Friday, January 11, 2008

What passes for wisdom around here

Im sorry if my blog post sounded very down. I think my mom had it right when she said that on the days when everything is going okay you can manage okay but as soon as something goes wrong you start having a REALLY bad day. Terror is fully recovered, fyi.

I have had much better days than the day I wrote the last post.

Here's the things I know, even when Im bitching about coaches and rude people:

That everyone has sorrow and every sorrow and hate and rudeness that I meet with kindness and grace is one less hurt in the world.

That my son loved me and had absolute faith in me.

That life is not fair or just but I can try to be both.

That I can and will hurt and cry and greieve and I should do that all the way up until the time when it is too much and becomes more about self-indulgence than grief.

That I am someone who needs a job.

That crying as a hobby is pretty inexpensive.

There is no such thing as tear-proof mascara. Really, no such thing.

Contrary to fat-haters opinion everywhere, sometimes you really dont have time to excercise, for instance while taking care of a seriously ill child, and when you DO have time, it's a lot easier.

It's a lot easier to gain weight than lose it. Note I do not say fun because frankly, i hated being pregnant with the passion of 10,000 suns and nothing about it was fun, including the eating.

That some people actually choose to deal with your loss by looking through you and pretending that you are not actually, like, there. Which is a little weird of them and fairly disconcerting.

I will laugh my ass off again. I have. Last night at 3 AM when neither of us could sleep we began watching the cheesiest, worst sci-fi-ish movie ever. Called Nowhere, made in '97 it had a whole lot of now-famous people in it and it was so bad. If you like that sort of thing, I highly recommend it. By the time the lead (James Duval) said "Dear Diary" I was in hysterics, unable to stop laughing.

Sometimes I live with ghosts - the ghosts of what our house used to look like, furniture that doesnt exist anymore and sometimes out of the corner of my eye, Jake's ghost. Not that I really believe in ghosts, but sometimes I see them.

This lurching, painful way that I am making will get better. I have to believe this.

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.

Saturday, October 27, 2007


We buried Jake today. It has been the longest two days of my life. So many people loved him. Here are some pictures and his Eulogy:

BORN 7-9-05 at 7:06 2 pounds, 14 ounces, half a heart

1st Birthday

2nd Birthday

Eulogy to The Face

i carry your heart with me by ee cummings

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear; and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

So many people knew of Jake’s amazing journey through life as a heart baby. Born 10 weeks prematurely, with half a heart, the multiple surgeries, the 2 separate resuscitations that brought him back to us twice before. Jake always had legions of people praying for him to continue being a miracle on Earth.

For those who didn’t know him personally, he was a small, chubby cheeked boy with a killer smile that could light up even the darkest room. Forceful and stubborn, with a strong personality and particular way of doing things, he waited patiently for everyone else to fall in line with his plans. He liked to walk his bike and watch Elmo, dance and sing. He spent hours playing his music and drumming.

His greatest happiness in life was spending time with his family. He never let you forget he was around or forget to pay attention. He copied our expressions and movements – anything to make us laugh. He hated to sleep or let us sleep. Some of our fondest, and not so fond, memories are of his little hand tap-tapping away on our face until we finally got up for an exasperated Jake. If four hours of sleep was good enough for him it was good enough for everyone.

We will never forget all the joy and laughter he brought to everyone and how he made each day happy and fun.

Last Friday night, with his eyes so swollen he could barely open them, with infection raging through his little body, with tubes and wires everywhere, he opened his eyes to see us standing there. And even though our jokes were bad, he mustered up his last bit of energy and smiled at us.

Jake, you are the most courageous soul we ever knew. It was a privilege to be your mommy and daddy. If love could have saved you, you would have lived forever.

Friday, October 26, 2007

Thank you

To Katie and Blues and Charles and Em and Helen and Len thank you so much for your support the past few weeks. For all the people who have left comments in the past few days, thank you also. I cannot get back to all of you but your emails will go in Jake's baby book. Knowing that so many people care is a blessing.

For the previously mentioned people, or if I read your blog - if you would like the DVD we made of Jake's life email me with your address and I will send it to you.

My email is grl e grl 333 at A to the O to the L dotcom.

Thank you everyone.

Monday, October 22, 2007

3 AM

Jake woke me every monring in the hospital at 3 AM. Sometimes he was back asleep by 4. I cant go back to sleep, so I gave in and took one of pills.

That is how it ends. They hand you a perscription, swaddle your dead baby and take him away.

I cant imagine what kind of pill could possibly help me but right now, at my first 3 am without my jake, i cant bear it any other way.

i didnt know you could hurt this bad or cry this much.

The world doesnt work right anymore. I dont understand how this happened.

He was doing better. They told me he was really seriously ill but he looked fine. His numbers, all his numbers were so good.

They asked me if they could put in an art line. A somple art line, 20 minutes. I said yes, I kissed my baby and I went to lunch.

He never came back. When I got back they were trying to get him out of respitory failure and all of a sudden they were talking about abdominal surgery. I only went to lunch. It was only an art line.

They got him back but they knew then. They didnt tell us but they knew. He started to swell up. He could only open his eyes to little slits on Friday night. Saturday morning I went to school and when I came back Joe was crying and saying they said it was over.

All his numbers were still so good. I yelled at everyone for scaring Joe. They showed me Jakes blood numbers but it doesnt mean anything to me. He is my little fighter, my Jake. It is impossible that he can die. It cant be.

I dont understand how numbers on a piece of paper mean he is dying.

Friday night, he opened his eyes, little slits of eyes and we made him smile.

He smiled for us. I dont know how that can be his last smile. He is only 2. It is his time for firsts. It can be time for lasts.

The horrible horrible thing is that no one every tells you about last things.

Today we took off all his monitors and tubes and wires. We bathed him and dressed him in the pajamas that everyone had signed for him on his birthday. We let everyone hold him and then Joe and Jake and I got into bad and we held him. Joe let me hold him until he stopped breathing.

It is not right. The world is not right anymore. I dont understand. I only went to lunch.

The worst part is that I started to forget.

When Jake has his massive stroke and it was clear that so much hard work would be ahead I decided to not look back. I started to try to forget everything that went on before because I didnt want Jake to feel like I felt he was less. I decided we would start all over again from scratch. I would forget everything he had been able to do and be happy for all he could do and was going to do.

Now it's hard for me to remember. I dont want to forget.

Here is my Jake -

whenever the phone rang he would stop what he was doing and go to stand by the phone to listen in case we were going to answer.

He would walk around everywhere with my cellphone and have long conversations. Then say "Okay, bye"

Every day after dinner he would say "bike" and we would take his bike down to the sidewalk and walk to the park. The first thing he said when he came off the anethesia from his Fontan was "bike".

When he was really little his daddy taught him to rub his hands together and look evil when we would say "Im gonna RULE the world". I would give an evil laugh "Ah ah ah" and Jake would said "I-e-e".

Every morning he would step on the scale and I would say "25 pounds of Jake" and he would crack up. If I said any other number he got mad.

I think the pill has started working. I have stopped crying and I feel different so maybe I can go back to sleep. Now I get to have firsts instead of Jake. My first morning without him is ahead.

Good night.

Saturday, October 20, 2007

No Title

They are arranging to let us bring Jake home and let him die in bed, surrounded by all of us who love him.

I cannot bear it.

"I know not how to say goodbye when goodbye is the word that needs to be said." -Grimmscrave

Thursday, October 18, 2007

Another waiting game

I didn't mean to leave you in suspense. The operation on Friday went fine. The first part went well but the second part failed. He started draining 2200 mL. I realize my millimeter count is not very fascinating but it consumes most of my waking thoughts and at any moment I can spout off his last reading and his average reading for the day and how it relates.

I kill at parties.

In spite of the failure, on Monday, at 2 PM for no known reason, his drainage went down to 60-80 per hour. The next day, 20-40 per hour. I was hoping yesterday would be the same but it was still 20-40.

I tried not to get my hopes up because a lot of things could interfere and make it appear that his drainage had stopped. But today the docs said they think he really is maintaining about 750 a day.

Back up three days however, to our worst fear come true. Face got a rare and serious fungal infection. It has laid him low like Ive never seen him before. If he has been awake for an hour total I would be shocked. He surfaces just long enough to moan in pain until something - mommy pats or position change or drugs - puts him back under. His doctors say they are more worried about him than they have ever been.

Everything is on hold while he beats this.

The problem is that in order to cure it they have to take out his central (pic) line which is delivering everything he needs. Some things can only be delivered that way that he will have to go without for the time it is removed. Like nutrition.

It feels like everything they do to help makes more problems. His lungs are going so they put in a high-flow cannula that forces air into his lungs. He is much MUCH more comfortable now that it is in. He doesn't have to work as hard which means he has more energy. To cry.

On the flip side, his drainage really is down and there is a good chance once his infection is clear, barring other catastrophes, we may not have to have any other interventions.

Since he is a huge brat he has leveled off at 700 which is the outside range of intervention. Meaning that at 800 they would persue a 2nd lymphangiogram/ligation, at 600 probably not but 700...

This fungus has given his body some time to stop the drainage on its own and I hope it takes the opportunity.

It's gonna be a sucky weekend (as opposed to the usual joy) because he will have to be monitored extra close. In laymans terms, he will have to get stuck for blood a million times and glucose-tested every two hours and poked and prodded.

This is what Ive decided is going to happen -

He will beat the fungi by Monday
Tuesday he will have a new pic line put in without complication
By Tuesday he will be draining 20 or less an hour so even if it increases slightly from the pic placement it wont be a big deal and will go back down in two days

If all that happens (and it will) then we will just be in for the long haul of drainage which takes, on average, about 3 months. Of course there will be in-patient rehab after that but please, we can do that kinda time standing on our heads.

In other news, last weekend I somehow became the mom of a person entitled to get his driving permit. I welcome this, as it is the first time in a while that my permission is more dangerous to the world than to my child.

:::laughs evilly:::

Good luck, pedestrians. Terror is on the road.