Monthly Archives: October 2016

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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How to raise a great kid – HANDS OFF!

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I had a super stressful dream last night. Not my typical, “I forgot to wear pants to the grocery store” dream. This was new and I woke up sweating.

I dreamt that I was having trouble with my college essays and not sure if I would get my applications done on time. I could read into it, but I think it’s pretty clear what my subconscious was trying to tell me — it’s time to relax and go back to HANDS OFF parenting Anna.

The truth is I’m usually a pretty hands off parent with Anna. Not to say that I don’t grill her after every party and open her report cards, but both Dan and I generally allow Anna to make most of her choices without too much guidance. Safety is (of course) important, but other than a curfew, she has very few rules (and even that is pretty negotiable).

It started when Jack got sick. Anna was only six years old and her family scattered. She went from having a father who was available every day to toss a ball with her after dinner and a mother who was always finding random excuses to show up at her school, to not knowing who would be home to tuck her in bed each night. She knew her family loved her, but she also knew that if she needed something, sometimes it was just easier to make it happen herself. Siblings of special needs kids have a perspective that their “typical” peers don’t.

Although I appreciate how fun it would be to helicopter around and watch everything Anna does while adding my two-cents, I just don’t have the time or the energy. If Jack needs me, it means he needs assistance with eating or needs his diaper changed. I can’t NOT do it. If Anna has a question about her homework, Google is faster than waiting outside of the bathroom door.

As IF I could help with her homework.

Don’t think that Anna’s not getting any attention from me. We talk and text throughout the day about everything from clothes to friends to our relationships with God. We have breakfast and dinner together (“breakfast” is her eating an Eggo waffle and me drinking coffee, but dinner is an actual meal that I have prepared). We are so close that we are starting to look like each other. When people see us together they call her “Mini-Me” and it’s not just that we look alike, our mannerisms and senses of humor are the same – it’s almost creepy.

We’re close – what I mean by HANDS OFF parenting is that I don’t micromanage her. I don’t watch over her constantly to make sure she is doing things just so. She needed to get her driving permit a couple of weeks ago and all I said was, “Great. Just ask around and tell me who to hire. I will make the first phone call, then it’s all you.”

When she was planning her course-load for junior year, instead of digging through all the choices, Dan and I just sat back and watched her come up with her perfect schedule. My only input was “I think I would prefer AP Art to AP Calculus, but if that’s your thing – have at it!”

We trust Anna because she has proven that she can be trusted. She is a great student and has a wonderful circle of friends. She makes good choices (mostly – she IS a teenager). She is kind to her brother and when I watch her interact with other people I am proud of who she is.

We’ve been so relaxed with Anna that I was surprised that Dan and I climbed on board the “college train” with such intensity. Looking through college books, long talks around the dinner table, planning trips to see schools. Perhaps it’s a distraction from NOT working on the project with Jack or maybe it’s just super fun because Anna has an impressive transcript —  And, maybe part of it is that Dan and I really, really, really want to go back to college ourselves;). But, I need to be careful. I’ve found myself checking Powerschool daily and questioning grades, looking at that giant book of colleges even when Anna isn’t home, thinking about essay topics and waiting anxiously for the next round of ACT scores. I’m getting dizzy with all the information and Anna is not appreciating the frantic input.

“Mom, you know I have this covered, right?”

Yes, I know you do baby girl. You have turned into a remarkable young woman and I know you will do amazing things. Mom will go back to HANDS OFF parenting. Just let me know when you need me.

And, when can we plan that trip to Virginia and North Carolina . . . and Boston – we need to go to Boston!dsc00726

Love, Jess

 

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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