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Posts Tagged ‘Will’

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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Not long after my son Will was diagnosed with autism just shy of his second birthday, someone sent me this little bit of prose called “Welcome to Holland.” It basically equates having a special-needs child to having your travel plans messed up. Go ahead and read it. I’ll wait.

(Insert favorite muzak here.)

Done? Ok. So, when I first read “Welcome to Holland,” our whole household was in crisis. About to have Baby #2 (aka: Julia), we were grasping at straws, looking for any kind of comfort or hope or promise that there was some light at the end of this tunnel. No, not even that. I was just looking for someone to tell me we were truly in a tunnel and not, as I feared, in an inescapable abyss. In that desperate state, “Welcome to Holland” seemed like a really nice little anecdote. I thought it had been written by a parent of a child with autism (I was wrong), and I took her words to mean that things do get better with time and acceptance (I was right).

So, time passed, and my feelings on this changed. And by “time,” I mean about three weeks. And by “changed,” I mean that when I reread the Holland story, I thought something along the lines of, “Screw Holland. This story is a complete load of minimalizing crap.” From then on, whenever anybody started recommending I read this very lovely bit of Pollyanna-style, all-things-happen-for-a-reason, the-world-is-made-of-marshmallows, illogical bullshit, I simply declined. Pressed for my opinion on the essay, I said it reminded me of a religious answer to a scientific question: it sounds really nice and makes sense…if you don’t really think about it too hard.

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I remember the first time I “came out” to a stranger. I was at Target (as usual), and a woman said “hello” to Will and waited for him to respond. I said “hello” back for him, smiling and telling her, “Will isn’t being rude to you, ma’am. He has autism, so he doesn’t speak.” That night, I told my husband Marty about the exchange. I was incredibly proud of having publicly stated, to someone who didn’t need to know, that Will had autism. Doing so was a big step for me.

See, the thing about autism is that Will looks like everyone else (although, and I could be a teensy bit biased here, I do think he’s maybe a little cuter than the average kid). He “passes” for “normal” the way some of my gay friends used to “pass” for straight before coming out. People cannot look at Will and tell that he’s any different. And so I think it comes as even more of a surprise to people when I tell them he has autism.

At first, I didn’t want to tell people Will had autism because it was too painful. I would cry just thinking about autism, so I tried not to talk about it in front of Will. And I knew I didn’t have to tell people, given how Will blended in. So, in those first few months A.D. (that’s “After Diagnosis” in our house), I stuck to telling family and close friends. I even asked them to keep the news to themselves, not out of shame, but out of fear. I was petrified that a girlfriend would mention Will’s autism to another mom, and that I’d then run into that mom, say, at the park. I knew if I had a random acquaintance come up and give me her condolences (because that’s how it felt in the beginning; no one knew what to say except how sorry they were), I would completely break down on the spot.

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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

He hit me again last night. This time it was so hard I heard my nose crack and I fell to the floor. While I sobbed in pain, he continued screaming, seemingly incensed all the more by my cries. I slunk from the room and fumbled through the freezer for an ice pack, all the while listening to his continued raging in the next room. Tears flowing down my face, I wondered how my life had come to this.

Long ago, I promised myself I would never marry a man who would even consider raising his hand to me or our children. I would never accept a partner who would intentionally hurt me because my adult life would be what I wanted it to be: happy, peaceful, free of yelling or violence or the threat of either. My children would never fear me or my spouse. They would know unconditional love and security at home. And yet, last night, I lay on the couch, icing my face, contemplating how much yelling, hitting, and eggshell-walking goes on in my home, no matter how much I struggle against it. How had I gotten to this place? How did I become  the type of woman who is grateful when her bruises aren’t easily visible? How did I come to have this secret and to carry this guilty weight of unabating abuse? Why was I so ashamed to tell my friends or family?
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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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