Ten Years and Counting . . . Special Thanks to the Little Lady from Detroit

I’ve been trying to find the right words, but I’m at a loss. There are no words to really describe how we feel today. I’ll keep this post short and sweet.

Ten years ago we put our son’s life in the hands of doctors and donors and maybe even a higher power (I know, I know – I have a terrible relationship with God, but I’m working on it). Ten years ago we didn’t know of any boys who were ten years post transplant for ALD. We didn’t know if there was a chance that Jack would reach this milestone.

Jack has reached this day – HIS TENTH TRANSPLANT BIRTHDAY – and I fully expect he will exceed every dream we’ve ever had for him. He’s just that kind of kid. He’s a silent boy who speaks.

We had a party this weekend to celebrate our boy. We filled our yard with greasy food and many of Jacko’s favorite people. Jack spent the day hugging, and dancing and enjoying every second.

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Please take a moment today and think about our boy. Think about how amazing life can be.

Happy Birthday JackO!!!

Love, Jess

In honor of Jack’s TRANSPLANT BIRTHDAY we asked people to make donations to Boxes of Fun and Horizon High School. Over $2800 was raised for his school and have a HUGE pile of toys for the Boxes of Fun. Our duct tape is amazing!

 

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FYI – “The Little Lady from Detroit” was Jack’s donor;)

A Room Full of Duct Tape

I’m not sure of the best word to describe Thursday’s reading at WORDS – but unreal and overwhelming keep coming to mind. The reading took place in the basement of our local bookstore (that makes it sound depressing – it’s … Continue reading

When “Thank you” isn’t enough – THANK YOU!!!!!

I hope everyone had a great Thanksgiving. Four days on Block Island in a house full of family, has us all feeling super grateful (and maybe a little exhausted). All things considered, we are one lucky family!

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The support our family has received over the last ten years has been amazing and with the release of Smiles and Duct Tape, it’s all been magnified. I’ve been receiving notes for the last two weeks from friends and family and strangers who have stumbled on the book. I’m so touched by the kind words and thrilled that the book is finding an audience.

The words “thank you” aren’t really enough, but THANK YOU!!!

If you are local, please join our family at WORDS for a reading/signing/Q&A this Thursday, December 1 at 7:30. I can’t promise that I won’t be super nervous (and I will definitely end up in tears at some point), but at least I can THANK YOU in person.

Love, Jess

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What I realized while in Paris

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Sitting at a dinner table in the heart of Paris I watched my mother and daughter debate everything from single-sex college dorms to the definition of rape. Suddenly it occurred to me that I was watching two extraordinary women. Two of my closest friends.

I’ve always been close to my mother – first as a daughter and then as a friend. I remember when our relationship turned from mother/daughter to friend/friend. I was older than Anna. I needed to be older than Anna. I needed guidance well into my twenties (okay – I still need guidance, but my mother is much better at slipping her advice into polite conversation – usually).

It’s strange when your mother becomes your friend because she becomes human. She’s no longer the person behind a curtain who you fear but can’t really see. This new person makes mistakes and bad decisions (not you, Mymom – I’m just trying to describe most mothers). She goes from telling you what to do, to what she did and how she learned. This women asks you for advice and helps you without needing to take over. I loved when our relationship switched, but I was an adult when my mother’s curtain fell. My curtain seemed to fall off without me even noticing.

Anna learned early in life that I am human. I blame ALD for the weakened grip on my motherhood curtain. ALD has a way of stripping down resilience. Too much energy is taken with worry and late nights. It been quite a while since I was careful with my answers to even the most “adult” questions and I’m certainly not great at hiding four-letter words or less-than-perfect mother behavior. Fortunately, Anna has always loved me unconditionally and she seems to know which of her mother’s characteristics to emulate and which to stay away from . . . She has grown into a remarkable young woman. Anna’s not just a good student, but she’s smart – not always the same thing. And, she’s funny and kind. I’ve known all this for a while, but in Paris while sitting at the dinner table covered with a thin white tablecloth, I gained an appreciation that she has also become incredibly self-assured and well-spoken. Watching her with my mother, debating rather inappropriate topics for a sixteen-year-old and her grandmother, I thought WOW I want to be just like Anna when I grow up.

Anna and I have talked about going to Paris since she was a little girl – a girl’s trip to celebrate her sweet-sixteen. We invited all the women in the family to join us, but life is complicated for everyone and Mymom was the only taker. As disappointed as we were not to have the whole crew, it was lovely to have just the three of us on this adventure. Museums, long walks through the city, elegant meals, even a Segway tour (don’t ask Mymom about it – she’s still recovering). It was all perfection, but my favorite part was watching these two people that I adore debating each night at dinner. I came from one and created the other. Nothing is more amazing than that.

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This week has been busy with Smiles and Duct Tape getting out there. I’ve been distracted with marketing strategies and thank yous and begging for reviews on Amazon (not that I am doing that here), but I keep thinking about our magical weekend in Paris. I have two such strong, impressive (opinionated) women in my life. Lucky me.

Love, Jess

PS Anna still has a curfew. She might be mature and amazing, but she’s still only sixteen.

I’m gonna say it. It’s not appropriate or good parenting by any stretch. I can’t believe I am going to put this in writing, but her it goes — my daughter is my best friend.

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Thank yous and big news.

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

 

 

a sucker punch

I was talking to someone the other day. It doesn’t matter who it was. It could have been anyone in Jack’s life. A teacher, a babysitter, a friend, a grandparent, his father, his sister, one of his aunts or uncles . . . we’ve all been there. Ill-prepared for a blow.

This person shared that something had happened (something relatively small) and suddenly the reality of Jack’s life – it’s limitations, it’s complications, every fear, every worry – all became magnified. Before they even knew what was happening, their heart started to race and tears fell.

“If only I’d known it was coming, I could have protected myself.”

That’s the problem. You can’t always be prepared and ready for pain. That’s no way to live.

No matter what gets you to your soul. Worry over your kids or your parents or your job or your mortgage or who is going to be our next president – it’s just too exhausting to walk around “prepared” all the time. And, you would miss out on so much of the fun stuff.

We’re all Jack’s cheerleaders, supporting him as he enjoys his life. And he does – he enjoys his life. Despite all the things that got stripped from him, JACK ENJOYS HIS LIFE. So the rest of us, follow suit. A good mood is contagious, and when you are on the Jack-train you can go along for quite a while and forget that there is anything other than rainbows and good music.

Unfortunately, it’s when you don’t have your armor up, that little stuff can really get to you. Someone asks when Jack is graduating or you find an old picture from “before” or you see a kid riding his bike down the street with the same look that Jack used to have as the wind blew his hair. Things that some days can roll off your back, suddenly stab you. It’s a sucker punch.

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I’ve had my share of these moments the last year. Graduations, proms, college letters – all reminders of what Jack is missing. I’ve found myself out having fun, when the littlest comment hits me. My behavior becomes erratic. Awkward moments with friends and family with my only excuse being that I’ve just been hit and I need to catch my breath. Don’t ask too many questions, don’t get on my bad side, don’t be late for dinner, and don’t tell me that YOU’VE had a hard day. I have very little patience when I’m recovering from a slap.

So that’s what I told this person who loves Jack. First, we cried together for a while and then I reminded them that they are not alone. Everyone who loves Jack (every human for one reason or another) has those moments. We are allowed to be angry/sad/frustrated, we just can’t let those emotions win. The next time they feel their mind racing about how unfair life can be, they need to find Jack. Let him give one of his magic hugs and go back to focusing on the rainbows and the music.

After all, we can only really enjoy the good times if we allow ourselves to really enjoy the good times. We all know that we will be hit again, but walking around with a helmet on is no way to live.

Love, Jess

 

It’s a bird. It’s a plane. It’s Jack!

Poor Jack. His life is so limited.

It’s such a shame he needs to go to school every day. He probably just sits there, staring at the clock, hoping for time to pass quickly.

OR, He gets to fly across a stage!

 

 

Jack’s school mom, Monica, sends us pictures and videos almost every day of his school adventures. Yesterday’s was particularly amazing. Jack just might be the luckiest kid on the planet!

No need to feel sorry for our boy;)

Love, Jess

“special” moms

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What happens when you put 8 special needs moms at a table? You hear a whole lot of swearing and laughter.

Last night I went out with a group of moms to celebrate an incredible woman who is leaving HHS (she’s not a special needs mom herself, but she gets us and we miss her already). The mood was mixed as we arrived — goodbyes are never easy and change is particularly hard for us special needs moms. Our friendships vary from close to barely acquaintance, but we all share one thing – being the mom to a special kid (or two).

The hostess showed us to a table in the back of the restaurant, where we were less likely to bother other patrons. I guess a table full of ladies always has the potential for loud voices and racy chitchat. Within moments of sitting down, several conversations started at the same time. Far from the discussions I have with my “typical” mom peers, that center around our kids GPAs, prom, college applications and juicy town gossip, most of the discussions around the the table last night were about guardianship, social security and how many seizures in a day is normal in our given homes.

Such different words, but the tone felt similar to any other moms’ night out. I imagine if you couldn’t hear the particulars of our conversations, we looked and sounded just like any other group of middle-aged women. And, once we got settled and the wine got poured, the laughter started.

I’ve never had many “special” mom friends. Remember – Jack was typical until he was eight. By the time our family was thrown into the special needs world, our dance card was full. Besides, I didn’t think I could possibly have much in common with a group of women I felt vaguely sorry for. I figured they must be so sad all the time and overwhelmed and have no time for anything except doctoring and complaining.

Then, one day I realized that I WAS a special needs mom. I’d earned my title and I wasn’t completely buried under the job requirements. Perhaps there were others like me. Other moms with special kids who were still living life and wanted friends who understood them in a way that their typical friends couldn’t.

I started slow and found a couple moms at our last school and was amazed to discover that they were just normal women who happened to know the difference between a grand mal and an absence seizure and what the letters AAC stood for . I had a lot in common with some and absolutely nothing in common with others – just like “typical” people. Amazing!

It’s taken some time, but I finally have a little circle of women that I can call my friends who know one side of me that’s still foreign to most people in my life. We can bounce off ideas about alternative therapies and strategies for shaving/haircutting/and all-around-grooming our teenagers AND we can bitch about our husbands (not me Dan, it was the other ladies) and talk about our new diet plans. AND, we can laugh about (almost) all of it!

I left dinner feeling lucky that I’ve found this group of ladies. I wish it hadn’t taken me so long to realize that “special” moms are just “typical” moms with more patience and a better sense of humor. I look forward to my next “special” moms’ night out!!
Love, Jess

I did learn a few things last night. Wondering what words you should never use? “Retarded” and “normal”. What words are A-OK with special needs moms? “Intellectually delayed” and “asshole”.

Life is work.

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Every time I think I have a handle on this new life, it slips out of my grasp.

The last couple of months I have been getting a little cocky. Feeling like nothing was getting me down and I was managing so well. I got through the holidays without procrastinating on my Christmas cards or forgetting a gift. I was looking forward to my spring art classes with new lessons and an eager attitude. I was averaging 15,000 steps a day on my Fitbit. I even started a new writing class, determined that 2016 was the year of getting published. I was on top of the world.

Then, things started falling apart. I’m not sure what happened, but I am fairly certain that full hours were snatched from my days. I couldn’t seem to sleep enough or get even half of my “list” done on any given day. My pile of bills started mounting into a tower in the office. Laundry seemed to never leave the heap on the chair in our bedroom. The kitchen sink was always full. Every room of our house had a reminder that I was losing a battle.

What do I do when I’m overwhelmed and feeling nuts? I pretend. If anyone asks – “I’m doing great!”. I walk around with a big smile and hope that conversations don’t get too deep so that I’m not forced to reveal anything. The last thing I really want to do is to talk about feeling that I’m losing my grip. I’m Jesse – I’ve got this.

Of corse there are hints. I don’t return phone calls, I drink more than I should, I avoid anything involving intimate conversation. I can easily disguise my mood from most people, but my close friends and family usually pick up on the signals. Dan has been asking “You okay?” so much that I started feeling kinda bad for him.

Time for a change.

This week, I’ve been avoiding the vino, tackling the laundry, sorting through the pile on my desk and searching for whatever it is that’s gotten me out of sync. It’s going pretty well, but have you ever noticed that laundry and bills are never really done?

 

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One of the things I do to keep myself on task is I write with a friend every Thursday morning. She and I have been devoted for two years to our Thursday morning ritual of meeting online, selecting a topic and diving in to a 30 minute “flash” writing session. Once we’re done, we exchange our work and then catch up on our lives. She and I have become quite close, although we’ve never met in person (we met while taking an online writing course two years ago). I think sometimes those anonymous relationships allow us to be more honest. She knows almost as many of my secrets as Jack does.

Yesterday morning she asked if there was anything on my mind. “Keeping up with change” was the subject I came up with. It was easier to suggest than, “I think that life is swallowing me.” She and I each poured our coffee and told each other that we’d be back in 30.

The beginning of this piece is what I got through. I’m always amazed how writing can help me better understand what I’m feeling. Once I find the words, my mood always seems to improve. Now, I just need to sort through what put me into the sour mood so I can avoid it happening again.

The “C” word (college) keeps coming up and it’s certainly not helping, but I don’t think that’s all of it. I think I’m just feeling overwhelmed with normal, every day, I’m a grown-up shit. I won’t play the ALD card here.

Just because you have BIG crap going on doesn’t mean that the SMALL crap doesn’t bother you too.

My writing friend has a great way with words. She ended her note to me with “Life is work, and boy does that work take time.”

Indeed.

Love, Jess

First Twitter, now this

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It’s adorable. I keep finding my almost 50-year-old husband sitting at the computer yelling, “You’re not gonna believe who I just found!”

Dan has taken up social media. Perhaps it’s his version of a mid-life crisis. I’m not complaining — It’s way cheaper than a new car and much nicer (for me) than a young girlfriend. It started with Twitter a couple of months ago. He swears that it’s just for “real time news”, but he seems much more in the know about celebrity gossip these days. Then, over the weekend he asked me to help set him up on “The Facebook”.

I thought he was kidding. Dan’s not just been one of those people who didn’t care about “The Facebook”, he resented it. Dan’s old school. A vinyl guy who thinks that the written word (on paper, in ink) is somehow superior. He’s still offended by losing the extra space after a period and HATES that his daughter doesn’t use punctuation to complete a text message.

But, I was curious enough to see what Dan was planning, that I set up a page and showed him the basics. He dove right in. Within a couple of minutes, I could hear him from the other room – giddy as he found old friends. The sweetest thing I’ve ever heard. He poured through his friend’s pages searching for familiar names. He went from, “I’m just looking for some particular people.” to “Did you know how many people are on this thing?”

Downloading old pictures is where he is now. He started with a few family photos, but then he stumbled on some old albums. Now he’s reliving his youth, one photo at a time. Wilton days, Block Island shenanigans and college. Many of the images are not oriented properly and I did tell him that maybe he should make some albums so that he avoided taking up news feeds. “But WHO wouldn’t want to see this stuff?”

I felt like his mom yesterday when I sat down at the computer and found that his Facebook page was opened. It was like that day when I accidentally found that Anna left her iPhone at home (It’s not snooping, just checking). I looked at all the old photos – so many great memories, but there were a few pictures that made me pause. I gave Dan a call and suggested that some of the images might be a little inappropriate for a broad audience, “Dan, if you wouldn’t want Jack and Anna to see it, it’s shouldn’t be on Facebook.”

I’ve used a similar line with Anna, “If you wouldn’t want your grandparents to see it . . . “. It hasn’t always worked with Anna and I wasn’t convinced it worked for Dan, so I found myself doing a little “editing”.

When Dan got home yesterday he told me that he heard what I was saying and that there were a few pictures we was going to take down. I quickly confessed that I had already taken care of it and promised not to do it again, “Unless you start making bad choices.”

WHEN did I become this wife? If I’m not careful, he’s gonna unfriend me.

 

Love, Jess