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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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