Grief

In only a few weeks, it will be one year since the death of my son.

Every single day, I ache for Edmund.

The desire to hold him in my arms is indescribable. My absolute need to ruffle his silky hair, to look into his eyes, to hold his hand. To simply have him stand at my side. That need haunts me.

And yet, here I am. A mother and a wife. I have three incredible children.

Who have lost a brother.

I have an amazing husband

Who has lost a son.

And while I may want to embrace my son tightly. While I may need to have him at my side.

I cannot.

As most people who have experienced something traumatic, I have found several websites of mothers whose children have died.

At times, it can be helpful.

And yet, at times it can be very, very frightening.

Recently, I found a site of a mother who had lost her child to cancer. This mother had another child. Of the opposite sex.

Every post was spent on how the mother desired to join her child in heaven.

How only sleep brought her peace, because her days brought her no joy.

How the only delight she did get out of her days was when she saw "sparks of [the child that had passed]" in the child that was living. How she looked forward to telling her living child how amazing the child that had passed was.

Every moment was focused on the child who had passed. Every moment.

Any moment that mentioned the living child also mentioned the dead child.

The living child was, sadly, a tarnished reflection of the the other child in the mothers eyes.

I cannot begin to describe how destructive this is.

How can any child live up to a ghost?

A memory?

As a mother who has lost a child, I do understand how horribly deep grief can go. But you can not allow that depth to take over you.

Grief can cause destruction. Especially to the children left behind.

If you see someone who has lost their battle, do not feel embarrassed to offer help.

Do not think "it's not my place."

Do not think "I guess I just don't understand"

If you know that someone has reached that edge, offer help.

Real help. Not a cooked meal. But an ear to listen. A shoulder to cry on and, if need be a venue for even more help.

Clergy, or a therapist.

Family members may not see it. They may choose to ignore it.

Sometimes, friendship means doing the most difficult thing in the world:

Offering real help.

It is not just for the parent, but for that living child. That child who wonders;

"Why can't mom love me as much as she loved....."

Chapter Nineteen: Testing

I had never done so much sitting in my life.

When you enter into the wonderful world of Medical Tests that is what you do as a caregiver. You sit. You sit and wait for a doctor. You sit and listen to a doctor. You sit and hold a hand. You sit and look into your childs eyes.

You sit. And while you sit you try not to allow your brain to run off with bizarre and terrifying thoughts.

The tests that Edmund endured revealed nothing.

Nothing at all.

And so we were left both relieved and confused.

Perhaps it was a one-off incident. Brought on by anger and fear.

Perhaps, we thought, life with our unique child would go on.

Perhaps, we thought. we just needed to instill in him our love for him.

Perhaps.

And then one day, our son, our Edmund began arguing with the kitchen table.

My Life

So, a friend of mine told me that I should tell you a little bit more about myself. I don't know if I agree but, so many blogs feature a post about the blogger--so here is my try.

While I do love my parents, they were never very close to me. I honestly believe that they had this list in their heads; Date, Marry, Buy house...Have child. And so I appeared. Both my parents were completely hands off. Hugs never happened. Neither did kisses or even pats on the back. The only physical contact I ever had with them was if I needed to be picked up to be placed on something, or put down on something. My parents never spoke to me 'as a child' all conversations were initiated as if I was an adult. They expected me, within limits, to respond in kind.

I went to boarding school. Far, far from home. From 1st grade to 12th. The same school. It was an amazing and rather---interesting---experience.

My summers were spent with my maternal grandparents. Nana and Po. My fondest and warmest memories come from those years. My summers stopped when I entered college and got a full time job--away from the farm.

Nana and Po lived on a cow farm in Nebraska. I still cannot concieve that these two people raised my mother. They were liberal with their physical and emotional expression. It fed my need. That farm represented the greatest part of my childhood. And it formed who I am today.

My summers were both spent finding lakes to splash in. And helping Po in difficult births of the summer calfs. I sweated from climbing trees, and from helping bring the hay in.

My parents gave me a love of books and knowledge.

My grandparents gave me the love of my fellow man, and the understanding of others.

My friend says I had a "very strange life."

Its my life, and I am glad of it.

I Cried Today

I cried today. Since Edmund's death, I have cried many times. I have also vomited, thrown a glass on the floor(no worries-no kids in sight), kicked a wall and obliterated a rather nice down pillow.

But today, today I cried. I cried that deep, choking, sobbing and moaning cry. I lost all semblance of a calm individual and, quite literally, lost it. I had no control. I couldn't stop. Right now, at the break of dawn (because I haven't slept), my eyes are mere slits and I feel as if I have the worlds worst hangover..

People say that crying can be cathartic. It's not. It just makes you look as awful as you feel.

The kids were tucked into bed and my Husband decided to get to sleep early. I had spent part of the evening going through photos. I found a photo of Edmund, Theo, Jemma, Lucy and a neighbor's child I will call Tracy. Tracy is severely mentally challenged. She has the mental capacity of a two year old. Tracy's parents are some of our best friends. We frequently get together or watch each others kids.

A frequent member of Edmund's varied hallucinations was someone called Mip. Mip would create intense fear in Edmund. We never figured out who, or what, Mip was. The entire family learned to know when Mip would appear. Edmund would lose all color in his face, crumple to the floor, and try to find the nearest corner to tuck himself into. Edmund would stay on the floor in a tight ball, sometimes he would say is "Mip is here" or he would yell at Mip to go away, beg Mip to not hurt him. It was terrifying for all of us. You could hold him, rock him, hug him. You could talk to him.Nothing would console him. My husband or I, even one of the kids (depending on the intensity of his break) would sit with Edmund until he became lucid again.

Now, I've been looking at photos for months, I want to put them in an album in chronological order, but e its taken some time. For some reason, this photo set me off. It reminded me of a moment in our lives that has stayed with me, burned in my soul.

I honestly can't remember the month or year. I do know that it was fall. I know that Jemma and Lucy were young. Edmund's illness had at that point been very apparent but his outbursts were rarely violent and if so, were easily controlled by a swift intervention of my Husband picking up Edmund and leaving the scene. Tracy and her parents had come for a visit. Tracy's family knew of Edmund's history.

Edmund and Theo understood Tracy. They loved playing with her, and she with them. Some fantastical imagined world was on display. Kids laughing and dancing. Unicorns and ninjas were at attendance (yes--ninjas and unicorns).

Tracy's mother and I were sitting, just blathering away when a sharp, concerned "Mom" was yelled by Theo. Edmund was on the ground. Pale, sweaty and trembling. He was crawling towards the swing set. By his body language, I knew Mip had decided to make an appearance. I got up, and went slowly towards Edmund. Before I could reach him, Tracy went towards him. I was not worried, as I knew that Edmund would not harm her however, I did begin to run. I reached Edmund and bent to pick him up. At this point Tracy had come within just a few feet of us.

Tracy: Nend-un?

(Tracy is pointing at Edmund, large tears in her eyes)

I begin to say that Edmund is okay as I pick him up. But before I can do anything, Edmund stands and turns so his back is towards Tracy. Tracy's mother had come up and started off with her daughter when all of us were stunned by Edmund standing tall and puffing his chest out:

Edmund: You leave her alone. You can't take her. Tracy doesn't know the rules. Leave her alone. Got it?

(Edmund is stalking forward)

And then, as it would always be, Edmund became lucid. It was, quite frankly, an amazing transformation. That beautiful face would reappear. That body would go from defeated and frightened to stoic and delighted.

Edmund turned towards us and said that he was tired. He went off to his room. We decided to end the play-date and exchanged hugs all around. I checked on Edmund who was happily reading in his bed.

That incident was what Edmund's life was made of. Moments of pure terror. Moments of fear and isolation. But through it all, he always always defended others.

Yes my son eventually became violent. Yes, he needed professional intervention. Yes he needed to be sent to a hospital for serious care.

But my son also, through it all, amazingly and heartbreakingly, would protect those he believed defenseless. Would protect those he loved. Would bat away his own terror and point his screams to be a barrier and shield.

I will tell you more(obviously) of his history. But understand this: When Edmund became seriously violent towards others, it was always in defense.

This story will be elaborated on eventually but; Edmund stabbed me. I could not stop it. He was destroyed at that point. Lost. But as he came at me, and as I tried to talk to him, he was screaming

"You will not hurt my Mommy. You will not hurt my Mom."

And so today I lost it. I lost it for Edmund. I lost it for Theo, Jemma and Lucy. I lost it for my Husband and myself. I lost it for Tracy.

I just Lost it.

Now I just have to come up with a good excuse as to why I look this way this morning.

Chapter Eighteen: Being Patient

Click here for the last post on our story.

I remember quite clearly, the panic I felt that morning. I had our doctor on speed dial and as soon as the clock hit nine, I dialed.

After explaining exactly what happened the night before, the doctor felt that it was something to investigate. So we went to see him about an hour after we spoke. My husband, me and all four kids trouped into the waiting room. When it was Edmund's time, we all went into the tiny exam room. I was relieved when the nurse said she would get one of the receptionists to keep an eye on Theo while we all spoke.

Edmund's temp, blood pressure and pulse were all normal. As soon as the nurse left, the doctor came in.

Doctor: Well there son, why are you here today?
(kneels down and smiles at Edmund)

Edmund: I am not your son.
(folds his arms and steps away from the doctor)

Me: Edmu--
(I stop as our doctor raises his hand in a gesture of silence)

D: No, no you are not my son. But I use that word when I like people. Its like saying buddy.
(He moves back from Edmund, never taking his eyes off of him)

E: Oh. I don't know why I'm here. Mom and Dad said I had to come 'cause of last night.
(Edmund begins to shake) But I told them. I told them I don't know what happened. I really don't remember. (His face turns red and large tears begin to pool in his eyes) I can't remember what I said to mommy. I can't okay? I can't, I can't I can't!
(He is stomping his foot and shaking his fist.)

I leaned down and embraced him. His whole body was trembling. He began to cry. Deep and hard. The doctor stood and reached for a plastic cup which he filled with water.

D: Could you put Edmund on the table?

After placing a wet, but quiet Edmund on the table I gave him another squeeze. The Doctor handed him the cup and Edmund drank all the water in one swift movement.

D: Now, I want you to tell me what you do remember okay? Please. I'm not angry with you son. And, I do believe you. But it is very important that you tell me what you do remember.
(The doctor had sat himself right beside Edmund. He did not touch him, but kept looking in his eyes)

E:I was reading. I think. Theo was, he was-was playing with-something. Mom came in and said we had--we had to get ready to sleep.
(Edmund stopped speaking and stared at the bottom of the cup.)

D: Is that all? Is that al--
(Edmund leaped back into his story. He continued to stare at the bottom of the cup)

E: Mommy. She-she-she was asking if I was okay. She said I scared her. I said 'why.'I told her--I told her I didn't remember yelling. And then she got angry.

D: So, Edmund. Edmund I want you to look at me please.
(Edmund lifted his eyes.)

D: Did anything happen after you were reading?

E: Yeah. Mom said she was scared and then she said I had lied. She said I lied 'cause I didn't tell her why I yelled at her.

D: You don't remember yelling at her.

E: No! I just said that! I said I don't remember yelling.
(Edmund began to get upset again)

D: I'm sorry Edmund. You're right You did say that. I am very, very sorry. Okay?

The doctor then stood and began his exam. It was like any other well-check. It seemed so simple. Easy almost. Reflexes, eyes, ears, nose and mouth. He tapped Edmund's chest, listened to his heart and lungs. Weight. Height. It was like watching some well rehearsed dance. Each movement in sync. Smooth and reassuring.

He finished his exam and smiled at Edmund.

D: Listen. I want you to go out and ask for Betty. She will let you and your brother pick something from the treasure chest. Go on Edmund.
(He lifted Edmund from the table and ruffled his hair)

D: Oh-Edmund, before you leave. I am sorry. I just needed to hear you tell me everything twice. I believe you. I believe everything you told me.
(Edmund gave a small smile, said thanks and left)

The doctor turned to us and before we were even able to speak he said;

D: I do believe him. This is beyond what I do. I need you to take him to a Neurologist. See what he says, then we go on from there.

I remember feeling flushed when he said 'neurologist' I remember wanting, for one moment, It all to be that my son had actually lied to me. I thought how much easier things would have been if only Edmund had lied.

Sadly, Oh so very, very sadly. I was right.

Facts

"The reality is that, at odds of 1 in 10 million, you are as likely to be struck by lightning as to be killed by a stranger who is mentally ill (Homicide Inquiries: What Sense Do They Make?, Psychiatric Bulletin, Szmukler G, 2000)"

One of the most damaging aspects about Mental Illness are the sigmas attached to it.

Most, if not all, people believe that the mentally ill are severely violent and, that they commit horrible crimes as a result of this.

While Edmund was violent, he was the exception.

Here are some very important facts that everyone should know about mental illness and violence--I have provided links for each fact.

Some of these links are to published works that are impossible to get online. If you want a paper published by the Lancet or other Peer-Reviewed publication go to your local library.

Fact #1. The discrimination and stigma associated with mental illnesses largely stem from the link between mental illness and violence in the minds of the general public:

According to the U. S. Surgeon General the belief that persons with mental illness are dangerous is a significant factor in the development of stigma and discrimination. The effects of stigma and discrimination are profound. The New Freedom Commission on Mental Health found that, “Stigma leads others to avoid living, socializing, or working with, renting to, or employing people with mental disorders - especially severe disorders, such as schizophrenia. It leads to low self-esteem, isolation, and hopelessness. It deters the public from seeking and wanting to pay for care. Responding to stigma, people with mental health problems internalize public attitudes and become so embarrassed or ashamed that they often conceal symptoms and fail to seek treatment.”

Fact #2: False information about the link between violence and mental illness is often promoted by the entertainment and news media.

Mental Health America, (formerly the National Mental Health Association) reported that, according to a survey for the Screen Actors’ Guild, characters in prime time television portrayed as having a mental illness are depicted as the most dangerous of all demographic groups: 60 percent were shown to be involved in crime or violence. Also most news accounts portray people with mental illness as dangerous. The vast majority of news stories on mental illness either focus on other negative characteristics related to people with the disorder (e.g., unpredictability and unsociability) or on medical treatments. Notably absent are positive stories that highlight recovery of many persons with even the most serious of mental illnesses . Inaccurate and stereotypical representations of mental illness also exist in other mass media, such as films, music, novels and cartoons.

Fact #3: The mentally ill are more likely to be victims of violent crime than perpertrators.

Fewer than 4% of homicides, rapes and other violent crimes are committed by those with a mental illness. However, those suffering from a mental illness are more than 8 times more likely to be attacked or killed by others. People living with a mental illness are more likely to be victims of violence, especially self-harm. It has been calculated that the lifetime risk of someone with an illness such as schizophrenia seriously harming or killing another person is just .005%, while the risk of that person killing themselves is nearly 10%. Finally, and most importantly, The majority of people with mental illness, around 90%, have no history of violence

As you can see, the research shows that most people with a mental illness - even most of those with a psychotic illness - are unlikely to show violent behaviour toward others. As I said, Edmund's violent outbursts were the exception. It is time to start changing these damaging stigmas about the mentally ill. Doing so will not only improve the lives of those with this disease but their friends, family and society as a whole.

Clueless parents, Stereotypes and a Child in Trouble

Today, The Oprah Show featured a family whose daughter was profiled as having 'Schizophrenia.' I was completely appalled by this program. Oprah Winfrey has, with one hour-long program destroyed any hope of honest discussion about mental illness and, how to deal with it.

I taped the program and, watched it three times. I paid careful attention to the parents and children.

After having a child with paranoid schizophrenia, volunteering at wards, interacting with parents and doctors and, talking with the staff at the hospital my child stayed at everyone has come to the same conclusion; this child does not have schizophrenia.

This child is a victim of overmedication, poor impulse control and parents who indulge the fantasies of their daughter.

Very important points that must be made.

1) No one under the age should be prescribed Clozaril. Clozaril has never been tested on children. Clorazil can cause seizures, a fatal blood/bone marrow disorder called agranulocytosis and cardiac arrest. Clozaril is rarely prescribed in even the most severe adult cases of schizophrenia.

2) The parents testified how they would try and make "..the hallucinations happy..." one of the most important aspects of dealing with an individual is to not indulge their psychosis. It is the first thing all trained and honest doctors will tell you. To indulge, speak to and accept a hallucination is to exasperate the disease. It can make an individual more violent, more prone to "breaks" and less able to accept reality.

3) The parents testified how they "...never got a break..." While schizophrenia can be a daily struggle, the hallucinations are never a daily occurrence. Schizophrenia can, however, be seen daily by anti-social behavior and lack of trust.

4) I was mortified by the parents decision to split their living arrangements. A seven year old child of that size and weight can easily be monitored and controlled. It takes time and effort but it is possible. Edmund was violent and experienced hallucinations....but my husband and I were able to care for him....and three other children until he reached 13. At that age he was very tall and very strong.

This entire program sickened me. Two incidents stand out. The first is the image of the father brushing the seven-year-olds teeth. The child got frustrated, stamped off and the father simply shrugged his shoulders. Seriously??? This is not the behavior of a child with schizophrenia that was the behavior of a child who did not get their way...and was angry by it. The second incident that stood out was when the child was looking for "mini-muffins" she started to cry when she was told none were avalible. Once again, she stamped off, arms crossed a scowl on her face. What did the parent do? Did the parent do what any normal parent do and tell the child that that behavior was not right and that they would have to pick something else? No. The parent said "Okay honey, I'll go get some right now."

None of what I saw. None of what the professionals I was in contact with saw(I was so angry I called people right after it aired) a child with schizophrenia.

What did we see?

1) A child who knows the results of their actions. I act this way, mommy and daddy get this, do this, and feel this for me.

2) A child who is wildly overmedicated. The father testified how he took one of the medications and it "...made me stumble around and want to go to sleep..." Hmmm. Well if that father even so much as googled the reactions of medications on children he would find that; medications for adults have the reverse affect on children. A medication designed to keep an adult alert and awake will, in most cases, make a child very tired and unfocused. A medication designed to make an adult passive and calm will almost always make a child wired.

Another thing that bothered me immensely was the fact that the child was aware that her hallucinations were not real. Was aware that what she saw was not seen by others. This was the proverbial 'nail in the coffin' to me, and anyone who has truly experienced schizophrenia.

This is the definition of schizophrenia by the Diagnostic and Statistical Manual of Mental Disorders. This is a highly researched publication it has helped millions of individuals and doctors. It is the number one source in the world.:

schizophrenia, is a state of mental impairment marked by hallucinations, which are disturbances of sensory perception, and/or delusions, which are false yet strongly held personal beliefs that result from an inability to separate real from unreal experiences. Less obvious symptoms, such as social isolation or withdrawal, or unusual speech, thinking, or behavior, may precede, be seen along with, or follow the psychotic

symptoms.

If someone is too be seen as truly schizophrenic they will always follow the above. The hallucinations will vary, the intensity will vary, speech, actions and behavior will vary. But NO schizophrenic is able to make the distinction between reality and delusion.

A schizophrenic can have "breaks". Edmund had long periods where his hallucinations never bothered him, where he was able to live a somewhat normal life.

The child profiled on Oprah, was not a victim of schizophrenia. She was a victim of; parents who overindulged her, were unable to deal with her tantrums and who were completely unable to control her.

The parents stated that they were "worried she might hurt herself." If you watched carefully, the child at one point, when she was told she couldn't watch t.v. said "well if you don't let me watch t.v. then I'm going to hurt myself." Then she screamed and threw herself to the floor.

The parents, again, overreacted. They consoled the child. Telling her not to hurt herself and "...its okay you can watch tv!" Huh!! Lets see. A seven year old child discovers that if they threaten to harm themselves, then they will get what they want! Is that schizophrenia? No, its a child who has learned to control her parents.

This program was devastating to me. Any parent of a bratty, misbehaved child may look at their son or daughter differently.

Most destructive however, is the fact that real schizophrenia was never profiled in this program. Schizophrenia is a horrible disease. I makes children and adults terrified and paranoid. It makes daily life a frightening struggle. It is a disease that can destroy futures and even pasts. Everyone is a victim.

Oprah Winfry should study her subjects before she airs them. In one program she has obliterated any truths about this disease. She has highlighted stereotypes.

The child profiled does need help. She needs to learn control. She needs to be taught not to manipulate. And, most importantly she needs to learn that she does not have a devestating disease that would affect her entire life. I shutter to think what her future holds. Parents who live under an umbrella of falshood are far more dangerous than any drug, or disease this child could ever have.

Please, please. If you know of anyone who has been duped by this program. Lead them to the American Psychological Association This is a comprehensive, honest and informative site that will give you the real information about mental illness.