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Posts Tagged ‘Compassion’

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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Yesterday, this little blog took in more than 300 site hits after I posted Life Unraveled, my perspective on being interviewed by The Independent Florida Alligator about how Will’s needs and the current state of disabled affairs in Florida are just not compatible. After the newspaper article and blog post ran, friends and family started sharing these links via social media, and I checked in periodically throughout the day, trying to make sure I saw each post that was visible to me so I could thank everyone for posting and thank those who offered comments of support, good wishes, and prayer.

Then, something truly remarkable happened. People I don’t even know started sharing the links and donating to our fundraising link. They were touched by our story, moved to action, and began posting on their own walls, sending me Facebook messages directly or through mutual friends, and offering their help. I cannot adequately express how overwhelming it is to have such love, positive energy, and support coming our way, to know that so many people want to help me help my son. The response has been more than I could ever have anticipated, and I am so tremendously grateful to everyone who took the time to read about our little family, share the blog and newspaper article, donate to our fundraiser, post messages of support, and offer ideas and suggestions of their own.

So much has happened, I realized I need a place to list all of the incredible things we have going on. So this post, “Gratitude,” will be the place to see all of the ways people can and are helping us, and I will update it as events change, start, and end. If you’re so inclined, please share this with people who have asked you how they can help us.

Current and Upcoming Events:

November 10th – 15th, shop with Body by Vi!

Katherine Edna Boyette is a Body By Vi representative. I’ve never even met Edna; she reached out through my friend Stacey Steinberg. But Edna is contributing to our moving fund by donating her commissions for 6 days. Here’s the post she put out on Facebook: “A chilly Saturday Morning to all my FB friends. Since November 1, a lot of you have been posting what you are thankful for. Many says family, friends, healthy children, etc. I myself is thankful that I have a family that supports me and that I have a healthy daughter who is now living her life helping others via Peace Corps. But then some of us are not that lucky. If you want to know what I am talking about, please take some time to read the blog post of my friend Tara Fitzer Cohen. Her blog says it all –https://inappropriateoutburst.wordpress.com/2012/11/09/life-unraveled/. To help Tara, I am running a fundraiser starting November 10 to November 15, 2012. All of my 10% commission will go to Tara. If you want to help, all you need to do is to purchase any challenge kit from http://healthybody.bodybyvi.com/. With your purchase, you are helping Tara and at the same time you are giving yourself a gift of good nutrition. You can share this site to your friends too. I hope that you can find in your heart to help support this fundraiser.”

December 2nd or 4th (TBD): Join us at Corks And Colors in Gainesville!

Rebecca Barborak owns Corks and Colors, a painting studio in Gainesville where plenty of my friends have had super fun Girls’ Nights Out! I don’t know Rebecca personally, but still she Facebooked me and asked if she could do a benefit night for us! Corks and Colors will provide all of the supplies and donate 100% of the proceeds to my moving fund. With 34 seats available in the studio, at $30 a head, we could raise nearly $1000! Please let me know if you’re interested in joining us, which of the two evenings listed above work better for you, and check back for a Facebook event link once the date is set. 

 

Ongoing Ways To Help

You can also help by hosting an online or in-home Thirty-One party with me! Read more about being a hostess (and see all the great freebies and discounts hostesses get!) by clicking here: Tara’s Thirty-One Page! Of course, not everyone has time to host, even online, but pretty much everyone loves Thirty-One! So please consider doing your holiday shopping with me! I have started a “Tara’s Moving Fundraiser” link in “My Parties” (top left of my Thirty-One page). I will run these special fundraising parties for two weeks at a time so no matter when you order, you won’t have to wait too long for your items to ship! Please consider sharing this information on Facebook and letting your network know that Thirty-One has awesome holiday gifts! Plus, for all purchases through November 26th, you’ll earn a Medium Utility Tote for just $5 for every $35 you spend! Thanks!

You can donate to our move directly via PayPal at taracohen@yahoo.com, or you can donate through our GiveForward link at http://www.giveforward.com/helpingtara

What We Need:

If you’re local or will be in the area, we still need more moving boxes! Please email me or comment here to connect. Do you own a business? Please consider breaking down and setting aside your incoming shipping boxes for a few days for us! 

I am still looking for work. I’m continuing to take new clients through JayBird Media, but I am losing my health insurance in our divorce, and I need a consistent income to support my kids, so I’m looking for a “normal job,” ideally in the Los Angeles area. However, there ARE other places in the country where we will consider moving for the right job because there are many other places with equally outstanding autism services. As well, in marketing and social media, companies often offer telecommuting options due to the nature of the work. So if you know people in marketing and social media, or people looking for services in these fields, please consider connecting me with them no matter where they are located. My portfolio is available on JayBird Media, and you can learn more about my professional experience via LinkedIn

Most importantly of all, please know that I am nothing short of tremendously grateful for every single person, every bit of help, every prayer, every kind word, every burst of good energy that comes our way. My village is astounding, and my heart is full. I will truly never be able to feel I’ve paid this love forward enough. But I promise to try. 

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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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The first time I intentionally told a complete and total lie, I was four. My sister and I were playing in our brown-shag-carpeted family room in upstate New York, and we decided it would be a really, really good idea to play with the broom, which probably wasn’t the worst idea except that we were playing right near our mom’s Tiffany-style glass lampshade. Long story short, the incident ended with my mom running into the room and scanning the scene: broken lamp, shattered glass in the shag, a clammed up six-year-old, and one petrified four-year-old holding a broom twice her height behind her back. No blood at least, but still, not exactly what a mom wants to see.

To my mom’s credit, when we pointed our fingers at one another, claimed complete innocence, and disavowed any knowledge of either the lamp (which we’d just blamed one another for breaking) or the broom (which I was still holding), she didn’t laugh or scream, both of which would have been appropriate, even simultaneously. No, my mom was quiet at that moment, and that scared the daylights out of me. We knew that she knew. And she knew that we knew. And that guilt was enough to keep me from lying again for a long, long time.

These days, though, I seem to lie a lot, mostly by omission, and primarily because most people don’t really want to hear the honest answers to their daily questions. Autism doesn’t make for polite conversation. Plus, some days I’m so seriously jealous of these women and their normal lives and typical kids that I kind of hate them a little for complaining about the things I would give my left arm for.

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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
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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by Tara Cohen

My friend Laura was recently at one of those big-box-nothing-under-100-pounds-can’t-escape-for-less-than-100-dollars behemoth warehouse stores with her husband and daughter, and she thought of me. Now, Laura, being the conservationist-social activist-cloth-diapering-vegetarian that she is, is not a huge fan of oversized portions of toxic plastic crap, so it’s worth noting that they were picking up bulk consumables like kitty litter and rice, not single-use plastics and disposable diapers. As they perused the streets of this indoor mecca o’ stuff, Laura loaded their cart with a super-mega-ultra-jumbo bag of cat food and noticed a woman staring at her with something like disapproval on her face.

Now, me, I’m used to strangers’ stares because children with autism, like my son Will, do tend to become the main attraction when they’re upset. I should charge for tickets to “The Will Show” for as long as some people stare at us. When that child is upset, throwing things, hitting, full-body-flailing in the stroller, crying, or all of the above (yes, that happens, and often), people shake their heads at us. They do the “Wow. That’s one bratty kid” double eyebrow raise. They roll their eyes, cluck their tongues, whisper their disapproval to each other, and stare at me with their appalled “Well, I never” expressions when I don’t look adequately humiliated. But we are living in the year 2 A.D. (that’s “After Diagnosis”) in my house, and I’ve had enough time to learn that my kid absolutely has to come first, and explaining ourselves to strangers takes a last-row-of-a-15-passenger-van type of back seat to taking care of his needs.

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