Next Time

It was brought to my attention recently, “You haven’t written on your blog lately.”

It’s true. Unfortunately, that is because there has not been much worth writing about. Nothing that most people would want to read about, at least.

Most people know by now, I did not pass the July bar exam. To put a little salt in the wound, it was by less than seven points. To pour a waterfall of hydrogen peroxide on the wound so it visibly festers, it has made looking for a job almost next to impossible, and manifests real financial worry. The well-meaning crowd has been encouraging with a light bump on the shoulder and saying, “Next time!” But there’s a little thing to get through in order to even make it to next time called “five months as a single parent.” That is five months of bills and a mortgage, none of which give a fart in space if your job search is going terribly; five months of combing job sites and cold calling for any job, even jobs that a high school kid would sooner be chosen for (like day care and babysitting, and I have plenty of experience working with children. I’ve birthed one and kept it alive. Hell, before that, I was a kid and my ex would probably say I still act like one); and the main duty: five months of trying to support a child on your own. So, if you can get through “five months,” without losing your credit score and wallet, you’ll make it to “next time.”

The bar exam can be – and actually is – a rant all on its own, and any such rant would only resonate for those who have taken it and know what it entails. Simultaneously, it would bore the hell out of anyone else who had to read about it.

So, off and on for the last few months, I have been job searching, being the star of “Real Housewives of Suburban Des Moines,” and basically just channeling my father’s and late grandfather’s fondness for watching classic television and an equal fondness for grumbling about everything: weather, sports teams I don’t follow, the neighbor’s dog that has barked once and I’ve declared war on if I hear it again, and other people’s children’s behavior in public.

Like I said, there hasn’t been anything going on that anyone would want to read about. I wouldn’t even want to read about me right now.

Essayist Charles D’Ambrosio recently said in an interview with The New Yorker, “In a way, writing maps a path out of the self. Instead of sobbing, you write sentences.” And so with this extra time, I have tried to spend doing two things, specifically: write and be more involved with what Judah is doing in school. One of these endeavors has been prone to insufferable writer’s block, guttural cursing of the heavens and a desire to make daytime intoxication socially acceptable (for reasons why, see above paragraphs). And the other endeavor is advancing by leaps and bounds. One guess as to which one is going well.

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I’m at a slight disadvantage, though very slight, when it comes to Judah’s education. Other kids can come home from school and say what they have learned or liked about their school day. Judah cannot. While the teachers are diligent about his communication log, the general education teacher has 22 other kindergarteners to work with, and the special education teacher also has numerous students who need one-on-one time with her. So a few Fridays ago, I ventured over to the elementary school and decided to follow my child around for the afternoon. My property taxes pay for it, so I figured I was entitled to know what my child does all day. It’s not like he can sit in a regular classroom all day and learn basic math or how to read. Initially, I intended to read a book to the children, maybe sit in for a few minutes to see how his classmates responded to him, then leave.

“The kids have PE today,” Judah’s special ed teacher, Mrs. K., told me as we exited the classroom. “We usually put him in the walker and let him walk around while the kids do their activity.”

“Uhhhh, Judah doesn’t use a walker anymore,” I said.

“He uses it,” Mrs. K cheerfully replied.

I smiled, feeling a mix of irritation (don’t I know my own kid better than anyone else?) and confusion. “Are we talking about the same student?”

“Judah is the only student in this elementary school who uses a walker and a wheelchair,” Mrs. K said, still upbeat and kind. “I am sure we’re talking about the same little boy.”

We walked down a wide hallway to the gym, passing upper level students trying to stuff snow pants into lockers and the open cafeteria doors, where a cacophony of first grade shrieks, giggles and chatter spilled out into the hallway. At the end of the hallway is the gymnasium. It is far nicer than any elementary school gym I have ever seen, and nicer than some high school gymnasiums I have practiced various athletics in. From one wall are plastic pull-out bleachers that are a deep purple, one of the school district’s colors. Under the baskets, the walls have purple and gold mats declaring, “Go Warriors!” and “Warrior Territory!”

For as noisy as the hallway and cafeteria had been, the gym was silent except for the PE teacher – a very petite woman with an equally petite baby bump and pink yoga pants – setting up the day’s activity. The red walker was already out, waiting for its occupant to take it for a spin. “We like to have a few extra minutes to get Judah situated in his walker before the other kindergarteners come in,” Mrs. K explained to me as. With the help of two other people, including the school principal – this is a 50+ pound,  almost 4-foot tall child – Judah was lifted into the walker. We all stood around Judah in his walker – me, Mrs. K, the gym teacher and the principal. The silence was expectant, as we all stared at this child, waiting for him to do something.

Then Judah boldly stepped one foot, then the other, and inched the walker towards us. “OH!” I abrupt declared, shocked. Then a few more steps, then a few more. The two kindergarten classes filed into the gymnasium, giggling. I remained oblivious to the noise, still focused on Judah and red walker, which was inching closer to me slowly, but steadily. He walked to one end of the gymnasium, stopping occasionally to watch his peers. Then he got turned around and started toddling, again slowly down the other end of the gym’s length.

It wasn’t necessarily cool because this is something he had never done before – it was cool because it was something he hadn’t attempted or been successful at in a long time; it was something that I thought he had forgotten to do or failed to achieve.

There was about a year where Judah stopped using his walker to get around. I would joke that he just wanted to be a hotshot and be carried around everywhere than do something for himself. I knew, though, my child was not able to actively make the decision to do something or not do something. He can typically only do something, reach for something, or use something after being given several tactile cues, and then it’s a signal that he should react because the cue to react was given. What I didn’t know if is he simply forgot what to do when placed in the walker and given the cue to start walking in it. I also didn’t know if it would be permanent or it could be relearned.

A year is longer than five months, and a hell of a longer time to be frustrated with yourself when life isn’t going your way. But still, Judah was able to get through the interim to “next time” with no complaint and no worry. I suppose I can, too.

 

Why I’m Done With Disability Awareness

I am done with disability awareness.

I am done asking the hotel my family spends its annual family reunions at to be ADA-compliant.

I am done writing notes to the person who parks in the accessible parking spot without a placard hanging from the review mirror, and to the driver who parks on the street blocking curb cuts.

I am done rolling my eyes when I approach a front door and there are no accessible switches to open the doors.

That’s it, folks. It’s not because I don’t care anymore; in fact, on the contrary. I’m done because awareness is a moot point. We are all aware that there people with disabilities in our communities, places of employment and school districts. We are aware they are people just like anyone else. We are aware they deserve to be a part of society and participate in society like anyone else. Awareness has been long-established.

Disability acceptance, however, is another story. I’m not done with that.

There are several kinds of acceptance: active acceptance, which mean individuals recognize a person is a person no matter what they look like or what abilities they have; then there is passive acceptance, meaning how culture structures itself physically to ensure all of its members may access it and participate in it. How a building is built and is able to be used by occupants says a lot about who is welcome there. How public transportation is constructed speaks volumes about who is allowed to utilize it.

The bottom line: if Company A owns a shopping mall that has two floors, no elevator, and no switches to open the doors (or neglects to repair a switch that has jammed), the underlying message is that people with disabilities should not expect to access it, and therefore, not be there. If Mr. X is the director of transportation for a mid-sized municipality and fails to include chair lifts on the fleet of public buses, the city – vicariously through Mr. X – is essentially sending the message that people with disabilities better start wheeling and hobbling to where they want to go, because the bus is not accessible to them.

Is this a bit of an exaggeration? Sort of. I sincerely doubt most places that are difficult for a person with a disability to access has been made that way for the sole purpose of exclusion. But when a building that is open to the public cannot be physically accessed by someone with a disability who has the right to be there, that person is being excluded. That person has, in a sense, not been accepted.

As all humans tend to do when something does not specifically pertain to them, these things go largely unnoticed, even though it happens everywhere. I include myself in that number. Before having Judah, I would never notice doors that could only be opened by pulling on them while subconsciously shifting my weight back with my standing legs to gain entry. I never thought about using an escalator or stairs to get to from one floor to another.

Most importantly, I also never thought about how these rather simple things would be viewed by someone with a physical disability. Admittedly, I did not think about it much when Judah was an infant and young toddler. After all, who doesn’t love to hold a door open or help prop a stroller wheel on to an escalator step for a beautiful baby?

Then a few years ago, after Judah got his first wheelchair, I really started to get it. There is the hotel I had to leave because our room was on the second floor and there was no elevator, only stairs. Then there was the hotel that did have an elevator, but the shuttle it provided for guests who were also patients of a local children’s hospital did not have a wheelchair lift. I wouldn’t have caused a scene had the hospital not been world-renown for treating children with physical disabilities. Then there are the numerous stores, shops, and other buildings where I have to had to push open a door, then pull the wheelchair in by its footrests in hopes Judah gets through the doorway before the door shuts on him.

The people who own or operate these places and vehicles are aware that someone with Judah’s disabilities might visit or have a need to access them. Acceptance of his need to use them, however, not so much.

A few weeks ago, U.S. Sen. Tom Harkin visited Iowa. Harkin is perhaps most famous for being the author of the Americans with Disabilities Act. Not only was he in Iowa, but he was actually on the campus where my law school is located. There was a panel discussion sponsored by the university about culture shifts in the United States in the 24 years after the ADA was signed into law by Bush the Elder in 1990. Not only was the panel to be a reflection, but a look to the future and where the ADA needs to fill the gaps.

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Judah and U.S. Sen. Tom Harkin (D-IA)

I do not mean for this post to dismiss disability awareness as being pointless – on the contrary, I am damn grateful there is more disability awareness than has been since our nation’s inception. Awareness has been the first critical step for anyone with a disability of any kind to be treated like a human being, and the ADA is responsible for blazing the trail. My child would probably have been forced into an institution if it were not for Tom Harkin, George H.W. Bush, and the ADA (which I told Harkin personally at this panel. He blushed good naturedly, which made the schoolgirl in me swoon).

After the panel, I waited patiently for the senator to come down. He is usually pretty good to about speaking to every person who wants a minute of his time, and never rushes someone though a conversation. After speaking to Judah first (“Hello, young man! Who do we have here? What grade are you going into this fall?”), Harkin shook my hand and we started to talk about Judah and his care.

I recounted to Harkin the difficulties bringing Judah to certain stores that any other child can go to, and frustrations felt when building managers insist they don’t have to comply with the ADA. I could tell he had heard stories like these from thousands of other mothers like me. He did not cut me off or act disengaged. As he always does when he talks to me or another constituent, Harkin jotted down notes from our conversation on a small notepad, made eye contact, and asked what I’d like to see done. I appreciated his sincerity.

The problem is, this is Harkin’s last term in office, as he is choosing to retire instead of seek re-election this November. He has less than six months left in office. Many of the senators who worked on the ADA with him are also either retired or have passed away. This means more than ever, people will have lobby their federal representatives to protect the ADA and take it to the next step – past mere awareness and into full acceptance of accessibility and participation.

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The Other Side

The bar exam – the licensure test attorneys have to pass before they can practice – is over! 80-some days of stress of trying to re-learn three years of law school was over with 12 hours over the course of two days. So that means it’s really time to move on to the next chapter.

 

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For some of my friends, that literally means moving. Some are just moving across the city. But a few close others are moving out of Des Moines to far corners of Iowa, and one is moving across the country later this year. I’m really bummed, but it gives me an excuse to take weekend excursions.

I also feel…out of sorts. The bar is over. I don’t find out the results until mid-September. So for the next five or six weeks, there’s nothing to do. There are no law school classes to go to. There is no job or internship to go to. There is no bar prep course to work on. My time is my own. I can read for fun. I can – and really should – get back to working out regularly (the bar exam has not been kind to my physique). This kind of free time would be a dream come true to most people, and it is to a certain extent.

But it’s also weird. Instead of feeling relieved and happy, I’m uncomfortable. I always have something to do. Not having something to do is never an option.

Since becoming pregnant in 2008, I have constantly been busy. First it was being pregnant, working, and getting ready for baby by myself. I was very proud of myself doing everything on my own to get ready, even though it was a lot of work. Then Judah was born, and my new life was dealing with a child with disabilities. Not long after, my ex and I parted ways for good, and moved halfway across the country to start my life over. Law school came after that. It got to the point where I thrived on being constantly busy and stressed out. If I wasn’t constantly doing something, I felt lazy or like I was doing something wrong. If I did not feel stressed or neurotic, I wasn’t happy. I balance it all, and I thrive on knowing I balance it all.

In fact, as I write this, I take a break every few minutes to write down a list of things “to do,” like repainting the entire house and making over the living room (which does not have to actually be done. In fact, expensive impulsive decisions like these are probably what led my house’s previous owners to go broke and be foreclosed on).

I threw myself into my child’s disabilities and other stress because I don’t want to be on the other side, where there’s nothing.

This situation is temporary. I keep reminding myself that. I’ll be employed again soon, hopefully doing something I love with this law degree that practically cost me all sanity to get. Judah starts school in about a week, so there will be school activities to help him get involved in. This free time will be fleeting, and I hope I’ll realize how to just enjoy it for what it is. When we become adults, we quickly forget how to enjoy time when there’s simple silence and nothing.

So perhaps today I will finally pick up a book to read (not Curious George) just because I want to, and not worry about what I’m doing tomorrow or the next day. I might be able to balance a lot of things, but maybe not “all.” In the rush of the last six years, I have sorely forgotten what it means to just be. No time like the present to remember.

The Fifth Year

June 29th, 2009. My child was three days old. I was trying to sleep in a plastic arm chair in a NICU, though not very comfortably. I would try to change positions in the chair, then remember I had just given birth to an almost nine-pound baby and exhale in pain. I still wasn’t walking normally. My gait had become a gingerly limp-and-shuffle, and I would have to stop walking several times between the Ronald McDonald House and the hospital. It was only a few blocks, but those walks would feel like miles. More often than not, I would get the hospital front door in tears – not really from pain, but disappointment that my son’s father never offered to drive me there, even if was a 10 minute walk. I had never felt so hated by someone in my entire life; I would spend the next two years – with sleepless nights and countless tears – desperately trying to figure out why. I eventually gave up.

June 29th was not any different. The atmosphere was tense for several reasons. I had been informed by hospital staff that I was going to get bad news, but it might be less bad than expected, or more severe than anticipated. So, I had a sense that the day was going to be a long one from a medical standpoint.

“You ok?” my ex asked me, as I delicately tried to shift positions in the chair. It was a vinyl-covered armchair, the kind that sticks to your thighs when you try to stand up. It reminded me of the plastic covering you might see at your grandmother’s house to protect a 1975 sofa.

I waved a hand hastily in his direction, indicating I wanted him to be quiet. In fact, I probably didn’t even want him there at the time. Things between us were on shaky ground. We had only started speaking to each other again two weeks before the baby was born. Now things were going from shaky to completely disintegrated, and quickly.

I also wasn’t really sure why I was there in the NICU, quite frankly. Hadn’t I been told not three days before that I would go to the hospital, have a healthy baby, take him home and start my life as a parent? So why were we here? There was something about the baby possibly swallowing meconium. In an e-mail I had written during a moment of lucidity to people back home on June 26th, I talked about a blood infection and fluid in the lungs, so these were obviously things I was told by someone in the hospital. It’s not like I would have just made it up.

Also written in the e-mail: “He’ll be just fine, he just had a rough start.”

It was mid-morning when the neonatologist came in. I had known him for maybe 26 hours, and I already actively and outwardly loathed him. I called him Dr. Rattlesnake behind his back, which my ex considered juvenile. He was cold and impersonal. There was little that was friendly about him. Maybe outside the hospital, he was a great guy. Maybe he was a popular fourth for golf, or well-liked at a country club. He is probably a well-respected doctor in medical circles, and is probably a well-respected husband and father, provided he’s married and has children. But here, in this setting, all he did was talk about bad news.

“We have the results back from the MRI,” Rattlesnake said. “Let’s just cut to the chase, it’s not good news. We’re looking at severe permanent brain damage.”

“What?” I said.

“Brain damage,” was the matter of fact reply. “Probably severe mental retardation. I don’t see him being ambulatory. He might live a year. Maybe two, if you start services for him now.”

“Ambu – am – wait, WHAT? What services?”

There was an uncomfortable pause.

“I’ll get the social worker,” he said. “She’ll be able to talk to you about PT, OT, all that stuff.” He moved his clipboard between his hands. I could tell he felt bad, but at the same time, it was business as usual and it was time to move on to the next patient.

“Take him home and just love him for the next year. That’s all you’ll be able to do for him.”

June 30th, 2009. I had slept maybe an hour intermittently all night, after staying up for several hours, talking to my mentor in Des Moines on the telephone and e-mailing several other people. I asked my parents to call my best friend from high school; I just couldn’t bring myself to tell her what had happened.

An alarm on a cell phone went off at 6:30 a.m. I gently rolled over and saw my ex was also awake. “Did I dream it?” I whispered. He just shook his head no, and then got out of bed without another word. That’s when I knew the life I had been planning on was over, and I don’t mean just for the baby.

This is the little boy who wasn’t supposed to live past a year old:

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This is the little boy who supposed to be taken home just to die:

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This is the little boy who used to have 200 seizures every 24 hours:

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This is the little boy who underwent a g-tube surgery and multiple botox and phenol injections without a complaint:

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This little boy is going to kindergarten this fall:

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This is the little boy who says five years old is nothing – he’s just getting started!

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The Kindergartener

Last week was pre-K graduation. I am officially a parent to a kindergartener. 25 year-old me would have never believed it!

There was a very cute ceremony at the district’s high school. Each child was called up to get a “diploma” and each class sang a song. Cookies were served afterwards. This is, to most people, the zenith of mediocrity.

And for some people, like me, this is the only graduation our kids will ever have.

Obviously, I don’t know what will happen in the future, but it’s expected that Judah will not live to see his classmates graduate high school. That he’s lived past his first birthday is already incredible and unexpected. Medical advances and his good care extends his life span, so he could also exceed expectations. But things happen. I personally know three sets of parents who have lost their children in the last year as a result of their disabilities, and these were all children under the age of 8. Even if Judah does live to see 2027 – when his classmates will graduate high school – he won’t actually graduate, because he is unable to complete the curriculum mandated by the state of Iowa and the Department of Education to pass high school. He will receive a certificate of attendance, and because he is disabled, will have the option of staying in the public school district until he is 2o years old. So this was kind of it as far as graduations go.

 

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The not knowing part scares me.

The other thing that scares me is how interactions with his peers will change. So far, Judah has been included in everything at school. He is loved by his peers and they have actually argued about who gets to push his wheelchair or play on the mat with him. He’s one of the gang. But it’s also pre-K. These kids are four and five years old; they’re young. Kids don’t know people are different, and if they do notice, they just take it in stride and don’t make a big deal out of it. At the beginning of this school year, the other students would ask, “Why doesn’t Judah walk?” “Can he talk?” “Is he a baby?” (which, if you think about it, is a reasonable question). By the end of the school year, however, I noticed they had shifted from asking questions to saying things like, “Judah, you need to walk in your walker.” “Keep your head up, buddy.” “Judah, I’m going help you.” Clearly, the kids have been listening intently to the teacher and one-on-one aide talk to him all school year.

When asked about kindergarten, I’ve said I’m excited for Judah to start, and I am. But I’m also scared for it, and I haven’t been so forthcoming about that. Things will change starting next year – they have to change. As the kids get older, Judah will spend more time in special ed rooms, as opposed to the general education classroom, and I know it has to be that way to best serve his interests and needs. But that also means not being as much of a part of the group. I don’t worry about him being picked on by others (there will always be one or two asshole kids out there, but they are their asshole parents’ problems), but I do worry the kids will be less eager to want to help him or to even be around him.

 

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There are times I forget my kid is disabled, because I’m used to his equipment and how he needs things done. He’s always just been my kid. He’s just Judah. Obviously, I do not actually forget he’s disabled. But I can’t imagine a world where he’s shunned by people for being different, and I truly fear that will start to happen as these kids older. We all want the best for our children, regardless of abilities, and there’s a certain fear that starts to creep in when we have to gradually let them go and relinquish control little by little.

I noticed at the graduation ceremony there was at least one special needs student in each pre-K class, and actually, there were two in ours. So out of the 60-some pre-K’ers in this class, that equaled out to be about five or six kids who had a visible disability, and these 60 kids are going to be only a very small part of the incoming kindergarten class in this school district (the high school’s sophomore class is 700 kids). That means there are going to be more special education students entering kindergarten besides the children who attended the district preschool. Knowing there will be several students like Judah is comforting in its own way, as strange as that sounds. When you grow up with something and understand something, it is not as fearful as it may seem. I hope with these kids all growing up together, Judah will continue to be just be Judah, not “that one kid in the wheelchair who used to be in our class.”

I don’t know what the future will bring. I can only hope Judah will keep growing up, be respected by his peers and see them wear mortar boards again. I can only hope they’ll treat him well.

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The Beginning of the End

It is almost time for law school graduation.The ceremony is in two weeks. Before long, I will finally have that $100,000+ piece of paper in hand, and the privilege of making people I don’t like call me “Doctor.” Much more was paid to get to this point, however. There were many nights – more than I’d like to admit to – where the television set had to keep Judah company. Most meals in this house were pre-packaged and microwavable. I was made to choose between a relationship with a live-in boyfriend and the law school world. And like many have done before me, I chose the latter – and would do it again. In fact, on my very first day of law school, I wrote on Facebook: “Started my law career today. And for my next trick, I will make my relationship disappear.” It was always going to be the law over him. It would have been the law over anyone, though.

When I told people I was in law school, the first question I almost always got is, “Was it because of your child?” I find this question incredibly annoying and irritating, because I hear it so often. But, people are genuinely curious. After all, why does anybody choose to do something in the first place? More often than not, people do something out of reaction.

Sure, part of it was because of Judah. I had to go from expecting a typically developing child, to realizing I had to speak for this child for the rest of his life – and knowing what the law would do to protect him (and especially what it wouldn’t do). So, it seems rather obvious that my prior life experience would shape how I approach my career. Had this never happened in the first place, I’d probably still live in Maine. I’d still be a journalist somewhere, maybe at the paper I had been at before moving back to Iowa. Maybe I would still be with Judah’s father. But I don’t really wonder about that anymore.

But what happened, happened. And so here we are.

Anyone will tell you I’ve always loved a good graduation, even if it was not my own:

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My sister will probably kill me when she sees this. But it’s not my fault the 80’s made these hair styles a thing.

 

Graduations have a sense of looking ahead, and an atmosphere thick with anticipation and dense with excitement for the next chapter in life and what it will bring. I suppose I’ve felt that with my last two graduations. Then again, in high school, I was just excited to go to college so I could get away from my parents and party. Then four years later, I was excited to go back, having decided adulthood and attempting fiscal responsibility was for suckers (my family had other ideas, though, as I wished the best of luck and told in no uncertain terms the gravy train had left the station – and I wasn’t on it).

I used to get really sentimental over graduations. Part of that is because people in my family, especially me, are sentimental about everything, almost to a fault. The other part is that after spending so many years going through academic and social experiences with people, it is not uncommon for people in that situation to bond quickly, and I tend to hold on to those bonds more strongly than other people might. That made graduating and moving on more difficult for me when I was younger.

After college graduation, I knew exactly what I was going to do with my life: I was going to be a newspaper journalist, win Pulitzers and work at the NY Times. I’d write a few books, never marry (though I planned to have many high-profile affairs with male socialites) and never have children, but maybe have something chic, like an addiction to oxycotin, which I would overcome in my 40’s and then be that mysterious writer that people love but know nothing about because they live in a cabin in Maine and hate being seen in public (incidentally, I am pretty much describing Stephen King). All great writers have some kind of psychological problem or addiction – that’s what makes them tragic. And tragic sells!

It’s laughable now, looking back on my 22 year-old self, who grew up privileged and loved and tended to over-romanticize everything, green to the real world and how ridiculous that life plan sounded to older grown-ups. To my credit, however, I got as far as becoming a newspaper journalist. Then I got pregnant, and the rest, as they say, is history. And arguably, I’m tragic enough as it is.

And after this graduation? Who knows. I’ll keep parenting, and probably by myself. Maybe I’ll try to meet someone with whom I can share the rest of life’s adventures, and maybe I won’t. I’ll be an attorney, though where, I don’t know yet (“I’m undecided with prospects,” I tell my favorite professor, ashamed to admit to him I don’t have plans after the bar exam yet). And frankly, it’s all ok. Maybe it’s being in my 30’s (!) or being a parent, but I’m ok with moving forward. Life is uncertain after graduation, but uncertain doesn’t have to mean bad. Five years ago, I would have never guessed I’d be here, but I am. And part of it – maybe all of it – has to do with this kid.

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The Great Purge

Spring break here means one thing: cleaning and getting rid of the junk Judah and I have accumulated over the last 12 months. The Great Purge season is here! It’s finally time get rid of all our old shit and inevitably replace it with new shit, no matter how many times I tell myself I don’t need a new wok, because the old wok never left its packing in the box!

It never ceases to amaze me how one person seems to collect so much…crap. Let’s be frank with ourselves, a lot of possessions we in the U.S. own are crap. A few examples: a bottle of cherry blossom body splash (what adult wears body splash?); a loom from that three-week period where I thought my calling in life was to weave and sell tapestries in a roadside stand outside a hippie commune (and if this lawyer thing doesn’t pan out, who’s to say this isn’t still my calling in life); a pile of plastic mugs I saved from every single high school and college sorority and fraternity formals, and others I apparently thought would look better in my college apartment instead of the on the shelf of the bar they belonged to (read: I stole them); a pair of sweatpants from my high school’s rival school that are showing their age with rotting elastic and bleach stain, and were clearly issued to a male – to whom, I don’t remember, and I probably don’t want to. And papers are everywhere: an extra transcript from my undergraduate university that I obtained to give to my law school when I applied; a pile of printed emails from my old newspaper job in Maine from my adoring readers (mostly the abusive ones that my friend Keith and I would read out loud and then laugh uproariously about. Man, those people loved me out there); pages ripped straight out of magazines of women’s fashion and hairstyles, and judging by the styles, I did this circa 1995-1996 when I was in junior high school.

Omg WHY DO I STILL HAVE THESE THINGS? And that’s just stuff belonging to me in the basement.

I can usually fill about five large boxes of my stuff for Goodwill during the Great Purge, and maybe another six garbage bags (no one needs the old sweatpants from the unknown high school boy caller. Time for those babies to end up in an opossum’s nest by the interstate). Aside from the photo albums and a plastic storage container of personal items, there’s very little of my own stuff have much emotional attachment to. It’s just stuff. There are clothes in the closet with tags still on them. The TV is good, but not great. I watch the same three DVD’s over and over again, leading me to wonder why I own any other movies. It’s all just…stuff.

Then I get to Judah’s room, and that’s where the Great Purge slows to more of a trickle, mostly because I end up keeping all of his stuff, even the things that would typically considered junk by most people. I start with the clothes, with the self-imposed rule I can keep one or two outfits. By the end of the sorting, the “keep pile” takes over most of the bed (“This shirt was $25, I can’t just give it away!” “This little hippie outfit was so cute. You get to stay.”And the classic: “I’m saving you for the next baby, even if it’s a girl. And not a baby.”). By comparison, the “give-away pile” has two t-shirts in it. And they’re ugly.

Next are the toys and stuffed animals. Judah has about three toys he actually cares about, and would say “good riddance” to the rest, but some of them are used in various occupational therapies or were bought from an adaptive toy distributor ($$$$), so they automatically end up in the “keep pile.” It gets more difficult when I get to the stuffed animals. Kids are a magnet for these things, and most of them are crap. Every time you go on vacation, the kid needs a souvenir, and dollars to donuts, it’ll be a teddy bear with a t-shirt declaring, “Duluth, MN!” or “I Survived Splash Mountain!” There is still a mountain of ancient stuffed animals in my childhood bedroom, some of them crumbling from exposure to the elements and 25 years of being in existence. Either my parents have forgotten about them or can’t bring themselves to get rid of them, which to me, just seems silly. One of them is a koala who is so old, his fake fur is falling out and his plastic eyes are dull and scratched. He’s gross. He’s so gross I wouldn’t give him to a thrift store or Goodwill to end up in another child’s arms. I brought this up to my father and said I was getting a garbage bag to round up the koala and some of his plush companions for the dumpster.

“Don’t you even think about it,” he warned. “If those toys leave, they’re going to your house.” Not wanting more crap piling up at my brand new house, I just said to hell with it and left them all there.

Clearly, the ability to get rid of these things has not evolved with my own offspring. Judah has at least 100 plushies, and the only one he cares about Curious George (I know, weird). But every springtime when the Great Purge occurs, I find it hard to get rid of any of them.

When it comes to these things, they aren’t just stuff. They’re memories and emotions of the last five years of my child’s life – four of them not expected to even happen.

There’s the teddy bear with a plaid scarf. He was sitting in the crib I bought from a family while I was pregnant. I had no money and felt totally alone, probably because I was. I found the crib listing on Craig’s List, from a family at least 40 minutes east of me. Each of the children in this family had used the crib a handful of times each, the post said, so it was in like-new condition. The price didn’t give me much choice. There was no way I could afford a brand-new crib. I nervously knocked on their door, part of me wondering if they were going to kill me so they could steal my fetus and sell him on the black market. Hey, it happened on a Lifetime movie. Obviously, they were a nice family who just wanted to sell a crib, because here I am, alive and well. It was assembled in their living room, complete with the mattress, and the teddy bear sitting in the corner of crib, with shiny plastic eyes and a comforting embroidered smile.

“Bear’s cute,” I remarked.

“My son saw him at the toy store and insisted we buy him for the baby,” the mother said.

Considering the people who knew me were still coming around to the idea that I had decided to procreate, that a complete stranger wanted to be kind meant something. The crib is downstairs, waiting for it’s next owner or occupant, whichever I decide life will take us next. The bear is on Judah’s shelf.

There’s the plush monkey with the velcroed hands that are meant to hang from an IV stand or to hug a flower arrangement. He wears a hospital gown with lavender polkadots with red lettering, “Hang In There!” Obviously, he looks like this because he was purchased in a hospital gift shop – the one in Maine Medical Center in downtown Portland, to be precise. He was a gift from my friend Vanesa, who was working at the hospital and living in Portland at the time of Judah’s birth. She thought the monkey would be a cute cheer-upper, but probably not expecting we would still be holding on to it five years later. Every spring when I clean out Judah’s room, the monkey stays.

There’s also the seahorse whose torso gently lights up and plays lullabies when you give the Heimlich. You can buy it pretty much anywhere; it’s not a toy you give to someone with a lot of thought put into it. This is actually a toy for infants, which is what Judah was when he received it. He doesn’t listen to it anymore (truthfully, it sounds like it has drank copious margaritas underwater because the batteries need to be changed), but it was the last gift – actually, one of the only gifts – from my grandmother before her death. My memories of her are few, but specific. The television in her house was on 24/7, with the volume as high as it would go, even if no one was in the living room to watch it. She smoked almost constantly. I don’t know if an oxygen tank would have been enough to make her give up cigarettes. The back of her house was an elaborate sewing room, covered with quilts and soft fabric dolls she would give to people; from a clothesline, articles of clothing she fixed for people would be hanging up. Sewing was more than a hobby; it was a passion, perhaps the only thing she ever truly enjoyed in life. She never met any of her great-grandchildren. I can’t remember a time she ever told any of us grandkids that she loved us, or seemed happy that we were at her house for a visit. A card I received from her after having Judah simply read: “Sorry things have not turned the way you wanted” (the understatement of the century). The brightly-wrapped gifts, which arrived two days before Christmas that first year, were a total surprise. In one, a vibrant-colored and animal-patterned quilt, handmade, was folded up; the other contained the seahorse. She died two months later. Her husband followed a month to the day later.

And of course, Judah’s first Curious George and the one that has been “loved” the most. His back has been stitched up several times, he’s been left overnight at Beaverdale Books and has been a loyal companion at birthday parties, on vacation, in the operating room and the first day of school. This George was a baby shower gift from a family friend, who probably thought she was doing something nice for my family’s dumb, knocked-up single daughter.

The Great Purge ends at Judah’s doors, and if that makes me pack rat, so be it. Maybe the old toys, drawer of small clothes and the stuffed menagerie keeping watch in my old room isn’t so silly after all. Maybe it told my parents, at least for a time, the story of my own childhood.

Return

I do my fair share of venting, as anyone will tell you, but this situation has me so pissed, I don’t know if venting is even the right word for it.

Several years ago, before I moved to Maine, I had the good fortune of working at the Des Moines Register with Paula Lavigne (since I have her permission, all of the names in this post are actual identities).  Journalists can be a nomadic people by nature, particularly when we’re younger and before we have families.  People leave newspapers and move on to new papers, online sites, media projects, etc., and this was the case for both us: I to Maine to work for MaineToday Media, she to Nebraska to work for ESPN’s Outside The Lines.

Paula gave birth to Wyatt a little over a year after I had Judah.  Wyatt was a beautiful, happy baby, but his parents became concerned after he stopped hitting developmental milestones around the age of three months.  A doctor came back with a diagnosis: spinal muscular atrophy, known as SMA.  SMA is a rare genetic disorder which, unfortunately, tends to take its victims at a very young age, but not before taking away the child’s ability to move, vocalize and breathe.  Though some children live for several years, most will die as infants or toddlers.  An estimated six million people in the U.S. are genetic carriers of SMA – and most of them have no idea.

Within weeks of the diagnosis, Wyatt’s health began to rapidly decline.  He passed away just before Christmas 2010 at five months old, as his parents read “Good Night, Moon” to him for the last time.  I will never forget reading his obituary.  I will never forget the feeling I had when I heard of his passing – and I had never met him.

Most of us with severely disabled children know from the time of diagnosis and prognosis that we will outlive them; it’s merely a question of how long we’ll be together.  It can be months, as it was for Paula, or might be years, as it could be with Judah.  Even when you know something is going to happen, and you “prepare,” you aren’t really prepared.  You never move on.  How Paula and her husband, Chris Arnold, have shown such strength and courage for the last several years, I’ll never know — and I’ll never be ready to know.

Being a journalist, Paula wrote about Wyatt and all of her memories of him in a journal.  It contained the happy times, the devastating moments, and an explanation of who was Wyatt was for his younger siblings who will never know him, twins Penny and Paxton (who are negative for SMA).

It is not uncommon for those of us with special needs children to keep journals of “before” and “after” the moment that catalyst for life to change.  If you don’t document “before,” you will forget it (even parents with typically developing children know there was a “before,” but life “before” baby is now like a distant memory).  And while the pain of immediately “after” can be immense, it was what shaped your strength and brought you to the moment of now.  It is important.

I also have a journal about Judah that is not electronic or online.  While I consider myself to be a rather open person and usually will answer any question I’m asked, there are some things I simply will not discuss here or with other people.  But those things are in the journal.  While I don’t apologize for the thoughts I put in there, I would surely die if anyone ever read those things without my permission.

And, unfortunately, that is also a feeling Paula is experiencing.

Last weekend, while at a Superbowl party, someone broke into Paula and Chris’s home.  The thief could have gone for the big electronics, maybe some cash.  Instead, this person went for some pieces of inexpensive jewelry — and the journals about Wyatt.

There are some things that just don’t have a price on them.  They cannot be recreated in their entirety because they were created in the moment – and you can’t get those back.

To the person responsible:  Do the right thing.  These notebooks mean nothing to you, and surely by now, you’ve figured that out.  Yet, they are someone else’s entire world.  Not only did you violate a family’s privacy by entering their home, but you have caused more pain than you could ever try to sympathize with – you have taken the last part of a child’s life that this family could hold on to.  If you do not do another goddamn decent thing in your pathetic life, just return them.

To read more about this story, click here for Rick Ruggle’s article in the Omaha World Herald.  Click here for the story that was aired on KETV.

To learn more about SMA or donate to the SMA Foundation, click here.

Thanksgiving

I don’t get many comments on my blog — that is to say, I don’t get many on the actual website; the majority of the comments about it are made to me in-person.  This is a preferable ratio; still, when I receive a notification that there’s a pending comment, I notice, since it is an infrequent happening.

Also, I haven’t had a chance to finish an entry for several weeks, so naturally, I suspect that means less people have looked at the page.  Makes sense.  Imagine, then, my surprise this afternoon when I saw a notification of a pending comment.  Imagine, also, my surprise, at the content, penned by the originally-named “Anonymous:”

“Why don’t you just adopt?  Then maybe you’ll have a child who can actually live a fulfilling life.”

In all honesty, my initial reaction was one of amusement.  Clearly, anyone who has seen Judah in action knows how much joy he brings to friends and strangers, and that his life is plenty fulfilling.  So this person’s total ignorance was kind of…cute.  At least, at first it was.  But not cute enough that I was going to allow it to appear on here.

Then, I got pretty ticked off.  What, exactly, was this person suggesting — that my child’s life was somehow worth less or not as important as someone else’s because he lacks the ability to make unsolicited stupid commentary on every little thing he hears and reads (much like “Anonymous”), or that he can’t walk around acting like a complete jackass like other typically developing people can?

Then I got extremely ticked off, and just could not let it go.  I’ve always had a problem with dwelling on things that are probably largely insignificant, but I felt irked.  And I still feel irked.

“Fulfilling” is a subjective term, much like “intelligent” or “beautiful.”  Some may find the work of Dali to be “beautiful,” I find it rubbish and prefer Warhol.  No one is correct or incorrect – it is entirely a matter of opinion using the same word.  This is no different.  There’s a mainstream, socially-accepted definition for a subjective term like “fulfilling.”  And there’s the literal definition.  If you look it up in the most recent edition of Merriam-Webster’s Dictionary, you shall find the following definitions:

“Ful-fill-ing: To succeed in achieving (something) : to make (something, such as a dream) true or real;” and

“to convert into reality; to develop the full potentialities of.”

So, Anonymous, if you meant that I’ve failed in having a child who can have a fulfilling life as, say, a major baseball player, a guitar playing crooner, or a CEO, then yes, Anonymous, I suppose you are correct.  Congratulations.  However, because people I know have class and tact, I speculate that you and I are strangers who have never met, and never will.  I don’t know what you do for a living and if you find it…well, “fulfilling.”  I don’t know if you have a family whose activities keep you busy 24/7.  I don’t know if you have hobbies, a favorite charity to volunteer for, or recreational interests.  But since you appear to have such a confident grasp on the concept of “fulfilling,” I will assume for the sake of argument you have all of these things.  Good for you.  Seriously.  I don’t blame you for thinking you know that my life would be better with a normal child only.

But here’s the thing about subjective adjectives: there is no way they can measure something because they are entirely dependent upon interpretation.  Which means, when I see my child participate in a dance class, instead of just lying on a pillow, unable to move, I see him succeeding at achieving something.  I see him as reaching his own potentials, which — correct me if I’m wrong — is the literal definition of “fulfilling” (see above for reference).  Or when I see a group of my friends spend their Sunday afternoon at Judah’s dance recital or spend an evening holding him while gently patting his back, and the fulfillment I feel knowing he is valued and treasured by so many people, especially when there are some people out there, apparently like yourself, who do not see the point to.

You, Anonymous, probably would not consider any of these things to fit that definition, and that’s ok.  Really, it is.  But don’t assume that you know someone else’s life is “unfulfilling” just because they are unable to do all the things you can.  You couldn’t even possibly try to appreciate exactly how crazy, hectic, wonderful, trying, joyful, tear-filled — but mostly fulfilling — both my child’s and my lives are.  I can only hope that someday you’ll have the good fortune of experiencing the same feelings.

Five Years

Originally written Oct. 20, 2013

Five years ago, I found out I was pregnant.  Like today, five years ago was a Sunday.  And like today, it was chilly outside, the leaves were starting to turn colors (though autumn in Maine is certainly more pronounced than autumn in Iowa) and Halloween decorations graced window displays in town.

I have never made any bones about it that I was not happy to find out I was pregnant.  It’s not a nice thing to admit when there are other women who probably would have murdered to switch places.  But frankly, I was not happy.  I had just turned 25 years old and it was too soon be a mom.  Hell, I didn’t even really like kids, and neither did Judah’s father.  We had talked about what the plan would be if this happened, which is a conversation I had never had with any other man I had a relationship with — it’s almost as if we were expecting this to happen someday, even though, obviously, we were not.

The day after getting a positive pregnancy test, I made an appointment to get it confirmed.  False positives are rare; it’s more likely to be pregnant and get a negative pregnancy test result than the other way around.  But, stranger things have happened to me, so I decided to get things confirmed before I sounded the alarm.  A lot of people would not be happy to hear about this if it was for real.

An ultrasound confirmed there was a viable fetus.  It was the size of a sea monkey.  I couldn’t even see it until the doctor pointed it out to me.

“That’s a speck,” I said.

“Um.  It will get bigger,” the doctor said, looking increasingly worried about someone like me being in custody of a minor.

“It looks like this speck,” I said, pointing to another dot on the sonogram.  “Oh, Jesus.  Is that another one?!”

“No,” the doctor said.  “That, um, that…speck is attached to the uterine wall.  This other one isn’t attached to anything, see?  It’s just a part of your uterus.”

“Please don’t say uterus ever again,” I said.  I gathered up my coat.  I was ready to go home and pretend this little field trip was a figment of my imagination.

“Are you going to be OK, Mrs. Malloy?” the doctor asked.

“I’m not a Mrs.  Don’t call me a Mrs.”  I pulled my sunglasses down over my eyes so the doctor couldn’t tell I was starting to cry.  “I need to go now.”

When I got out to the car, I promptly vomited everywhere.  I don’t know if it was from being knocked up or nerves.  Probably a little from Column A and some from Column B.  What was I going to tell the baby’s father?  And what would I tell my parents?  My parents had always dumped a lot of money into my education and extra-curriculars — private school, university, dance lessons, piano lessons, gymnastics, professional chess instructors, golf pros, the list goes on.  I was expected to be the overachieving offspring who would grow up to be successful and my parents would brag to their friends about their youngest child who outshone everyone else’s adult children.

You don’t outshine your oldest cousin — the CEO of the hospital campus at University of California-Davis — or Josh Greenberg — the neighbors’ surgeon son — by being knocked up by someone who barely had his shit together.

I’ve also never made any bones about the fact that I’m pro-choice, and so are most of my friends (and I still am.  I cannot tell someone what the right decision is for them because I do not have to live their life and deal with the consequences of those decisions.  Likewise, no one can tell me what is in my best interest; only I can make that call).  While I was never encouraged by any of my friends to choose abortion, a few of them reminded me the choice was still on the table if I wanted it to be.

“You don’t have to do anything you don’t want to do,” one of the first friends I told about the pregnancy said.  “If you decide this is a road you don’t want to go down, I won’t judge you.  People do it everyday.”

“I don’t?”

“Of course not,” she said.  “This is America.”

“Would I be good at this, do you think?  This parenting thing?”

There was silence for about 15 seconds, then a deep sigh.  “Look…” the friend started to say carefully.  “I’m not telling you what to do, I’m just saying…there are choices.”

Confidence.

Not that I blamed her for her lack of confidence in me.  I was extremely irresponsible.  I still liked to go out as though I was still a college kid.  There probably are not a lot of  women out there who were nicknamed “Diesel” in college because they loved to drink regular Budwieser beer with every meal, including breakfast.  But I carried this nickname throughout college and even a few years afterward.  I rarely paid bills on time so money could go towards shopping for new clothes and socializing.  I once planned a trip to Spain impulsively on a credit card and gave no consideration about how I would pay off the bill for it later; I did the same thing 18 months later so I could join a friend in Ireland.  Generally, I just liked acting like a real asshole.  I was smart, young, and had grown up in an environment where people told me I could do whatever the hell I wanted to because I was Meghan Malloy.  To 25 year-old me, mothers had the worst lives imaginable: changing exploding diapers, listening to screaming all day long, getting puked on, and just basically giving up everything they wanted for a brat who doesn’t appreciate it.

Like I said, a real asshole.  I’m amazed I had any friends at this stage of my life, let alone a man who would spend any amount of time with me.

Then there was the whole inability to keep anything, including cacti, alive.  There’s a reason all the plants in my house are fake.

There was a clinic about 40 miles away from my house where women were able to access chemical abortions.  Two days after getting the pregnancy confirmed, I called in sick to work and drove down to talk to a counselor.  I can’t remember her name or what she looked like.  I remember she was polite, though.  She talked about where to go for prenatal care if I chose to continue the pregnancy (of course, I was young and healthy, so I had not found a primary care doctor in the area, despite the fact I had lived in Maine for a year.  I remember she was very concerned about that).  The clinic didn’t facilitate adoptions, but she knew some agents in the area and had the telephone number for Catholic Charities.  Finally, she said, “We provide termination services as well.  I can talk to you about the process for that option, too, but only if you like.”

“I’d like,” I replied.

We discussed the procedure: I had X number of weeks for a chemical abortion, another X number of weeks for a surgical abortion, and then the “no-turning-back-point.”  The counselor was frank in describing both procedures, what to expect afterwards physically and possibly emotionally, and things of that nature.  “Do you have anyone who can help you when you get home, honey?” the counselor asked.  Tears streaming down my face, I shook my head no.  Before leaving, I scheduled an abortion to be done a few days following this visit.  It was either do this parenting thing on my own, or terminate and have the life I had been enjoying back.  I wasn’t convinced termination was the right thing, but I also didn’t want to parent alone.  Society likes to pick on single mothers.  They’re all sluts, society likes to say.  They love being on welfare because they’re all lazy.  Their children grow up learning to repeat the cycle of dysfunction.  I didn’t want people to think that about me.

I called in sick again the day of the procedure.  It was very cold this day, but no snow had fallen yet.  The interstate was covered in fallen leaves and the pavement was wet.  I would turn the radio on.  Then off.  Then back on.  There is a toll booth on the interstate that sort of marks the halfway point between home and the town where the clinic was.  I handed my $1.25 to the attendant, and the coins fell out of my shaking hand.  The attendant, clearly annoyed, said he’d pick up the change after I went through the booth.  There had been some reports of methamphetamine trafficking along the turnpike around that time, and no doubt from my erratic and nervous behavior, the attendant thought I was tripping the light fantastic.

The radio was still on. A song, “Father of Mine,” by Everclear, started playing.  For those who weren’t into the angsty teenager ska-music scene in the late 90’s like I was, this is an autobiographical song about a boy who grows up to achieve his dream of being a famous musician after being raised in poverty by his single mother and abandoned by his father.

To this day, I still don’t know what came over me, but my next actions were impulsive and without much of a comprehensive thought process.  I got off the turnpike at the next exit, and turned back around to go north, toward home.  The car was almost fluid in motion; barely obeying the stop signs.  I wanted to get back on the northbound interstate before I changed my mind again.  Still kind of shaking, I wondered, “Millions of people are single moms.  How hard could it be?”

Famous last words.

Several people have asked me if I knew what would ultimately happen to my child, would I still have kept the pregnancy?  I never answer, partly because it’s not their business and partly because I just don’t know.  Twenty-five year-old me then didn’t know half of the things 30 year-old me does now — about life, about humans, about myself.

That’s not to say I don’t sometimes wonder what life would be like had I kept driving south for another 10 miles.  I don’t wish I had whatever that life would have been.  Wishing for something and wondering about something are two completely different things.  I probably would still live in New England and be away from my friends.  I would still probably be a fiendish drinker.  Before the baby, I used to drink a lot every single day.  Like, enough to tranquilize David Hasselhoff.

David_Hasselhoff

There would still be trips to Europe just because, and whenever I wanted.  It’s doubtful I would still be a parent.  Would I have felt regretful for not being a parent for five years?  Would I feel a void in my life?

But without Judah, I do know I would not be in law school, where I have met close and loyal friends who would do anything for my child.  I know I would still be clueless about how to behave like an age-appropriate adult.  I know I would have not idea how far I can be pushed – and still survive.  Sometimes, the most impulsive decisions are the most defining.  And, truly, the most excellent.