Bitter-Sweet Sixteen

On the night you were born
The moon smiled with such wonder
That the stars peeked in to see you
And the night wind whispered,
“Life will never be the same.”

-Nancy Tillman-
On the night you were born

 Exactly sixteen years ago this Friday was one of the worst snow/ice storms to hit Portland. Or so I’m told. To be honest, I didn’t really notice – nor did I care.  You see, sixteen years ago I was bringing a very precious new life into the world.  After twenty five hours of intense labor, I finally held in my arms – the person I had been waiting to meet for nine long months – my son, Nikolai Austin.

Weighing 7lbs, 10oz – he was the most beautiful baby I had ever seen.  When the doctor placed him on my chest, it was as if time stood still for us. There was nothing in the world more important than that perfect moment.

As I laid there holding this little miracle, he opened his eyes, looked at me, and with his tiny hand – grabbed my finger. I knew then, my life was forever changed.

. . .

They say there is no bond stronger than that between a Mother and child.  It’s true.  I never knew that I could love someone so much… unconditionally.  I read somewhere that to have a child is to have your heart walk about outside of your body.  It’s truly the most amazing, wonderful, and terrifying experience of my life.  -  And this journey is far from over.

 Nick was the happiest baby I’ve ever seen.  -  He was always laughing or smiling, and every day was filled with playing, eating, and napping.  Hey what’s not to be happy about with that?  Even though his childhood has been anything but perfect – even traumatic at times – he still beams with a genuine happiness unlike anyone I know.

 . . .

 It hit me a few weeks ago; I mean really hit me square in the face, when I was telling someone that my son was turning sixteen.  ‘Sixteen?’  I thought to myself… ‘How in the hell did that happen?  It’s too soon! It can’t be!’   Yeah… I had panicked momentarily at the realization that not only was he about to be old enough to drive, (God help us all!) but I was old enough to have a sixteen year old son!

 I keep thinking time has gone by way too fast.  When exactly did my baby go from asleep in my arms, to towering over me?  It was like I blinked, and he grew up.  I feel almost robbed of that time.  (If that makes any sense.)  I suppose a small part of me would like to go back and do it again.  I can tell you this – I would not take one single moment for granted.  I would cherish every hug, every ‘I love you Mommy’; I wouldn’t roll my eyes when asked to read another story.  I would’ve listened more carefully when they wanted to ramble on and on about their favorite toy or video game, and most importantly, I wouldn’t have wished for them to grow up, hoping that things might be easier.  I know I can’t go back and do that – but what I can do, is live in each moment, absorb it, take it all in, and simply try to be the best Mom that I can be.

I only hope they know how much I love them.  – That I have shown them how important they are to me.  They are my heart… the single most important thing in my life – they are my life. 

Having children has made me want to be a better person – to give my kids everything they deserve, to be someone they look up to.  I know I’ve made mistakes, what parent hasn’t?  But together, as a family, we continue to grow, learn, and love.  No matter what.

Copyright © Victoria Lukenovich 2012

 . . .

 For Nikolai~

 Maybe one day you will read this, so I want to wish you here, a very happy birthday.  I know turning sixteen is a big deal.  In fact, it feels like just yesterday I was celebrating my own sweet sixteen.  I want you to know – more than anything – how very proud I am of you.  You have come so far, and I can see you’re turning into a fine young man, right before my eyes.  I know we’ve been through hell and back again – But guess what? We made it!  You have shown to yourself and to me, that you have the strength to overcome any obstacle in your path – even if that obstacle is sometimes your own mind. 

 You continue to amaze me everyday Nicky!  And I believe you have taught me just as much as I’ve taught you.  Having you was the best thing I ever did.  I love you with all my heart! 

So here’s to you!  Enjoy every second of your birthday, and every other day too.

 All my love, on this journey we call life ~ I will always be here for you.

Love, Mom

 

 

Untitled

“I would hurl words into this darkness and wait for an echo, and if an echo sounded, no matter how faintly, I would send other words to tell, to march, to fight, to create a sense of hunger for life that gnaws in us all.”  ~Richard Wright

. . .

I miss writing. I miss it terribly. I have so much to say…
Soon. I will write again.

The Theory Of Evolution

A Brief Note

Once before, after her surgery nearly a year ago, Victoria asked me to write a simple post for the sake of checking in, and keeping in touch.  Because her hands are causing her distress, she asked once again, and I am more than happy to oblige.  Victoria will not be absent forever.  She is hoping that steroid injections and acupuncture will ease the pain in her hands, and will undoubtedly begin posting as soon as possible.  In the interim, however, it is an honor to post to Walking On Eggshells as a guest.

. . . . .

 

 “Success is never final, failure is never fatal, it is courage that counts.” 

{Winston Churchill}

The weather here has been so mild it’s difficult to believe that this week is the end of the school year for many, and the official start of Summer is just next week.  As Victoria and I gaze at the annual challenge of ‘Summer Vacation’ glaring back at us, it occurs to me, a number of things have changed in recent weeks.

Victoria has received a promotion at work. That in itself is a well deserved change for good.  At the same time, it opens the gates to smaller transitions in our family.  Three days a week, when Nick comes home from school, he sees me instead of Victoria.  So far, he has adjusted extremely well.  He likes to clean his room in the afternoon, before his Mum gets home, so he can surprise her.  He also has taken to showcasing and proving his trustworthy abilities.  He takes short walks to McDonald’s, killing some time independently with a soda or snack.  Once upon a time, these independent outings lasted no longer than five or 10 minutes.  Last week however, he kept his own company for as long as 30 minutes one day, and an hour another.

Undoubtedly, somewhere in his own mind, there are dots that have begun to connect.  These and other subtleties indicate that he is now trying to actively be his own man. Trustworthy, and capable of making us proud. A desire which he struggled to clearly express with words not so long ago.

However, with the successes, there are also struggles.  The struggles are nothing new.  Most of the time they seem to rise from a sort of ‘wordy gridlock’, where he cannot find a way to verbally express what he is feeling, and we—the adults who are supposed to be wiser, not merely older—cannot find words to explain why the answer to a request is “no”, or why he is facing a consequence as the result of inappropriate actions.

As always—in these moments—who knows what might happen.

While neither Victoria nor I were thrilled to stop the decrease of his medication, his frustrated moments have not been as violent as they recently were, a month or so ago.  Nor do I see a complete lack of personality. . .

Yesterday, for instance, Nick and I took a two or three mile walk.  We came to a stretch which used to terrify him: the overpass above the freeway. . .  It made him dizzy.  So dizzy that once upon a time, he could only make it across by fiercely clutching onto Victoria, and—more or less—being dragged.  Gradually, he would let go.  But then he could only negotiate that overpass by running across; getting beyond it as quickly as possible.  Yesterday he walked with ease.  He even paused in the middle of the bridge admiring the whirring traffic below, as he spit down at the cars passing beneath us.

It is rude to spit.  Very rude to spit at cars!  But Nick accomplished something there.  Despite his medication, and despite his fears, he stood in a place that once scared him and conquered it!  His personality came shining through in those drops of spit; not the personality of a medicated boy, or a Schizophrenic boy.  Just an amused, and very boyish boy.

 

Some changes are big, and some are small.  We take each day one at a time, prepared for the worst, while we hope for the best, testing the theory of evolution.

©  Jeffrey Puukka, 2011 for Walking On Eggshells

Head Full Of Doubt

There was a dream and one day I could see it
Like a bird in a cage I broke in and demanded that somebody free it
And there was a kid with a head full of doubt
So I’ll scream til I die and the last of those bad thoughts are finally out.
-The Avett Brothers

Good Sunday morning!

I regret that I have not been writing as much or as often as I would like to. I have been fighting with a ‘ripped tendon’ in my right hand for some time now, which obviously makes typing, writing, or any other task that requires the use of my hands extremely difficult, not to mention painful.

So today I thought I would share a song.  Every time I hear it, it reminds me of my son. The struggles he’s gone through – the struggles we have all gone through – and the challenges yet to come. It also reminds me of Nick’s mind – as the song says, is like a bird in a cage, waiting and wanting to be free…

 

Copyright © Victoria Lukenovich, 2011

There’s a darkness upon me that’s flooded in light
In the fine print they tell me what’s wrong and what’s right
And it comes in black and it comes in white
And I’m frightened by those that don’t see it

When nothing is owed or deserved or expected
And your life doesn’t change by the man that’s elected
If you’re loved by someone, you’re never rejected
Decide what to be and go be it

There was a dream and one day I could see it
Like a bird in a cage I broke in and demanded that somebody free it
And there was a kid with a head full of doubt
So I’ll scream til I die and the last of those bad thoughts are finally out

There’s a darkness upon you that’s flooded in light
And in the fine print they tell you what’s wrong and what’s right
And it flies by day and it flies by night
And I’m frightened by those that don’t see it

There was a dream and one day I could see it
Like a bird in a cage I broke in and demanded that somebody free it
And there was a kid with a head full of doubt
So I’ll scream til I die and the last of those bad thoughts are finally out

There was a dream and one day I could see it
Like a bird in a cage I broke in and demanded that somebody free it
And there was a kid with a head full of doubt
So I’ll scream til I die and the last of those bad thoughts are finally out

There’s a darkness upon me that’s flooded in light
In the fine print they tell me what’s wrong and what’s right
There’s a darkness upon me that’s flooded in light
And I’m frightened by those that don’t see it 

 

Revelations

Monsters Are Real. They Live Inside Us, And Sometimes, They Win.

To say the past week has been rough is perhaps the understatement of the century. After Nick’s ‘arrest’ and trip to the hospital last Wednesday, we have all been slightly ‘on edge’ waiting… For what, – I don’t know. Thankfully, he managed to pull it together a bit and has ‘seemed’ more or less okay. Bedtime has been going a little easier, and instead of having the nightly bedtime battle of flying hot wheels & other toys, he has been falling asleep.

Until tonight…

This afternoon I received a call from the school counselor saying that Nick had been ‘off’ all day. He wasn’t in trouble, and he hadn’t done anything wrong, but she was extremely concerned because, as she put it, “he does not seem to be emotionally/mentally stable”. Now if anyone else had said that to me, I wouldn’t think anything of it – after all, Nick does appear to be unstable to people who do not know him. However, this came from a woman who sees him nearly everyday, and knows him – his moods, behavior, etc…

His Skills trainer/therapist brought him home from school and said he was fine. A few minutes after he left he called with some shocking information. He explained he didn’t want to discuss it in front of Nick because it would probably upset him… Apparently while they were out Nick was going on and on (very calmly – almost as if he were talking to himself) about thoughts he’s been having. The thoughts? Well, there’s no easy way to put it, except like this: He wants to kill me. He admitted to his therapist that he has these thoughts quite a bit – “like once a week”. And also said: “I don’t usually do anything, except for last week. I tried to kill mom then…I tried to break her neck.”

I’m speechless. I want to scream! I want to cry. Hell, I want do SOMETHING! I will admit – and only here on this blog, that yes, I am a little scared. I can NEVER let Nick know that though.
I spoke with his therapist for a while on the phone and then made a call to his doctor. When I explained what I had found out, he seemed genuinely concerned. He said that he understands my reasons for trying to avoid hospitalization, but that this is serious – that it sounds like a psychotic breakdown. Also, if Nick is going to be in the home that some serious ‘safety planning’ needs to be implemented – like limiting or eliminating my time alone with him… He also said that right now, these are only thoughts he’s having… scary thoughts, but homicidal and violent thoughts nonetheless. However, he believes if Nick continues on like last week when the police came, that it could be a different story altogether. I agree.

 

… And, I caved.

While I was on the phone with his doctor, the subject of his meds was brought up. He thinks that right now decreasing his Clozapine is a bad idea… That maybe going back up on the bedtime dose, just by 25mg. will help. I told him that I still want to take him off his meds, but that if we have to do it slower, I’d be okay with that. In the end, I ended up agreeing to increase his medication. I don’t know why – but I feel like I failed. I wanted so badly for him to be off that damned drug! But I also have to think about everyone’s safety… That, I suppose comes first.

Bedtime was not easy tonight either. Thankfully it didn’t escalate to the point of having to call 911 again.
While he was lying down, screeching and carrying on and making inaudible noises – he lowered his voice, and in a very maniacal tone said: “Everyone’s gonna die”. He let out a quiet, but creepy laugh, and then went on to sing it over and over again… It made the hairs on the back of my neck stand up! After an hour of carrying on like this, he finally fell asleep.

. . .

Now, as I sit here listening to him snore, the realization of it all hits me a little harder. I keep wondering, how long can I keep him out of the hospital? How long is it going to take for him to ‘bounce back’? IS he going to ‘bounce back’? Does he really want to hurt me, and if so, why? These are only a few of the thousands of thoughts racing through my mind. I don’t even know how to put into words what I am feeling right now. I am at a complete loss…
All I can do, as I said before, is to take it as it comes – day to day… And that’s what I’m going to keep on doing.

~Goodnight~

Copyright © Victoria Lukenovich, 2011

 

A Vicious Cycle

Remember my last entry?  I titled it: “…And Sometimes Things Go Right”.  Well, that may have been true then, but things can also go wrong.

Last night was one of those nights where things went horribly, horribly wrong. It was so bad that Nick was arrested. If that’s not horrible, well, I don’t know what is!

It all started about a week ago. Around bedtime Nick has been getting more and more hyper, and quite impulsive. And in his case, it’s a perfect recipe for disaster!

During the day I have noticed drastic improvement – he’s able to communicate better, he’s more focused, happy, and seems to be ‘all there’. But something seems to be happening in the evening, and Nick is unraveling very quickly. His newest ‘game’ is throwing toys {mainly hot-wheels} around his room – hitting the walls… Last Sunday his little brother Kyle was hit with one those flying cars in the face. The result was a huge black eye. Monday and Tuesday night were no picnic either, but luckily no one was hurt. Last night was a different story though. As he was going to bed I could tell immediately it was going to another rough night. I tucked both of the boys in and went to sit on the couch where I would be able to see directly into his room. The next thing I knew a hand full of hot wheels came flying out and hit me. That was enough! I was not going to put up with another night like the previous ones! I walked into his room – picked up his bucket of cars by his bed and took them all out. When I went to take the ones he still had in his hand, that’s when things went from bad to dangerous. As I bent down he somehow managed to wrap his legs around my neck, flipping me over. I heard my neck snap so loud that I was scared something broke! After he flipped me, I tried to get up to restrain him, only instead he started kicking me in the head, back, and chest, completely knocking the wind out of me. The next thing I knew Jeff was on the phone with 911, and police were on the way.

Nick of course was freaking out that the police were called, and at one point tried to jump out his 2^nd floor bedroom window.

When the police arrived, Nick was hiding under his covers but soon became quite argumentative, rude, and threatening to the officers. After a few minutes one of the officers unlocked his tazer gun from its holster and started to pull it out – telling Nick he would be “hurt” if threw one more thing at them. Thank God he managed to pull it together when he did! I honestly don’t think he realizes how close he came to being shot with thousands of volts of electricity!

After about thirty minutes the police informed me that he was being taken into custody for assault, but because of his ‘mental state’ he would be going to the hospital for an evaluation.

Nick understood why he was going after he calmed down a bit. He put on his shoes and we walked outside to the ambulance that was waiting for him.

To The Hospital – And Beyond….

. . .

I won’t go into all the details of the hospital visit, because really, there’s nothing to say. They stuck us in a tiny room in the ER (not a psych room, but a regular ER exam room)

And we sat there for hours, only seeing a nurse once, and talking very briefly to the hospital’s social worker. Finally after six long hours, the doctor poked her head in, listened to his lungs and heart, and said he seemed okay to go home. Which left me wondering – why in the hell were we there in the first place? Of course I didn’t want him admitted, but I would have appreciated it if someone had actually talked to him…
So at one in the morning, we were headed home.

Today has had its challenges as well. It was as if last night never really ended, and for the first time in ages – I seriously felt like I was walking on eggshells around him…doing everything in my power to avoid another meltdown.

Immediately after school, Nick, his therapist, Jeff, and myself all piled into the car and took him to see his psychiatrist. Needless to say that didn’t go so well either. I knew that the first time something went wrong the first response was going to be “increase his medication”. And sure enough, that’s exactly what happened today. I said no. Foolish of me? Maybe. But I don’t want to go ‘backwards’… at least not yet. Instead I can give him something to help him sleep, since most of his problems are in the evening.

Luckily, he fell asleep tonight without any blow-ups! I don’t think I would have had the energy to handle another night like yesterday.

For now I am just taking things slowly – moment to moment, one day at a time, and hoping that Nick has what it takes to turn this around. As he found out last night, I can only do so much to help him. I will do everything I can, but he needs to as well.

 ~Goodnight~

Copyright © Victoria Lukenovich 2011

…And Sometimes Things Go Right

“Reach For The Moon. Even If You Miss, You Will Land Among The Stars.”

. . .

A brief update before bed…

It has been an eventful, exciting, and FUN week! Honestly, I never thought I would be writing those words here – but I do so with great pride! What made it so great, you ask? Where do I begin…?

For starters, Nick had respite this past weekend, and quite unexpectedly too as we were told that no one was available! And trust me, after a week of strep throat, and two weeks of spring break, I was definitely ready for a break.  On Saturday, Jeff and I went out and took advantage of a rare opportunity to go window shopping, browse bookstores, antique shops, etc… to all the places my fifteen year old would find dreadfully boring. As we were walking down the street discussing where to eat, a little tattoo shop caught my eye. Originally I just wanted to go in to look at the art, and ask how much they charged… You see where this is going, don’t you? Yes, I came out with a brand new tattoo! Aside from the excruciating pain of the needles going in and out of my skin like a sewing machine on steroids, I absolutely love what I got!

A simple infinity symbol - For my kids... I love them to Infinity and back again!

It is feeling much better now, and I am happy that I finally decided to get it done!

. . .

After the weekend ended, it was time to come back to reality, which has been going unusually well. (I seriously hope I don’t jinx myself by writing that!)

Nick was actually happy to be going back to school, and I was more than happy to have him go back to school!

And so my week began…

But wait, there’s more!

I – after months and months of searching, got a job! Not just any job either… The PERFECT job! It’s at a small boutique/art gallery. What’s even greater is that it’s only two blocks from my house, and they are extremely flexible with my schedule – allowing me to be home for the kids, doctor appointments, etc…

I can’t tell you how wonderful it feels to have something that is just for me. Even if it’s a job…it’s MY job!

So, that’s what I’ve been up to recently… And I am enjoying every minute of it!

~Goodnight~

Copyright © 2011 Victoria Lukenovich

Some Facts For Thought

Earlier today I came across information regarding anti-psychotic medication and their side effects.  As I mentioned a few days ago, my son is currently withdrawing from Clozapine, which he has taken every day for the past 3 years.  I found the information to be very factual, honest, and yet quite alarming. I had always known some of the risks of taking medications such as this, but seeing it all compiled together was a bit of a shock.

Now, the last thing I intend to do is debate the ‘ethics’ of psychiatric meds.  The decision I made to take Nick off of his medication came after many years of careful research, reading, talking with professionals, finding alternative treatments, and weighing the pros and cons with the risks and benefits.  I also don’t want imply in any way that all medication is bad or dangerous. I know for a fact that for some people, it can be a life-saver in treating and relieving the symptoms of mental illness.  But for us … for my son, the time has come to say ‘enough is enough’.

Below is an accurate and updated list of side effects associated with taking anti psychotic medication. The ones that are in red are side effects that my son is currently experiencing, or has in the past.

Side Effects Of Anti-Psychotic Medication Include:

• Agranulocytosis* (Dangerously low white blood cell count)
• Abnormal gait (manner of walking)
• Agitation
• Akathisia*
• Anxiety
• Birth defects
• Blood disorders
• Blood-sugar abnormalities
• Blurred vision
• Breast milk production
• Cardiac arrest
• Changes in behavior
• Chest pain
• Confusion
• Constipation
• Death from liver failure
• Decreased sexual interest or ability
• Depression
• Diabetes
• Diarrhea
• Difficulty breathing, swallowing or fast breathing
• Difficulty falling asleep or staying asleep
• Difficulty urinating or loss of bladder control
• Dizziness
• Dreaming more than usual
• Drowsiness
• Dry mouth
• Dry or discolored skin
• Excess sweating
• Excessive weight gain
• Extreme inner anxiety
• Eye pain or discoloration
• Fainting
• Fast, irregular, or pounding heartbeat
• Fatal blood clots
• Fever
• Fine worm-like tongue movements
• Flu-like symptoms
• Headache
• Heart arrhythmia
• Heart failure
• Heart palpitation
• Heartburn
• Heat stroke
• Hemorrhage
• High fever
• Hives
• Hostility
• Hyperglycemia (abnormally high blood sugar)
• Hypoglycemia (abnormally low blood sugar)
• Impotence
• Increased appetite
• Increased salivation
• Indigestion
• Insomnia
• Involuntary movements
• Itching
• Jaw, neck, and back muscle spasms
• Joint pain
• Lack of energy
• Light-headedness
• Loss of appetite
• Manic reaction
• Mood changes
• Muscle or joint stiffness, pain, or weakness
• Muscle twitching
• Myocarditis*
• Nausea
• Nervousness
• Neuroleptic Malignant Syndrome*
• Nightmares
• Pacing
• Pain in arms, legs, back, or joints
• Pain in the upper right part of the stomach
• Painful erection that lasts for hours
• Painful skin rashes
• Pancreatitis (inflammation of pancreas, a gland near the stomach that helps digestion)
• Poor concentration
• Restlessness or pacing
• Seizures or convulsions
• Sexual dysfunction
• Shakiness
• Shaking hands that you cannot control
• Sleepiness
• Slow or difficult speech
• Slow, jerky movements
• Sore throat
• Spasms
• Sudden Death
• Suicidal thoughts
• Swelling of the arms, hands, feet, ankles, or lower legs
• Tachycardia (heart irregularity)
• Tardive Dyskinesia*
• Tremors
• Unusual behavior
• Unusual bleeding or bruising
• Unusual tiredness
• Violence
• Vomiting
• Weakness
• Weight gain
• Yellowing of the skin or eyes

{*Akathisia: Meaning “without” and kathisia, meaning “sitting,” an inability to keep still. Patients pace about uncontrollably. The side effect has been linked to assaultive, violent behavior.}

{*Neuroleptic malignant syndrome: A potentially fatal toxic reaction where patients break into fevers and become confused, agitated and extremely rigid. An estimated 100,000 Americans have died from it after taking the older antipsychotics.}

{*Tardive Dyskinesia: Tardive, meaning “late” and dyskinesia meaning, “abnormal movement of muscles.” Tardive Dyskinesia is a permanent impairment of the power of voluntary movement of the lips, tongue, jaw, fingers, toes and other body parts.}

{*Agranulocytosis: Agranulocytosis means a failure of the bone marrow to make enough white blood cells (neutrophils). Bone marrow is the soft tissue inside bones that helps form blood cells. Agranulocytosis is one cause of a person not having enough of a specific type of white blood cells, called neutrophils or granulocytes. A low neutrophil count (neutropenia) may also occur when white blood cells are destroyed faster than they can be produced.}

{*Myocarditits: An inflammation of a muscle in the heart. Myocarditis may cause chest pain, heart failure, or even sudden death. The risk is greatest but not limited to the first month of Clozapine therapy.}

For further information regarding psychiatric medications, visit: http://www.pdrhealth.com -  Physicians’ Desk Reference Online

 

Copyright © 2011, Victoria Lukenovich

 

 

Change Is Good, Right?

For the past couple of days I have have been playing around with the layout and theme of my blog.  I decided it was time for a little change – a fresh look, and a fresh start.
I’m still not quite sure if I like how it looks, so don’t be too surprised if it changes several more times over the next few days.  If anyone wants to give me some feedback or advice, I’d love to know what your thoughts are!
Thank you!

Copyright© 2011 Victoria Lukenovich

The Process of Progress

It is in all of us to defy expectations – To go into the world and to be brave.  And to want, need, and hunger for adventures. To embrace change, take chances and risks so that we may breathe and know what it is to be free.

. . .

I have been meaning to update my blog for quite some time, and now that I have exciting news to share; I thought this would be the perfect moment for a brief update.  ~

. . .

After surviving (and enjoying) the holidays, a new year ahead of us, and my boy turning fifteen, I started thinking it was time for some changes. I have been reflecting for some time now about this family… Where we are now, where we’ve been, and where we’re headed. My mind always turns to Nick and his never-ending list of ‘issues’ and medications. Every time I think about it, my heart breaks for him.

For as long as I can remember, Nick has been on one medication or another. This ‘downward spiral’ started when he was only five years old. The list of psychiatric drugs he’s been prescribed over the past ten years is immense! What’s worse are the side effects and allergic reactions he’s had to deal with.

. . .

 

I’ve written here before about my frustrations with this issue… with medications in general… and not until recently did I feel there was anything I could do change it.

I realized I need to do what is right…what’s best for my son. I want him to have quality of life, to be happy, to be able to go outside on a sunny day and play with the other kids. Right now his medications numb him to the point where he can barely move. What kind of life is that?!?

I truly believe one hundred percent, that his current medications are causing much more harm than good. He has been gradually regressing in all areas of his life.  The regression is even affecting his academics. I recently received a report from his school which outlined his current level in all subjects. Over the past few years he has dropped at least three grade levels. In reading {where he used to excel}, he is now at a 3^rd grade level! This does not come from a lack of effort on his part either… he really does try. He wants to do well, and as he told me recently – he ‘wants to go to a regular school, with regular kids’.

But unless something changes, I don’t see that happening.

At his doctor appointment in early February, I voiced all of my concerns. For the first time I held nothing back. I let the doctor know exactly how I felt. I even brought in school reports from the past year. I ended with explaining that if I had any regrets in my life – it would be the day I agreed to put him on meds when he was so little. If I could go back in time I would have ripped up that very first prescription, walked out the door, and never looked back. However, all I can do is go from here, and try to undo the damage that has been caused.

I told him I wanted to take him off all of his medications, and even though it will be a long and slow process, I feel it would be worth it in the long run. After all, no doctor {since he was 4 or 5} has ever examined him, diagnosed him, or treated an un-medicated child. And now we’re to the point where we are treating side effects, not a disease – but truly horrific side-effects of all the medications he’s currently taking! That is a huge problem!

Surprisingly, his psychiatrist agreed with everything I said.  He explained the pros and cons of doing this, and told me the potential risks, but agreed that the possible benefits out-weigh the risks, and that perhaps trying to detox him while he’s currently ‘stable’ might be the best option. The next decision we had to make was which drug to take away first. My first instinct was to get rid of the high dose of Lithium. Nick is having a hard time with the side-effects that come with this drug – {mainly night-time ‘accidents’, and having to wear a pull-up every night.} The doctor suggested taking away the Clozapine first. His reason was that it’s the drug he’s been on the longest, and is causing the most serious side-effects {involuntary ticks/movements – which can lead to Tardive Dyskinesia}. *Good point.* We wrote up a plan to start weaning him off the Clozapine, decreasing his dose every two weeks until he is completely off of it – then we will move on and repeat process with the next medication until he is off
E V E R Y  S I N G L E   D R U G!

I left his office that day feeling better than I had felt in a long time. I felt empowered… happy that for once, someone actually listened to my concerns, and agreed to help!  I wanted to scream it to the world!  I have never given up on my son, but I was starting to lose hope that this could actually happen!

Even though I was thrilled that we had a plan, I must admit that once I saw it in writing, I became a little bit nervous… it was ‘real’. I suppose that’s normal though. After all, I’m not a fan of change… and this kind of change is BIG!  I keep reminding myself, this is what I want, and more importantly, it’s what my son wants!  Nick is absolutely thrilled. When I told him about the plan, he gave me a huge hug and thanked me over and over again.  He tells me constantly how he hates the way his meds make him feel, {I don’t blame him} and is so excited about these changes.

Now, I’m not saying that this is going to go smoothly without any complications.  There may be some problems. There is also a chance he could have a complete psychotic break.  And it may end up that he does in fact need medication. And if that’s the case, it’s okay. At least we tried. I am willing to accept these possibilities if it means my son will have a chance at a future…A life.  I refuse to always wonder: ‘What if he would’ve been okay’. Or, ‘what if he doesn’t really have schizophrenia but instead, drug-induced psychoses?’ … What if?

He could come out of this and be ‘better’!  I could actually get my son back… and he could get his mind back!  How wonderful would that be!

We officially started the decrease on February 13^th. And have continued lowering the dose of Clozapine every two weeks since.  So far, he has done amazing with no adverse reactions that can sometimes occur when going off a powerful anti-psychotic drug such as this one. Yes, he’s had his moments, and little mini ‘melt-downs’ here and there, but nothing too significant or serious. If anything, I would say he seems happier. I can only hope that it continues to be a smooth transition!

. . .

Albert Einstein once said the true definition of insanity was doing the same thing over and over again expecting a different result.  Quite a profound statement if you ask me!

I cannot sit back and accept this ‘insanity’ as reality any longer. We have chosen to take a different path… to try something new – I don’t know how well any of this will turn out, but such is life… Life is full of disappointments – trust me, I know this all too well… but I also believe in the possibility of miracles! One thing I do know for certain – life is guaranteed to be one hell of a ride!

I’m holding on tight!

Copyright © 2011 Victoria Lukenovich