Just Another Manic Monday…

I haven’t had the energy, time or motivation to write lately and therefore there is a lot to write about. I will spare you the tediousness of everything. The bottom line is David is in the custody of DCF and living at a safe home here in Plainville. I haven’t seen him in a month. It’s too hard. For both of us. The last time I saw him he was really, really upset that he was not able to come home. He kept promising he would be good, that he’d cover his mouth, etc. I’ve talked to him a few times and he seems to be doing well. We go on the 8th to a meeting with DCF and hopefully we will get a more solid plan and information on what is going on. I don’t know anything about visitation, what he can have and can’t have, etc. Christmas without him was hard but I had to remind myself that if he were home there wouldn’t be a Christmas anyway. I am going to find out if they will let us bring his presents to him. 

On top of this, we cannot have Brandon’s rights terminated and Jonathan cannot adopt David because he isn’t in our custody. The rules of the state and the bureaucratic bullshit is maddening. We wouldn’t be in this place if it hadn’t been for the broken healthcare system, lack of mental health resources and the government. Not that whining about any of it will change anything or make it better. It is what it is. We suffer at their hands for the good of who? Who benefits? We hope that its David who benefits and as a result, us. 

Jon and I watched Wanted last night. I think it is one of the best movies I have seen in awhile. I’m sure many would disagree, but it gave me a lot of hope and a lot of inspiration. That sounds crazy, because its a movie about assassins who kill random people in the name of fate whose names are determined by a loom, but there is a message deeper than that which really hit me. The guy goes from being a passive loser who gets yelled at by his boss, put down by his girlfriend and betrayed by his best friend who is sleeping with her, to a strong, fit, confident bad ass. He winds up with over 3 mil in his bank account so he walks in to work, tells his boss off and hits his friend in the face with his ‘ergonomically correct’ keyboard. I don’t care what people say, money changes everything. If I had 3 mil there is more than one person I’d hit in the face, metaphorically speaking. So it may just be a movie, completely Hollywood, but the underlying message is true. You are what you make yourself. I intend to make myself great and leave all this bullshit behind.

So this is it. David is in the hospital again, which isn’t a huge surprise. We are sitting in the hallway of the court and waiting to go in to see the judge and hear the recommendations of DCF. We have signed the papers agreeing to have David committed to the care of the state. It’s frightening. It’s emotonal. It’s nerve wracking. I know that this is best but it doesn’t make things any easier for us. We have been wanting this but now that we are there I am scared. The reality of the fact that David won’t come home, his room will be empty, his playststion unused. I am sad. I miss him. Or what I think of him as. You only see the good when looking back and not the problems. And the truth is, when I am honest with myself, I feel guilty. I feel like I am not a good enough mother. Then, I look at Abby and see that that isn’t true. Maybe, too, I am a little relieved and I feel guilty about that, too.

Smoking that is. I’m dying. I miss smoking. I love smoking. I must be crazy for quitting right in the middle of all this. I must say, it took a little persuasion from Jon, but it was what I needed to take the leap. I’ve wanted to quit for awhile and I thought about it a lot lately. But, God, I miss it.

Jonathan and I did a cleansing fast recently and through that and quitting smoking I have come to realize that a lot of what we do is simply habitual. I would be feeding Abby something and out of pure habit and not hunger I would go to eat some of it. Or, I would walk by the fridge and open it to see what I could find or walk by the crackers and pretzels and had to stop myself from grabbing them. It’s the same way with smoking. Don’t get me wrong, both fasting and quitting smoking carry a “hunger” that is physical, but the majority of it is purely habit. There are times when I feel physically ill because I haven’t had a cigarette, but there are other times I just want one because its what I would normally do. Like taking David down to the bus, driving, after eating, when I’m bored, when I need to de-stress or take a break.  It’s definitely been a growing experience and I have had to be creative with finding new, healthy ways of relaxing.

On the note of relaxing, we haven’t slept well at all this last week. David has gotten up like clockwork at 3 am. The other day he got up at 3 and went and got Abby out of her crib because he wanted someone to play with him. He gets a lot of medicine at night…300mg lithium, 3mg melatonin, .1mg clonidine, and 50mg of benadryl. That’s a lot for a little guy. The clonidine, benadryl, and melatonin should all be helping him sleep. Unfortunately, both the clonidine and benadryl are making things worse. They work quickly but they don’t last long.

Our case is officially going to court because we refused to “plead out” and say ‘no contest.’ We didn’t do anything wrong and I’m not going to let them make me feel like I did. So come November, we will see. Yet another straw on our backs…

Well it’s happened again. David is back in the hospital. I have lost count now. Saturday was a week and they want to release him this week. FST came out and did the paperwork. I talked to the social worker for about two hours. I tried to give her the big picture. Hopefully she got it. I should just give her the address for this blog and she can read about it all for herself. We were supposed to have a ppt and the school called it off. The hospital wasn’t happy about that, as the school is a huge part of what is going on. We haven’t gone to see him because our car is barely hanging on. We have to be careful because if we lose the van we lose everything. Jon is at Midas right now getting it checked out and we both are praying that it will be cheap and easy. Who doesn’t right? So that is the latest. I’ll try to write more later.

” What is called the “Chinese water torture” was a torture described by Hippolytus de Marsiliis in the 16th century that was supposed to drive its victim insane with the stress of water dripping on a part of the forehead for a very long time. It may also be characterized by the inconsistent pattern of water drips. Supposedly, the desire for the human brain to make a pattern of the timing between the drops will also eventually cause insanity to set in.”

I have timed him. David will approach you every thirty to sixty seconds with another version of the same request, no matter how many times you provide him with an answer.

David asked me thirteen times today if he could have some candy. It started with ” Can I have a piece of gum, after I finish my lunch?” I said “No”.

“Can I have a mint?”

“No. Stop asking”

“Sometimes mommy lets me have some candy when I am good, so if I stop asking about it, can I have some?”

“No. Please go to your room and play while I make you lunch.”

” I am not asking, I just wanted to let you know that I found your Altoids on the counter in the kitchen. Can I have one?”

“No David. I am making you lunch, go to your room and wait for me to call you.”

“Daddy, I really like candy. It makes me happy.”

I ignore him.

“Daddy? Daddy? Daddy, I just want to tell you something. Can I tell you something. It’s just a small thing. Please will you listen to me?”

“David, the answer is NO. No to everything. NO. Stop asking. I cannot get your food ready with you out here. Go to your room and play.”

Ok, Daddy, I just wanted to say that chocolate is my FAVORITE and I really really like it. Are you making me my Peanut butter and Jelly?”

“Yes.”

“Ok because I don’t want that anymore, I want cheese and mayonnaise sandwich instead.”

“David we don’t have any cheese. You will have to eat peanut butter.”

” Fuck you! You make me so angry. I just wanted only cheese, and you NEVER give me cheese, and I just really want it and also Mommy always gives me some ginger candy when I am being good and I just really want some.”

This time I look deep into his eyes and I say “GO TO YOUR ROOM. This behavior is unacceptable and I WILL NOT give you your sandwich until you go to your room and wait.”

“Daddy, Abby is awake from her nap now, and she wants some candy, can I bring her some?”

“David WE DON’T HAVE ANY CANDY!, NOW GO!”

“But you have mints. I really like them, they are not too hot for me.”

David walks out of the room. I go back to making his sandwich, which included cleaning off the table so he can sit and eat. I hear Abby screaming from the other room. I walk in to see her in her crib, crying, as David has been hitting her with her doll. I point at him firmly and restate “GO TO YOUR ROOM!”

I get Abby out of her crib and put her in our room while I go back to the sandwich. She begins screaming again, and I walk in our room to find him jumping on top of her back with his knees.

I am now out of ideas. I want to scream. I want threaten to not give him ANY food until he leaves us alone for five minutes. I want to cry. I hate living this way.

It’s the song that is slowly unwinding in backdrop of the night. The big brass Carousel paints my world in a blur as I glance at the glowing screen of Pandora. Deuter. Like The Wind in the Trees. And I want to cry. Suspended by this moment, I should be asleep, but these are the moments I am most awake, aware of her.

Her tiny arms are wrapped around me, holding onto to what she believes can save her. Her tiny feet pressed against my warm flesh, and I am her savior, her hero, her her god. The world, to her is given, by me. I am aware of her breath, her presence, her need for life. And I will shape her destiny. And I will shape her tomorrow.

As I slide to the edge of the bed, I realize that I am committing to this moment.

The glow of the water cooler lights my way along this toy strewn path as I find myself staring in on him as he snores, unaware of how unhappy he will be once full consciousness invades his sleepy little world.

Drifting, slipping, frozen, and I can see them all. For just a moment they all exist in my dreamy little world. For a moment I can taste, touch, smell the world of father, husband, man. I am safe inside this magical bubble that lets me breathe in deeply every memory of them, untainted and untouched by time, preserved for my own private enjoyment, before the sun pulls itself ito the sky and whisks them away from me.

And I will wake up and she will be sixteen. And he will be twenty. My little angels, gone to join the world of adult. The land of the giants, and the truth; That the world is most beautiful when it sleeps.

And I am awake to see it.

How do you choose when the truth is you don’t really have a choice? It is almost 10:00 at night and David is still up and asking for food even though he ate a full dinner. Abby has been screaming for an hour and we finally put her in bed with us. She hasn’t had a problem sleeping until he got home. It’s only been a day and everything is right back to the way it was. I can’t help but miss the peace in our house when he was gone. How do I give attention to her when I’m forced to give attention to him and I need to give attention to the things that have to be done? There isn’t enough of me to go around and not enough time.

I was really hoping things would be different and people would see our needs a little better since he was hospitalized again only a week after discharge. I am already thinking he needs to go back. Today was just as bad as it has always been. We spent several hours this afternoon/evening trying to get him to cooperate. It started when I asked him to stop jumping off his bed and climbing on his shelf. He flipped out so I took his games away. He got mad and started throwing things. In the process he knocked over a glass of water and it got his PlayStation wet. I am not sure but I think that its permanently ruined. Electronics don’t usually like water. Either way, without his games he was completely unhappy and therefore became out of control. I tried to get him to watch a movie with Abby but he kept jumping all over the bed and making her scream.

Nothing has changed. Nothing works when he gets that way. If he is hurting himself or someone else, all I can do its try restraining him but that escalates him and it can go on for hours. Because he is so out of control, I run the risk of him getting scratched, his clothing rubbing him and leaving marks, or him getting something pulled the wrong way and “them” accusing us of being abusive.

We are seriously thinking of taking everything out of his room, putting on a door and a lock. The hospital and the school have quiet rooms for situations and in the hospital he had nearly nothing in his room. We were told by DCF that we couldn’t do that but I don’t know what else we are supposed to do. We can’t afford a dedicated quiet room for him because it would require a bigger place. While that would be great, we are lucky to have what we do right now.

Jonathan has had bronchitis and hasn’t been able to rest at all. We are financially screwed this month because of the money we have spent in gas and eating on the road going back and forth to the hospital a couple times a week over the last two months. Plus the time he has taken off for all of that and being sick now too. He made 11.25/hr this check after deductions and this was a good one. I don’t know how we are going to make it.  I don’t want to go on about financials because I know everyone is having a tough time right now. I’m just going to say that it seems like those with more money get better services and better treatment from everyone. We are in a catch 22. We can’t get better services for David because we have no money and we have no money because we can’t get better services for David.  Does it ever end?

I hate subject lines and titles. I can never think of what to put.

Hopefully she won’t be mad at me for sharing this story as she likes to tell it also. My sister is the kind of person that doesn’t hide emotions. She cries at the drop of a hat. I, on the other hand, don’t. I’ve never been the type to cry at movies. Even the most tragic are rarely enough to make me shed a tear. I might choke up or get misty but I don’t cry. When I was in my early teens Naomi and I watched Spirit, Stallion of the Cimarron (don’t ask.) Some part came on and she was crying. She said something to me about the fact that I didn’t cry at movies. I said to her “Naomi, I will never have the emotions that you do.”

I’ve remained that way.  Until the last few weeks that is. I have cried at every movie I have watched. No matter what it was about or what happened there was always a moment where I broke. Rent, Replacements, Sense and Sensibility, you name it. The most recent was Notting Hill. I thought it would be pretty innocent.

Nothing incredibly sad happens and nothing remarkable. Nobody dies or comes back from the dead. You would think, if anything, I would cry either when they break up or when they get back together. Ah no, it was at the very end…the last two minutes. They are in the ’secret’ park sitting on the bench, kids are running around playing, he is reading and she is just laying there enjoying being.

I lost it. I want that so much. A beautiful little life. Or even just an average one with dirty kids playing in the back yard while I make dinner. The ability to allow my child to play in the back yard without worry. I just want peace. Happiness. Life. Is that too much to ask? Are my expectations really that unrealistic? I don’t know.

I have tried to avoid sad movies especially since the Rent incident. I am thinking they may be safer now. I am watching Lake House. I’m crazy. I should watch something where everything doesn’t end up happily ever after or where everybody gets shot up and the hero just disappears. Eh, anyway. Back to folding clothes.

Joanna and I passed emails between us throughout the day. These are our words.

Jonathan:  ” I don’t know how to process what’s going on. I think that’s it. I am just in a daze. I feel really sad. This whole thing with David feels really tragic and I have been trying really hard to ignore it.
Living without him would be really hard and worse we are being punished for it which makes it even harder. I feel as if I am just going to break down and cry. I don’t how to get through the rest of the day

I walk by Yankee Candle and I smell the autumn season and I just want to fall to my knees and weep. I miss him so. I hate this. I hate all of this.

Then I think about him home and I remeber how impossible it is. How far from my romantic dream. How destructive a force his condition is.

I feel such loss. ”

Joanna: “ That is a lot of what I feel also. Its so hard to know how to feel and what to think. It is also sad and confusing. I don’t want David to just go off to anywhere and the thought of how he will feel going from the hospital to somewhere else is so hard. David is so little and won’t understand why he can’t come home. In that respect everything in me wants to run to the hospital and bring him home right now. Then I remember him hitting and shoving Abby, running around screaming, us not being able to leave the house and I don’t see how he can come home. The peace in the house is nice but it’s also really sad. It’s a reminder that he can’t be here. I feel like I could cry at any minute…”

Jonathan: “ What I want and what it is are always against eachother. David is never really connected to our life in the present. He is never aware if the big picture. He lives inside a five minute window. When we call him on the phone, he is always distracted, never wanting to pull away to talk, never aware of the loss of us. David is always unhappy, always looking for something more, something he is not even aware of.

There is no taking David to the Mall or the Zoo or Mystic or Lake Compounce. All those things are like torture to him. Too much for him to handle. Because of the need to create a completely sterile  environment for him, Abby is denied all fun and growth when he is home. She gets no attention.

Abby will spend her whole childhood with no Halloween, no meeting other people, no shopping or festivals or all the things that make childhood magical.

Joanna: “ I told you about my friend who is a sibling of a a boy who suffers from a mental disorder. She grew up feeling neglected and denied so she knows the struggle I am having. Its just one more person on the other side that says “this is what I went through because of my brother and it was hell.” And the question remains which one do you choose? She said her mother used to sit her down all the time and tell her “you know i love you, I just have to spend more time and attention on your brother” and she said she never really believed her mom.

At the same point its not David’s fault he is going through this and why should he be denied living here. Then I think about the fact that he really ISN’T happy here. He wants to be here because its “home” and David loves us, but he isn’t happy here. He isn’t growing and he isn’t getting any better.

I can’t do it by myself, you can’t afford to take time off work or quit your job, and nobody is going to REALLY get in and get their hands dirty. They will sit on the sidelines and tell us what to do but never really help out. Nobody is going to come over and provide therapeutic play with David, teach him, take him out, etc. No one is going to come do the cleaning, dishes and laundry either. David needs constant supervision and attention. Nobody in our situation, or any home really, can give that to him. It’s all so complicated and difficult and like I said I don’t really know how to feel right now.

The truth is we know that he can’t come home, it is just reconciling to that. I keep trying to convince myself that it would be okay if he came home, I could do it. I know very well I can’t, I just can’t let go either. I feel like we are in limbo.  There is nowhere for him and that is really, really sad. I want to write a book called “Nowhere for David” about our situation. He can’t come home, he can’t stay in the hospital, and there is nowhere else for him to go. A million horror stories go through my head when I think of where he will go from the hospital if he doesn’t come home, and part of me says here would be better than any of those places.

Thats hard too. We don’t have any say. It’s not like we can say “you better put him somewhere good.” I have a feeling it is going to be one of those whatever you can get kind of situations.  I feel if we talk to others, then we are screwed, but if we stay quiet then they will make all the decisions for us. I just don’t know what to do anymore.”

David is back in the hospital. We took him Sunday night. I knew it was coming, I just didn’t think it would happen so soon. He’s been spiraling since he got out last week and it finally got dangerous. He hit Abby in the back with a stuffed animal and she hit the tile floor. She got a few bruises. Then he shoved her into the dresser. I can’t watch them all day long, every minute of the day. I can’t make her stay in her bed all day either and there’s really nothing to keep them apart.

Abby spent Sunday night and last night with Jonathan’s family. The house is very quiet today. The only noise is the hum of the air conditioner and the trickle of the little fountain on the end table by the bed. I couldn’t take the silence so I put on a movie. I don’t know why but I decided to watch Rent. It’s been on my mind lately.

In my signature for my email I have these lyrics from Rent:

I try as much as possible to remember that.

I was watching and it came to the place where Angel dies and I broke down. It wasn’t the scene–that was merely the catalyst–it was like the pain of all this and all of what is to come hit me at once. I sobbed for half an hour. I sat in David’s room and held his Simba, his favorite stuffed animal, and just cried. This is all so hard and so unfair. To all of us. I hurt for David and what he is going through more than I ever have before. To get out after a three week stay, be home for a week, and then turn around and go back. I don’t know. I don’t really have words for all of this and I’m sure this post will be sloppy…I just had to get it out there. 

So here I end. Quiet.