the book, social security and magic

sdt_cover_matt-edit_3

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.

images-33

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.

images-7

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

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!

 

images-32
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

fullsizerender-73

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

 

Summer Round Up

IMG_5295

Summer’s coming to a close and I think I’m ready. Sure, I will miss the long days and the family time, but I think I need to get back to a schedule and SHHHHHHHHH – I’m looking forward to the house being mine for a few hours each day. Is that so bad?

This summer was filled with activity – birthdays, Santa Fe, BBQs, fun. Block Island, as always, rated high on our list of favorite adventures. We didn’t get quite as much time there as we’ve grown used to, but the reasons were good. Dan’s job had him busy with travel (work is good), Anna had an amazing internship and started looking at schools (work is essential), and the best reason to miss Block Island time was that my brother Philip got married to a lovely woman who we are excited to welcome to the family. Welcome Kate!!

 

DSC00897

This summer also included fun activities like applying for guardianship and Social Security for Jack. Although not as entertaining as time on the beach or celebrating a wedding, I need to share that Jack’s 18 Birthday Project has not been a disaster. There have been a few tears, some money, some doctor’s appointments, some paperwork and some long lines to deal with, but it hasn’t been as painful as I’d imagined.

I’m someone who prepares for the worst. I’m not sure if it’s a product of our “situation” or if I was born this way (I can’t really remember much about life before), but I seem to have a need to picture the worst case scenario. I know this sounds like I enjoy doom and gloom, but it’s the opposite. I worry that doom and gloom might someday kill me if I don’t brace for it.

So when I can, I prepare. When Jack has a fever, I pack a hospital bag. When I see we have a 1/2 tank of gas in the car, I fill it. When we are running low on wine . . . you get the picture. I prepare. So, when I know I need to complete a pile of paperwork providing information to prove that that my eighteen-year-old son is so disabled that he is never expected to be able to work or live independently – I brace myself for both the emotional pain and the dread of dealing with bureaucracy.

I hope I don’t jinx things, but so far, it’s been pretty painless. We hired an attorney that did a remarkable job at guiding us through the process of guardianship without making us focus too much on the details. And, we spent Monday at Social Security where we lucked out and were placed at a desk with the sweetest man. He calmly asked us questions and kept looking at Jack’s sweet smile and saying, “I really want to make this easy for you guys.”. I’m glad I brought Jack. I’m not sure I would have gotten that kind of treatment without him. So all of our paperwork is in and now we wait. I REALLY hope I don’t regret sharing how easy this all was . . .

Enjoy this last blast of summer before the chaos (or quiet luxury) of the school year begins!

Love, Jess

FullSizeRender-71

 

FYI – The first round of edits of the book are complete. I still can’t believe this is happening.