Monthly Archives: July 2011

Come Back to Me

***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.

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Sleeping in the Wet Spot

Just above the fish but below the dog.

That’s where I rank. The hierarchy of the Daddy Files household currently goes Will (son), MJ (wife), Bruno (cat), Little One (cat), Haley (dog), Aaron (husband), Red Death (fish). And the word is I barely held onto the second-to-last spot.

After five years of marriage I now have a very clear and thorough breakdown of where I stand in the scheme of things. My lovely wife made my place on the totem pole abundantly clear a few nights ago, when we had this little dust-up just before bed.

I entered the bedroom after a long day’s work at my full-time job, followed by a few hours of writing and editing for my part-time job. I simply wanted to crash because I was exhausted. So I got undressed, went to the bathroom and made my way over to the bed. But when I peeled back the covers I discovered something very strange right in the spot where I sleep.

ME: “MJ, what the hell? Why is there a towel here on my side of the bed? Did Will pee???”

MJ:No. Haley was sitting there for a while and she was chewing on the hot spot on her paw again, so there’s a huge drool spot.”

ME: <picking up the towel> “What the—MJ, this towel is soaked. Not from a drool spot either, it’s just a wet towel.”

MJ: “Yeah, I think that’s the one you showered with earlier.”

ME: “Forgive me for asking such a stupid question, but why on fucking Earth would you try to clean up a huge drool spot from the dog with a wet towel?? Now instead of a doggie drool spot, I have an extra large wet spot that I won’t be able to avoid!”

MJ: “Well then why didn’t you change the sheets yourself?!”

 

Yup, you read that right good readers.

My wife finds a massive puddle of dog drool on my side of the bed. Then, instead of changing the sheets—or at the very least telling me about it—she makes the inexplicable decision to exponentially increase the circumference of said wet spot by placing an already wet and dirty towel on top of it. Next, when I rightfully ask what the hell is going on, it’s my fault for not having telepathically anticipated the dog drool.

And did I mention there were no clean sheets?

The outcome was me sleeping in the drool/wet spot and somehow having to apologize for the privilege. I’m still not sure exactly how that happened (getting people to apologize for things that aren’t their fault is the most impressive woman trick out there), but at least my place as a husband has once again been recorded.

I think that fucking fish was drier than I was.

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When Death Comes for Your Child

***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.

 

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Why I Love the Internet

We lost Alexandra a year ago. We miscarried again in February. Since then I think every single person on the planet has gotten pregnant. Seriously, it’s insane. My best friend and his wife, my wife’s best friend and her husband, two good female friends from high school, my neighbor and countless other acquaintances out there on the periphery. All with the proverbial bun in the oven.

Please don’t get me wrong, I’m happy for them. Thrilled actually. I have nothing but all the love in the world for each of them and I can’t wait until all these babies are born so I can play with them and hold them. But watching everyone else get what you so desperately want…it’s tough.

As the year anniversary of my clash with the abortion protesters drew near, I began to get a little chippy. The YouTube video below is nearing 1 million hits, and with that comes some of the nutcases. There are some nasty comments on there calling me and MJ murderers, telling us we didn’t love our baby enough, etc.

For the most part I’ve been able to ignore them and see them for the crazies they are. But lately, feeling the weight and frustration that’s been building up, I’ve taken to responding to some of them. I know it’s never a good idea to feed the trolls but I can’t help it.

I’ve just been so fucking angry. I feel like anger seeps out of my pores and spontaneously combusts as I walk around on fire. I’ve considered taking the video down and even stopping this blog altogether just to get away from it all and not have to deal with it.

And just then, I got the most soul-refreshing email from a perfect stranger whose kind words have helped me gain some perspective and really soothed me. And boy did I need it. So, with her permission and taking out some identifying information, I’d like to thank the author of this email for saving me when I desperately needed it.

Hello Aaron, my names M___. I’m a 20-something year old from the midwest – an artsy nerd, a roller derby girl, a typical black sheep art school type. I’m also among the thousands of young women who had to make the choice that would leave my heart permanently chipped. To keep a difficult story short, I made a similiar choice as you and your famliy. I was (and still am, though it doesn’t feel it) young, it was unplanned as the story usually goes: I was on medication for anxiety that unknowingly effected my method of birth control, and finding out I was pregnant was a shock I always told myself I would never allow to happen.

However, it wasn’t the worst news either. I had stability and luxeries a lot of young mothers didn’t have – a long, strong relationship with my soon-to-be husband, an almost too supportive, traditional southern family that wanted me to ‘get hitched’ and settle down with a family by the time I was 18 anyway. My grandmother was estatic. With the comfort knowing I had the means and support to bring a child into a world of nothing but love and financial comfort within both families, over time I was infatuated with mommy-dom like I had never imagined.

I recieved similair news you and your wife endured later in my pregnancy. I then made the same choice.

I don’t normally do this, go out of my way to contact a stranger, especially through youtube, but you truly deserve it. I know from reading your blog excerpt that you felt foolish for confronting those women on the street, these people who put so much of thier time and effort into spreading ‘the word’ of God with ridiculous scare tactics and a blind eye to all the reasons there are to end a pregnancy, a choice every woman deserves without ridicule. My child was the victim of chance and an unfortunate genetic history, and though I felt it, it was of no fault of this baby or my own. I wasn’t strong enough to stand up for myself when I was harrassed trying to enter a planned parenthood. I was miserable and heart broken. I hurt so much I wanted to die, and the protestors could see I was wounded. They knew they had the ammunition to bring me down, to make my shame into a cruel example, and they did so in front of every person within ear shot as I tried to do what was best for my health and a child that would not reach full term no matter how much I willed it otherwise. I was powerless in that moment, too upset to voice my side, so instead I just looked at my feet and cried into my hands.

I know what you said on the street that day wasn’t everything you wanted it to be in the heat of the moment, that maybe you didn’t feel like it was a victory. I just want you to know that when I read your story, and saw you from that day, that in a small way I felt like you were protecting me.

I hope with all my heart that you and your family are happy, healthy and continue to stay strong.

M___

 

This is not to paint myself as a hero. I’m the farthest thing from it. This is to say thank you to M.

Even if yours was the only supportive email I received, it was worth it. Aside from the obvious pain MJ was in that day at the clinic, I was equally saddened by the young faces of the women sitting in the lobby that day, who had also just run the gauntlet of crazy religious zealots shouting at them with no understanding of their particular circumstances. I saw the shame, compounded by taunts from the thoughtless jackasses outside. And every so often their hateful words would drift in through the cracked window, causing a fresh round of tears and heartbreak for women making an impossible decision.

Yes I had my wife in the forefront of my mind that day, but I took a mental snapshot of each face in that waiting room and tucked it away. And I thought about women who went there for abortions in the past, who didn’t have anyone to stick up for them. Who either wouldn’t, or couldn’t, fight back. Women like M.

Thank you for that email M. You’ll never quite understand what it means to me. Or how much I needed it. Say what you want about the Internet, but it allowed me to connect with a total stranger on a ridiculously meaningful and personal level. And I’m forever grateful for that.

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A Year of Loss, A Wealth of Pride

A year ago we discovered something was wrong with our unborn baby. It was a roller coaster ordeal that culminated in a showdown with religious anti-abortion protesters on the worst day of our lives. The day we lost little Alexandra.

On an otherwise sunny and beautiful day in Brookline, my wife, MJ,  had the life sucked out of her. Literally and metaphorically. Hearing that our baby had Mermaid Syndrome was bad. Being told she was missing kidneys, a bladder and other vital organs was awful. Having to make the nightmarish decision between a stillbirth and abortion was unfathomable. But the completely unnecessary and unprovoked verbal attack from total strangers was the crushing and cruel blow that sent us over the edge.

I dealt with everything by writing it all down and turning to all of you for support, but MJ suffered in silence. And things didn’t really improve.

Severe financial troubles plagued us. MJ’s medical problems and certain conditions (which I won’t go into here) worsened. We thought things turned around in January when we discovered MJ was pregnant again, but fate is a fickle little tramp. Another miscarriage. MJ had to go in for a D&C, which is never a pleasant experience. Then, last month, we discovered there were leftover remnants which caused a hematoma. Lucky MJ, that meant yet ANOTHER procedure. Which, in turn, translates into a delay of at least three months until we can even think about trying for another baby.

In fact, when I thought about the last four years, I came up with a shocking fact I hadn’t really considered: MJ has been pregnant five times in four years, during which time we’ve lost four pregnancies requiring just as many D&C procedures.

That absolutely blows my mind.

Seriously, it’s enough to make even the strongest among us curl up in a ball and give up. Which MJ and I have both considered at various points. But as hard as it’s been for me, it’s been worse for MJ. Her medical conditions make it so damn hard to function on a daily basis, nevermind work at a demanding job and take care of Will, me and the house. She handles all the finances and anything that requires paperwork. She does everything, which can really take a toll.

Things bottomed out six weeks ago when MJ had to take a leave from her job. I have to admit, I was worried about her because at that point things really could’ve gone either way. The time off could’ve helped her or she could’ve gone insane and spiraled so deep into depression she wouldn’t be able to recover. And that scared the shit out of me because she’s been close to that point in the past.

But once again I was reminded to never count my wife out.

She fought back the only way she knows how: a little bit at a time. She is getting the help she needs and she scratches and claws on a daily basis just to have a fairly normal day. It’s not easy. In fact, it’s ridiculously difficult. Yet even during her own personal battle, she’s remained a fantastic mom to Will and I still hold the title of “World’s Luckiest Husband.”

During a year of awful loss and trying times, it would be easy—even understandable—to dwell on the bad times right now. But instead,  I want to tell my wife I love her. I think she’s incredible. And I’m constantly amazed by her strength and resiliency. As shitty as this year has been, the tough times can bring out the best in people. And my wife is, by far, the best.

I’m proud of you baby. So proud.

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