***This was written and published with MJ’s permission.***

I hate this dance we do.

It starts with something small. Something barely noticeable. Sometimes it even masks itself as something positive. Like maybe you suddenly decided to clean the house from top to bottom. To the untrained eye that’s a good thing. But this isn’t my first rodeo and I know better. I know this was a compulsion you couldn’t control. An imperative mandated by the demons that echoes through the corridors of your mind until you comply. It would be fine if you wanted to make the house sparkle, but that’s not the case. You HAD to do it.

I try to shake it off by rationalizing that at least it wasn’t something harmful. Like the time I came home from work and noticed your swollen hand. You told me you got so angry you just started punching the bedroom door. Nothing specific caused your anger. Which is scary. And I won’t even get into the senseless arguments we have on an increasing basis.

The meds are losing their effectiveness. You know it and I know it. But neither of us want to admit it. This is, perhaps, the most insidious part of your condition. It’s certainly the most unfair. You work so hard to get things under control and find the right balance of medications. So many medications. It takes months and requires perfect precision.

“A little of this in the morning, the other pill at night. That’s not working? OK, let’s switch the morning and evening pills. Still not quite right? Take this pill two hours after the other ones and see if that balances things out? No? OK, let’s introduce this medication in 200 milligrams. If that doesn’t work, we’ll up the dosage. What? You can’t sleep at night because you’re wired? OK, let’s cut that back to 250 milligrams and here, let’s try this medication.”

It’s all trial and error and it’s all exhausting. While the doctors play with dosages and pill bottles until they find something that works, you’re lost. Not literally. I mean you’re still here in the house with me. But you’re not really you. Not by a longshot.

You’re an irritable, worn-out shell of the woman I love. You’re angry and picking fights despite my pleas to steer clear of them. Unfortunately you need a patient, understanding man. I am neither of those things. I’m argumentative and your nonsensical rants don’t compute in my black and white world. I know you’re wrong—hell, I think you even know you’re wrong—yet you keep coming at me.

You’re mad at me for meaningless things of little to no consequence. You’re mad at me for not letting you lie to your doctors. You just finished screaming at me because I don’t want to spend money we don’t have on converting the crib to a full-sized bed, as Will already has a twin bed. We don’t talk anymore, we battle.

And I know I should just take it and let it crash against me and wash over me like a rock against the tide. But I can’t. I’m not wired that way. The catch-22 is that I’ve begged you to be honest with me. To open up and tell me what you’re thinking. But when you do I’m horrified and hurt by the things that come out.

You want to leave. You don’t think you’re any good. You think we’d be better off without you. You consider harming yourself. You want to run away and disappear because you’re CERTAIN everyone is judging you. That particular paranoia floods your mind and heart to the point it becomes your truth, and no amount of proof to the contrary can convince you otherwise.

But the most troubling part is you no longer want help, because help means doing the dance all over again.

Hell, I can’t blame you. To have to feel like this every few years is torture. You spend months finding the exact balance of medication that allows you to function on a daily basis. Not to make you feel great, mind you. Just enough to get by. I can’t imagine hoping that the best case scenario is that my mood will stabilize at slightly below average.

If we get lucky, the meds work for awhile and that’s nice. It was a couple years this last time. But then it stops working and the demons return. Suddenly you have to start from scratch. And the upcoming months to find the right mix of meds might as well be an eternity.

And yes, I know life off the meds is enticing because you actually feel better. At least at first. But even though you feel like Superwoman off the medication it’s fleeting. You can’t live life in fast forward because you will crash, leading to life in slow motion. And I think we both remember how awful that is.

So we enter the fray once again. Not because we want to, but because we have to. It isn’t fun and I hate it. You REALLY hate it. But it’s important because I love you and I need you here with me. And Will needs you too. You’re his mom. You make this family tick and without you everything grinds to a halt.

My wife is in there somewhere and I want her back. I know it might only be for a year, maybe even less before we have to do this again. But it’s worth it. You’re worth it. It’s not fair that you’re saddled with this battle against yourself while your own mind tries to trick you and lead you astray, but this is the hand we’ve been dealt. And we’ll fight this battle again and again. However many times it takes. Because I miss your smile. The playful flicker in your eyes. And I’d beg, borrow and steal for the return of your laugh.

I miss my wife but she will come back to me. She has to.

***Edit: Little Leah passed away early on July 26 with her loving family by her side. Our thoughts are with her family. The world will miss you Leah, but thank you for leaving your mark of happiness, bravery and strength.***

Many a night has been spent by my son’s bedside, just watching him breathe.

All you parents have probably done the same thing. You’ve had a rough day and nothing seems to relax you. Work is crazy, you don’t see your family enough, the bank is sending foreclosure letters…whatever the case may be you feel like the walls are closing in quickly. So you quietly sneak into your kid’s bedroom late at night. You sit on the floor, put your hand on his/her chest and just watch.

Will’s rhythmic breathing never ceases to calm me down and make me smile. Watching his chest rise and fall and the look of complete serenity on his face is the most soothing thing I can think of on this planet. I’ve spent many hours by his bedside gazing adoringly at him and thanking my lucky stars I have him. I’m sure many parents are in the same boat.

But what if you went to your child’s room like usual, opened the door expecting to find a slumbering kid, only to find an empty bed?

What do you do when death comes for your little one?

It’s a question I mercifully have no experience with. But despite how unnatural and incomprehensible the death of a child is, it does happen. It happens everyday all over the world. It’s happening in my world as we speak, as 5-year-old Leah fights a prognosis that…well, it doesn’t look good.

Leah is the daughter of Rhiannon and Peter. I went to middle and high school with Rhiannon,  and my family has bought our groceries from Peter and his family for years. Although we lost contact after high school, we found each other on Facebook and that’s where I learned about Leah. I’ve been following their story—filled with excruciating ups and downs—since March. I wish I could tell you the story is shaping up for a happy ending, but as Peter and Rhiannon have so eloquently written to all of Leah’s supporters, the odds aren’t good. At all.

According to her dad:

“We started a treatment that is currently being used in a study in Austria. Leah has Neoplastic Meningitis. It’s deadly and chances of her survival are slim. Unfortunately that is our brutal reality. Still wish I would wake up from this nightmare.”

I looked up Neoplastic Meningitis on the Internet. I shivered when I read the results. Not that anyone should be trusting completely in information from the Internet, but if it’s any indication she has anywhere from 1-4 months. A fact that doesn’t even compute in my head because it’s so ridiculously incomprehensible.

I’m not a joiner or a do-gooder. Actually, I’m more of a selfish prick. But from the first time I saw Leah’s picture her story has captivated me and pierced me to the core. Perhaps because when you become a parent, you know how precious your kids are and you learn to love on a whole new plane you didn’t even realize existed. You join this unofficial club. And even though I hadn’t met her, it didn’t matter. Because all I had to do was look at Will and imagine what it would be like to have him taken from me. I have a panic attack every time I even consider it.

Unfortunately, when you’re dealing with aggressive brain tumors, there’s not much that can be done from an outsider’s perspective. All I could do was write about Leah, do my best to get them some play in the media to raise money for her treatments and bring them dinner. Although that was probably more of a punishment than assistance because I cooked it myself. Sorry guys.

I was so nervous going over there. But Rhiannon answered the door with the same beautiful and reassuring smile I remembered from high school. I got to meet Peter too, who I immediately identified as a kindred spirit when we started talking about atheism and how no “God” would ever be so cruel as to give an innocent 5-year-old girl such an insidious and deadly disease. Without a word, their son Lukas started playing with Will knocking balloons around the house.

And then there was Leah.

I actually didn’t get to meet her because she was asleep. When I walked into the house the first thing I saw was all the medications. It didn’t seem possible one person could possibly take them all, nevermind a little girl. Leah was curled up on the couch, taking a well-deserved nap. When I walked over to her my heart sank. She was so small and looked incredibly frail. She had lost her hair from the chemo and her thin face belied all the hearty smiles I had seen in so many pictures.

As soon as the tears started welling up I pushed them back down. Because the amazing thing about Peter and Rhiannon is their strength and grace. They have openly shared their ordeal with everyone, displaying class and grace the whole way. It’s been nothing short of astounding. So if they weren’t crying, I sure as shit had no right to get all weepy. Especially right there in their house.

Out in the car afterwards? Well that’s a whole other story.

The thing is, I thought about Leah napping and how they can go over and check on her and sit there and play with her hair. I thought about how I do the same with Will. But as Peter and Rhiannon bravely admit, the odds are they won’t have that option for much longer. Don’t get me wrong, they’re all fighting with everything they have and they’ll never give up. Ever. But they’re also intelligent and realistic. They’ve listened to their doctors and done their homework.

They’re preparing for what seems to be the inevitable. They’re thinking about the unthinkable. They’re unhappily beginning to embrace the notion of walking into that bedroom only to find it empty.

There are no words that can soothe a parent when death comes for your child. I can’t tell them I know how they feel or that it will be OK. It will NEVER be OK. It will be semi-bearable at best one day far from now, but that’s about it. All I can (and will) offer is unconditional support, although I’m at the bottom of a VERY long list of people who love them. And I can tell them how brave they are. How much I respect and admire them all. And how extraordinarily sorry I am for what they’re enduring.

I know everyone is hoping for a miracle, and they should/will hold onto that for as long as possible. But perhaps the only silver lining is no one has to look far for it, because Leah is the miracle.

She may not beat this wretched fucking disease that I hate with a passion, but from my perspective the courage is often in the battle. And the whole Fernandes family has it in spades. Not to mention a 5-year-old has galvanized a community both in person and across the Internet, affecting the lives of people she’ll never meet. That doesn’t make up for never being able to grow up and grow old—not by a long shot—but in my opinion Leah has shown more strength, bravery and backbone in her five years than some people do in a full lifetime.

No matter how this turns out, Leah will never be forgotten. Her character and spirit in the face of adversity will always be remembered. And when I lecture my son about the kind of person he should aim to be, I will tell him about Leah. And Peter, Rhiannon and Lukas.

And I will hope he turns out half as amazing as them.

courtesy of www.sickdaythemovie.com

I’ve been sick for a week with my third sinus infection in four months. And because I’m an idiot, each time I’ve been sick I’ve tried to beat it myself. Using a mixture of positive thinking, DayQuil and NyQuil, I set out to conquer my stuffy, congested demons. Which, of course, fails miserably and just delays my recovery time until I break down, call into work sick and go to the doctor.

But even though I’m miserable, the only silver lining is after I see the doctor, when I take the rest of the day as a sick day.

Yes I’m stuffed up, coughing and constantly hacking up green mucous. But at least I’m home on the couch. So while I’m resting, I’m enjoying a rare moment to watch whatever I want on TV. Whether it’s catching up on On Demand shows like Californication or my new favorite Shameless, I delight in being a total couch potato because I know I won’t have the opportunity again for ages.

This morning I couldn’t take not breathing anymore so I called in sick and prepared myself for the doctor’s office, and then a day filled with movies and TV. Until my plans changed rapidly.

“He’s got a fever of 101,” MJ said this morning. “Looks like you’ve got company.”

Most dad bloggers would lie to you right now and talk about how cool it is to have a day at home with their kid. But I, dear readers, am honest. And that’s why you love me. Or at least put up with me. So for the sake of transparency, I will tell you my initial reaction went something like this:

FUUUUUUUUCCCCCCCCCKKKKKKKKKKK!!!!!!!!!!!

Instead of watching Hank Moody hook up with beautiful, naked women on Showtime I’d now be sitting through Mickey & Minnie flying to Mars. It meant Timmy the sheep and Handy Manny would be gracing my TV, when what I really wanted to watch is William H. Macy & his family of hilarious white trash scam artists drop F-bombs and act out their shenanigans all over the Windy City. And instead of playing a few games of Bond wherein I get to shoot as many people as I want and blow them up with grenades and timed mines, I’d be trying to dodge landmines of my own when Will takes a huge dump in his pull up.

Look, it’s not that I don’t love Will. I do. But he’s a little kid. And when I’m sick, I’m even more of a little kid. I know I speak out against stereotypes, but in this case I’m a classic male. I turn into a whiny little bitch when I’m sick and I just want to be left to my own selfish devices. Except when I need something, at which point I attempt to guilt MJ into acting like my personal maid. I’m terrible.

But I can’t be terrible with a sick toddler at home.

The day started off rocky. Will kept saying “I want something dad. I want something.” When I asked him what he wanted, he would only tell me to come walk with him. I told him dad’s sick and resting on the couch. That led to tears. Which led to me yelling which led to more tears. Which ended in a timeout. For Will, not me.

Then we watched some TV. But apparently when a kid is on the brink of turning 3, he turns into John Madden. Which is to say he turns into Captain Obvious and narrates everything that happens on whatever TV show you’re watching, even though you’re right there and can see everything. Moreover, he makes me confirm it and repeat what he’s said for good measure. Case in point:

“Dada, Mickey Mouse in a rocket ship.”

“Yup. Mickey’s in a rocket ship.”

“Dad, Donald with Mickey in the rocket ship.”

“Uh huh.”

“Dad, Donald with Mickey in the rocket ship. Dad. Dad. Dad, Donald with Mickey in the rocket ship. Dad. Dada. Dada, Donald—”

“Yes buddy. Yes. Donald is with Mickey in the rocket ship. Gotcha.”

“Dad, where they goin in the rocket ship?”

“Hopefully they’re aiming straight for us.”

“What Dad? The rocket ship is coming here????? Yay!!! Tell Mama, Dad. Tell Mama Mickey is coming here in a rocket ship.”

“Oh boy.”

But after I got over being a selfish prick (and apologized for mistakenly telling my soon-to-be 3-year-old he was getting a visit from Mickey), we got out a book. Then a puzzle. And pretty soon we were having a ball. Granted it was begrudgingly, but it still ended up being pretty fun.

However, I can’t wait til he’s old enough to watch my shows and blow stuff up in Bond!

Will has been sick for nearly a month now.

It started with vomiting and diarrhea. Then it was a cough and stuffy nose. We called our pediatrician’s office after about 10 days of problems, and they basically told us it was going around and there was nothing we could do except to let it run it’s course. A week later he was still sick, so I demanded an appointment. When the doctor “examined” Will, it consisted of taking a temperature and poking twice at his stomach. That was literally it. Then he told me it was probably two viruses, one after the other, and that I should just wait it out and he’d be fine.

You have to understand, I do not have any medical training. Therefore, I treat doctors like infallible gods. I know that’s probably not the best way to be, but I can’t help it. I take doctors at their words and I trust them without even blinking. But our pediatrician was so dismissive of Will’s problems that it just didn’t sit right when he shooed us out of his office so quickly.

That’s when MJ turned into “Mama Bear.”

Will’s cold persisted and a couple of days later she called the pediatrician and lambasted him far more than I ever could because I’d be totally humiliated berating a doctor like that. Needless to say, we got some goddamn antibiotics after that. And they worked for a few days, until they ran out this past weekend. And wouldn’t you know it, by Sunday night Will was coughing again. Except this time it was accompanied by wheezing. This morning he woke himself up at 6 a.m. with a coughing fit, and when I picked him up he was having trouble breathing.

That was enough for us to take him to the emergency room.

Will was really fantastic in the hospital and well behaved. He was flirting with the nurses, impressing the doctors and inspiring “Awwwww” sounds from all passersby. When we got settled in the doctors listened to his breathing and heard lots of congestion and some “crackles” in his lungs. So they ordered a chest x-ray for Will, and soon we were off to the x-ray room.

You should know, hospitals freak me out. They shouldn’t by now, because with all of MJ’s health problems I’ve been in and out of them for the last five years. But it’s different when it’s your child. I cringed when they said the words “chest x-ray” but when we got into the room and saw the contraption Will was going to be put in, I nearly had an anxiety attack. Here’s a picture of the device they used to hold Will in place:

But in my eyes, it looked much more like this:

I know, I know. A little dramatic, but you get the point. And to his credit, Will did really well. He only cried a tiny little bit toward the end of the second x-ray, but other than that he was absolutely fine. As for dad, well…I think I was scarred far more than he was.

Thankfully the chest x-rays revealed no pneumonia, which was a load off my mind. But it still didn’t solve the mystery of Will’s ailments. So because MJ has asthma and it runs in her family, they decided to give him Albuterol. They hooked the medicine up to a tube and mask and turned it on, at which point mist began to come out of it. Then they had me put it up to Will’s face so he could breathe it in.

Well, at least they called it medicinal mist. Again, to me, I felt like they were forcing me to gas my own son with poisonous mystery smoke. But six of one, a half dozen of the other.

The stuff from the inhaler seemed to have an immediate positive effect. Will stopped coughing and the doctors could no longer hear congestion in his chest and lungs. So they sent us home with more of the Albuterol and some antibiotics. If he starts coughing again, I’ll have to hook up the inhaler to this mask contraption they gave us and force my son to inhale this crap again. I’m not sure how that’ll work out, I’m kind of banking on MJ being home for that because I’m not sure I’m qualified or capable.

And in the meantime, you’d be correct in assuming that we’re shopping around for a new pediatrician.

]]> http://www.daddyfiles.com/2010/03/24/a-trip-to-the-er/feed/ 14 http://www.daddyfiles.com/2010/03/14/sick-day/ http://www.daddyfiles.com/2010/03/14/sick-day/#comments Sun, 14 Mar 2010 07:10:30 +0000 DaddyFiles1 http://www.daddyfiles.com/?p=2175 It’s Friday morning, 2:30 a.m. Will is crying. Hard. I drag my groggy ass into his bedroom and smell something nasty. I shrug it off and pin it on the bag of diapers that I just took out of the diaper pail but hadn’t taken out to the dumpster yet. Then I reached into his crib to pick him up and…

Puke. Everywhere.

Will threw up all over the crib. And the sheets. Not to mention all over himself to boot. It looked like a crime scene. And if we learned anything from the time I stepped in Will’s crap, it’s that I don’t fare well when exposed to bodily fluids. So I did what any good dad would do: I put my screaming child back down in his vomit covered crib and woke my wife up.

I wasn’t a total ass. I stripped him down and gave him a bath while MJ removed all his bedding and cleaned up the crib. But unfortunately he wasn’t done. Not by a long shot.

He proceeded to upchuck every 45 minutes for the next 5 hours. And did I mention he was in our bed because we were concerned about him? That meant having a plethora of towels at the ready, all draped around him to catch any splatter. The poor guy would fall asleep for short stints, but even though I tried to catch some shuteye it was not to be. Because every time he moved or coughed, I shot up like a rocket and reached for the towel while simultaneously swinging my feet over the side of the bed to escape the potential projectile vomit. One time I jerked up so suddenly I wrenched my back.

After a few hours he had nothing left to throw up, and he was just dry heaving. It broke my heart. So I called in sick to work to stay home with him, and he improved. Or so I thought.

When he hadn’t thrown up for 6 hours I gave him a little yogurt and some milk, because he was begging for it. And he kept it down…for an hour. At 3:30 p.m. I was sitting next to him on the couch and I heard an all-too-familiar grumbling sound, that quickly turned to a wet sounding hack. Like lightning I reached for the towel and got it up to his mouth just in time for him to expel a steady stream of half-digested yogurt and milk. Except it was so fluid it just ran down the towel like a kid going down a water slide. It went on the couch, it went on Will and it got on me.

My poor son sat there, face contorted in agony, looking at me for comfort. So I did what I always do when someone close to me gets sick.

I threw up in my mouth.

Will had a few more aftershocks as I ran to the sink and tried not to lose my lunch right there on the living room floor. I cleaned up the couch, Will and myself but not before nearly puking a second time. Will didn’t throw up again, but instead it started coming out the other end. He traded projectile vomiting for explosive diarrhea. I’m not kidding either, you could hear him exploding from across the room. Since then he’s improved steadily on a diet of water, Pedialyte and Kix.

I, however, and still very much scarred.