDS?

I expect to see the high school kids sporting cell phones and Ipods but when did it become "the thing" to put expensive technology in the hands of kids so young that they cannot stop themselves from running to the edge of a cliff or into a patch of poison ivy? These days, facebook and cell phones ARE poison ivy in the hands of children too immature to think before they hit "send". When my own daughter asked me for a cell phone and told me that most of her class had one, I did not believe her. I did not think it could possibly be true that nine and ten year old kids had phones. But they do. I understand wanting to keep track of a teenager but at ten, I know where my daughter is at all times. And if I need to talk to her, I can call the parent of the child she is with. If she is at school, I can email her teacher. I don't need to search for her and I WANT her to have adults she can go to for help. It's important that she be able to talk to her teacher and she does not need me on speed dial. Being able to text me at a moment's notice may make us closer but it separates her from the rest of the world. It changes the way she communicates. It make SEEM to make her more independent but I think in fact that the opposite is true.

Texting is changing the way our kids interact. It is changing the way they socialize. My teenager can have long, deep conversations with his girlfriends on facebook or with a phone but finds he can't talk to the same girls when they are face to face. And when I try to understand them when they ARE forced to talk, they speak with abbreviations and monosyllables. OMG. WTH. LOL. I would rather have them actually laugh out loud then substitute that with a three letter word. In this case, 3 does equal 4. What we have done to our children with this so called progress IS a four letter word. Rumors spin out of control. Bullying is no longer hand to hand, it is done with the ease of a button. Kids are killing themselves over this.

I want to encourage my children to explore themselves. Express themselves. PLAY. Playing this game of who has the best phone and who has the most contacts is taking away their childhood. It was easy to spot the offspring of the parents who still believe this. They were making up games, collecting leaves, looking for wildlife and playing on the playground. Most of the boys seemed to be phone free and they teamed up to play baseball. My daughter wanted to take as many pictures as she could of a little girl with a life threatening illness and created memories that she would be able to cherish. She tried to protect the kids who were feeling sick on the bus. She was not alone entirely in this. I saw a few girls covering their sick friend with their own jackets and stroking her head to make her feel better. I saw little boys excited over holding a snake and my own daughters best friend brought home two little snails. She protected them as best she could on the ride home until another child was dared to eat one. I watched in awe as this sweet little girl bit into a snail just because the popular crew was chanting her name. She wanted desperately to fit into this group.

Bella's best friend was wearing a shirt she made herself and still had bits of face paint on her cheeks from the day before. They didn't compare labels on their clothes and they did not spend their time shooting texts. Later that day, Bella's best friend made her very FIRST phone call to our house (using her MOM'S cell phone) just to say "I love you, Bella". I saw them caring. And sharing. And expressing concern for the girl's in the back of the bus who only seemed to care who had the best phone. Bella is still a little girl. She finds joy in hula hooping and still takes baths with her little sister. I see her growing up but it is ok with me if she takes her time. She will only be a child for a few short years and there is plenty of time for her to stress about things like phones and blogs and social pressure in the years ahead. If she wants to ask a friend to play, she can walk down the street and knock on their door the old fashioned way. She can have fun with a garden hose or in the creek. She can run in the sun and pick flowers without worrying about her tan or her hair. And she does not need to stop what she is doing to check her text messages. Life should be simple. Carefree. Fun. If that means she deals with not having the latest of everything, so be it.

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.

Out from under the covers

I have woken up every morning this week feeling like an eighty year old woman. This is totally unacceptable to me. It infuriates me. Not only is my house such an embarrassment that I would probably not open the door if I heard a knock, even if I was expecting Adele for dinner, but I can barely keep my eyes open to even catch up on episodes of House while I am resting. I do not have energy to run to the store. I don't feel like running to the bathroom!

What irritates me the most right now is that I have this overwhelming desire to just LIVE. I want to be out in the sunshine, walking creeks or stalking through the woods with my camera. I want to jump on the trampoline with my kids. I want to bust my budget on flowers and herbs and tomato plants and garden every single morning of the summer. The entire world is beckoning to me and my dogs are to run and play. I'M begging to run and play. And I have a thousand plans for the next week. Knowing I will somehow manage to carry them off but with a minimum of grace and nowhere near the effort I should put into them is making me feel postpartum. I had a shopping cart full of plants, including the most beautiful rhododendrum bush I have ever seen yesterday. It was overflowing with huge, succulent white blossoms. But the effort of just pushing the cart did me in and I left it packed with plants in the aisle. Picking out plants warms my heart and I knew I would never be able to plant them when pushing the cart was too much for me.

I have lived with this chronic illness for a dozen years now. I know how to push through pain. I know that if I go for a hike or dance to my favorite song that I will pay for it somehow the next day. And normally I don't care! Normally, I live my life despite the consequences to my body. But this week something is different and I can't seem to stand on my own two feet without wanting to melt into a puddle. I find myself angry at this illness that is claiming my time and the childhoods of my five kids.Anger has never made anyone better. But every time  I look out the window and see the sun shining...I want to cry.

I grew up with a very ill mother. I changed her bed pans and washed her when she needed it. I knew that I could never really count on her to be at concerts or games. It was understood that she probably would not make it to see my wedding much less my prom. And I learned to accept that. She has outlived all expectations and we are blessed to still have her. But I promised my family that I would not let my own chronic illness interfere with our lives. I would be the kind of mother that wrestled and played and attended every single little league game. I have to try harder than many just because I am a single mother. I never let that deter me before. But today, they are serving my favorite lunch in the school cafeteria and it's always a given that I will be there for the turkey gravy and mashed potatoes. School lunches are always fun for the kids and I. Sometimes I paint the nails of Sage's friends. Sometimes I bring extra money for ice cream. Once I brought a bag of crazy hats and did hair, but that is another story in and of itself. All of the kids love it when I come to join them. I'm the fun mother, the silly mother, the mother that listens and makes everybody smile. I do all of the things that I wished my mother had done for me. And I know that she tried too, in every way, to get past her illness and to be there for me. But she had a stroke and she was not living with "just" chronic pain. She was in a wheelchair. I am NOT in a wheelchair and I have refused to let pain get in my way. Before Sage was born and when Isabella was much smaller, I let myself succumb to the depression that often accompanies a chronic illness; especially an illness defined in many ways by severe fatigue. This is not the fatigue that you feel after being up for days or after a long day at work. Or even after a marathon. This is fatigue that makes your eyes roll up in your head. It claims your memory. It stifles your attention. It runs you down like a derailed train and you are nothing in its path. You are under an avalanche of exhaustion. It is a point of pride with me that I overcame the depression that had buried me for so long. I watched my children growing and I missed being part of that. Once I climbed from my bed, so long ago, I was determined to not crawl back in.

I started walking a few weeks ago with a good friend. She seems to understand that I can't keep up with her or climb hills. YET. Last week I was sorely tempted to just stay in bed, but I got up and I walked. And I was glad that I did. If she called me today, I don't think I would be able to do it. It seems to have progressed from the usual ache and fogginess into something of a whole other caliper.

I refuse to be taken down just because I was born without a pulse in my left arm or because twelve years ago a doctor said I had Fibromyalgia and that it would have to define my life from then on. I know that by replacing my thyroid hormones I can up the ante and give my body an edge that by nature it does not have. I know that pain is something that I can learn to live with. All I want to do right now is climb under my thick, soft duvet and dream myself into a place where I am running and climbing and doing cartwheels. But the truth is, that often in my dreams I still feel the pain. If my arms hurt, I dream that I have broken them. If my back hurts, my dream will make up a reason to explain the pain. I cant escape it, even in sleep.

There is a world of things I want to do. I am used to having to fight myself out of bed in the morning. I am used to smiling when the face on the pain scale chart says I should be crying out loud. I am used to saying that I am fine, even when my body does not feel fine. Because essentially, I AM fine. This illness does not define me. I do not talk about it to most people. The parents of my children's friends have no idea that I sleep with oxygen by my bed and take pills before breakfast, since I'm not allowed to eat until I have them. If I were to use a cane, which I have in the past, then people would define me by that cane. I refused to be defined by sickness. I feel that speaking about it only manifests it. And I am not going to stop living and loving and breathing.

Today, I find this is a huge challenge for me. This week has been one of the worst I have dealt with in a long time. I can sit and wonder what made that so. I can complain about the weather and the weird effect it is having on my joints. I can feel miserable and depressed and try to sleep my day away. It's what I WANT to do, God knows. I am motivated to do a hundred and one things today and my body won't let me keep up with my heart. The key today will be to make my to-do list a bit simpler. Carve it down into something I can manage. Instead of sinking into a depression because I cannot do it all, I will give gratitude that I am able to do SOME. I will give endless thanks that I am here and alive and able to experience the all of everything. This is who I am. I am an explorer, a seeker, an adventurer...a woman who can laugh through tears.

I will do it not just for me but because somewhere near me, is a person that can't stand. Can't walk. Can't see or can't hear. Somewhere near me is a mother who cannot have lunch with her child. Somewhere there is a child who needs an extra smile today and always looks forward to MINE. And I will go hear the birds sing and eat in a cafeteria full of screaming, happy children  for THEM.