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
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 3rd 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 13th. 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
What is the meaning of life? A simple question; one that tended to close in on one with years. The great revelation had never come. The great revelation perhaps never did come. Instead there were little daily miracles, illuminations, matches struck unexpectedly in the dark.
- Virginia Woolf
(To The Lighthouse)
I think when someone stops writing, one of two things has probably happened. Either the subject is no longer applicable and they have moved on, or certain circumstances have prevented it. For me – it is the second reason.
Over the past few months or so, life has thrown me slightly off-track. If you have read my previous entry, then you can surely understand that I’ve had my hands full.
I had lost my rhythm, my routine, and for a while I worried I was losing my mind as well!
I wanted to write, I wanted to vent…to get it all out… But by the end of the day I felt there wasn’t enough of me left. I was just too tired for anything but sleep.
Not having the time or energy was becoming more and more frustrating!
In fact, I had actually decided a while back to ‘shut my blog down’ all together, and delete everything. Yeah, I was that frustrated…
Instead, I just tried to put the thought of it out of my mind… That is, until I started receiving emails from several people – mostly from total strangers… asking me things like: “Why haven’t you written?” “Is everything alright?” And so on… It actually brought tears to my eyes to read these messages.
Here I was, having my own little ‘pity party’, consumed by my own stress and grief, thinking that no one really gives a rip what I say or if I even say anything at all…
But day by day the emails increased, and day by day my spirits lifted. The weight of my world was becoming a little lighter. My stress … my grief … and my worries were easing.
So, I say to you – all of you, who sent a note or an encouraging comment my way – Thank you! It helped me more than words can say!
. . .
I don’t feel that I need to go into the details as to why I chose to become silent for so long. Besides, it would be anything but simple to explain. Perhaps one day I will, but not just now. All I will say is that … life happens.
For now though, my ever changing and ever challenging world has found a bit of calm. Much needed too, I must say! I no longer feel like I’m on constant ‘alert’ – waiting for the next crisis to strike.
I am learning to find peace within myself…even in the midst of chaos.
I am finding ME again – My voice, and my strength.
And because of that, I can finally sit down at my computer once again and write.
…More to come soon!
Copyright © 2010 Victoria Lukenovich
Realizing I haven’t written a single thing in over a week, I figured it was time I did. Trust me; it’s not that I haven’t wanted to…I have actually been trying to type this sentence for three days now! If only I could have a single thought of my own; A thought that doesn’t involve mud being thrown on the youngest child, or a moment without shrill screams of tattling. And I don’t mean tattling in the sense of “Mom, Nick got hurt.” Or “Mom, Kyle’s having an asthma attack.” I’m talking about the petty things like, “Caitlyn isn’t being nice to me”, or “Nick rolled his eyes”, or “Kyle won’t share the video game.” And of course the never ending “She hit me!” followed by “No I didn’t! You’re such a liar!” And completed with the loudest “MOOOOOOOOM” you’ll ever hear!
I swear, on days like this they could be the poster children for sibling rivalry!
And all of this takes place in this tiny house! I’ve come to the conclusion that if this new family dynamic is going to work at all, then we need a bigger place, because in all honesty, this just isn’t working…
Okay, so I know that simply having a larger place wont solve all of the problems, but it would solve a few. At least when WWIII breaks out (as it usually does at least five times a day…sometimes more) there would be enough room for everyone to get away from each other – mainly Caitlyn.
Speaking of Caitlyn… My sweet, beautiful daughter. The daughter I always wanted… My only daughter… She can either light up the room with her smile or bring about a storm of chaos – all depending on her mood (which changes from minute to minute).
Let’s just say that the ‘honeymoon phase’ between her and Nick has come to a screeching halt. She has kicked Nick off his ‘I’m the kid in charge’ throne, and has taken on the role of judge and jury. Yes, that’s right; this seemingly innocent child is trying to run the show…at least with her brothers. I’ve let her know many times that it’s not okay, she can’t behave the way she does, boss her brothers around, try to boss me around, and then get mad at me for calling her on it. I’ve even tried the tactic of telling her that she’s the most ‘responsible’ one (when her brothers weren’t listening, of course) and that I know she can do better. My attempt at this psychology works for a short time, but so far it hasn’t ‘stuck’. Hmmm, maybe it’s time for a new tactic.
I know she’s going through a lot right now, and this isn’t easy. Not to mention she is twelve…beginning to go through puberty, and is currently comparable to an emotional Molotov cocktail.
Life as she knew it has drastically changed. It’s changed for all of us, and everyone seems to be dealing with the stress in a different way.
As for Nick…He was doing really well at first. Lately? Not so much. He does alright during the day, but it seems his impulsivity wakes up at night and he just can’t contain it anymore. Tonight was a huge fiasco when I asked him to take a bath and get ready for bed. He did everything imaginable to get himself in trouble. After running around the house half naked and screeching animal noises at the top of lungs, he agrees to take his bath. While in the bathroom, he proceeds to dump my bath salts all over the floor and down the drain. He emerges from the bathroom ten minutes later, in his pajamas, soaking wet (he neglected to use a towel to dry off before getting dressed) and he was still dirty. Someone please tell me how that is possible?
The next hour was spent trying to calm him down. One minute he’d be laughing hysterically while throwing shoes at my head, and the next he’d be screaming and crying that he’s sorry. Talk about emotional whip-lash!
I don’t think I’ve ever been so happy to see him sleeping as I am tonight!
Aside from incidents like these, he is trying to ‘keep it together’. And like I said, it’s hard on everyone right now.
He’s said a few times that he’s “tired of sharing” with everyone; his toys, video games, etc… but he does. He’s happy to have Kyle here and they are still getting along great. He does get frustrated with Caitlyn, and I will admit he pushes her buttons just as much as she pushes his. I tell him that’s what little sisters do. It’s their ‘job’, and he thinks it’s funny when I describe what his aunt (my little sister) did to annoy me when I was a kid.
. . .
As for me? I’m really not sure how to put what I am feeling into words. I suppose overwhelmed sums it up a little. Frazzled, frustrated, and overall stressed out beyond any healthy level! I no longer have time to myself. I used to look forward to the evenings after Nick was in bed. That was time for me and Jeff to decompress, talk, write, watch TV, and be adults… Now that every room in the house is full, we no longer have that luxury.
My health has taken quite a blow as well. I’ve been recovering from surgery, and starting to feel better. However, last week I felt some pain in my lower back, I went to bed hoping it would be better in the morning. Was it? Nope.
I woke up at 1am screaming in pain. I mean the worst imaginable pain ever! I would rather deliver my twins again with no pain meds (and one was delivered by emergency c-section) – than to endure one more second of that back pain!
I was rushed to the ER where I tried telling the nurse I had a kidney infection. She looked at me strangely and asked if it had been diagnosed. I told her no, but I’ve had one before, and trust me – it’s not something you forget easily.
After blood work, tests, images, and more blood work was done, the doctor comes in and confirms that yes…it’s my kidney. I was informed that my right kidney was infected and was on the verge of shutting down…they wanted to admit me, and start IV treatment right away. I told him that wasn’t an option right now. I didn’t feel like explaining the situation at home or why I had to be there. I signed the necessary paperwork to be discharged, was given a heavy-duty dose of antibiotics, and told to come back if my fever (which was at 103.9) or the pain didn’t go away.
Well, after a week, I am feeling a little better, with only a small amount of pain…but it’s tolerable.
Seriously, I am getting sick and tired of being sick and tired! Enough is enough already!
I know that we will all survive this and adjust. I’m sure Jeff and I will find time for each other soon, and I’m even hopeful that the kids will mellow out and adjust too.
Just like that quote by Winston Churchill; “If you’re going through hell, keep on going.”
Well, that’s exactly what we are going to do. We will get through this together.
~Goodnight.
Copyright © 2010 Victoria Lukenovich
The most unexpected thing happened yesterday. Just when I had given up hope that there would ever be respite again, I got a phone call from the respite coordinator. He informed me that there was a slight possibility that someone was available to take Nick for the weekend. It was all I could do not to scream and jump up and down for joy. We haven’t had respite since May. Well okay, we did have someone watch him while I was in the hospital – but that doesn’t really count as respite in my book! Before I hung up the phone, I had already begun to pack his clothes and medication for the weekend… (I was just a little bit excited…can’t you tell?)
I immediately called the woman to make arrangements.
She wanted to know about Nick, (obviously) about his personality, and any important information. She also asked how I felt he would do if she took him to the Rose Garden on Saturday (The Rose Garden is the venue where they have the Blazer basketball games and concerts.) I explained that he has a horrible fear of high ceilings, tall buildings, and doesn’t do well in large crowds. Apparently her son (who is a little older than Nick) has the exact same issue. That he also ‘freaks out’ in large places and gets ‘dizzy’. The way she described her own son (who is autistic) is the same way I describe Nick.
I said, “Awesome! Really? Your son does that too?“ Then I realized I probably sounded a little too excited. I mean, having a child who has a lot of unique needs is not something to be excited over – but finding another parent who goes through the same thing isn’t something that happens everyday either!
I quickly apologized and told her I was just happy that someone else understands. We ended up talking for quite a while and realized we had so much in common. It’s refreshing in a way to know I’m not ‘alone’.
Nick called me shortly after he left, literally squealing with excitement. Apparently, he is going to the Rose Garden this evening to see the American Idol concert! Not only that, they have back-stage passes!
That lucky duck!
I’ll admit, I’m not that much into TV. There are a few shows that I watch, but not many. However, one of the shows that sucked me in this year, was American Idol. Yes, I’m a tad bit jealous. It would be great to go…but I am also so happy for him. He doesn’t get opportunities like this everyday. In fact, he’s never been to a concert. I really hope he does okay. I’m sure if he can get past his fear of the high ceilings, he’ll have the time of his life. He deserves to have fun, and be a ‘normal’ kid … even if it’s just for a night.
. . .
I think this respite came at the perfect time … for everyone. Yes, it would be bliss for me and Jeff to have some ‘alone time’, but maybe this break will give me a chance to spend some time with Kyle and Caitlyn.
Even though I was woken up quite early this morning to whispered yelling, (Yes, it is possible to yell in a whisper) and hearing “Stop it or I’m going to tell mom!” I have high hopes for today. And hopefully this weekend will provide a little relief for everyone.
Copyright © 2010 Victoria Lukenovich
I have thought long and hard about writing this post. I would start typing, get almost halfway through, and press delete. I must have done this at least a hundred times now.
I thought to myself, ‘Should I really put something like this here? Will the ugliness of the subject taint or change my blog? Will exposing such ugliness make me like those I am exposing? ETC. . . . I struggled with these questions and many more until I finally came to this conclusion: When I started this blog I decided it would be my own therapeutic ‘outlet’. A place I could unload all of my fears, worries, stress, hopes, and of course joy.
It may not always be cheerful, but it is always honest.
*Disclaimer*
What I am about to say is one hundred percent true. I decided if I am going to write about this, then I will write about all of it. It is not meant be slanderous, hurtful, or hateful in any way. These are simply facts…A series of events taking place in my life. I mean no disrespect, and I hope no offence is taken. I want to walk away from this; close my computer when I am done with my head held high, a clean conscience, and my dignity in tact.
Even if no one reads these words but me …I need to do this for myself. I want to get it out – all of it. And be done with it. Never to speak of it here again.
This is my catharsis.
. . .
And so it begins. . .
A lot has changed in my life, with my family, and in my home the past few days…and I mean a LOT.
I was blind-sided Sunday evening when I received a frantic call from my twelve year old daughter. She was hysterical as she tried explaining to me that she had run away from home.
Let me back up for a moment to briefly explain our family dynamic. I have three children. My oldest, Nick who I write about here, and my twins, Kyle and Caitlyn.
Nick lives with me & Jeff. Kyle and Caitlyn live with their dad and his new wife. We have joint custody of the twins, but for safety reasons and concerns with Nick, we were unable to have all three children living with us.
Recently, it came to my attention that their dad and his wife were having ‘problems’ and as a result, he had left the home – leaving my children there with their step-mother. Now, it is none of my business what issues they are dealing with – that is between them, and it is not my place to talk about it. What I feel I have every right to discuss is the way my children and I have been treated.
So when my daughter called in hysterics, I knew something had happened…Again.
She explained that her and ‘K’ (step-mom) had gotten into a fight, that she was told her dad left because of her. Caitlyn also told me that ‘K’ showed her emails, pictures, and text messages that belonged to her dad and told her he was with another woman because of her and her brother. (I wasn’t sure whether to believe this or not until ‘K’ sent me email later that night confirming everything my daughter had said.) Caitlyn told me she hated being there, and that all ‘K’ ever does is tell them what a bad mother I am, that I don’t love them, and if I did, they would be living with me – Not Nick. Apparently they are told things like this nearly everyday. “K’ then started calling my daughter a whore, a bitch, ETC….and said to her (and in my email) that if it wasn’t for her ‘nurturing and care’ Caitlyn would grow up to be a ‘worthless piece of sh**, just like her mother’. There is so much more that was said that night, but I think I can make my point without turning this into a stream of profanity.
Knowing that these words were said to my daughter…that she was forced into their problems by reading her fathers emails, and listening to ‘K’ carry on about adult issues makes me mad. Even though ‘mad’ doesn’t begin to describe how I felt at that moment.
Caitlyn had run out of the house after this blow-up and went to her friend who lives next door. She immediately called me, begging me not to make her go back home…to come and get her. I asked if her brother was with her. “No, he’s still at home with her.”
Before she could ask me to come and get her again, Jeff was out the door and on his way to get both of them.
This is not the first time there have been problems with ‘K’. Although, only recently have there been these kinds of problems with her and my children.
A few months ago I learned that she had slapped Caitlyn in the face for being disrespectful. I was furious. How dare anyone hit my children! I don’t hit or spank my kids, and I’ll be damned if I will allow someone else to. Not only that, I just found out that she has frequently grabbed Kyle by the throat while yelling at him, and one time, slammed him into the refrigerator!
That is not discipline. It is abuse. Plain and simple. And, it is completely unacceptable!
. . .
A little history…
It’s obvious that their step-mother and I do not get along. The funny thing is, until last year, I thought we did.
The ‘issues’ I had with ‘K’ started last summer in the form of online harassment/stalking/cyber-bulling… It began when I received a friend request on MySpace from someone by the name of David. Seemed harmless enough, I thought. Soon after accepting the request, I started to receive some nasty and hateful emails from ‘David’. Not long after that, I received another friend request from someone named ‘Helen’. And guess what? The same thing happened. I ended up reporting it to MySpace, and a short time later the profiles were deleted. I found it all very bizarre. The messages I got from them mentioned personal information…information that a total stranger would not know. I thought after submitting a complaint to MySpace, the ordeal was over. But that was not the case. One morning my ex-husband came to my house in tears (this is a man who rarely – if ever cries.) With him, he had emails. Many. I asked him what was wrong…he came in, sat down, and said ‘In the fourteen years I’ve known you, I never knew you were such a cold-hearted bitch.” I was floored. Literally, I didn’t know what to say… He explained that the night before he had been forwarded several emails from ‘David’… emails that I supposedly wrote to David. It looked as if I had written to him, it had my email address on it, the time, the date, and then ‘my message’…The subject of these messages was sickening. They were discussing how I hated my kids, that I never wanted them, and mentioned the only reason I married their dad was for money…that I never loved him, cheated constantly, ETC…
I pulled up my email immediately after seeing only a couple of these. I HAD to prove SOMEHOW that I did NOT write these emails. I showed my ex my inbox, my sent folder, my trash (I never delete anything, so there were tons of messages in there) and NONE were written to ‘David’.
We talked for a while, and he finally said that the writing…the wording wasn’t me…that it seemed strange, because I never use phrases like “b/f”, “hmmmph”, or several others that were included.
I felt violated. Someone had used MY email, and signed MY name to these disgusting and false messages.
Isn’t that a crime?
I didn’t know who was doing this, but luckily the ‘drama’ faded away…for a little while, anyway.
After this fiasco, I stopped using MySpace altogether, and switched to Facebook. Not long after, both Jeff and I got a friend request from someone named ‘Megan”. Yes, it started again…
However, after a lot of thought, we all had our suspicions that it may be ‘K’. I had no way to prove it at the time, until ‘Megan’ started to leave comments on Jeff’s blog (which for obvious reasons, he never approved). You see, the neat thing about WordPress is, when someone leaves you a comment, you are able to see their IP address.
So, all I had to do was figure out what ‘K’s IP was, compare it with David’s, Helen’s and now Megan’s.
Thanks to a tech guru I know, I learned it’s quite simple to get the IP from any email you receive. And I had emails from all of them…even ‘K’. I checked the IP’s of each one. Guess what? They ALL MATCHED!
I want to say I was I was shocked, but that doesn’t begin to explain it. Confused? Angry? Worried? All of the above? I wondered how many more personalities she was going to create, and why. What was the point? What did she hope to gain from all of this?
So far, since ‘Megan’, there have been no more fake profiles/people popping up. And hopefully, it stays that way. It all just seems so immature to me and to be honest, I don’t have the time or energy to play along with her twisted mind games.
All of this – this entire experience has been emotionally draining to say the least. I’ve wanted to write about it and vent my frustration many times, but resisted and remained silent…until now.
It was easier to bite my tongue when it was directed towards me. Not my children. However, after what she did to my kids, I cannot sit quietly any longer.
She hit them, grabbed my son by his throat, shoved them into walls and refrigerators… and that’s just the physical abuse they suffered. For over a year they have listened to her while she calls me vulgar names, tells them what a horrible mother I am and insists that I abandoned them. And on top of that, she calls my daughter a whore and a bitch. Not to mention dragging them into the middle of her and their dad’s marital problems.
I can understand and even sympathize with what she is going through in her marriage…I’ve been there before, and I know how heart-breaking and stressful it can be. But to take your frustration out on a child, to manipulate and screw with their minds is just sick!
Am I over-reacting here? I surely don’t think so. If anything, I think I am being quite calm considering the circumstances.
. . .
Moving on…
So, as of Sunday evening, this became a full house. I cannot begin to describe how relived and happy I am to have them here! My heart is at ease for the first time in a long time.
That doesn’t mean this new dynamic doesn’t come without its own set of unique challenges. Right now we live in a very small (I prefer to call it cozy) two bedroom duplex. There are now five of us living here. We talked about moving to a larger place, but that requires a lot of money for move-in fees, which we don’t have.
I’m sure everything will work out just as it’s supposed to. They say everything happens for a reason, right?
All I care about it is the fact that my kids are safe, healthy and happy. And since Sunday night, they have been.
Nick has really risen to the occasion too! I briefly explained to him what was going on by saying they were fighting, and we want them to be safe.
I am so proud of him for stepping up and being the most awesome big-brother! Yes, there have been some ‘moments’, Caitlyn and him don’t usually get along, but despite everything, they’re doing great! Nick is also thrilled to have Kyle here (they do get along). Kyle has Autism (Aspergers Syndrome), and it seems many times that Nick is usually able to get through to him when no one else can.
I am looking forward to putting this behind us, and moving on. It will take time for everyone to adjust, I’m sure. But I believe in my heart that we will better and stronger in the end.
Copyright © 2010 Victoria Lukenovich
Earlier this morning as I was going through some photos I had taken, I came across these, and realized I had meant to put them in a much earlier post.
They were taken back in June at Waterfront Park in Downtown Portland.
Funny thing is – I have gone there more times than I can count, but I never noticed these until that day.
"With new hope, we build new lives. Why complain when it rains? This is what it means to be free."
. . .
"Glancing up at red-tinged mountains, my heart is softened. A day in deep autumn."
. . .
"Through the car window A glimpse of pines. Oregon mountains. My heart beats faster, returning home."
. . .
"Going home, feeling cheated, gripping my daughter's hand, I tell her we're leaving without emotion."
. . .
These were taken with my old cell phone. . . Not bad, huh? I’ll have to go back and take more now that I have a decent camera!
Have a beautiful weekend~
Copyright © 2010 Victoria Lukenovich
It’s no surprise that my son takes a combination of several pills a day for schizophrenia. A cocktail of medication including – anti-psychotics, anti-anxiety, mood stabilizers and even one to counteract the unpleasant side effects of them all. {I’m sorry, but if you need to take an extra medication just to reverse or lessen the side effects of other drugs, maybe you shouldn’t be on those medications in the first place.}
A blogger friend of mine has recently been writing about alternative mental health treatments. She’s also read and recommended a book called “Anatomy Of An Epidemic”, by Robert Whitaker. {I haven’t bought or read it yet, but I plan to.} Usually I don’t pay too much attention to books/websites/articles that are against psychiatry. It feels a bit too ‘right-wing’ vs. ‘left-wing’ to me. I prefer to be somewhere in the middle.
I still believe psychiatric medication for some people can be beneficial, and even in some cases necessary. I used to think it was necessary for Nick. Now? I’m not so sure.
. . .
Clozapine {Also known as Clozaril}…
This drug they say is the last resort in treating schizophrenia. That it has worked wonders in drug resistant patients. It is prescribed only when everything else has failed. So what do you do when the ‘last resort’ stops working, walks out the door, and fails you – just like the rest?
I’ll tell you what you do – nothing. You pray for a miracle and you hope for the best, but really there’s not a whole lot that can be done. The dosage can only be increased so much before it starts to deplete the white blood cells. And if that happens? Well, to put it bluntly, you’re screwed.
Right now, Nick is at the maximum dose of Clozapine, and I worry it’s no longer helping him as it once did. Recently he’s started to develop ‘ticks’ and strange mouth/tongue/jaw movements. This freaked me out and reminded me of the time he had tardive dyskinesia while taking Risperdal. I told his Doctor right away, but he said it was nothing to worry about yet. {YET? So tell me, when should I worry?}
Aside from the Clozapine, the other meds he takes cause him to suffer some pretty awful side effects as well. For example: He has trouble waking up and making it to the bathroom in the night, and frequently has accidents. {Side effect of 1200 mg. of Lithium, so I’m told.} He also drools… A lot. Not just in his sleep, either. He’s often dizzy/drowsy, but becomes hyper trying to stay awake which leads to him becoming angry and aggressive. Nick also has a never ending appetite. He could eat enough food to feed an army and still be hungry. Since he started taking Clozapine he’s gained about sixty pounds.
If you ask me, that’s an awful lot for a 14 year old boy to deal with everyday.
Now, I’m not here to discredit or ‘put down’ these and other medications. Not at all.
In fact, when Nick first started the Clozapine, it was like a miracle! He slowly started to settle a bit, the hallucinations stopped, he seemed more rational, calm, and for the first time in years, he seemed happy… genuinely happy.
But, what’s that saying? “What goes up, must come down?” Well, I’m afraid Nick is starting to come down, and it’s only a matter of time before he crashes.
It’s like he’s gradually sinking…going deeper into his own world where monsters and invisible people are real. I can see it in his eyes – there’s often a wild yet ‘vacant’ look about them. Where is he? I want my son back, dammit!
I don’t know if it’s the medication causing this or the disease. However, a few weeks ago Nick made the most profound statement and I haven’t been able to stop thinking about it since.
He said to me (and his doctor),
“I used to be fine, I wasn’t like this before. I could go out, like to the mall with high ceilings and I wouldn’t be dizzy. I wasn’t scared, I was normal…you know, like a regular kid. It’s the medicine! It’s making me … sick! Before I had to take all these pills I was okay. But now, it’s really bad. I hate how I feel, I hate myself! I don’t want to feel like this anymore!”
YES. Nearly word for word that is what he said to me! If that isn’t a moment of clarity, then I don’t what is!
He has a good point. He wasn’t always like this. So much has changed with him. Nick used to be able to do ‘regular kid’ things. He even went to public school…back then he was at grade level. Now, going into 9th grade, his teachers tell me he’s currently working at a 4th grade level. It’s becoming obvious how much he has regressed.
Physically, he no longer has the coordination to cut up his own food, and even struggles holding and using a fork or spoon. The way he walks seems to ‘off-balance’ and very wobbly. Nick’s physical appearance has changed too. Not just with the weight gain, but when it comes to taking care of himself. It’s usually a huge a fight to get him to take a bath, put clean clothes on, wash his hands, etc… If it has to do with hygiene, forget it…he wants no part of it, it’s almost like it requires too much energy.
Mentally and emotionally he has regressed as well. He has gone from being at grade level (5th grade, I think), to a 3rd/4th grade level. It’s especially obvious when I look at his handwriting now and compare it to school work done a few years ago. The difference is drastic!
Nick is also having more difficulty comprehending and participating in simple conversations, and gets incredibly frustrated at the drop of a hat. He has trouble making friends too. Not because he isn’t friendly – he is…but because he isn’t like other kids his age. After the latest round of evaluations, the doctor told me that even though he’s 14, mentally and emotionally he’s more like a 5 or 6 year old.
So much has changed, and for a while, when I noticed him improving, I thought the treatment he was receiving was for the best. Looking at the situation now… It only makes me sad. Sometimes I feel like I’m grieving a loss. This wasn’t how things were supposed to be for him! I wonder where did it all go wrong. What happened? And more importantly, how can we fix this? How can I help him and what can I do that I haven’t already done?
I would love to take him off all off his meds. EVERY SINGLE ONE OF THEM! I want a doctor to treat my son, not his side effects!
As much as I would like this, I would never take him off his medication – at least not at home. I feel it would be too risky with the withdrawals. So far the only place willing and able to do this is the NIMH {National Institute of Mental Health}. The downside? They’re in Maryland. I’m in Oregon. Yes, they will fly us out there, take him off his medications, evaluate, test, and re-treat him.
If it wasn’t all the way across the country, I would consider it. But to leave my home, and all of my other responsibilities here is not something I can do right now. For now, it remains an option that’s placed on the back burner. But at least it is an option.
In the meantime, I’ll continue to give him his meds, watch for the side effects, and hope he doesn’t unravel any further.
All I know is there has to be a better way! He deserves better! He deserves to be happy and healthy.
Doesn’t everyone?
Copyright © 2010 Victoria Lukenovich
-Neil Gaiman
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Yesterday was my birthday …. Yes, that’s right, another year older, another year wiser, and another trip around the sun!
Is it just me, or is it that as we get older, birthdays aren’t as exciting as they were when we were kids? Maybe as we grow up, the magic we once saw and felt in those moments slowly fades away…
Yesterday though, really was terrific! And for a brief and shining moment, it felt magical! {And that feeling was a gift all in itself!}
First thing in the morning when Nick woke up, he came out into living room singing, ‘happy birthday’ to me! Then he announced he was going to be on his “very bestest behavior all day” And for the most part he was!
Later in the evening, when Jeff got home from work, we all went to dinner, and I was surprised with a flaming hot-fudge sundae for dessert! Okay, so it was just a sundae with a birthday candle on it, but it was awesome nonetheless!
As for gifts – I told Jeff that all I wanted was to have a good day – I didn’t need presents…Would he listen though? Nope…
Wrapped up in a bright pink bag with a crown that says ‘Princess’ was a pink digital camera! {I think he knows me too well!} It’s absolutely perfect! Finally, no more trying to take pictures with my old cell phone! I have a feeling I’m going to be on a big photography kick for a while!
Overall, it was great day. And more importantly, I feel blessed to have shared it with the people I love!
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Copyright © 2010 Victoria Lukenovich
Well, it’s official. . .
I am now the proud mother of a high-schooler!
Today was Nick’s 8th grade promotion ceremony. It went perfectly, and just as I expected – I was an emotional wreck as he walked across the stage to receive his diploma!
I can only imagine how emotional I’ll be when he graduates High School… Thank goodness that’s a few years away!
Receiving his diploma from the pricipal
Nick's certificate and program from the ceremony
Copyright © 2010 Victoria Lukenovich
