Category Archives: disability

Guardianship – Jack made it easy(ish)

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I guess there are worse reasons to take your eighteen-year-old son to court, BUT today was a tough day.

When a person turns 18, they legally become an adult and are expected to make decisions about their life – medical treatment, finances, education, etc. Guardianship is a legal proceeding in which the court is asked to find the person in question unable to manage his/her affairs effectively. A guardian (or guardians) is/are appointed to make all decisions on behalf of the person.

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Today Dan, Jack and I went to court to prove to the State of NJ that Jack is too disabled to care for himself. He is too limited to make decisions regarding his care and well-being. He is (and will always be) dependent on us. Heartbreaking.

Like most heartbreaking things having to do with Jack – it was Jack that made it bearable. He was in a great mood this morning as we got him scrubbed and ready to make a good impression on the judge. He smiled the whole way to Newark, eager to see his buddy Adam (our lawyer) and to meet a few new friends. Jack always loves an adventure.

When we told Jack it was going to be like Law and Order he didn’t seem impressed, but when Dan said, “I wonder if Judge Judy works here”, our boy laughed and laughed. It’s hard to take things too seriously when you have Jack chuckling next to you, but when we needed to go in front of the judge, I could feel the tears start filling my eyes.

Everything went off without a hitch. We just needed to sit as the judge read through all the paperwork – proof that Jack needs us to be his legal guardians (doctor’s notes, school information, interviews with us and others who know Jack). I did my best to ignore the details of Jack’s limitations get repeated over and over again. I’ve developed a talent of keeping a smile on my face and nodding politely as I block out information. Dan’s bruised hand was the only evidence that any of the words actually made it to my ears.

I’ve accepted Jack’s challenges and understand that, as a special family, we need to do this stuff. The only thing that really bothered me about the whole experience today was the use of the word, incapacitated. It was used through the hearing over and over and over again.

incapacitated
(adjective)
 Ivan did not expect to be incapacitated for more than a few days: disabled, debilitated,           indisposed, unfit, impaired; immobilized, paralyzed, out of action, out of commission,    hors de combat; informal laid up. ANTONYMS fit.

I know that words need to be attached to circumstances, but of all things to call Jack — incapacitated is not one I would ever use. He’s more full of life than anyone I know. I understand that he needs (and will likely always need) our care, but as I heard that word I couldn’t help but want to stand up and scream “I OBJECT!”

I didn’t – I played the role of calm mom and didn’t even let myself even cry until I kissed Dan goodbye and dropped Jack safely off at school. I am so #$%^ing glad that it’s over.

Love, Jess (proud guardian of JackO)

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Jack makes things easy(ish)

Morning Selfies

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Every morning Jack and I take a selfie. It’s a gift we give ourselves for surviving the morning chaos.

I’ve described our mornings before, but here’s the short version — teeth, toilet, laundry, shower, get dressed, toilet, downstairs, dogs, medication, hydration, waffles (don’t judge), say good-bye to Anna, toilet (often followed by cleaning the bathroom floor), shoes, jacket, breathe AND sit on the stairs and take a selfie.

This morning’s routine was particularly messy and Jack and I were feeling a little discouraged until we looked at some of our most resent masterpieces. Jack can always turn a sour mood around with his smile – and his scrunchy face.

 

Happy Friday!

Love, Jess

 

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another week walking on eggshells

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Good news, bad news.

I will start with the bad so that I can end on a high note (that’s my thing, in case you haven’t noticed).

I had a mild freak-out last week and asked my poor publisher to make some changes to the manuscript. It may have been my way of delaying the production of SMILES AND DUCT TAPE – it’s been hard for me to let go of this project. Anyway, it worked. We’re about a week behind with the release of the book.

The good news is that the book is now with the printer and it should be in your hands by the end of next week. It’s not too late to pre-order – CLICK HERE!

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Now I can spend another week walking on eggshells.

I’m guessing all first-time authors are nervous as they brace themselves for the public’s reaction to their writing. Add that I’m a girl who couldn’t really read until fifth grade AND I was not born a writer — just ask my high school English teachers. I feel almost ridiculous adding the title of author to my resume. And, it’s not just my words that I’m worried about releasing for judgment – it’s my family. I’m hoping that people find our story inspiring, but who knows . . .

It’s too late now. The book will be out there soon and, whatever happens, our family will survive. THAT is one thing that I can always count on.

Love, Jess
I promise that I AM NOT looking at the book again – no more delays.

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10 days.

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Ten days until the release of Smiles and Duct Tape and I’m suddenly in a full-blown panic.

Here’s the thing – As excited as I am to get the book out there, I’m nervous about letting it go. I keep wondering if I’ve forgotten anything or anyone. I’m used to writing 500-word blog posts that I can edit if needed – a book feels so permanent. I’m also worried about the content. I’ve shared our family through the blog for almost ten years, and have been honest, but not quite THIS honest. The book is pretty raw. It follows the first 1000 days of our journey with ALD, and I don’t hold back on the reality of what we went through. I hope that readers appreciate the candor.

If you know our family (or read this blog), you know the ending. You know that Jack survived transplant and so did our family. You know that Dan and I are still married and that Anna has turned into a remarkable young woman. You know that the Torreys are pretty much back to being the family we once were – just with a few complicated issues.

So why did I write this book?

1.) I told people I was writing a book and have a history of not finishing projects. There was no way I was going to “pull a Jess” with this.

2.) I wanted to thank everyone who has helped our family and I’ve never been good with thank you notes.

3.) For typical/normal/non-challenged (insert appropriate PC word here) families to see that differently-abled/complicated/special (insert appropriate PC word here) families are just families.

4.) I want Smiles and Duct Tape to finds it’s way to families going through crisis. Not necessarily ALD (or even illness),  just lives that have turned upside-down. I want to share how our family managed to survive.

So, the book is written and in ten days is will be out there. I’m nervous, excited, and kinda feel like I’m going to throw up.

To PRE-ORDER your very own copy of Smiles and Duct Tape – CLICK HERE!

Love, Jess

PS I’m happy to speak at schools or book clubs or to anyone that might want to hear about how our family survived and accepted a new normal. Please email me to something up.

Meet the Torreys

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It’s getting closer.

The manuscript has been sent to the printer and by the end of this week we should have a copy of SMILES AND DUCT TAPE in our hands. Not your hands . . . you need to wait a tiny bit longer. The current release date is October 24. That’s two weeks folks!

In the meantime I am working on ways to promote the book and one idea I stumbled across was making a slideshow to introduce the readers to the book. SMILES AND DUCT TAPE is a book about our family. I would like to introduce you to The Torreys.

 

 

Love, Jess

If you would like to PRE-ORDER your copy of SMILES AND DUCT TAPE, please CLICK HERE.

 

ps I tried to add these images, but it was too late;(

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the book, social security and magic

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It’s been high excitement over here for a couple of days. The book is approaching the finish line and there have been head shots, cover art and websites. And, there’s been social media – Facebook has been like a birthday, only better.

In the middle of all of this, I got a phone call. “It’s the Social Security Administration. May I please speak to John Torrey?”

Deep breath, “I’m sorry, John doesn’t speak. This is his mother, Jesse.”

“Mrs. Torrey, John is over 18. I need to speak with him.”

Count to ten, “Sure. I can put him on the phone. You might get a smile out of him, but I can assure you that he will not speak to you.”

I could hear the shuffle of papers in the background, “Okay, sorry. John got approved for benefits. Can you come in tomorrow morning to finish the paperwork?”

My mind raced thinking of all the things I had planned, but I found myself saying, “How early should we arrive to make this as painless as possible?”

That’s our reality. We have priorities that can’t be put on the back burner.

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So, this morning Jack and I left early enough to be there before the Social Security Administration office opened. Determined to get in and out quickly enough so that Jack didn’t miss too much school and I didn’t miss my very important hair appointment. Unfortunately, we were far from the first in line, so we sat. And sat. Jack and I were busy taking selfies and making each other laugh, when I noticed the couple behind us admiring him. Jack has a way of making friends wherever we go. The man offered Jack some gum, which Jack grabbed without a thought and popped into his mouth (yes – Jack takes candy from strangers and I let him). We started talking to the couple and before too long they shared that their son had Down Syndrome and that they felt so blessed that he is not just doing well, but is happy, “Just like your son.”

We talked and talked – enjoying our visit so much, that I was almost disappointed when we got called to meet with our representitive. We exchanged goodbyes and off we went. As Jack and I sat waiting for the paperwork to be done, our new friends stopped by to say goodbye. The man reach into his pocket and handed Jack his pack of gum, “This is for you Jack. Enjoy!”

Jack gave him a high five and I thanked our new friends and wished them well. Then, as he walked away, the man turned around and said, “Oh, and Jack – take your mom out to lunch.”

I looked down at the gum in Jack’s hands and there was a twenty dollar bill stuck in the pack.

Our lives are complicated, but sometimes I feel like magic follows us around.

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We made it home in time for Jack to go to school for a couple of hours and for my hair to get back to being sassy. Now I have the task of reading the book one last time before it gets printed. As I travel back to the early days of Jack’s diagnosis, I am trying to remind myself of all the magic in our lives and just how lucky we are.

Check out my  “author page” – this is really happening!

Love, Jess

PS  We made a donation to CaringBride today. We love to “pay things forward” and without CaringBridge there would be no book.

the laughter continues thanks to the (impractical) JOKERS

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We have the most amazing friends. Love and support always, dinners when needed – even offers to walk the dogs (well, not EVERYONE offers to take Finn, but people do fight over Keegan). We’re always astonished by all the love and generosity, but sometimes we’re really blown away.

Our dear friend, Alice, is far cooler than most of us and knows “people”. She shared Jack’s laughter with her buddies at truTV and look what happened.

           

For a boy who hasn’t spoken in almost ten years, it’s amazing how many people he’s able to reach with something as simple as a laugh.

Think about it folks – sometimes a laugh is all it really takes.

Tru TV should be on everyone’s radar. It’s CHANGING lives folks! And, they didn’t just send us these videos, they have invited us to a live show on 11/3 at the Prudential Center. The Jokers and Nitro Circus. Everyone should order tickets now!!

Thank you Alice and Michael and the greatest (impractical) Jokers on the planet!

 

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Love, Jess

PS Please don’t judge my messy desk and Jack is NOT picking his nose. That’s his “I’m really into what I am watching face”.

nothing short of magic

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Last night Dan and I were in the kitchen catching up when we both stopped mid-sentence, “What’s that sound?”

We’ve all been asking that question a lot over the last week. We listened again and quickly realize that it was Jack. We could hear him clearly from three rooms away. It’s nothing short of magic to hear our son. Thank you TruTV!

For everyone who is under the impression that our family is always doing cool, innovated, exciting things all the time – I hate to disappoint you, but you’re sorely mistaken. Most afternoons Jack climbs off the school bus happy, but exhausted. He has a snack and some water through his G-tube and settles down on a pee matt in front of the TV in the den. He watches TV for hours. I always thought parents that allowed such things were lazy, but it’s become part of our routine. It gives Jack a break after his long day of school adventures and it allows whoever is in charge to get stuff done.

Jack is pretty easy to please and for years he has seemed happy enough with the old standby shows on TeenNick or Disney, but lately he’s seemed a little bored. Everyone’s taste changes over time. Sometimes we forget that despite Jack’s challenges he is still maturing and it occurred to us that he might not be into the preteen selections we were forcing on him. So, last weekend I was hanging out with Jack wandering around the Fios guide in search of a good alternative. We stumbled on a channel called TruTV. Loving anything “reality”, I clicked to see what was on.

If Bravo was created for middle-age housewives, TruTV was created for teenage boys and anyone who appreciates teenage boy humor (this includes our entire family). The schedule seems to be rather limited in their content, but Jack doesn’t seem to mind – it’s all new to him. It’s inappropriate and ridiculous and Jack loves every second of what’s on. We haven’t heard him laugh this hard since we spent time with Uncle Pat this summer.

I often use the word silent to describe Jack. It’s mostly true – he doesn’t speak a word or hum or cry out. He can’t yell if he needs us or make even a simple sound on command. It’s hard to really appreciate his silence unless you spend time with him. By far, it’s the hardest part of life with ALD.

Luckily, one sound that ALD did not steal is Jack’s laugh. It’s spontaneous and honest and loud – almost primal. And, Jack has always been generous with sharing it with us. When something resinates with Jack, laughter pours out of him. His new channel might not be a great at Uncle Pat’s stories, but it’s pretty darn awesome!

Love, Jess

 

Thank yous and big news.

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Jack would like to thank everyone for all of his birthday wishes. He had an amazing day and, in typical Torrey style, he’s planning on celebrating all month!!

 

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We’ve had other exciting news here on Clinton Avenue and I’m finally ready to share it. Drum roll please . . .

Smiles and Duct Tape THE BOOK is going to be released this fall. I’ve been working on the project for over five years and I can’t believe that the finish-line is approaching. I received my edits from the publisher last week and we’re busy sorting out the details about the cover art. Holy smokes – this is really happening! I’m honored and excited and a whole lot of scared.

What happens when your world falls apart? Do you simply lay down and take the blows, or do you try to figure out a new way of living? When our son, Jack, was first diagnosed with a rare disease, I wasn’t sure that our family would survive. And, once we realized that life would never return to “normal”, I questioned if it was realistic to strive for ever really being happy again. It took us a while, but thanks to the help of our friends, family, doctors, teachers, neighbors, and a lot of smiles, we managed to mend our family. It’s like we’re held together with duct tape – not pretty, but super strong.

We don’t have the release date yet, but I’m hoping that everyone will have a great go-to gift idea for the holidays. Who doesn’t want a memoir about a ALD family for the holidays?

Love, Jess

 

 

Guess who is 18!

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I was having trouble finding the right words to honor Jack today, his 18th birthday. I sat at the computer last night, Googling “18” – looking desperately for some inspiration. Jack’s episode of Tosh.O was over, and he wandered into the office to tap me on the shoulder and randomly hit the keys on the computer to get my attention. I sat him next to me, “Come on Jack. Help me find something fun to write about.”

As if on cue, I saw what I needed. One Direction has a song called “18”.

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Jack has awesome taste in music. It’s broad enough to appreciate The Grateful Dead, Bob Marley, even Miles Davis, but for years he has had a clear favorite that didn’t come from either of his parents – One Direction. When I saw that they had a song called “18”, I asked Jack if he knew it. My silent boy’s answer was unmistakeable. He popped off the chair and started hopping like a madman.

The song is basically a love song, but the first couple lines captured who Jack was, is and will always be.

“I got a heart and I got a soul
Believe me I will use them both”

We played “18” a dozen times and Jack never stopped hopping with a big broad smile filling his face. At one point he even managed to climb up on my desk chair. This is the same kid that can’t get himself into bed. When things happen spontaneously, ALD disappears for a brief moment. It’s pure magic.

So, THIS is also what ALD looks like. A boy dancing to a song he loves. Joy pouring out of every part of his being.

When Jack was born eighteen years ago, I never imagined his life would take this path. He has been turned upside-down and thrown in the ring again and again, but he never complains or feels sorry for himself. He just lives in the moment waiting for the next song.

It’s not a typical 18th birthday – it’s covered with scars of ALD – but we still have a whole lot to celebrate and we will. We plan to play a whole lot of One Direction today (and maybe a little Grateful Dead and Miles Davis too).

I would love for everyone who reads this to send a brief note to Jack on his Sweet 18. Here on the blog, or on Facebook or jctorrey@mac.com.

Love, Jess (proud mom of an adult – akkkkkk!)

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