a song for time

Sometimes it takes a life time
before you finally see.
Face to face with your demons
your regrets and memories.

You say if you could do it over
you know you would do it differently
So you come to terms with your brokenness, your heart and your humanity.

Oh oh if i could only see all the beauty that is right here in front of me.
Oh oh if i could just believe that theres a love that's gonna come and rescue me

Seasons change and darkness fades into another day.
But you my friend are constant like gathering clouds bring on the rain.
I can hear the sighing of the sea sea.
I can hear the wind blowing
but the only thing I want to hear is your footsteps coming up the stairs
coming home to me

Oh oh if I could only see all the beauty right in front of me
Oh oh if I could just believe that theres a love that gonna come and rescue me

ODE TO RED LIPSTICK

" Tell me that suffering is not in vain. That theres a purpose for our pain and a reason to believe and walk on ".......That is a line in a song I wrote a while ago....I have never got a response to this cry of my heart. But, I have learned to walk on.
Matter of fact I walk 3-4 times a week. For me walking is a way of life that I learned when I was very young. My mother was a walker. She taught me the deeper meaning of walking. She started me out when I was about 4 years old , sometime around 1955, just like the date of our new red and white Buick convertible was back then. She would walk with me up to the corner of our street and then sit me down on the curb and say, "now don't move you can watch me walk from here". She then walked just far enough in one direction that she could still see me and then turned around and walk back towards me, passing me going in the opposite direction. As I grew in stature and years I began to walk with her. She told me to breath in thru my nose and then out my mouth..explaining how the oxygen was good for blood circulation, our complexions and cleared our minds. At that time I had no idea of what she was talking about but it was fun and gave me time with her.
We lived in studio city, a suburb of the San Fernando valley in the great city of Los Angeles....yes,I am "like totally a valley girl"......My mother was one of the first "health foodies", she quit smoking in the early fifties citing it wasn't good for your lungs or her skin. This was before the word was out on how it caused cancer. She also used a slant board faithfully. I could have been tickled to death by my two older brothers screaming out, " MOTHER HELP" and there she'd be laying on that stupid slant board. We also use to frequent the only and probably the first health food store in Studio city. It was on Ventura Blvd. It was nothing like the Co-op I go to today - it was more in the tradition of Jack la lane style.
My mother use to say to me when I was distraught or was running from my two pesty brothers "calmmado". She told me it was Spanish for calm yourself. I think she made the word up. She also would say how the Chinese showed no emotion on their faces and that is why there skin looked so flawless.....I was a very dramatic child.My face was always in an array of expressions like smiling or frowning hence the deep grooves in my face today from a life of laughing and crying. Anyways, the walking,the breathing, the healthy sparse diet and the wisdom of quieting oneself.... My mom was ahead of her time. She was also gorgeous, called me darling and wore red lipstick ( which I never go out of the house wearing). Her and her sister Phyllis," Auntie Phyllis" were putting masks on their face made from buttermilk, egg, and or oatmeal long before those things were $100.00 a jar...they were AMAZING. I miss them both so much I can hardly breathe. The ironic part of this is that I didn't really become like them or understand there wisdom until they both died. There is a lesson to be learned here but you don't learn it easily.
When I was 7 years old we moved to Sherman oaks another suburb of the San Fernando valley. That's when I began walking by myself. I would walk in the back hills of our house,exploring and looking for blue belly lizards.This area is now the 405 L.A. freeway. Sometime after that I started walking home from school which was a good way to burn up nervous energy which i had plenty of. When I became a rebellious teen , I would walk for miles by my self. It was often out of loneliness but it was also a way of taking control of my life. My father started having financial problems when I was about 13 and I hated being at home. My parents didn't have the money or energy to keep me busy with sports or music so I would come home from school, eat, change my clothes and walk. I did find myself in some precarious places but that is another story for another time.
I later moved to Topanga Canyon in Malibu and spent a lot of time walking thru the canyon down to the Pacific Ocean. I must admit to a deep love of the sea and have lived very close to it most of my life. One foot in front of the other I have walked for miles in my lifetime. Walking away from the present into the future. So thank you mother for your wisdom and the legacy of how to take care of my body and soul. And of course RED LIPSTICK.

The unraveling

How can we say we know god?....I used to think or should I say I believed what people told me when they said, " you know that you know ". That there's this inner knowing... there is some truth to that inner knowing but it is subjective and lets face it.... God is the Great Mystery......not that it hurts one's life to say you know that you know....but what is it that you know? Some people need the structure of a set of rules to keep their lives in line....and some don't as much....the bible says that its about saving our selves from eternal damnation because we are born into sin...well have you ever seen a new born.....they are the farthest thing from sin...but if this is true then it is the soul of a being that is sin.......are we doomed to sin from the moment we take our first breath? ...is this our mortal destiny?...And then we spend the rest of our lives battling with this inherent drive to sin. I say battle because there is also, thanks to our benevolent creator, a thing called conscience....this little inner alarm tells us when we do something bad ....but our conscience is subjective too ......think of men who kill others in the name of their god believing what they're doing is good not bad......it gets very confusing....and thats why I want to become a nun...... yes a nun, you heard me....
Yea its pretty funny when I think of this good old Jewish princess entering into the monastic life.....I'd be willing to give up everything except my Bergdorf Goodman account..... then again they probably make designer robes for nuns, they make designer birkas.....Maybe I should start my own line of Monastic wear, religious robes made from cashmere,silk, and fine Italian linens, or do you think that would be defeating the purpose.....

a word or two on loneliness

In the months that followed Michael's first seizure... I felt so alone.....If someone would have taken some time to feel my pain, grieve with me, it might have helped.... I say might have because in reality no one could have made Michael better ...I know its hard to witness another person in pain. It can be over whelming. You cant heal them or you don't have the power to change there life...but the bible says bear one an others burdens, mourn with those who mourn and weep with those who weep. The caring and the empathy matters....It matters allot... As I said it cant bring the healing one would want but knowing that someone cares softens and warms the cold hard places of loneliness and sorrow......My mother use to say "laugh and the world laughs with you, cry and you cry alone" unfortunately this can often be true.
I have always expected my friends and family to be understanding. Psychology and religion tells us that expectations are the no.1 problem in relating to one another. I think the point is that expectations usually set us up for disappointments. I guess if we can go into our expectations and not be shocked when people don't live up to them,maybe not having a high expectation will soften the fall?
I do know that a little compassion goes a long way......Letting someone know you see their pain and acknowledge their hardship can be very comforting.

I feel the pain, like it was a choice I have to make ......Should I let the pain in? ....The pain is like a giant wave poising at its highest point right before it crashes over me. It hovers there waiting for my consent....Those moments are when the anxiety is most unbearable. I feel like I'm being suffocated. If I don't allow the wave to break upon me I will begin to numb out. If I don't choose to feel the pain it morphs into other ways of being which I sadly say I participate in . Ill do anything to keep this wave of anxiety at bay. I shop, twist my hair, obsess over people I don't like. Its not just the doing of those things but all the other dynamics that go into it like shame, guilt, and fear. These are all part of having an addiction and are very consuming distractions. There are also healthy addictions like exercise, politics and religion, which I also participate in . On the other hand if I choose to feel the pain, to allow my self to grieve, to let the wave engulf me..... let it submerge me if you will into the ocean of sorrow, and feel the anguish and hopelessness, somehow by surrendering to the pain, theres a release and I find myself alive although it felt like I was was dying. The whole process is the life death life cycle and in order to get to the life part of the cycle you have to go through what feels like the valley of death. .................
It was the fourth of July weekend and Michael spent it having seizures and sleeping. That's what happens.... he has seizures and they knock him out, they take all his energy away and then some ....he sleeps and sleeps for days.......
Right now he is only on one medication, Lamictal. We have tryed every drug there is including the ketogenic diet and the Vegas nerve stimulator implant. So we our looking for some new direction . There are 2 new medications on the market but they are basically the same as the other ones we've already tried.. There is also brain surgery and we don't know if Michael is a candidate for it and the thought of him having brain surgery is daunting to say the least. Right now I'm not looking at the reality of it because all I can think of is how wonderful it would be to just snip out a part of Michael's brain that has the seizures and then presto no more seizures....We are going to get an out patient EEG done. The doctor wants a CD made of it so he can study it closely himself and then bring it in for discussion to a panel of other neurologists he works with, if they see theres a possibility brain surgery would help, we will go down to San Francisco and do an in patient video EEG..........
I once had a neurologist tell me theres no one who hopes like a mother. So yes I find myself still hoping even after 17 years of no real improvement. I still have hope that something can be done to make my wonderful son better......

I'll never forget the second seizure Michael had. It was just about 24 hrs after the first one had happened at the department store. He was sitting at his little tykes table ,giggling and playing Lego's with his sister Jennifer. I was cooking in the kitchen cutting up vegetables, I just happened to look up and at that moment, he was having a seizure,just about 3 seconds long. An expression came over his face I had never seen him have before ,his smiling animated face became solemn and withdraw. Within those few seconds he had changed. His world was no longer safe,not even his father and mother could protect him from the avalanche of seizures that were about to bury him . His world became a world I can only observe. If you can image walking down the street or standing up talking to someone and wham out of nowhere you are abducted by a seizure .It grabs hold of you, shakes you and doesn't let go until its wrung out all your energy. Ive heard it described as "stolen moments" but it affects Michael more than for just a moment. The post seizure period can last 1-2 hrs but now after 17 years of seizures just a few seizures can wipe him out for days where all he can do is sleep. The only problem with sleeping for days (besides missing out on your life )is sleep is when his seizure threshold is low and he winds up having more seizures which means he needs more rest..it is a viscous cycle which plays itself out for days. His adrenal glands are shot and so are mine.............
We have endured emergency room visits, IVs that Michael would yank out of his arm and seizures that knocked out his front teeth after being throw down to the ground.. At one of our visits to the ER they overdosed him on Valium. He started going into respiratory failure and they came to us saying "your child is going to die if we dont intubate him , we need your consent , and you have 10 seconds to make that decision". The next five days were spent in the pediatric intensive care unit with Michael having a plastic tube down his throat. He was about 8 years old when that happened. Since then I never let a nurse,paramedic or doctor start an IV without knowing exactly what they are doing and why. The list goes on from there ,there was the ketogenic diet, the Vagus nerve stimulator implant surgery, the surgery to replace the implant battery which, we will be facing again soon. The last time we replaced the battery, the incision became infected because Michael kept scratching at it. It took months to heal. I've not even mentioned the grueling process of starting Michael on the anti-seizure drugs , all these many medications that we had to gradually increase the dosage of to reach therapeutic blood levels , while watching the horrible side effects and then gradually taking him off of because they did not work. Along with this there were of course the endless blood tests to check the blood levels for whatever medication he was on. Not to mention the difficulty and sometimes insanity of trying to get a young mentally disabled child to take his medicine because if he doesn't things could even get worse. I've already written about the painful experience with the first neurologist , well not shortly after that I had a pediatrician tell me that Michael was probably going to die at an early age. He said this very matter of factley....I went to see this doctor because Michael had a sinus infection. Can you believe that? He knew nothing about neurology or genetics!!!!!! Oh yes! Those were the early days. Our initiation into, if you will, the world of suffering . This is the first time I have ever written about our history. I've journaled some here and there but this time I wanted to tell Michael's story, my attempt to get it all out and speak to the collective of mothers out there who share the common experience of raising a child with rare disabilities.

the divine mother

Having read the Greek myth of Demeter and Persephone, I began to look deeper into its many meanings and found some personal similarities with Demeter I never saw before. She was a Greek Goddess but also a mother who experienced the pain of having a child who she knew was suffering and could do nothing about it, although she tried. She was a mother whose child was taken from her against her will. I found this story to be very pertinent to my own life with my son Michael. As the story goes, Persephone was picking flowers with not a care in the world when the earth opened up and Hades took her down into the underworld. When Demeter heard her daughter crying out she felt a great pain in her heart.. She was overcome with grief.. Demeter stood in the reality of this horrific pain and went in search of her daughter. I find it fascinating that in the story she doesn't receive any solace from her connection to the spiritual realm and her gods. She abstains from divine food and the putting on of her immortal clothing and takes off to rescue her daughter. What we usually do when in a crisis is cry out to God, but she doesn't.I know in my own story with Michael I found it hard to justify receiving anything good from God. My thinking being, that if he was to console me and not meet Michael's need, which was far greater, what kind of God is he? So yes, I felt like Demeter. This part of her story is central to the mother that I am. Like Persephone playing among the flowers and being swallowed up by the earth, Michael also was playing in the department store, hiding under the clothing racks and being mischievous when out of nowhere he was literally taken down to the underground, if you will, by a seizure. Hearing the cries of her daughter Demeter was struck with pain that was devastating and like the ancient mother I too was struck down with an unbearable pain that has left my heart broken forever. Like Demeter I was inconsolable.... and to be honest .....to this day there is nothing that takes away the pain. Everyday and every night I worry about my son. I know all mothers that have children with disabilities will worry about them throughout their lives-for when we are gone who will care for them? No one can care for them like we do. We believe in them, have hope for them and love them with a love so strong no one can duplicate. Among Michael's caregivers I am called The Mama Bear. I am fierce in my oversight of him. Now that Michael is a young adult I have learned to let go (a little)and trust me it isn't easy. It will probably never be easy to trust that he will be well taken care of. I will never feel that assurance. Unlike Demeter who gets her daughter back, I will never have Michael fully back. I will always grieve and feel the pain of this loss. The loss of knowing he will never experience being in love, marry or drive a car. These are thoughts that break my heart. When he was ten I still held onto the hope that Jesus would heal him but as the days turned into months and the months to years, my hopes were dashed and what remained was a sobering sadness. I joined the millions of others who suffer in silence . I will say this ,the one thing i am learning is that suffering has a mysterious side to it that can bring about a deeper connection to ones soul . Suffering in its very nature can purify us like a devouring fire that burns away at the unessential things in our lives and lays bare our heart and soul. Where we go from there is the ongoing journey, the ups and downs of believing and doubting . But if we never know suffering then it is our tendency to stay consumed with our own egos . So do i believe we all must suffer to know our soul? . No, of course not-but sorrow and suffering cause us to question in a way we usually don't. When we ask the age old question "why do the innocent suffer" and we don't get an answer back, we are left with facing the vast open plains of this very difficult mystery. So then maybe we should not be asking why the suffering, but asking how do we go on from here.
I just got a phone call from Michael's day program letting me know he had another seizure. I want to know of every seizure he has. I have some crazy idea that if i know i can carry part of his burden, then he wont suffer alone. After the phone call I caught myself still questioning after hundreds of seizures, why? but i stopped and resigned myself to the pain....and thats when i allow myself to grieve again, letting the pain in and then letting it out once more.

And on and on it goes...

Here I am again. Rummaging through my mind...that is, whats left of it. I've had a headache for the past 5 days. It was like a vacation in hell. All I could do was lay on my bed writhing in pain and anxiety. But today I am better. It's raining now, a good time to have a cup of my favorite coffee and find some solace and friendship in writing...

Michael's seizures began to manifest rapidly about 2 weeks after his first episode at Liberty House. Our pediatrician referred us to a neurologist, and the neurologist ordered an EEG (which is essentially a brain scan). That was the day it was confirmed Michael had epilepsy. This also marked the beginning of my experience with numerous doctors. Many were not helpful or even a little compassionate and very few were caring or had any real insight.

We had been working with the neurologist for about 3 months. I knew nothing about epilepsy, so I was completely at his mercy when it came to seizures. But I had previously worked at Kaiser medical clinic as a medical assistant, so the one thing I did know something about was blood tests. It had been part of my job description to fill out lab requests and explain them to the patient. I questioned the neurologist on the why of one particular blood test he had ordered, which I thought unnecessary. I communicated this very diplomatically to his assistant and waited for his reply...I never got one. I called his office, and his assistant told me he no longer wanted to be our doctor and we would be receiving a letter from him stating this. I was devastated. My son was having seizures. The medication this doctor had him on was Dilantin and Phenobarbitol, which were not working and Michael was having serious side effects like loss of balance and loss of speech.

The letter came saying we were horrible parents and he could not possibly work with our negligent care of our son. This was the beginning of much pain, grief, and lonliness. Disappointment followed disappointment. My husband Greg and I were having marital problems. We had no money and we had a beautiful 7 year old daughter who had a verocious appetite for life. She suffered too- not only the loss of her adorable little brother but there was a level of stress in the house that she later needed to escape from.

And of course as the story goes, there were the friends who said all the wrong things and never cried with us, or came over just to say "your not alone". Everyone had something to say. Like in the biblical story of Job, some came blaming us others said we needed to fast and pray or that Michael had a demon. Then of course came the "you of little faith" advice... All that well intended garble made it worse and as Michael's seizures increased so did the pain of watching our child suffer and not be able to do a thing.

The Peace We All Need.

I'm at my kitchen dining table listening to the fire lapping up the crackling wood. God, I love that sound. It seems to soften all the rough edges in my mind.
My son, Michael will be 23 this coming January. He was normal to the eye at birth. He had learned how to ride a bike with training wheels when he was five years old and was learning to play the harmonica. Our whole family is musical. His father plays guitar and I play the piano. The neighborhood gardener named him Troubles because he was so mischievious. Like his storybook character, Curious George, he was always curious. favorite
Michael and his sister Jennifer were both born on the island of Hawaii. We had lived there since 1980. When he was 5 years 11 mos. old, I was shopping at a department store called Liberty House in Kaneohe and had brought him with me. While I was looking at a blouse and had my back turned on him, he had wandered off, being curious as usual. I turned and a few seconds later and I couldn't see him. I anxiously called out his name and began to walk around in search of him. That's when I saw my son lying flat on his back, his face blue and not moving. I began to scream over and over, "Call 911!" as I held his limp body in my arms. Part of me died that day and has never been revived but the parametics did come and Michael was revived. The parametics told me he had had a seizure and to contact his doctor. That marked the beginning of a kind of madness. The kind that cries out to God, "How could you take this beautiful child and bring him into a life of affliction?" I think what can make the madness is no answer. Heaven is silent. That is maddening. But we survive don't we, so is that an answer? Maybe.
That was day one of this chapter in my story with my son, Michael, whom i love more than my life. That unforgettable event marked the beginning of many more days filled with unbearable grief, doctors, medications, emergency rooms, dreams dashed and of course all the well meaning people whose words or lack of them made me feel alone and invisible.
All of our lives are filled with some kind of grief or sadness. So where do we find the peace we need? I think maybe we find it in the little things. The moments in between the madness, where joy can still be found in watching your children sound asleep, hearing their laughter, or the spark of hope that tomorrow might just be better.

just thinking...

Van Gogh said "Sadness will last forever." Sadness? I think Madness can last just as long. Madness is a lifetime of dissapointments and great joys- and how we reconcile the two. We can never be happy all the time- who would want to be? Maybe those who have never experienced what 'bittersweet' means or understood the life-death-life cycle continue to misunderstand the importance of sorrow. For me, there will always be a fine line between madness and devotion.
This is my first blog. A small window into my life as a mother, writer, and woman in constant search of inspiration. A lot of this blog will be on what I devote my life to as mother with a son who is mentally-disabled with a rare genetic disorder. I will share information on diet, medications, coping emotionally, and the overall social, political, and spiritual journey of our family.