Thursday, December 20, 2007

Almost 2 months later

One of the most surprising things about this, to me, is that it doesn't get better. Or at least not so far. Whenever I suffered from clinical depression episodes, I felt as if I was viewing the world surrounded by a sea of apathy. I often could keep up appearances but as for feeling - all feeling fell into the sea before reaching me.

Now I am surrounded by a sea of sadness. It is like discovering an extra finger you never noticed. I have sat at the shores of sadness cove, crying my eyes out over betrayal, break-ups, bad choices and important people in my life dying. I have swam in the cove and thought I knew all about sadness. I scoff at myself. The walls of my cove have fallen and all around, as far as the eye can see is sadness and more sadness. On my little island, I cannot see the shore.

I have said to myself "things will get better," told myself if I just hold on a ship will come. J and I tell each other, in turn, "it has only been X weeks." Our language of rescue to each other.

I have cried enough tears to solve any water crises. Left alone for more than 5 minutes, I bawl like a baby. Driving anywhere is sheer hell for me. I cry the whole way anywhere unless I call people on my cell. Of course, I have no earphones and I hate to talk on the phone.

At least from being depressed I know how to fake it. I laugh for real sometimes, and I get fake-mad when I should (Ive always found it very hard to get actually mad although I fake it well).

My most fervent wish is that someone would give me a job. Even a pity job, I don't care. See, being a stay-at-home momma, when your son dies, you also lose your job. For the first time in my life, I have almost nothing to do. At a time when I need to do something. I have always been a person who does things. Many things.

I finished the semester at school and am signed up for the next one (slipped to a B average this last semester however), and I am contemplating opening 2 different small business. I also started a foundation in Jake's memory. Maybe this sounds like a lot but it really isn't. None of it forces me to get up in the morning, which is something I really need. So my Christmas wish is a job. (If you re wondering, yes I am applying).

Our newest phrase in this house is "spread it around". It is our admonishment to the higher power, however futile, that we feel as if we have received our share of everything for the year and it's time to like, let up a little. Really.

If you had asked me 4 months ago if anything could ever break me I would have laughed at you. I always thought I was Teflon. Now I am not sure. I don't know myself - these extra fingers and strange sights inside have confused me.

I'm annoying the crap out of myself so much that I really want to just leave myself somewhere whilst I go on vacation. Or something like that.

So Ill tell you what's been going on.

One family member who I shall not name, told another family member while Jake was breathing his last that it was very inconvenient because that person just made settlement and was in the process of moving. Same person called the funeral home while we were making arrangements to demand an explanation for why that person was not consulted before we made said arrangements.

This is example A - i bitched but as for really being mad, nope - just faking it. I DO have to say that someone needs to be put in the naughty corner and taught some goddamn manners. I say it's never too late.

My son Terror's grandpop died a few weeks ago too. Although his dad's side of the family mourned greatly as is their way, I did not (nor did Terror too much) because the truth (which is dad's side prefers to remain as unfamiliar with as possible) is that he brought them mostly pain, both physical and spiritual, stole from them and did nothing but cause everyone who knew him endless amounts of trouble. It is hard to really know someone who you visited once a year through Plexiglas is all I'm saying. Or maybe I'm just a cold bitch.

J crashed his car. We were fine but his poor car required a lot of costly work.

J's dog died while we were in the hospital and we didn't have a chance to properly morn but of course we miss him.

I found something where it shouldnt be and found I have a serious condition which shall remain nameless until I get a job with good insurance. Until then, I cant have it because that would disqualify me from insurance help when I finally get it. But dont worry, the system aint broke.

Thanksgiving became a debacle because one parent asked to be with us and we said okay and ivited another set and the first set said they now refused to come because once we spent time with the seocnd parents and, as payback, the first set wouldnt be with them. The third set also wanted face time. So J and I went back to our original plan of spending the day in bed watching movies and driking copiously. First and third set of parents both furious. Guess which set is mine? Sorry, I couldnt resist. But really, does the word selfish mean anything to some people?

On Thanksgiving, I awoke to a sound that, sadly, I had actually heard once before. The sound of inside rain. All the pipes in the bathroom above us had burst and were pouring into our hall bathroom. His bathwater, pouring down my walls. Frankly, totally skeevy to me. So of course, maintenace people tromping around. Rude man downstairs replied "Whatever" when I told him that pipes had burst but the water was draining somewhere (cause most of it stayed in the bathroom) which meant his bathroom was in trouble also. Happy Thanksgiving to one and all.

And last and hopefully over and done with is my son and his wrestling debacle (I have told him he is not to wrestle and has to quit). His team at his school this year are the champions of the world a gazillion years running or whatever. Terror really loved wrestling and was looking forward to it.

My first inkling of trouble was at the parent meeting before the season. The head coach struck me as a big mook. In the middle of his welcome speech he went into one of many digressions about how there would be no out-of-control drinking this year. Then he corrected it to no drinking but it was said in such a way as to be a wink and a nod. I didn't appreciate it, frankly, and felt it inappropriate.

Saying that I sound like a complete dork and way uncool. But it was, so there. He also claimed that he had no idea what time any of the matches were because "it changes all the time". He didn't know whether we could earmark our fund money to him or not. All clubs get their money this way. A lot of money. And this guy has "no idea" about it. So that was the introduction.

The second thing was his style. The boys go to the school at midnight on thanksgiving and wrestle till dawn as the season opening practice. Yes, I'm serious. In line with that, although the season hasn't started my son has had his ankle twisted, face gouged deeply by fingernails and more brush burns than you can shake a stick at. They tell him to walk it off, and teach the kids how to cheat when the ref isn't looking.

So I'm not liking this guy at all anyway.

Then he takes my son to a high school late at night, a last minute thing I'm not informed about until 30 minutes beforehand (the school is about 30 min away). He takes him to a strange high school, tells me to pick him up at 930, has Terror call me at 815 to say they are finished (oops). When I get to the strange school, Terror is all alone because the coach "had to go". When I call to complain he goes into a long rant about the state and it's unnecessary rules until I cut him off. I tell him I don't appreciate him leaving my son alone in a strange place. I was pretty sure it was illegal as well, but I wouldn't have made any more of it until...

The next day he has Terror's coach tell Terror that he cant wrestle because Head Coach Dickhead says who wrestles and who doesn't and Head Coach is mad at me so Terror cant wrestle. Seriously.

So I call the Athletic Director who gives me a bunch of "it's not our policy to leave kids" "look into the matter" crap and like magic, Terror is back on the team. Of course no one on the team will speak to him because the coach has told them about his troublemaker mom. Lovely man.

When you need kids to fight your battles for you it's time to hang it up, really.

Onto yesterday, because Life is trying to break me.

The school nurse cant reach me (don't even get me started on my stupid STUPID new cellphone) so she calls my mom and says Terror is sick and could someone pick him up and she thinks he has MRSA.

In case you don't know, MRSA is a serious infection that has leaped from hospitals to travel through school killing off unwary teenagers and becoming the new crises in short order. So of COURSE my kid gets it. My mom didn't want me to freak and she thought the nurse was overreacting so she didn't tell me the MRSA part of it.

The doctor was great. I love our pediatrician (also Jake's pediatrician). However, they so rarely see me with Terror and so often saw me with Jake and we all have different last names so except for the main doc they sometimes don't connect all three of us. I say this because as soon as she examined him she said "he has MRSA" and like the biggest dope in the world I say "Is he gonna die?" Of course, tears start to fall instantly while another voice in me is exasperatedly yelling "pull it together you dumbass."

She assures me that it is in early stages and with vigilance and proper antibiotics it will hopefully start to go away. She tells me what other signs to watch for, she draws a black circle around the infected area so we will be able to track growth and turns to me and says "Do you have any other children?"

I freeze like a deer in the headlights, mouth open, felling like Ive been punched and no doubt looking like it. I have not one word to say. I start crying.

Of course.

She goes wha, oh - and then, "That is so like me. I'm so sorry. We loved Jake." and she starts to cry too. So were both crying and I tell her we both cant cry and I can tell she feels like falling into a deep hole and I'm trying to make it better which is ass-backwards. God knows it cant be easy. I wouldn't know what to do if it could just. fucking. be. easy. one. time.

And the constant waterworks? I could live without those too.

So I take my Terror home and I will admit to you (although J and Terror were fast asleep) that I stayed up most of the night and kept checking on Terror because I am terrified he will die. I know better in my head but my gut knows no such thing.

As I said to my friend "I really just want to spend the whole day staring at him to make sure I note any changes at once but I'm thinking it would be awkward for him." Would that I were kidding.

I managed to control myself with frequent checks today and the site has stayed the same (good) but his is having some joint pain (not good). I am controlling myself admirably by which I mean not running screaming down the street naked.

So, being the good and moral citizen that I am I call the coach and the athletic director to let them know that Terror has MRSA and you know what they say? Prove it.

Yeah, you read that right. The coach even told me that if I say anyone on the team has MRSA I could get sued for slander (!!) Not only dead wrong but an asshole to boot. What a surprise. Through torturous conversation in which they tried to make me defend myself against their attacks it became clear - MRSA is so feared, justly, that the process they have to go through if Terror has MRSA is laborious and "might scare people" that they will refuse to believe even my doctor or the school nurse. They will only accept written documentation of biopsy result signed by a doctor before they will agree that he has it.

The doctor has judged that a biopsy would be painful, potentially aid the spread of the disease, and is unnecessary because they they are treating him for MRSA because that is what she (and the second opinion) think it is.

The athletic director and the coach say that because there is no biopsy, that proves he doesn't have it. I wish I were making this up.

They had me so on the defensive it took me a while to realize "Why the hell am I bothering to fight? What the hell? I am trying to stop a public health hazard and the response is "Prove it."

My response - Bite it.

I know that is childish and I awoke this morning and called the school nurse to warn her that I felt they were doing the wrong thing. It makes no sense to me, what they are doing. If they inform the students, which is what they should do, and someone objects, they are covered because the doctor told them Terror had it. If they don't, and a kid gets sick or dies, and they didn't warn anyone because they wanted it in triplicate, they are in for it. Legally, and, I believe, morally.

But today I got the same speech (along with the idiot who is going to sue me for slander). When I told him I could certainly say that someone on the wrestling team has MRSA - my son - he says "Maybe."

Cant lead a horse to water, or strangle him with his own bridle, more's the pity.

Isn't it funny, though, that the very prescriptions that were put in place to handle this situation are the very reason neither of them will admit it is a situation. Ironic, no? Idiotic, yes.

So I spend time on this crap when really the only things that occupy my mind are 1) Terror is sick and he has to get better because I cant think of any other outcome. Did I also mention that none of the above asswipes ONCE asked how he was? Ahem. and 2) I am nowhere close to forgiving myself for the fact that during the last 17 days of his life Jake went without any food or bottle. I agreed to it because I thought it would help him. In truth, it means he died without ever again knowing the comfort of his bottle. And knowing that his mom, although right next to him, would not feed him no matter how many times he asked. I hope wherever he is and whatever he has become there is no unrest in him because of his incomprehension in this life. I pray every day that he forgives me and that I can one day forgive myself. I hope that one day, in this life or the next, that our children realize how many hours we spend while they are asleep - making sure they don't die of MRSA or restraining themselves from feeding you no matter how much they want to.

I hope they realize how very much we love them.

11 comments:

Anonymous said...

i'm so so sorry.


you really don't need to deal with any of that crap. i hope Terror gets well really soon, and all the ridiculousness of the wrestling team figures itself out.

mostly, i just hope you guys find some measure of peace in the holidays, and the new year.

p.s. would it be possible to post the name and info of the foundation you set up? i, and i bet other readers, would be interested in donating in the name of such a special little boy.

you are all in my prayers.

Chatty said...

Oh Sweetheart, you all deserve better.

I promise you that wherever Jake is right now, he knows and he understands. I'm positive. As for our children here on Earth, they know the pain of being a parent only when they become parents. Although I think Terror must have some clear idea now, seeing everything you're doing for him.

katie d said...

That coach is an asshole of the highest order. Not to mention a moron. I'm sorry you're dealing with people like him, as well as that Terror is sick. I sent you email that's more thoughtful than this comment, but I'm sending thoughts/prayers/vibes/etc. xxxooo

anna said...

It may sound dumb, but is there anyone that you can talk to, in person, about what you are going through? It may help some.

Everyone else has already said it better, but I too hope that things ease up on you soon. Like now would be good.

Charles said...

So sorry for all that is piling up on you and your family.

As one who has lost a child I can assure you it changes, not get better; but it will change.

amanda said...

I wish I could wave a magic wand and make it ok, but I can't. All I can tell you is that one day you wake up and you realize you aren't telling yourself to breathe, anymore.

Charles is right, it doesn't get better, or even change- you learn to live with it.

Jake did not have food or his bottle but he had YOU. This will not be a help to you today but maybe someday you will remember this and find comfort. I can tell you, as a nurse, the body when that sick no longer feels hunger or thirst but the emotional component remains. That amazing little boy of yours, had YOU to comfort and hold him. There is no way he could have thought you did not love him or that you would have done anything in your power to help him.

Every day, you and your family are in my prayers. I wish you peace of mind and spirit.

1blueshi1 said...

Honey, I am so glad to hear your voice again. Your blog has stayed on my favorites in IE and I have checked regularly, hoping that you would begin to post again.

About Terror's "coach"--let's beat that horse TOWARDS the water with a tire iron, then drown it once it gets there.

Hope you guys made it through Christmas okay. Please try to take care of yourself and forgive yourself. Not that I am good at taking my own advice. I have managed to alienate some work friends who are not speaking to me any longer and I feel like the biggest loser ever and am so relieved I can hide at home all week with my fam. My mom & dad are here from Richmond VA with us. Not that my issues even compare--but I know that you know what I mean.
XOXOXOXO

Anonymous said...

Thank you for coming back to tell us how you're doing, even though you're (so understandably) not doing well at all.

Anna Mae said...

I too have been checking in, and am glad to hear your voice. And I echo the call to forgive yourself. Although I have found that very hard to do as well.

For me, it was leaving my mom alone in the room as she was dying. The hospice worker told us it would help--that she couldn't let go if we were standing there. I regret it to this day.

What finally helped me, a little, was imagining the roles reversed. If J, or Terror, or someone you loved made a mistake caring for you because he believed that he was helping you, what would you want him to know once it was all over? That you know that he loved you, and that's all that mattered.

After struggling with guilt for many years, I've come to believe it's a powerful--but poisonous--way of holding on. As long as I'm still in that room, making those bad choices, I'm keeping that moment from passing away. But, I've come to realize, it has passed away, and being cruel to myself only makes it worse.

I think of you every day, and I send you my very best wishes for better things.

Zoe said...

wrestling coaches are assholes. my son got mersa from improperly cleaned mats last year and we are syill having problems. sadly there was one boy on the team who ended up with respiratory mersa and is truly lucky to be alive. after 3 practices and 1 fight with the coach this year i said enough. he is done wrestling.

i can not even imagine the depth of your sadness. people who have lived it say it gets easier...maybe it does. but for right now the pain has to be so fresh. stop trying to fake it. allow your self to feel...allow others to help you . my family is praying for you. thinking of you...wishing you moments of peace...even small ones.

Anonymous said...

Thank you for having the courage to update your blog. I don't know if you are a religiuos person, but I know without a shadow of a doubt that God will not allow more than you can handle. He knows you. He knows your strength.
I pray that his healing hands will help Terror through this illenss and that his strength will carry you when you feel alone.