Adventures in Freelance Insanity

What passes for wisdom around here

2008-01-11T20:23:00.000-05:00

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.

Almost 2 months later

2007-12-20T23:53:00.000-05:00

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.

Eulogy

2007-10-27T19:49:00.001-04:00

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.

Thank you

2007-10-26T10:09:00.000-04:00

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.

3 AM

2007-10-22T04:49:00.000-04:00

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.

No Title

2007-10-20T16:53:00.000-04:00

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

Another waiting game

2007-10-18T11:52:00.000-04:00

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.

Desperate

2007-10-11T19:47:00.000-04:00

They are getting desperate to stop his drainage.

Tomorrow, an out-of-hospital surgeon will come perform a procedure that has only been done 1 other time on a child. If that is successful, he will perform a second procedure that has never been done before on a child.

All in the hopes of stopping the drainage that is killing him milliliter by milliliter.

Let's hope it works.

Update

2007-10-09T13:00:00.000-04:00

This is a picture of Face in his sporty chair about a week after the stroke. He is still having trouble eating but, for heart reasons, he isnt going to eat for a few weeks anyway so hopefully he will regain suck.

He has some right arm movement, excellent right leg movement, no left leg, some left arm. Some hand on both sides. He said "Da" but he rarely speaks because it costs so much - his whole body shakes at the effort to get out "Da." Smiling, he does (when he's not mad at us).

On Friday he went down for his 8th procedure and everything started spiriling out of control - he had high fevers from a pic line infection, desats (50s), high heart rate probably from fever and low blood pressure from a mix of bad doctor decisions (all the doctors rotate out and he had a whole new set on Friday).

So he went critical with so many meds they didnt have enough access - 2 poles, 12 boxes (each box has an IV med). He also is leaking 1500 mL a day from his chest tube. Monday they took him down for his 9th procedure - to give him an even bigger chest tube in a different spot and put a new (infection free!) pic line in his femoral vein.

With all the fluid people have begun talking about "6 months" as a timeline for being in the hospital. One doctor was telling me the record for drianage is 900 in-hospital days. Kill. Me. Now.

No, really.

If I look up at the road ahead I start to panic so I am keeping my head down and taking it day by day, mL by mL. I am not going to consider the therapy he will need or the help Ill need to take care of him.

With this kind of hospital time it doesnt make sense to keep having an apartment so J is probably going to live with his mom - for which I intend to tease him unmercifully. Terror is gonna stay with my parents and I will become a homeless hospital waif.

Trying not to panic and keep my sense of humor. I am even more determined to keep going to school.

I leave you with a picture of a different sort. Our lives have become so crazy-surreal that on Friday night, eve of my big Chemistry test, Face started really failing. As I stroked his head and bagged him (basically forcing air into his lungs for him) J held up my polyatomic ion flash cards and quizzed me.

I hope your lives are much more calm.

What's Now

2007-09-22T20:34:00.000-04:00

Im sorry I havnt been able to personally respond to all your emails and comments yet. Hopefully I will have some time soon.

Since I last wrote he has battled pnemonia and won, had some serious problems breathing-wise due to an occluded chest tube, gotten mad enough to pull out the pic line embedded in his veins, and battled some unknown infection and won.

Thursday, he was my little Face again. He was making 2 year old jokes that were only comprehensible to him but made everyone laugh with his obvious delight at his own hilarity. He was talking and ordering me around with his little pointer finger. Juice. Ice. Bottle. Elmo. The little prince.

Friday morning he went in for a routine maintenance procedure to replace his pic line and switch out his faulty chest tube for one that worked. During his surgery, he suffered a massive stroke on the left side of his brain which has left his right side mostly immobile. It has taken his words. It has taken his ability to suck, the very first thing we learn how to do.

He is disoriented. He screams in frustration that his body no longer responds, that he cannot comunicate, that he cannot drink. In a way it is a relief because I see my sweet Face in there, fighting to break free of his weak body.

It is unworthy of him. He deserves the body of an athlete, an Adonis, instead of this weak helpless shell. He has begun using his left side (weak from previous strokes) to grasp, to hold, to protest.

When he panics, I soothe him. I am teaching him how to smite people since I have sadly neglected his cursing education thus far.

They say he is in the first stages and that he may regain some function in the next few days. I have promised him that if he drinks for me I will give him as much of my ice cream as he wants. I have promised that if he keeps fighting I will let him open and close the door, any door, as long as he wants without getting impatient.

Bargaining, one of the stages of grief.

My heart has broken so many times that it is a wonder to me that it keeps on beating. Sometimes it is a burden to me. I grieve, I grieve.

Yet I cant get too far down without some consideration of the awe that is Face. He doesnt know how to quit. His left side, slow and still these past three weeks, moves. Jerky, but moving. He fights and fights and has never shown a moment of weakness.

They tell me he has half a heart but he has more heart than anyone I have ever known.

I am privledged to have his back.

Hate

2007-09-11T22:57:00.001-04:00

I dont know how to explain it but there is a look a very sick person has in their eyes that tells the story of their sickness. Not the look of pain - that's a different look. The look of sick.

Last week Jake had the look of sick. And the look of pain. The video was the best he felt all week, and it was all too brief.

Now he only has the look of pain. He has such a fire in his eyes that I gotta check to make sure I havnt spontaneously combusted.

He hates me. He is so well he has energy for hate.

I couldnt be happier.

The Good the Bad and the Boring

2007-09-10T01:22:00.000-04:00

Im trying to stay positive and all your prayers and good wishes must be working cause I havnt lost it yet.

Here's the latest: the horrible neck infection is clearing up. Those creeping edges that were expanding onto his chest have receded until now it is only the hot red center in the fold of his neck.

His heart is doing great.

Yesterday, he actually laughed.

(In case this YouTube video of Face doesnt show up on the web you can view it by clicking the title of this post.)

He has definite stroke-like symptoms in his face and left arm. I believe it must be a new stroke, since his face has never been effected before. It makes his smile lopsided and hard for him to chew. His left arm is just - there. I'm sure both will respond well to therapy.

He developed a high fever last night which means some sort of infection which normally would not be too worrying except for... Deep breath... he is leaking too much fluid from his chest tube. My 10.4 kilogram baby is leaking 1500 ML a day - 3/4 of a 2 litre of diet coke. Only it's not diet coke, it's fluid (and tissue that sometimes clogs up the tube and looks like ewwwwwwwww). The real danger of the fluid is that it is taking along all his nutrients with it. If it doesnt slow soon he will starve to death, in a manner of speaking. So tomorrow, they are opening him up again to cauterize his thoracic duct.

As an aside, I have to tell you that everytime they say that to me a little voice in my head starts saying Duck? What duck? I love Groucho but it makes it hard to keep a straight face.

Ahem. So, first they are going to detour him into an MRI whilst he is sedated so they can view his cranium to see about stroke stuff. Then they are going to wheel him into the OR, spread his little ribs, puncture his little muscles and burn stuff. They say it really hurts. Afterwards, that is.

In between the great bouts of absolute terror are the other parts. The parts where it takes me 2 hours to get my hair combed because it takes so freaking long to get anything done. Like this -

Face needs to get changed. Get diaper, wipes, diaper cream (and every two hours the thermometer). Speak soothingly while putting the bed into a flat position. Clean off the disgusting, (temp here if needed) cream, new diaper, bed up. Get new chuck (a pad with plastic on the back for leaks). Lift baby and change chuck. Raise bed. Position baby, who is now irritable or sad. Give bottle. Sooth. It has now taken you 10 minutes to change 1 diaper.

If your not impressed by the 10 minute diaper, consider this. He gets a full workup every 4 hours - blood pressure, temp, pulses. All require hand holding and possibly singing. Medicine, endless medicine. Vancomyicin, 2 lasixs, digoxin, full IV fluid, xylicon, oxycodone, Tylenol, sodium chloride, sodium citrate, albumen, fresh frozen plasma. When it's by IV it means that when it's done a loud LOUD bell will ring. It's louder than the heart monitor alarms, a fact Ive never understood. When it's by mouth (about 12 a day, 4 times) it means facing the inevitable refusal, the sometimes choking, the unhappiness.

Then there is the twice daily blood sticks, the IV flushes which he shouldnt feel but does, the blood draws from his existing line which he shouldnt feel but does, the twice daily x-rays. The exams at least once a day from his neurologist, cardiologist, dermatologist, cardiac surgeon. None of which are concurrent.

Dont get me started on how long it takes to bathe a kid attached to so many tubes and lines. Before the bathing, miscellaneous glue removal (1/2 hour minimum). After bathing, full body cream with two different kinds of cream.

I also try to cream his body at least 2 other times a day because the air is so dry in here.

3 times a day his neck has to be fully cleaned and antibiotic cream applied. It's way less fun than it sounds.

The there is the constant food ordering fiasco. Im trying to stay in a good mood so Ill skip it. Trying to feed Face, who has a hard time chewing. In between meals all he wants is water ice. Constant water ice fed to him.

So thats my day. And night.

I try to get him out of bed as much as possible. At least into his carriage for a ride around the hospital. He can be off of his chest suction for 1/2 hour so that is our limit. (The rest of the stuff is attaches to the carriage if you were wondering). We make the most of it. It takes about as long to get him in and out of the carriage as it does to ride around the whole hospital.

I decided that I love the word perambulator. I have taken to calling the stroller that. It has the added bonus of making J crazy. You have to really like someone to be cooped up in such a small room for days on end. Sometimes we get on each other's nerves (perambulator) but we miss each other when we arnt together.

It's 2 AM and Im trying to remain positive but I have to admit to a teeny tiny bit of apprehension. They will come for Face in 4 hours to cart him off for yet another operation. I will cry again. I will stop crying. J and I will wander around as if we lost our keys until they call us to tell us he is in post-op.

Then we will start this crazy roller-coaster again.

I'll let you know how it goes.

Devestated in Philadelphia

2007-09-04T23:50:00.000-04:00

I was trying to remain positive, to think myself through to the end. Handing him over to them AGAIN so he could be anethestized made me cry.

I havnt even mentioned that they think he may have had a small stroke because it hasnt effected him cognitivly and the rest is all just physical therapy, baby, more and more of the same. No, I shrugged off the stroke with just a slight bewilderment that my life has come to the point where I shrug off strokes.

But today, when someone finally came to look at his neck. It was The Straw. His neck is not brokendown. It is infected by the flesh-eating staph. On his neck. And just centimeters away from his freshly-cracked chest.

I am terrified. I want to curl in a little ball and cry all night. I want to find the nurse (and I know exactly which one it is) who did a really crappy job cleaning him. I want to hurt her. I want to hurt myself because I saw her do a crappy job and I didnt call her on it or have a fit.

The good news for today is that Face probably isnt in a lot of pain. He is so very badly dehydrated that he has been unresponsive for the past 8 hours.

I. Fucking. Hate. This. Goddamn. Place.

1000 Words About Why Face Wont Talk

2007-09-03T22:01:00.001-04:00

Quick Update

2007-09-03T13:08:00.000-04:00

Thank you all for your prayers, wishes and emails.

Jake's surgery went great. The usual ups and downs. His biggest problems now are that the skin around his neck is breaking down which means it's basically a big open sore that constantly weeps fluid. He looks like someone tried to hang him.

He has horrid veins and none left that werent blown or infiltrated so they are going to inset a pic line for him (A permanent line surgically implanted).

Normally these kids have plureul effusions (fluid in the cavity between the lungs and the "outside wall". Normally, these effusions are about 100 ML per day. Jake is effusing 1000 ML per day and yesterday they turned in Chylis, which means they are leaking fat like mad. So poor baby has to go on a NO FAT diet - not one miligram of fat. Hopefully this will close up the drain. The amount and kind tho means that we are probably looking at a several week stay.

Awesome!

The problem is one of gesalt - everything effects every other thing. His heavy chest drain means no fluid to his kidneys. They give his plasma so his kidneys wont shut down and he swells up in his extremeties. So vitamins, then dieuretics to flush the swelling which interferes with the chest draining, etc. A vicious circle.

The only analogy (if you havnt nodded off yet) is that they are giving him food and then making him throw it up and hoping that he got enough nutrition for those few minutes he could.

I guess I blocked it out but the Fontan kids always have an easily discipherable look. It says Fuuuuck You! My face wont talk to any of us at all. If you talk to him he will look at you and deliberatly look away. It's the only control he has over his life right now and sometimes my heart just breaks for him. Open neck wounds, a zipper chest, 2 chest drains, nasal canula and skin that looks as if we worked him over. There is not a vein site left without deep bruises.

I wasted all this time taking him fun places and I neglected his cursing education. I guess he'll have time to learn since we are stuck here FOREVER (mom whine).

The only good thing is that I am far from the only mom who wonders the halls in socks, showerless, hair wildly askew having technical conversations. Nice not to be the only freak.

Ill try to update when I can. Thanks so much for all your emails and comments!

Random Musings

2007-08-15T00:21:00.000-04:00

I think I'm seriously losing it. I swear on all I believe that as I drove by a neighbors house there was a lion walking around in her front yard. A real lion. J laughed at me but I'm gonna check tomorrow again.

I think he forgets that New Jersey people are plumb crazy. All of us in some way are deeply nutso. Thus, the whole living here bit.

This neighbor, the one with the lion (I swear), already is on the edge of crazy because her estate is filled with crap and as I sit in traffic, inching by the front of her estate, I often wonder if her front yard is tacky or art.

She has a lot of frontage but you cant really see a house due to the massive foliage. You CAN see the retired old-fashioned fire engine parked along the driveway, the stuffed or very real-looking statue of a Dalmatian in the front of the yard, the massive iron gates which are never open topped by different gargoyles on each post in the gate and fence, fake wooden animals on various spots and lots of other crap I cant think of right now.

At least sitting at that light isn't boring.

But now she either (see my training, crazy=she, IBTP) has a real lion or I am losing my shit.

Which, I gotta tell ya, is not beyond the bounds of believable.

Ive been trying to live in sheer denial of Face's upcoming open-heart surgery on Aug 30th. My first clue that I'm not really fooling anyone was when I realized that my hair is falling out at a rapid rate. Not clumps (Yet) but enough so Ive had to clean out my brushes EVERY WEEK. Plus, my hair is EVERYWHERE. Every time poor Face eats he at some point is pulling a hair that got mixed in with his food.

That sounded more gross than I meant.

It's not falling into his food, he is picking it up from the floor and possibly his clothes with his food-encrusted fingers. Still gross but better than a mental picture of my cooking with little tufts sticking out all over.

At this rate I will be bald soon. Cool - I hear it's less fuss than the 2 foot 'do I'm currently sporting.

Ive kind of veered off my diet completely. When the W8t Watchers woman asked what plan I am following this week I told her "Whichever one involves copious amounts of french fries and ice cream." Would that I were kidding.

Even more sadly, I have not gained or lost any weight in 6 weeks. That's the good AND the bad news.

Face has been sick for 12 days now. I don't feel like going into the whole mess at all. I'll post you a pick of Day 8 -

Here is what I do all day (and night)

I start to lose track of days. And my mind. (Pretty sure it's in the freezer under the chicken but who knows).

Meanwhile, J is finally done the out-of-state portion of the movie shoot. He came home exhausted and miserable. I can hardly blame him.

The house that we were supposed to settle on on 8/6 - the people were in bankruptcy and never disclosed this to their realtor. They would have been left with no money and no place to live so they opted instead to stay in the house until they are evicted by the bank.

So no house for us.

The second house (we work fast cause we're desperate) is being sold by owner and is the exact reason amateurs suck. He cant sign a contract now because he's on vacation and oh, yeah, he told the renters in the house that when he got an offer he would let them try (again) to get approved for a mortgage so they can buy the house. See the fiasco in the distance?

Our realtor said he never in all his years had even one of these situations come up, nevermind two, and that we must be the unluckiest people in the world. Natch.

[Note to the powers that be: if you are taking all our luck to use at the end of the month we are good with that. Really. Take it all. I'm even willing to throw in a few broken bones.]

The true surreal life: I threatened my teen with taking away his computer and his phone unless he...

A) Studied and got good grades
B) Did his chores
C) Was respectful

The answer is... Dates.

That's right, I told him he was going to date, or else. I'm looking around for the log lady*, you bet your ass.

After putting up his MySpace page he violated one of the only two restrictions I put on him 1. I get the password and 2. He is not allowed to be friends with anyone he doesn't know personally in real life. #2 was apparently down the tubes the first week and in that time he fell in LOVE. Sigh.

With a girl who lived in Maryland, moved to Germany and in a year is supposed to come live in NJ. An Army brat. I tell you this as if I believe it, as if I haven't read Terror the riot act about how people online are not real in any meaningful fashion, blah blah. Might as well talk to the wall. I didn't even bother to try and convince him that he wasn't in love with this girl.

I remember THAT much about being a teen.

In the meantime, their (apparently she calls him from Germany) love affair is online and on the phone and their plan is to not date until they can meet in person, possibly 18 months from now when she moves to NJ. I nixed that plan. I gave him a loooong lecture about life and love and online dating and long-distance dating and even used the whole "if you're meant to be together you will be" line.

I'm sure he listened to about .005% of it but my threat came in loud and clear. He will date or lose his stuff. He's on the football team, honor roll, and he's a good kid so I cant imagine that he will have a hard time finding a date. Even if he does it and hates it it has to be better than letting him go thru with his crazy plan. Right?

Parenting sucks.

I have a hard time speaking about anything good I do. It's a lot easier to tell you all the bad or annoying crap. I do that in person too. I'm trying to get better, so Ill tell you what I did with my heart group.

I was very upset when no one responded to my request that usually draws a plethora of them. I considered leaving the group entirely. I was very hurt. Then I decided that maybe I hadn't been as much of a friend as I could have been.

I don't respond to posts if I don't have advice. I would never want someone to post a request and get no response so I started responding to everyone. If I didn't have any advice I just sent encouragement or a kind word. The very first week I was rewarded by another mom who told me that just responding and wishing her luck made her feel like a great weight had fallen from her shoulders and helped her immensely.

So there, I'm not a total bitch all the time.

Today, I WAS a bitch. I only cried a little so far, when I got the folder they sent for Face's "visit" this month. Mostly I have filled my days with the 3,011 things that need doing around here. Including the weekly round of phone calls to billing centers for various health agencies who have sent me bills. Bills in error, bills that need to be re-sent to insurance, bills that make no sense. Once a week I take a few hours to clear up whatever bullshit I have for that week. With some providers, I swear this is basically the conversation:

Me: Hi, this is [give 100000 verification bullshit codes, addresses, whatever].

Them: Hi! I see you have a balance of 2 gazillion dollars. How would you like to pay for that?

Me: I don't really owe that, it's just [insert whatever fuckupery applies]. I call when I get a bill so you can put another hold on the account.

Them: Let me just check this here.

:::Lame muzak for 10 minutes:::

Them: Hi, Girl. Okay, you are right about all that. Ive made a note in the file and it's on hold until the [insert fuck-ups] check it out.

Me: Thanks.

I deal with about 20 different companies lo, these many years. A week ago I get a bill from a company I never got a bill from or purchased anything from that says "Adjustments $1405.90".

Seriously, even if you heard of the company would you pay this bill? For "adjustments". What?

So I call and get this total bullshit runaround from this guy who was so fucking self-righteous and stupid (they go together like a horse and carriage) that I wanted to bang my damn head against a wall.

AFTER I give him every passcode - J's SS#, address, acct # he tells me that he cant discuss the bill with me unless I download a permission sheet from the Internet, have J sign it and send it back EVEN if I am the mom of the patient. Fine, I tell him, I don't want to discuss it. I want you to send J a detailed bill.

He tells me he cant send me a detailed bill unless he gets the signed consent form.

I tell him I DON'T WANT THE BILL. Send it to J, which cant possibly violate HIPPA because it's J's bill. He says he cant send it unless I verify the address. I tell him that makes no sense. If you would send it to any address than ANYONE could get it. Just send it to J. At the address he already sent the first bill to.

He tells me he cant do it unless I sign the permission form. I tell him I don't want to discuss ANYTHING just send J a detailed bill. He tells me that even talking to me is a violation of HIPPA (now that we've spoken for 25 minutes) and he is "disconnecting."

So I tell him "I hope you burn in hell."

Really.

Then I hang up and burst into tears and cry my eyes out because I am afraid that my son is going to die in 2 weeks and instead of being able to enjoy the time with him I am talking to incompetent assholes on the phone and being so stressed out in general that I say horrible things I don't mean and feel bad about.

!Losing it!

And tomorrow, I'm going on a lion hunt.

*This log lady reference is from the short-lived surreal show Twin Peaks where in many "town" scenes a lady would be sitting/standing/being a townsperson while holding a log in her arms like a baby. She was never referred to in any way by anyone in the show - or explained. The phrase was code to my sister and I for "Suddenly I feel as is my life has become surreal entertainment".

UPDATE: The funniest part of trying to spot this lion is that when I tell people I saw a lion they give me that sideways look but when I tell them where they go "Oh, yeah, that's possible." Just so you guys know, Im perfectly willing to concede it was a large dog or something but no one has ever seen a live animal of any kind there.

2007-07-30T23:58:00.000-04:00

Finally! She posts again. I know, you're relieved.

We found a house. We are settling on August 9th... maybe. Nothing can ever be easy, right?

I have a heart mom "support" group that I have been a member of for 2 years. I have sent plenty of supportive emails and answers to questions that I knew. So I asked a general question that usually sparks a huge response and I got... 1 reply. Sadly, it only serves to confirm my negative views about so-called Christians. And women.

We will never get anywhere if we continue to form cliques. The sole purpose of a clique is exclusion. But whatever, I was very upset for a day, then I got over it.

We had Face's 2nd birthday party. It seems impossible that he is two. Here's my favorite picture even though it's not actually from his birthday - it's from his friend's birthday the day before. This picture cracks me up. Keep in mind that I'm weird. And simple.

Here's a pic from his actual birthday. You cant see my horrendous fatness so therefore I will post it -

I will try to post in between moving, school, & surgery. But I make no promises and tell no lies.

Why Wont Blogger Fucking Work

2007-07-17T01:43:00.000-04:00

This is a test. If you read the post before this you should be laughing knowingly at the fact that blogger will not work right tonight for me.

But the post before this is only showing up if you look in the archives, not on the page. Sigh.

That Kind of Day

2007-07-16T23:59:00.001-04:00

I could write a really long post about all the things that went horribly wrong today but instead I shall provide you with an illuminating example. Ever so much better, yes?

They called the other day to schedule Face for his next open heart surgery. Even though you are ready for it, you are not, really, ready. Your mouth is dry, you cant think about what they are talking about.

So I agreed to a pre-visit appointment at 8 AM. A pre-visit is when they get all your insurance in order, all the messy details, they go through the procedure of everything with you. You get to go home afterwards with a time to come in the morning. (In case you wondering the next morning will be the cardiac catheterization, admittance to the ICU, then the open heart the next morning). Like dominoes.

So I jumped, without thinking, at the first time she offered. Which, as it turns out, was the worst possible time in the world. Even a half-hour later would have been fine. So today, on my to-do list is "Call to change appointment time". So I do. Here's what happens.

I call Juan, who transfers me to Cardiology Scheduling whereupon I pick Option #4 (talk to someone/rotary phone option), tell some guy why I am calling. He transfers me... back to the operator. Darryl, the operator, transfers me back to Cardiology Scheduling whereupon I pick Option #1 (Scheduling new patient appointments) and speak to Renee who is going to transfer me to the department I need which as it turns out is called the pre-visit department. She transfers me - to a voicemail that says (I swear I am not making this up) "The person who you are calling Blah BlahBlah is out on medical leave indefinitely. Please call back later." When indefinitely ends?

I call again and by happy chance, get Juan again who listens to my story and my desperate pleas to be transferred to someone who can actually help me and he transfers me to... Cardiology Scheduling where I pick Option #1 and get Glenda and tell her Renee transferred me to the number of someone out on medical leave indefinitely and could someone help me out here? Glenda transfers me to Renee who puts me on hold while she checks it out then comes back to give me a number to which she cannot transfer me ("it's an outside line") but is the number where I need to call.

I don't know whether Renee didn't give me the right number or I wrote it wrong or what but there is no help there (no nothing there).

I call back and get Inez and explain that I need the number for the pre-visit office for Cardiology and Ive now been transferred a gazillion times too many and I would like someone to actually like, help me, and Inez only has one number but wait some more and she'll check okay she's gonna transfer me... to oncology department voicemail.

I call back and get Juan and am slightly less polite about my grievances in trying to get some number somewhere that might lead to the magic scheduling computer obviously located in an alcove at Station 9 1/2. Juan transfers me to his supervisor who, so he tells me, knows everything. This "outside number" to which I refer does not exist, has never existed and is obviously a figment. He knows because he knows every outside line and by the way - do I know what a pre-visit is for? I'm taken aback and I'm like what? So he starts telling me what a pre-visit IS and babbling something about other locations. Whatever, dude. Ive done this a million times before. Then he tries (and this kills me) to say that I am the one who is confused while telling me the whole reason for this fiasco "Ma'am, ever since we changed the whole billing system people have gotten very confused about who they are supposed to talk to." He meant people like me. What he SHOULD have said was "All the people in the hospital don't know who you need to talk to." which would have been both right and accurate. This guy is the expert though and he's gonna help me. He wont transfer me to anything but a live person, the exact person I need, just hold on a sec...

Financial Services. Options Menu. I wait, and a live person proceeds to tell me she is totally confused about why I would be transferred there because they have nothing to do with pre-visit and she cant transfer me back to the operator because (meaningless bullshit which means "I don't know how").

I call back and get Sheila who is quite insistent that she can help me. When I ask her if I can speak to her supervisor who I was just speaking to she tells me that he just left for lunch. That fucking rat bastard. But she can definatly help me. She'll help me while she sighs at my rudeness in making it clear that I doubt anyone in that hospital is capable of helping me. She makes it clear that my story about being transferred is, at best, highly exaggerated, at worst, a lie and/or my fault. But she's gonna help this stupid schlub anyway cause she's awesome.

She sends me to cardiology scheduling.

I'm laughing right now as I type this but I was not laughing then. I was wondering if I would ever laugh again, actually.

I get Glenda (my old friend from above). I explain about the number Renee gave me last time and she tells me she'll give it to me again. She gives me a completely different number. I tell her it's not the same number because I can tell from the exchange it's an inside number and Renee gave me an outside number and she says she doesn't know what Renee gave me but she swears it is the number for pre-visit scheduling and she's even gonna transfer me and she does and I...

get a guy from PRE-VISIT!!!!!!!!!

Who tells me he's just a fill-in, everyone from pre-visit is off for two-weeks so while I don't have to worry about anyone getting ahead of me appointment-wise he cant actually, like, re-schedule me, but he will take my name and number and have the Pre-visit supervisor call me back tomorrow and re-schedule me.

I gave it to him. And I believe someone will call me. Cause I'm a hopeless romantic like that.

That was a small taste of my day. How was yours?

The New Normal

2007-07-05T13:48:00.000-04:00

Jake is in the beginning stages of congestive heart failure at this point. It means that no matter what I want, he needs his next operation.

Damn, for a second I really thought I could be Master of the Universe. I look so hot in the tights.

What it means in practical terms is that some of his other body functions have slowed down, in particular his intestines, to the point of ridiculousness. He is so bloated from back up that his lungs are being squeezed out by his stomach. They kept showing me x-rays of his stomach going – “do you SEE that?”

Uh, no. I have as much of an idea of what a baby’s stomach looks like as I do his pancreas. None. And by the way, my least favorite medical phrase is “I’ve never seen anything like this!”

He was already on a laxative but now he is on the maximum dose. He is also on his way to a school-aged child’s dosage of Benefiber. He has swelling in his ankles from excess fluid, making walking tougher. Just when he finally learned!

In keeping with his old-man image, he gets winded easily and after a little exertion he is out of breath. Doesn’t slow him down a bit of course. He also grunts getting up, down or bending over.

So I’m torn between hilarity and sadness. Hilarity at my old little man and sadness, cause he doesn’t realize this isn’t the way it’s supposed to be.

He is also VERY cranky. He wants to do so much but he gets so out of breath and tired that he cant, so he gets frustrated.

Now the next operation cant come fast enough. I cant help him, only they can. My sweet little man.

Welcome to the new normal – hopefully only good for 60 days until a new, better normal sets in!

Bleegh

2007-06-16T23:28:00.000-04:00

Can I just tell you that I'm learning this new language against my will. No one tells you that you have to learn a new language just to find a house.

I think I'm also smoking pot in my sleep. Not only do I have, like NO memory, but I'm becoming paranoid. And neurotic. Alright, so I was always neurotic, shut up.

My realtor is also my cousin and I guess we really haven't seen each other, except for the occasional family function, until last year. His wife was on bed rest so I visited a lot, brought groceries, tried to help out. I was kind of excited.

The downside to having a kid with problems is the isolation. Most of my so-called friends deserted. And forming new friendships is great all the way up until I tell them about Face. No one knows what to say, or how to act.

The friends I had left because they couldn't take my reality. I could say "Yeah, we were in the hospital last night. The baby has respiratory distress and well be here a few days." Then I'm ready to talk about your job or something I bought or whatever. But it's like they cant make that transition into sickness as a fact of life, they are horrified. So then I either have to modify everything I say or not talk. And what kind of friendship is that?

So I was really excited. I thought MB and I could be friends. I already like my cousin. They live close, they have kids. MB and I have some sort of bad luck - every day we plan something goes wrong.

My cousin, on the other hand, I don't know what the deal is. Every time I say something personal he doesn't respond. I thought maybe it was just him trying to separate work and play but I cant help noticing the difference.

I wrote him an email about a house I like and then told him MB was great (she had helped me with something) and Happy Father's Day, he was a great dad. Love, that girl & J. And he wrote back about something I have to give the mortgage company. Thanks, him. No personal remarks, nothing. It's weird.

Is it possible to smoke pot in your sleep without buying or owning any? I'm paranoid I tell ya.

At my son's graduation last night, a teacher was helping to direct people traffic and a gaggle of girls came walking up, gowns open, boobs barely hanging in to short little dresses, hooker shoes. I must be old because while I remember dressing like this senior year, isn't 13 a little young? I know, whatever dinosaur.

As the gaggle approached, all "Hey Mr. H" in that girly chorus he says "Girls didn't look like you guys in my day." One of the girls opened her robe the whole way and he said "Smokin!"

Is this appropriate? Someone answer me. I thought it completely and utterly inappropriate but none of the other adults around even raised an eyebrow and of course the girls all laughed.

I swear I'm losing it.

Things to Think About

2007-06-15T01:35:00.000-04:00

I am searching frantically for a house. We are down to the wire. We have to be out of here by September 1st. We are buying a fixer-upper so we want at least 3 weeks - we have to settle on August 8th. So that leaves me about 3 weeks to find a house.

No sweat!

On a little "yeah me" note, the five week summer psych course - Im aceing it. WOOHOO! Of course, I study a lot also.

I cant seem to shake this sore throat. I sound like a frog. On the other hand, I can do an awesome Fiona Apple impression.

I lost 21 pounds, which was 10% of my weight. And before you think to smart off - when was the last time YOU lost 10% of your weight? That's what I thought. I cant help but feel like Im turning back time. Hopefully, I can mirror it. My goal was 8 pounds a month (I have 2 weeks left in this month). The last time I was this weight was in June, 2005.

I remember when I got weighed in the OBs office thinking "okay, 11 more weeks. I can keep it under 200." Then the horror of going in the next week and being told I was 205. I knew right then I was having the baby. I started crying. I pretended I was crying because of my weight. I didnt want to scare J. But I knew.

My theory about the whole weight gain thing is that the first 20 pounds - before I even knew was because I think my metabolism just shuts down when Im pregnant. I dont eat more, I just gain like I do. No matter. Ive now turned back the clock. I am the same weight I was in June of 2005. If I lose 8 pounds a month by December 2007 I will be the same weight I was in December 2004. And I get to keep the baby!

The job situation is getting hairy. I need about 30 more hours in each day. If I finish filling out the 2 tons of paperwork before June 30th I can get a $4000 grant for school AND continue my unemployment. So worth it. Now - to the paperwork!

And what I am really really really trying very hard not to think about is the possibility of Face's open-heart surgery. Sont let anyone lie to you about kids resilience. I swear adults feed each other bullshit so much they've forgotten how to tell just by the smell of it.

This is what it is like for your kid to be in the hospital:

Nuff said.

In His Own Words

2007-06-13T23:34:00.000-04:00

I know I know, I suck - I swear Ive been overwhelmingly busy. But here's the Face to tell you all about it. (Click on the title)

A Day with Grandmom

2007-05-18T17:53:00.000-04:00

It starts off with lunch. Our monthly lunch that was her Christmas present. This time I am going to have to be tactful and very careful about what I say - neither of which is a strong point.

My uncle was gonna throw away all the stuff in her house. I rescued a lot of it, both because I wanted some memories, and because a lot of it could be sold. No one else bothered to help or was interested. They said - you want it, YOU do all the work. So I did.

Of course, they didnt tell her they were gonna throw everything out. They didnt tell her that they decided together that anything she gave them they would accept and then throw out. But when she had a fit they told her I was putting stuff in storage, acting like I was doing it for her rather than for me (and to save it from the trashman). So she keeps telling me "When you get a chance, get the ---- out of storage and give it to so and so."

So I now have to walk a fine line. Ill be happy to give anything to anyone in the family who wants it but I am not gonna give stuff to people so they can throw it out. They pay her own money and pretend it is for stuff they gave to their friends. So now I have to either lie, be really careful about what I say, or start some family trouble that will blow everything wide open.

So no more just for fun lunches.

At lunch she hands me coupons that are no good so I ask the waitress to pretend they are and pay her the difference. She gets upset with me because I dont dip the french fries in ketchup before letting Face have them.

She wants to go to Boscovs to shop. In three minutes she has 3 shirts. I discover my son is a dreaded "runner" - a kid who runs the second you put him down in public.

"You going to try those on?" I ask.

"Nah, I know my size."

She tells me she doesnt have her checkbook and could I pay and she'll pay me back. I pay by credit card and we leave. As we walk out, she asks "Can I return these if there's something wrong with them?"

"Dont worry," I reply, foolishly thinking the fact that I paid on my credit card was her concern, "I'll take you if there's a problem."

We are not out of the parking lot when she pulls out her blouses ($80 for 3!). "I wonder what these are made of" she muses "Cotton? Nobody wears cotton anymore! I dont want to iron anything."

I say nothing. Really, what's the upside of freaking?

As we drive home she points to a driveway three lanes over and 10 feet away ' - "Oh I have to go there!"

I pull in, no doubt pissing off plenty of people. She tells me that this store is selling a cane she wants.

At this point Ill mention that I damaged my hand cleaning out her house. I was really scared I did something permanent. I have no insurance and I need my hand. My right hand. Whatever I did meant I couldnt use it to pick Face up, I had to use my wrist and my left hand. Compensating for an injury is tiresome. Making me even less happy.

I find the cane for her. It is the MOST hideous thing Ive ever seen.

"Now no one will confuse it with theirs." she says. As if that was some huge problem. Hid-e-ous, people. No one would steal this, nevermind pay for it.

We get up to the counter. I push the cart with Face past the cashier - grandmom is in line with her cane and a small duck holding jellbeans. She places the duck on the belt. A few minutes later she turns to the man behind her and says something I cant hear. He shakes his head. She turns to the cashier and says "Why did you take my cane? It was mine, not hers!" (points to the lady walking out the door)

"Ma'am, it's in your hand."

No apologies from gram! The man behind her is very nice "I do that all the time" he says.

The cashier rings my grandmom up and when my gram starts to put the cane into the man's cart she says "That's not yours."

"I just paid for it!" Snaps gram.

"The CART isn't yours."

Gram starts toward me as I thank the genes I dont blush. We are 5 feet away when, no doubt thinking she couldnt be heard, my grandmom says "That cashier is so grumpy! She always has been, every time I come here."

I am soooo glad I dont embarass easy.

On the way home, I feel bad about how Im feeling and ask her if she'd like to come to my house for Mother's Day (my parents went out of town and my uncle would never). "Let's see what other offers I get," she replies.

Seriously.

I take her up to her room and as she is writing me a check for her blouses I look around. You have to understand that she has two sons - my dad and uncle. Who she calls "Jimmy and MyBobby". Really. I used to think that was his name. Mybobby.

In her room there are pictures everywhere. Of Herbobby. His 3 grown kids. Her 3rd great-grandchild by one of Herbobby's kids. Multpile pictures. Everywhere. Not one of my dad, my mom, me, or any of my sibs. And one pic of the 2 great-grandkids I gave her. Together, of course, lest she have to waste another frame.

I saw her write the check. But she never gave it to me. She thought she did and I let her think it cause I already know we will be taking the stuff back so Ill just float her the money until then.

Of course this meant I had to borrow gas money but whatever.

Turned out it wasnt my grandmom but the universe that day. As I was telling my woes to J on the phone as I drove (yeah, yeah). Face was wailing, as is his wont, everytime he wanted to be given another jellybean.

So I pull up to the light and this 20 year old guy is hanging out of the passenger side of a van.

"Lady, is your baby crying?"

"He was crying a minute ago." I said. "Why?"

"I just think it's a shame. Your baby is crying and you're on the phone."

God, if there is a God, has some 'splainin to do!

Hello Old Friends

2007-05-15T10:58:00.000-04:00

I was forced to close my Diaryland blog due to overwhelming spamming. Diaryland was no help. They still haven't even answered my request for help.

Eventually, I guess I'm going to have to copy all my posts to keep or to put on this site. Sigh.

I really should call my blog It's On My List.

So for all you fans who wondered where I went (many are my legions). I went home. At the same time I was being spammed there was a big brouhaha at work. I allowed myself to be laid off, and now I'm home.

Of course, home just wouldn't be home without The Face. He was sick for 9 weeks. 9 weeks straight. 9 weeks in-and-out of the hospital. First, the dreaded RSV. That was 3 weeks. Then RSV (reprise in G minor), para influenza and an ear infection. All together. On the fourth day he was being treated for all 3 things, with breathing treatments every 4 hours and 27 doses of medicine 11 different times a day he woke up - with pink eye!

Seriously, are you kidding me?

Only my kid could be on a ton of antibiotics and steroids and still come down with pink eye.

By the way, one of the more fun things in life is to administer eye drops to a toddler. Right up there with bone marrow extraction.

In April, after months of telling me everything was under control, my parents finally asked for help cleaning out my grandparents house. I went there to find pretty much not a damn thing done. My grandmother, a QVC junkie hoarder, had more possessions than 17 people. Unopened boxes of appliances I didn't even know existed. ( An appliance that makes toast & eggs at the same time!!!)

My uncle proposed we pay the new owners to keep everything. He wasn't kidding. I guess I have a New England soul because I rebelled against giving away (paying for!) all of this stuff that could be sold for a profit. Of course, I have neither the time nor the ability right now to sell it. My uncle said - you have three weeks.

So three weeks of backbreaking, hauling, and moving later I sent a ton of stuff to the trash, a ton to Goodwill and another ton into my storage space. I found a painting that could be worth a lot of money. Funny how everyone cares about her stuff now that Ive done all the actual, like, work. On the bright side, Ive lost 10% of the weight I need to lose.

Now it's May and I gotta tell you - I was never cut out to be a stay-at-home mom. At least not for just one kid.

So Ive decided I have to make time to blog everyday to keep me from going slowly insane. Not that insane is a bad thing - you just need the right kind of insane.

Having a tic - bad
Making mud pie with your kids - good

In this, the stay at home phase, I am trying to find another child to watch. I'm also preparing to go to school in the fall. And maybe 1 summer course. And trying to get a grant to pay for school.

And dealing with medical bills, and a sick kid. And an 8th grade graduation party and a 2nd birthday party and losing 80 pounds and buying a house in July and looking through a million houses and starting to pack and oh yeah - did I mention Face is going to have his 4th open heart surgery sometime in the next 4 weeks?

Basically, I'm saying it's same old same hold here at Girl's house.