Read an Excerpt
Rad Families
A Celebration
By Tomas Moniz PM Press
Copyright © 2016 PM Press
All rights reserved.
ISBN: 978-1-62963-230-8
CHAPTER 1
PART 1
Nipples
My mother never wore a bra; instead, she regularly wore shirts that said, flat is beautiful or boobies are for babies, her little breasts hanging low, her nipples arrogant, hard, always poking through the material. It embarrassed me. When I was fifteen, I asked her as she was getting dressed, "Why, Mom, why don't you even own a bra?" She turned to me shirtless and asked, "Do you know the reason men have nipples?" "No," I shrugged. She said, "To remind them of what they could have been."
Legacy
The first time my father saw me, arms chubby and legs fat like little sausages, he poked at me and said, "This one's a Chiconky." It was just like my father to mash two things together into a new thing: Chicano, Honky. Years later, he'd ask me like a dare, "What's the brown part of you?" When angry he'd growl, "That's the white part of you." When high or desperate or lonely, he'd whisper, "I love every part of you." Legacy is a thing passed on and a thing remembered. It's a tension. Because of my father, I learned to fret about the parts and the whole, piecing this to that, sorting out what belongs and what doesn't. But he also taught me to recognize that shit don't always make sense, so when I viewed my first child, squishy and little, I understood his desire to name that unknown, the weight of the past, the threat of the future, and call it a new thing.
BIRTH
Scars and Diamonds: A Birth Story
Jonas Cannon
All of the wonderful people in my life carry scars that show where they came from. Every single one of them. The people closest to my heart, the ones I admire, the ones who've inspired and continue to inspire me — none of them found a shortcut to the good times. There was domestic violence, sexual abuse, mental illness, physical illness, drug abuse, financial crisis, police brutality, alcohol abuse, loss of loved ones, racism, sexism, ageism, classism, homophobia, transphobia, physical disability, and so on and so on. They all suffered through it or suffer with it.
Sometimes, looking back on it all, I can't help but think that life has to crush us to get to the diamonds. Maybe you are the diamond. Maybe the diamond is what you will create. Whatever it is, you are going to take a bruising before you find it.
* * *
My kid wasn't due for another month. It was a Saturday night. My wife and I know how to party: we were going to spend the evening on the couch, watching bad television. Before I even turned on the TV, though, my wife suddenly looked confused and said, "Um, either I just peed my pants or my water broke."
I said, "Come on now. Let's be reasonable here. As an adult, have you ever peed your pants before?"
She said, "No, but I've never been pregnant before either."
"Touché," I said.
She went to the bathroom for a few minutes, then came back out holding up her pants and panties. She carried them over to me and said "Um ... Smell this and tell me if you think it's pee or not."
I did not smell her underwear. I said, "You grab the car keys and I'll pack our bags."
* * *
My wife wanted a natural birth. My friend Teresa was her doula; a very brief phone call sent her speeding over to the hospital on her bike to meet us. Soon, the three of us were taken to the labor room, a pretty big space with a foldout bed.
And ... we waited. Mostly in silence. My wife was nervous — no, she was downright terrified of the pain she was about to endure. Teresa and I took turns massaging her, speaking to her quietly to try to ease her mind a little.
I felt surprisingly calm through it all. Being at the hospital made it all seem very procedural, very normal. Also, I wasn't the one in the hospital bed.
After waiting in the labor room for a few hours, the nurses started my wife on Pitocin. When the Pitocin kicked in, it was goodbye natural birth, hello epidural.
There was a lot of pushing and then there was a lot of blood and then there was an emergency C-section. The nurses led me into an adjoining room to see the baby, lying on his back and screaming bloody murder.
I know that for some parents, the first sight of their child is a glorious moment, a precious, unforgettable blink in time. Some fathers are reduced to tears. Some are wide-eyed and speechless. Some collapse and faint. That's all sweet and touching — even the fainting part.
I didn't experience anything like that.
I looked down at the baby, the six pounds and seven ounces of brand new life. He'd spent the better part of the year taking it easy in a cozy little womb. Then, suddenly, a team of doctors came along and yanked him out, delivering him into a world that is mostly bad. It made the poor kid wail his little head off, and all I could think was, son, I don't blame you. I don't blame you one bit.
* * *
There are many ways to interpret a baby's cries after delivery. I picked the cynical one, the one that has nothing to do with babies and everything to do with the life I'd lived.
But there was my diamond: my son, my beautiful boy, right in front of me. I wanted to lead him to good times, but without all the pain it takes to get there. Only I didn't know how to send him down that road. I didn't even know if it was within my power to do so.
I still don't know.
Yes, I will teach my son as much as I can, by word and by example. He will join me at protests. He's going to be surrounded by books like Assata Shakur's autobiography and King Kong Theory. He'll be raised with strong feminist values. He'll be taught to embrace his own heritage while being aware and respectful of the beautiful cultures around him. Within my power, I'll try to shield him from the dangers I can foresee and prepare him for the ones he has to face without me.
It's overwhelming to consider. It feels as though I made it halfway up a mountain, then came down to hoist a child onto my shoulders and start climbing all over again.
A couple months before he was born, I got into a conversation on parenting with a few pals. In the middle of it, my friend Kristi said flat out that the first couple years of parenting were all about struggling to keep a fragile little person from not dying. She's not one to sugarcoat things.
At the time, I was horrified by this notion. Parenting sounded intimidating enough without defining it as an ongoing life-or-death situation.
I think about what she said, and I find it comforting. It's a long, overwhelming journey to help him fit into the shoes of a strong, intelligent, compassionate adult. Luckily, for the time being, I just have to figure out the difference between when he cries because he's hungry and when he cries because he shit his diapers. Right now, radical parenting simply involves cradling, feeding, burping, and making sure that this helpless, speechless human being does not stop breathing. Before I can guide him anywhere, I have to figure out how to swaddle him tightly enough so that the little stinker won't kick his way out two minutes later. Before I teach him any language, I first have to learn the language of his crying.
With a Child Is Born a Parent: An Interview with Ian MacKaye
Ian Mackaye shared his thoughts and experiences about becoming a father a few years ago for Rad Dad and coined what I thought was some astoundingly true advice to new parents: it's fucking natural. It's the one interview I always encourage new parents to read. I thought I'd check in with him again to see what other ideas and experiences he's had since becoming a father.
Your son is now five years old! I wonder how your view of parenting has changed.
You know, I still stand by what I said in the last interview. Really the biggest change is that now sometimes he'll do stuff that offends me or angers me or hurts my feelings and so the consequences are that we stop whatever we were doing. And he doesn't like that. That's hard. But I don't want him feeling comfortable doing things that offend or bother or hurt people. For example, if he wants to throw a snowball at me when we're playing that's fine. But if he throws it at me when I'm not ready or he hasn't let me know we're playing, then that's not cool. But I'm his father and I can handle it. One day he'll throw the snowball at the wrong person or at other kids or older kids and there are much different kinds of consequences he will have to face. But really it's as much a learning process for him as it is for me. I often say this: with a child is born a parent. Each of us is trying to figure it out for ourselves and figure it out together.
Perhaps a more daunting question: your son is certainly being influenced or coming into contact with mainstream pop culture and all that comes with it. How are you managing that in the MacKaye household?
Managing? That's a weird term. I don't wanna manage him. I want to give him the tools to manage himself. It's his life. But what I would like to give him is the ability or the freedom to be wrong, so that way he can figure out how to be right, how to get back to being right when he makes a mistake. I want to give him tools to do that. I feel that to manage a child or shield them from the mainstream is to marginalize or essentially create somebody who feels marginalized from the world by their parents.
What I'd rather do is to let him know it's up to him to figure it out and learn. For example, Amy and I are vegans. We have a vegan household. It's simple. That's what we eat at our home. We have told him when he's out in the world if he wants to eat something that's not vegan, it's up to him. This especially comes up at birthday parties. So we tend to have some vegan treats with us when we go out to events like that so he can join in if he chooses to not eat the cake. But it's up to him. He can choose. I don't want him to be a vegan because I am. I ultimately want him to choose for himself and I will respect it. I was raised in a family that gave me tools. My parents said trust yourself and do well. And to this day all of us who live in the area eat dinner every Sunday with my father who is not vegan but cooks a vegan meal every weekend for us because he respects us.
Does your family plan to participate in the public education system?
I'm psyched that he's going to be a part of the public school system. That's where I went. Yes, it's got the problems that public schools have: bureaucracy and lack of funding and just life in general. But I think though that public schools are so important because it is the only opportunity when a person will spend long extended time with other people from all walks of life. There is no other time in life when this happens so consistently. You learn how to be with each other. Public school gives you the opportunity to see that everyone is a person. That we are all people. I could give a damn about test scores. I care about socialization and learning to care about others. In public school you have to learn how to coexist, which I think is pretty good practice for being with other people in the world.
Lucas's Birth
Burke Stansbury
The day after Lucas's positive health reports and development, Krista and nurse Florence were at the hospital with Lucas for another routine visit. Getting off the elevator someone walked by, looked at Lucas in his chair, and let out a sad "awww." Then a moment later in the waiting room a man came up and said, "It must be really hard." Throughout the long wait Krista and Florence could feel the eyes in the room on them and Lucas, each time they fired up the suction machine to clear the saliva out of his mouth or adjust the vent circuit in a way that led to that familiar, loud beeping.
It's weird that the same day Lucas was getting compliments on his positive health reports, about how good he looks and the excitement of all the progress he's made from friends and family on our blog, people at the hospital were going out of their way to remind us of his dramatic limitations. We still haven't figured out how to get him comfortable in his new stroller/wheelchair, so he often looks pretty out of it when we're rolling around. And just a glance at the tracheostomy, the vent tube, and the monitor wire connected to his toe can be jarring, even at a children's hospital where difference is often on display.
But what you don't capture in a five-second snapshot of Lucas is everything. We're lucky — we get to spend lots of time with the little guy and see him at his best: when he's cracking up because someone is about to raspberry his tummy, when he's exploring a fascinating new toy and deliberating on how to best get it into his mouth, or when he's splashing his legs around in his undersized bathtub. With Lucas, patience is a virtue. The more time you spend with him and allow him to do his thing, the more remarkable he becomes.
So it wasn't surprising that it was Florence who immediately piped up when the man in the waiting room expressed his sympathy about Lucas's condition. "That's okay," she said, "actually, he's doing great!" The man eventually sat down and asked more questions about Lucas, spent some time talking with him as well as Krista and Florence, and it ended up being a very positive interaction.
In fact, even though it can be awkward at first, we usually appreciate it when people come up and ask about Lucas, as opposed to the more common reaction of quickly averting eyes in an attempt to avoid the reality of a child connected to a ventilator. We don't hold the latter reaction against anyone — we've had it ourselves when confronted with people who have disabilities. But as this curious man in the waiting room found out, there are great rewards to having the courage and patience to get to know someone like Lucas.
* * *
Lucas will be discharged tomorrow morning from the hospital and hopefully we'll make it safely home before the next big snowstorm hits in the afternoon. He's pretty much back to his old self, but there's still a few things that are weird, such as an occasionally high heart rate, some residual swelling, and a new, goofy eye twitch. There's so much going on with him sometimes that it's hard to know what is significant and what isn't, but we're confident along with the doctors that he's ready to come home.
We've taken advantage of our days in the pediatric ICU to access all the specialists that might be able to help tackle Lucas's broader challenges, and through the various consults and tests over the last week we may finally have an answer. It's not something that's easy to share, but Lucas underwent an electronic test of the muscles that confirmed that he has a congenital muscle disease, most likely a genetic disorder called Myotubular Myopathy. It's devastating news — hard to even write these words — but based on our own research over the weekend we're convinced he will ultimately be diagnosed with this particular disease.
Like us, you probably have lots of questions about what this means for Lucas and we won't try to answer them all right now. Many thoughts have been going through our minds over the last few days and it's impossible to sort through them when the realization is still so raw. In some ways the news wasn't a total shock: Lucas's hypotonia has improved very slowly since he was born and we had begun to doubt the theory that a brain injury alone had caused his low muscle tone. Upon seeing Lucas the other day, the neuromuscular doctor quickly confirmed our fears, and the conversations we've had with this thoughtful, humble man over the past few days have helped begin our process of understanding Lucas's disease.
Mytobular Myopathy is a very rare muscular disorder that affects approximately 1 in every 50,000 boys. It is not degenerative like most muscle diseases, but nor is there a cure or treatment for it. Lucas may gain some strength and muscle tone in the months and years to come (especially with the help of therapy), but he will likely always need assistive technology to breathe, move from place to place, and communicate with the outside world. Research on this disease only really began in the 1990s; prior to that, it was assumed that anyone with Myotubular Myopathy would die in infancy. Since then some boys have survived into their teenage years, and some attend school — unlike some muscular diseases it does not affect cognition, and intelligence levels for those who survive tend to be high.
Right now, Lucas's future remains very much unknown, but we can say this: Lucas hasn't changed, just the information we know about him has changed. He's still the same beautiful, little fighter that we've been lucky enough to know and love over the last five and a half months. He has already taught us so much. We will continue to experience great joy together as a family. And we can't wait to have him home again.
* * *
We still haven't heard any results about Lucas's blood that was sent to the University of Chicago to test for the genetic mutation that causes Myotubular Myopathy (MTM). However, since our meetings with Dr. Leshner we've been going about life as it were already confirmed that Lucas has the disease. That might sound odd, since of course it's not something we want, but our research so far has only reinforced the theory, and all the pieces seem to fit. It will be weeks before we hear back on the genetics test, which means it will be weeks before we can actually ask Dr. Leshner about some of our specific questions about possibilities for Lucas's future. In the meantime we continue to do our own research and learning.
Researching your baby's debilitating disease is not an easy thing. At times we find stories of other children exceeding expectations in life that give us a lot of hope; at other moments we learn things that present really difficult possibilities for Lucas's future. Our goal so far has not been to find out every piece of information possible by throwing ourselves entirely into the world of MTM and muscle disease. Rather, we're still adjusting to Lucas's diagnosis, holding in our hearts the many intense feelings that it brings, and adjusting our hopes for the future as we let go of some dreams and embrace new ones. All the while, Lucas is growing and changing and we get to keep enjoying the everyday wonders of just being with him.
While we're far from making any definitive conclusions, there are a few things we're already learning from our research and from stories people have shared with us. First, a diagnosis does not mean a definitive prognosis, since diseases like MTM manifest themselves in distinct ways with varying levels of severity. Reading about different young boys with MTM has reinforced that. Lucas likely has the x-linked form of Myotubular Myopathy, which is the most common and severe form, but still there is a lot of variation in how it manifests itself. There are over a hundred different mutations of the gene that can cause MTM, and it seems that the type of mutation and where it is on the gene strand can impact the prognosis.
(Continues...)
Excerpted from Rad Families by Tomas Moniz. Copyright © 2016 PM Press. Excerpted by permission of PM Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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