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Posts Tagged ‘Childhood’

Waiting for Dad to pull the car around. Will had not been outside in 11 days. Time. To. GO!

Time to go!

We are home. Well, we’re home at Marty’s house. Julia and Neville are spending one last night, each with one of my dearest friends, so Marty and I can have this one quiet night at his place, getting Will settled into his usual surroundings without the chaos of adding an excited little lunatic who would be barreling around the apartment, bouncing off the walls…or the dog, either.

It’s been a long road. The days blurred together in a haze of doctors, nurses, techs, therapists, surgeons, consultants, dietitians, social workers, hospital staff, and friends trailing in and out of Room 4539. When Marty called me on May 22 and told me Will needed to be admitted to the hospital, our pediatrician thought we would be there for a day or two. By the time we left Shands this evening, Will had been in the hospital for eleven days. In some ways, it felt like we were there forever; we fell into a bit of a routine and got to know the compassionate, talented staff. But for the most part, our time in the hospital flew by because we were so busy and worried. Will’s status changed by the hour, sometimes by the minute, and there were moments when I smiled and sang to Will through a procedure while wondering if he was going to die.

As good as it feels to actually have brought Will home, there were moments, I’ll admit, when I was afraid to do so. In fact, yesterday, I was reminded of The Shawshank Redemption, to draw a completely false parallel, when Red, who has been in prison all of his adult life, identifies himself as, “an institutional man.” “These walls are funny,” he says, “First you hate ’em, then you get used to ’em. Enough time passes, you get so you depend on them.” And while the hospital is certainly not prison by any means, we certainly hated being there initially, and we were not in control of how long we would be staying. As time went on, somewhere along the line, I started to fear leaving. What if I couldn’t learn all this tube-feeding stuff? What if we got home and Will refused the tube feeds? What if his “button” got infected or pulled out or if there was some other problem I didn’t even know could happen? At least in the hospital, there was help. There were people there around the clock, looking out for us. Here, we’re on our own.

All smiles on the short ride home!

All smiles on the short ride home!

I’m sure those feelings were exacerbated by the fact that I hardly left Will’s room, let alone the fourth floor. In fact, the entire 11 days he was there, I left the hospital for a grand total of about two hours. When we left this evening, I hadn’t been outside since walking downstairs for a few minutes with a friend on Tuesday.  It just occurred to me that that was six days ago. It’s not that I didn’t want to go take a walk or run to the store. And Marty certainly offered to take the night shift and let me go sleep at his place. But I just couldn’t leave. Partly, I was irrationally sure that something bad would happen while I was gone. But it was also simpler than that: every single person who works at the hospital is on a different schedule. The pediatricians, med students, surgeons, nurses, therapists, consultants, everyone. They all come … whenever they come. And if I were to leave for an hour and miss the pediatric team doing rounds, for example, that’s a big deal. I’m Will’s advocate. I’m the one who asks questions and explains his history and navigates the foreign terrain of medical-land. That’s my job. So I stayed.

Almost every night when Marty went home, I would go to sleep when Will did, or close to it, knowing we would be woken throughout the night and hoping to get a few hours of sleep in a row. And almost every day, I would hold Will still through blood draws or sing through tears during a procedure, or rub his feet and legs while he played with his iPods and high-fived the nurses.

Supply central. Of course, there's more stuff in the kitchen, and then there's the IV pole onto which the feeding pump is affixed and the formula bags are hung. It's new, but it'll get to be normal enough pretty soon.

Supply central. Of course, there’s more stuff in the kitchen, and then there’s the IV pole for the feeding pump and formula bags. It’s new, but it’ll get to be normal enough pretty soon.

Now that we’re home, there will be a new routine. We started it this evening by organizing all of Will’s feeding supplies and doing his first home feeding. We will get into a routine here, just as we did in the hospital. We will start taking turns working and tending to Will. Julia will go to camp. Neville will snore under the table. Life will get back to normal. A new normal.

Photo Jun 02, 10 50 20 PMAnd sooner than I think, Julia and I will go home to Kansas City, and Marty will live in this new normal with Will. And we will all miss each other. And I will cry more than I admit, knowing that my son is so far away, always feeling like part of me is missing, just as I know Marty feels about being away from Jules. But the thing is, we’ll do it anyway. Because no one is ever promised a problem-free life. We aren’t even promised a life. So when we get a second chance at it, when we come that close to losing it all, instead of focusing on the fear or the sorrow, we owe it to ourselves and our kids to live each day with pure gratitude for the opportunities to succeed, screw up, love, struggle, laugh, play, work, grow, learn, and simply BE. Because otherwise, what were those 11 days for?

 

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Will is on the couch fidgeting in his peripheral vision with a piece of frayed green yarn, artfully and very deliberately coated in masking tape by my hands under Will’s nonverbal instructions. Julia is watching Madagascar 3 for the thousandth time, and Marty, my soon-to-be-ex-husband and the kids’ loving dad, is in the kitchen blessedly making coffee. And me? I am at my desk, thinking about the article that ran about my little family in this morning’s Independent Florida Alligator.

Will was around 3 in this picture, but it’s one of my all-time favorites.

The reporter, Colleen Wright, a UF sophomore, showed up last week at my garage sale, having heard that my goal was to raise money so I can move to California where, while I don’t expect to arrive into some kind of Oz filled with free speech therapy centers on every corner, there are most definitely a lot more options and available, affordable, accessible services for a child like my son, Will, who, at 7 and a half, is nonverbal (we always say “preverbal,” because we remain hopeful) and has autism, OCD, sensory integration dysfunction, and a host of chronic health challenges. Wright questioned me for an hour that morning, respectful and inquisitive, but clearly with no background in autism.  (more…)

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This week, I began guest blogging for Momnificent!, an outstanding site and business run by Family Success Specialist and Life Coach, Lori Radun. I’ll be posting about life as a special-needs parent on Lori’s blog once a month for now, and I’ll share links here.

Here’s an excerpt of this week’s post. Follow the link at the end to read the rest at Momnificent.com!

I Am Alice

When my son Will, my baby, my first-born, was diagnosed with autism at 22 months, I felt as if the ground had opened up and swallowed us whole. I felt we’d been shoved, head first, into this bottomless abyss and were in a slow-motion free fall that might never end. And then, on the other hand, I wasn’t sure I wanted it to end, wasn’t sure I wanted to know where rock bottom actually was, because surely this moment, this panic, this grief had to be rock bottom. Surely it couldn’t be worse. But in the days and weeks that followed, I found that it could be worse, and still we were in a free fall.

In those first months, pregnant with my daughter and reeling from Will’s diagnosis, floating from doctor’s offices to therapy centers to support groups, I watched the world move around me like Alice flying downward through the rabbit hole. How did we get here? Where IS here? How did I not know this whole alternate existence was right beneath my feet? When and how will we go home? Only Alice wasn’t 8 months pregnant with a two-year-old on her hip and she careened downward to Wonderland. And there was no chance I was going to suddenly wake up.

Eventually, and I really couldn’t tell you how long it took, I stopped falling. I started to find level ground. I gained my footing in this strange new landscape that had suddenly become my life. I realized I wasn’t actually in an abyss, hadn’t fallen down the rabbit hole, and actually could wake up from this nightmare to some degree. True, I couldn’t change the fact that Will has autism, but I could change one thing: how I responded to the situation.

READ THE REST AT MOMNIFICENT.COM!

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The first time I ever spent my very own hard-earned money for something special, I was eight. Having pretty much never paid for anything in my life, I’d saved up quite a few dimes from my weekly 20-cent allowance (earned through such thoroughly backbreaking activities as feeding the dog and setting the dinner table). I spent an evening counting the disgorged contents of my yellow ceramic ducky bank, stacking until I had 17 neat little towers of ten dimes apiece. I was feeling fairly full of myself for having saved such a fortune, quite adult and responsible, and then I begged, badgered, and bugged my mom until she agreed to take me to Toys ‘R Us.

When we finally arrived at that Nirvana of Plastic Kids’ Stuff, I rushed to the Barbie section where I found her: a “Loving You” Barbie Doll. She was the most magnificent Barbie I’d ever seen. Lavishly shod in the equivalent of 6-inch white Stripper Heels, Barbie wore a puff-sleeved, heart-dotted, ankle-length white chiffon gown with a breath-defyingly tight red velvet bodice. She was bedecked in gigantic fake ruby earrings and a matching ring that was, in reality, a plastic red dot on a stick that went through a hole in her hand and got lost in my brown shag carpet within the week. She was a living Valentine with Barbie’s trademark blonde hair in an I-Dream-of-Jeannie ponytail. She was gorgeous and perfect and completely inappropriate for playtime. I absolutely had to have that doll. (more…)

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As a little girl, I kept a diary. I entrusted my deepest secrets to this silent confidante, my safe haven. My diary was a mute therapist, a free space where I could speak my mind without shame or fear or reprisal. My diary was a little hidden piece of me, tucked away in the dark recess beneath my headboard.

My childhood passed into adolescence, and the stack of flowery little diaries gave way to a neat pile of black-and-white Composition Books straight out of a 1950s high school movie. My diaries had become journals. My journals had become a project. And along the way, I had become a writer.

Today my old diaries and journals are stored away, rarely opened but always held onto, tied in bundles with red satin ribbons, living in perpetual safekeeping like so many baby photos and pressed flowers. I doubt I’ll ever let them go. They are little, written portraits of me. And, when, on rare occasions, I look back at them, I notice one overwhelming trend that holds true from my 4th-grade, Holly Hobby, lock-and-key, 40-page mini-diary to my leather-bound traveler’s journal from my senior year of college: They’re all incomplete. Every single volume has at least one big, huge time gap.
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by Tara Cohen

My friend told me she does not like Facebook, and I started hyperventilating. Ok, maybe not truly hyperventilating, more like moderately over-ventilating, but still, I was worked up. I mean, how can anyone not like Facebook? Admittedly, I spend far too much time on Facebook. I realize I’m a Facebook junkie. A Facebook addict. A Facebook fiend. It’s seriously become a problem. The quietest guy I knew in all of my grade-school days Instant Messaged me asking if I worked for Facebook because I was on so much. So now I use the “offline” setting so people can’t see how often I’m there. Like I said: it’s a problem.

I’m on Facebook so much that I made it my browser’s home page. I cannot sit down at my computer without spending at least five minutes responding to wall posts and status updates, application suggestions and group invitations, game nudges and friend requests. I live on Planet Facebook.

So when my friend “Miranda” (who all but made me swear on my iMac not to use her real name) said she just isn’t crazy about Facebook, I had this flash of deja vu and found myself thinking of my mother-in-law.

I’ve been on my mother-in-law for ages to learn to use a computer. A few years ago, she went so far as to accept a hand-me-down from my niece, but all it did was sit in the corner and make her nervous. My husband Marty thought she was afraid if she hit the wrong key she might accidentally bomb China, and honestly, I don’t think he was far off. She called me for advice, and the conversation went something like this:

MiL: Tara, I just don’t know about this thing.
Me: Mom, we’re coming down in a week, and I’ll teach you how to use it.
MiL: Well, bring a new whatchamacallit for the AOL with you because the one I have is the wrong size.
Me: What?
MiL: It’s the wrong size. It’s not going to fit the computer.
Me: What??
MiL: The thing. The whoosie. The…the disc. It’s the AOL ninety nine, and the computer is an oh-two. It’s the wrong size.
Me: Wait…what???

We visited, and, what do you know, the disc was just the right size for the drive. I set up an AOL account, shut down the computer, and started from square one: Turn on the machine. As the desktop flickered into life, my mother-in-law looked skeptically at the various icons and said, “Ok. Now, which one is for the airplane reservations?” And so we started again:

Me: Mom, plane reservations are on websites, not actually on your computer.
MiL: What?
Me: Well, we start by accessing the internet using something called a browser.
MiL: What??
Me: If the computer is your house, then the browser is your car, and you drive the browser to the internet, which is the mall. That has websites, which are like stores.
MiL: Wait…what???

In fairness, my desire to have my mother-in-law use a computer is a little selfish. I’m comfortable with computers. I grew up with them, starting with my dad’s first home IBM, a monster of a machine, complete with the ability to turn the “green screen” to “amber” with just the flip of one glowing switch! (Hey, when your folks won’t buy you an Atari, you make do.) The upshot is that, after a lifetime of computer use, my internet connection goes down for an hour and I’m having heart palpitations. My mother-in-law, on the other hand, was born during the Hoover administration, uses a corded phone, and does not, to my knowledge, own a single CD. I realize we speak two different languages, but I still just can’t get past wanting to get her online.

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By Tara Cohen
When I was in fourth grade, I already needed braces. Badly. My overbite was pushing beaver-esque proportions (man, I wish I were exaggerating), and the kids at day-camp referred to me not-so-affectionately as “Chipmunk.” The orthodontist was concerned that if I had any kind of accident involving my face, those two disproportionately large front choppers would be history. But, he told us, before he could even start shifting those pearly marbles around, some of them would have to be sacrificed to the tooth fairy in order for the rest to fit properly. “You,” he informed me, “have a very small mouth.” And thus began one of the longest-running jokes in my family’s history. “Tara?? A small mouth? I really don’t think so,” they joked. “The child who speaks at such lengths she seems to take breaths only once every five minutes? The one who, at age 4, told her great-grandmother and every other grey-haired person she met that they were old and surely going to die soon does not have a small mouth. No. This kid hands off wrapped birthday presents and says, ‘It’s a sweater! I hope you like it!’ Surely you’ve mixed her X-rays up with someone else’s. This child has the biggest mouth of all time. Call the folks at that Guinness Book place. They’ll back us up. Seriously. Add some teeth. There’s room. We swear.”

Turns out they were both right. The ortho-sadist knocked me out and pulled four adult and four baby teeth from my disproportionately small jaw, and then, when I woke up, I told anyone and everyone all about it. Considering it was 25 years ago and I’m still talking about it, I’d say my family had a fair point. Considering I’m talking about it with a very straight set of healthy teeth, I gotta give the doc a little credit too.

While surgical extractions and four years of braces did resolve my “small mouth” issue and alleviate my “chipmunk” status, it did nothing to improve my “big mouth” reputation, something I continue to perpetuate even now in my 30s. While I am finally capable of shutting up long enough to let people be pleasantly surprised while opening their gifts, I’ve never quite mastered the art of keeping a strong opinion to myself. As I have no current aspirations to politics or mafia life, I try to think of it as an asset. Being loquacious (sounds better than “more-talkative-than-a-teenage-cheerleader-on-speed”) often leads to interesting conversations with people in the most random settings. Just a few months back I had the most fascinating two-hour chat with this dead-ringer-for-Obama-atheistic-democrat-with-two-goddaughters-and-a-flat-in-Soho on a flight to New York. He was the most fascinating single-serving friend I’ve ever met (If you didn’t catch that little pop-culture reference, go rent “Fight Club,” seriously.), and being unwilling to talk politics or religion, or to talk to strangers in general, would certainly not have led to anywhere near as interesting a flight.

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