Archive | April, 2011


No major developments to report today.  I woke up with a nasty cough and laryngitis this morning and got to feeling more and more fluish as the day wore on; I’ve had something coming on for a few days but had hoped it would go away if I ignored it.  Not so.  So unfortunately, I can’t even go visit Michael in the hospital now.  I was looking forward to taking the kids to see him today – which I think would do both them and him a world of good – now that he’s out of ICU, but that plan went out the window.  So I stayed home and finished cleaning up the garage and feeling a little sorry for myself and for us.

When I talked to Michael last night, he had developed a low-grade fever.  When I talked to him first thing this morning, he sounded awful and said he was having trouble breathing.  I got really worried – did he have pneumonia now?  I swear, one of my biggest worries at this point is that he’s going to develop some secondary infection or illness just by virtue of being in the hospital.  Anyway, I talked to his nurse later in the morning who told me that he is FINE, that his trouble breathing has to do with the pain from his incision.  She said he’s exactly on the path to recovery where they want him to be, so that was a relief.  I know they got him up and walking a little more today, so that’s good.  I’m so sad that he’s there alone with no visitors.  Apparently his doctor doesn’t think he’ll be home before Monday or Tuesday.

I miss him like crazy.  Even with a houseful of kids, there is a terrible Michael-shaped emptiness.  All the little things you take for granted become so magnified when they’re suddenly missing.  The kids miss him too and his absence is taking a toll on them.  I keep thinking about how Saturday started out as a pleasant, average Saturday.  We took the kids to the park in the morning, then I took Joey out for ice cream and sightseeing around town, Kevin went to a friend’s for a sleepover . . . never imagining that another smackdown was just around the corner.

We’ve had a tough time the last few months . . . coming back from cancer is harder and more complicated than a lot of people realize.  There have been a lot of factors putting a strain on things – health and financial concerns, depression and anxiety, conflict with extended family – and we’ve been faced with the fact that even the most solid of marriages stumble in the face of so much adversity.  We’ve only just started coming back from a pretty dark period, and now this, obviously a setback.  We’ll get through it, I know we will, but . . . well, it’s just hard.  Life is so unpredictable and often unfair.  I don’t want to crumble and become a bitter person.  I sometimes cry and throw my hands up and shake my fists at the injustice of it all, but I will not let myself lose sight of all we have to be thankful for.  Like friends who deliver food and flowers and booze to my house.  Seriously, so much love, so many good people.

We’ll get through this.

I Wanted To Cry, But All I Could Do Was Laugh

Okay, first?  I’ve have a cocktail or two under my belt.  Just sayin’.

So, really, what else could possibly happen?  Well, a burst water pipe that floods the garage and necessitates an emergency call to a plumber, that’s what.  I went downstairs to the garage for something this afternoon – I don’t even remember what, and I almost never go down to the garage because it creeps me out so much – and noticed water pooled on the floor.  My first inclination, in all seriousness, was this: “If I turn around and go back inside and pretend I never saw it, it’ll be like it’s not actually happening.”  That thought lasted for approximately 3.75 seconds.  But alas, maturity and responsibility won out, and I was forced to call Michael at the hospital – that’s right, I called my poor, recovering-from-major-abdominal-surgery-zoned-out-on-pain-meds husband like the ninny I really am and said, “What do I do?”  He instructed me to turn off the main water line and see if there was a loose connection on the water heater, which has actually been prone to leaking of late.  So I went back downstairs to investigate further, whereupon I discovered water pouring out of a hole in the wall above the water heater in the dark, creepy little utility closet in the garage, home to the rat ghosts.  My next thought?  “Fuck.” Clearly I had to call a plumber stat, and I’m already mourning the thousands of dollars this is going to cost.

The plumber, someone we’ve used before, was here in ten minutes (cue the Lone Ranger music).  Turns out it was this that caused the torrential flooding:

Wait, let’s get a closer look –

See that little pinhole?  That’s the sucker that wreaked havoc on my garage!  A corroded copper pipe.  Anyway, ended up only costing a couple hundred to fix, not a couple thousand.  We do need a new water heater, but that’s not the immediate concern, so.  It could have been worse!

So Kevin and I spent the afternoon dragging everything out of the flooded half of the garage (why, oh why, does my husband keep so many empty boxes?!?), and I swept as much of the standing water out as I could, and hopefully everything will dry out in the next day or so.

You know that saying, “When it rains, it pours”?  It’s become a comedy over here.  I mean, what’s next?  Maybe my truck will break down or one of my kids will break a bone.  Bring it on!  I’m feeling feisty.

I am, in all seriousness, in surprisingly good spirits.  I have so many good people in my life, and they’re all converging on us with food and offers of help, and just plain love.  I am a very lucky woman.

I saw Michael this morning.  when I got to his room, they had him sitting up in a chair, and while I was there, they had him get up and walk a little for the first time since surgery.  He’s doing as well as they expect him to be doing.  He’s still doped up and faded in and out while I was there. Later in the day, after I left, he was moved out of ICU and back to the regular floor, so that’s a sign of progress.  He texted me later that they put a PICC line in, which felt like a setback to me, as it harkens back to his cancer treatment, but in reality, I guess this is apparently the new thinking, that PICC lines are better than long-term IVs as far as risk of infection, etc.  I talked to him on the phone a little while ago and he’s developed a low-grade fever.  I’m trying not to worry.  He’s in good hands, right?

I miss him.

Out Of The Woods

I don’t know how long Michael was in surgery this morning, I just know that I got a call from his surgeon sooner than I expected to.  The surgery went well.  They located the obstruction and removed it, as well as some tissue that had died as a result of the obstruction, and put him back together, good as new.  After surgery he was taken back to ICU on a ventilator and various other accoutrements.  He’s been through a pretty major trauma, and his body needs to rest and heal, so a machine would breathe for him for a while, and various other contraptions would take care of various other tasks for him, so really, all he has to do at this point is enjoy the vacay.  Ha.  Ha.

I went to see him this afternoon.  Remembering how difficult it was to see him after his cancer surgery, whereupon I proceeded to have a sobbing-screaming-pounding-with-my-fists breakdown in my truck in the parking structure of the hospital, I steeled myself on the drive over this afternoon for how he would look, pale and helpless as a baby, hooked up to all kinds of monitors and tubes and whatnot.  It wasn’t going to be pretty, and I was going to suck it up and be strong.

So I strode – that’s right, strode – into his room, took one look at him with a giant tube down his throat breathing for him and various other stuff taped across his face, lying there unconscious, and broke down.  Of course.  The staff was so kind, really.  They must see this all the time, various next of kin coming in and falling apart at patients’ bedsides.  I was doing the hiccupping sobbing thing, and someone discreetly called a social worker to come talk to me.  She took me into a little conference room, sat me down with a box of tissues and proceeded to ask me all kinds of kind, caring questions while I bawled my little heart out.  She asked me about family.  I hate that question.  “I don’t have family.  We’re estranged.”  This is usually a fork in the road in new relationships – they either get it, or they don’t, and if they don’t, you can see a wall of judgment go up.  She said, “I’m estranged from my family too, don’t worry about it.”  Ahhh.  Okay, maybe she was lying to make me feel better, but I’m totally okay with that.

Michael’s car is still parked in the ER parking lot, since he drove himself there Saturday night.  I was looking for his keys and discovered that everything he came into the ER with – his clothes, his keys, his wallet, his phone – were missing.  His nurse started making phone calls to try to track it all down.  Then a doctor came in to look Michael over.  This was during my crying jag (maybe he was the one who called the social worker?),  and it came to his attention somehow that Michael’s personal effects were missing.  I told him the nurses were trying to track it down.  He said to me, “Let’s go find it. Come with me.”  And I followed him out and to the unit where Michael was yesterday.  He stopped at the nurses’ station and said indignantly, “Where is the charge nurse?”  He explained that my husband’s things were missing, in a how-dare-you-cause-this-woman-any-additional-anguish-by-losing-her-husband’s-things sort of manner.  I was a little embarrassed (because I really don’t think it was anyone’s fault), but also grateful.  One of the nurses at the station pulled a bag from behind the desk.  “This it?” she asked.  Yep, there were all his things.  Phew.

Anyway.  Michael was in and out of consciousness.  They actually took him off the ventilator while I was there, so that’s a good sign.  He’s on major pain meds and can have nothing by mouth for several days.  The surgery he had was very much like the surgery Finn had at birth, so a lot of this looks very familiar actually.  It’s hard to see someone you love like that – diminished, helpless, in pain.  Because he was intubated, he had a lot of difficulty talking, but he wrote on a piece of paper for me, “I’m here,” and “I was scared.  Shitless.”  That pretty much says it all.  I would have given anything to crawl into bed with him and just stay until he’s better.  But of course, I couldn’t.  I had to get back home to the kids.  And that’s tough, being torn like that.

He’ll be in the hospital for several days, possibly a week.  And after another major abdominal surgery, I imagine he’ll need several weeks to recover.

Friends are rallying around us, as they have in our times of need before.  Another crisis survived.  I am grateful.

Morning Update

In an attempt to preserve my sanity,  I turn to writing, probably revealing more than Michael would like me to, so I will just hope that he forgives me.

I was awakened at 5:42 this morning by the phone ringing.  Michael told me in a scratchy voice (because he has a tube down his throat) that he had been moved to ICU.  His symptoms had grown worse overnight, his vital signs were askew, and I guess some labs they did showed signs of trouble.  I got another call about an hour later from him telling me that they were taking him into surgery.  Holy fuck.  Suddenly I’m numb and panicky all at once.  And I swear to you, the moment I got off the phone with him, it seemed as if a blood vessel in my nose decided to burst because suddenly I had a major nosebleed on my hands.  I held my head over the bathroom sink while the blood flowed for five solid minutes.  I guess just my body’s little response to stress.

What to tell the kids?  I can’t fall apart, I can’t.  So just put one foot in front of the other, try to go about our morning business the same as usual.  I left Kevin in charge and ran to Starbucks to get a caffeine fix.  I should have gone to a different Starbucks, one where the baristas don’t know me.  I swear if one person looks at me kindly, I will come apart.

The good wishes and moral support are pouring in via Facebook and email.  I have to let people know what’s going on; otherwise I am truly all alone in this.

I got home with my jumbo coffee and made breakfast for the kids.  I haven’t told them anything.  They just know that Daddy is still in the hospital because something is wrong in his tummy, and we don’t know when he’ll get to come home.  Yesterday they were asking me if he would have to have an operation.  I didn’t know, and I told them so.  Now I know, but I don’t know what to tell them.  Daisy is being hit especially hard by all this.  Not surprising – she is our most sensitive, emotional one.  I am trying very hard to be patient with her clinginess and give her all the TLC she needs, even as it makes me feel as if I’m coming out of my skin.

The nurse in charge of Michael’s care called me, and I took the phone in the bedroom and not surprisingly, could no longer hold back the tears.  Is he going to be okay?  Yes, they think so.  The surgery is expected to last 2 – 4 hours, and he will likely be in the hospital for 5 – 7 days.

One foot in front of the other.

Day Is Done

The four littlest are safely tucked in bed, while Kevin and Joey watch a movie.  No change with Michael.  He’s still in the hospital, in a great deal of pain even though he’s drugged up on push-button pain meds, and as of an hour ago, he still hadn’t even seen a freaking doctor, just has the nurses looking after him.  No idea what’s going to happen.  I went to see him this afternoon and I’ll tell you, it was hard.  I would have stayed away if I could have; I would have been a coward if I could have gotten away with it.  I hate that hospital.  I know they saved my husband’s life a while back, but it’s wrapped up with so many bad memories for us.  He’s in the same unit now that he was in after his initial cancer surgery, and it all came rushing back to me when the elevator opened to that floor and I walked down that familiar hallway into the familiar-looking room, and found him there in bed, barely coherent or recognizable.  I stayed for a while and then made a run for it.  He was so out of it, I don’t think he had any idea how long I stayed.

Back home, life goes on.  There was still grocery shopping to do, dinner to be cooked and eaten, baths to be given, stories to be read, and fears to be soothed.  The house is quiet now, not so different from a night when Michael might work late or go to jam with his buddies at the studio.  But of course it feels different because he’s not working or jamming, he’s in the hospital, and so much feels unknown right now.


Michael is in the hospital again.  I’ve lost count of how many times he’s been in the hospital over the last two years.  Twice it was for scheduled surgeries relating to his cancer.  All the other times have been via the emergency room.  The last time was back in December, while the kids were on winter break.  Abdominal pain that grew worse and worse, two trips to the emergency room in one day, and finally a CT scan revealed an obstruction, and Michael was admitted and spent a couple days in the hospital while they attempted to clear the obstruction by non-surgical means.

And here we are again.  The familiar pain started up late yesterday afternoon, and it became clear pretty quickly that the plans we had for the evening would have to be canceled.  The pain grew worse and worse until finally he drove himself to the ER at 2:00 a.m.  Kevin had gone to a friend’s for a sleepover, so I couldn’t leave the other kids.  That, too – Michael driving himself to the ER, either that or my dropping him off there and coming home – has become routine.  At about 7:30 this morning, they did a CT scan and discovered another obstruction, and so now he’s been admitted and they will again attempt to clear the obstruction through non-surgical means.  I don’t know how long he will be in the hospital.  I imagine a day or two.

And here I sit, stewing in anger.  Anger at cancer for doing this to my husband, to my family.  Yes, the cancer is gone, but this is one of the many scars it’s left: adhesions from the surgery that removed the cancer.  Lest we ever get comfortable and begin to see cancer as a distant nightmare, these things rear their heads to remind us that cancer is never really completely gone.  It fucks with you forever.  There are physical scars and emotional ones, and they never go away, even if cancer itself is gone forever (and who knows if it is gone forever of just taking a little respite?).

I’m angry at Michael’s family for failing so utterly in their capacity to put aside their own selfish feelings and agendas and really be there for us during what has been such a horrific crisis over the last two+ years.  There, I said it.  I’ve never touched directly on the situation with his family publicly, but I’m tired of being respectfully quiet about it, of taking the high road.  They don’t even know what we’ve gone through – yes, WE – because a wall has been constructed as a means of self-preservation for our family.  I’ve been here!  I’ve experienced all the horrors of cancer and the aftermath – as well as ten years’ worth of other marital ups and downs – alongside Michael.  I’ve shown my devotion, my trueness, but I am dismissed as someone “evil,” someone who has “brainwashed” Michael.  I am angry, so angry, that we’ve had to go through this alone, without appropriate support, because the people who should be here for us cannot see beyond themselves.

I’m angry at all the people who throw around prayer requests like candy on Facebook and everywhere else, who believe there is some merciful god out there who takes a personal interest in anyone’s life.  Really?  REALLY???  Come on, people!

My kids are upset that Daddy is gone again.  They are beginning to get used to these incidents.  I know that I am supposed to be strong and stoic through this, but I’m having a really difficult time grasping any strong or stoic part of myself.  I’m tired, and so angry.


I’ve recently become acquainted with a new mom whose baby has Down syndrome.  She’s around my age, and like me, she didn’t find out until after her baby was born that he has Ds.  She’s having a tough time.  I struggle to find the words to say to her that might ease her sorrow, trying to reach back in time and touch on the words that might have eased my own sorrow in the weeks and months following Finn’s birth and surprise diagnosis.  I know that there is a part of me now that has often wished I could go back to the me then and say, “It’s going to be okay, it really is.”  But I realize, too, that the me then might have had a hard time believing that; I’m sure people close to me did tell me that everything was going to be okay, and although I probably knew they meant well, how could they possibly understand what I was feeling, how HUGE this whole thing was?  Everyone has words, many of them empty, even if well-intended.

Still, I am often very conscious of and just plain grateful for how far I’ve come between then and now.  I remember so well the grief I experienced when we learned that Finn has Down syndrome.  Down syndrome of all things!  All I knew of Down syndrome was that it was those odd-looking people I saw very occasionally whose eyes looked strange, whose heads often seemed a little too small for their bodies, and they all seemed to dress horribly and have awful, institutional haircuts.  But that was only the half of it!  All kinds of unwelcome information was foisted on me after Finn was born.  Mental retardation!  Sterile!  Loads of medical problems!  Therapy!  Special ed!  And the worst part?  It’s forever.

Although the raw fierceness of my love for my new baby never wavered, I grieved.  I grieved for the baby I had expected who was not to be, and I grieved for the life I had envisioned for him.  I was angry.  It was all so unfair.  There were moments when I felt like I was literally suffocating from the grief I felt.  I would sometimes close my eyes and wish as hard as I could that somehow time could be reversed and I could just go back to being happily pregnant, blissfully ignorant of all this heartache, with only a wonderful sense of anticipation and expectation and hopefulness filling me up.

It’s been almost three years since all those dark feelings flooded me.  I don’t know when things changed – I don’t think it’s a turning point that can be pinpointed.  I just know that time was the elixir.  Over time, the sadness and overwhelming fear dissipated.  Eventually, the heaviness lifted, and life became just life again.

And now . . . well, it’s hard to even find the words to describe how I feel about Finn.  The magnitude of my love for each of my kids often results in a physical ache in the core of me . . . but with Finn, it’s a little more complex.  There is protectiveness.  And gratitude.  And awe.  And so many other things I feel but can’t articulate.  I wouldn’t change him.  I’d change the world, how the world sees him – and I will spend the rest of my life working towards that, one person at a time – but I wouldn’t change him.  He’s different, yes, there’s no denying that.  But he’s not defective.

Michael and I find the humor in things concerning Finn – as with all our kids – (I’m not above telling Finn, “Dude, you’re not helping your cause,” when I find him chewing on his sisters’ shoes).  I give him mohawks and dress him in Jimi Hendrix t-shirts, because there’s no reason he can’t be as cool as anyone else, dammit.

Sometimes I’m still scared.  Sometimes the foreverness of Down syndrome still scares me.  I don’t know what Finn’s future will look like.  Will he ever . . . ?  I don’t know.  I try not to think too far ahead, because guessing at any of my kids’ futures, or even my own, is folly, and I realize that.

Being aware of how far I’ve come, though – having the vantage point of being on the other side of the initial grief – it’s given me this want, to reach out to someone newly sprawled out on this path.  But what I’ve realized is that everyone’s path is different.  There is no universal experience here.  There is a common thread among us parents of children with Down syndrome, but we are as different from each other as our children are.  Everyone deals with this experience in their own way, and there is no magic formula, no magic words, that will suddenly bring acceptance and optimism.  Only time does that, and everybody has their own timeline for healing, just like each of our children has their own timeline for learning and achieving.

I know that my new friend will get there in her own time.  Someday, maybe she will meet a new mom whose baby has Ds, and she’ll say to herself, “Ahhhh, I remember when . . .”  And she’ll tell that new mom, in words or deeds, that it’s all going to be okay.

Joey’s Project – Update

Joey finished his school project, a model of our local police station.  Here’s the actual police station:

Here’s Joey’s completed model:

There is no denying that it looks like it was completed by a third-grader with almost no parental intervention, but that’s as it should be, right?  As we arrived at school this morning, there were lots of other third graders arriving with their projects as well, some of them pretty elaborate models.  I’ll refrain from guessing how much parental intervention was involved.

Joey worked very hard on his project.  He decided on his own which project he was going to do, he stuck out his commitment, maintained a positive attitude about it (he only broke down crying in frustration once; the rest of the time, over the course of the four days it took him to complete it, he kept telling me how much fun he was having with it), and completed it a day ahead of schedule because he had a baseball game that he wasn’t going to be able to play in if his project wasn’t finished (he did have to miss practice one day this week to work on his project).  And I stuck to my commitment to not involve myself too much in it; I helped him with a couple of minor things when he asked for help, and that was it.

The biggest deal, in my mind, regardless of the grade he might get on it, is the sense of accomplishment he has.  I’m very proud of him!