hApPy bIrThDaY smiles and duct tape!

sdt_cover_matt-edit_3

HaPpY BiRtHdAy Smiles and Duct Tape!!

When the book was released last year, I had my fingers and toes crossed that it would find its way into the world, but in my wildest dreams, I never imagined that it would find its way into so many of the right hands.

Smiles and Duct Tape is not winning awards or getting nominated for prizes, but this is better – it’s helping people. ALD parents, special needs families, and people looking to better understand special needs and/or our little, not-as-rare-as-you-might-think disease, Adrenoleukodystrophy.

A highlight of this first year was our family being invited to meet the folks at bluebird bio earlier this week. Last month, the New England Journal of Medicine released a study that indicates that gene therapy is a promising option for boys with ALD. bluebird bio is behind that research.

Thanks to Smiles and Duct Tape, and my need to share every detail of our lives, bluebird bio found us and asked us to come up to Cambridge and talk to their team.

I liked bluebird bio from the start because they have the same relationship with capital letters as I do (my oh-so-cool not capitalizing my post titles), but when I did a little research, I really fell in love: “we are committed to our vision of transforming lives and making hope a reality for patients . . . ” AND one of the diseases that they’re determined to beat is ALD.

They are not just leading studies on new treatments, they are working to truly understand what the current treatments look like – that’s where we came in. We are the face of what ALD looks like with the current standard of care—a stem cell transplant— and without the luxury of an early diagnose. They wanted to hear more about our story and had dozens of questions for all of us (Anna answered questions with such confidence and grace AND Jack won a lot of hearts with his smile). They asked all about the transplant and details about what life looks like post-transplant. The goal of bluebird bio is to provide a treatment with fewer risks and a better after-treatment quality of life.

With all the crap going on these days, it’s hard not to lose a little faith in our world, but spending the day at bluebird bio felt like stepping into the future – a better future. Brilliant minds who are determined to make a difference. AND they invited us into their nest with open arms. We spoke, we ate, and we got an incredible tour of their facilities. These folks are warm and friendly and wicked smaaaht.

IMG_1602

With increased pressure to add newborn screening for ALD across the US and this promising research on gene therapy, the future looks bright for the next generation of ALD boys. If us Torreys can help even a tiny bit, sign us up!

Tomorrow I am off to the Southeast Wisconsin Festival of Books. Yet another exciting opportunity to share our story. I’ll share stories and pictures next week.

Love, Jess

https://www.thedailybeast.com/can-two-brothers-struck-with-lorenzos-oil-disease-be-saved?source=TDB&via=FB_Page

 

 

 

HaPpY 19th!

IMG_3163

 

I’m happy to report that we did not take any bit of HaPpY out of Happy Birthday (if you don’t know what I am talking about, click here)! JackO enjoyed every minute of his 19th Birthday and looks forward to celebrating all month long. Thank you for all your birthday notes – keep them coming!!

 

 

Love, Jess

PS HaPpY Birthday PopPop!!! We will celebrate soon Block Island style;)

 

I refuse to steal the HAPPY out of HAPPY BIRTHDAY

images-69

I don’t remember all of my birthdays, but 19 was especially memorable. My friend, Dave, took me out for dinner. It was our favorite Chinese restaurant and I’m sure there was a Scorpion Bowl or Mai Tais or something else really sweet and really strong. We stuffed ourselves with beef and broccoli, and then Dave insisted on ordering dessert. Who does that at a Chinese restaurant? Fried ice cream or something odd and I could hardly fit in a bite. Besides, I was anxious to get back to the apartment. It was my birthday and I wanted to grab our friends and go out.

I felt like Dave was going in slow motion as we made our way back to the Woodrow (think rundown/gritty/college three-story apartment building in Baltimore). I was so focused on how lame he was being that I didn’t considered WHY he was moving so slowly until we walked through the door.

“Surprise!!!!”

I’ve never been so shocked. Somehow, without me having even a clue, my mother had contacted my best friend, Enger, and sent her some cash to plan something nice for my birthday (remember this was years before cell phones). I’m guessing that my mother had envisioned sparkling wine and canapés, but instead there were pizza boxes and a keg of beer. It was one of the funnest nights of my life. Rowdy, loud, and silly. 19.

1917457_183486030142_7364570_n-2

JackO is turning 19 on Saturday.

Each milestone that we reach comes with a little reminder of what coulda/shoulda been and I hate that. I hate that there is any hesitation on focusing on the happy part of happy birthday. I hate that I spend even a second wondering if I would have sent money to Jack’s college friends to buy some booze and party favors (probably not – 2017 is not 1988 – I’d probably end up in jail for contributing to the delinquency of minors). I hate that I wonder where Jack would have gone off to college. I hate that I use any ounce of energy cursing ALD — AGAIN.

But I do. I can’t help it.

When I started writing this, it was for me to post on Jack’s birthday, but I’m not going to wait until Saturday. It’s not fair to Jack. It’s not fair to his birthday. His birthday is for celebrating. He deserves it. He is the happiest person I know and NOONE likes a celebration more than our boy;)

IMG_3420

So — enough of the coulda/shoulda. We are going to celebrate all weekend. Heading to the beach with some of our closest friends. We’re going to eat pizza and cake and maybe even find ourselves a Mai Tai!!!!! Then, on Monday we will celebrate again with his pals at school. And, when we head to Block Island later in the month — we will have more cake and do more singing.

I will send some photos of all the fun on his actual birthday. In the meantime – send Jack a note. On Facebook or right here. Scroll down. See “Leave a reply”? Go for it!

Love, JackO’s mom

PS Once I have written down my feelings, I feel much better. No need for weepy phone calls or awkward hugs if you see me. I promise I’m now focusing on WackO JackO and his big, fun day/week/month.

PPS I wrote this last night and, as I was falling asleep, it occurred to me that I might have actually been remembering my 20th birthday. Enger? Dave? Betsey? Deb? Anyone?

 

 

It’s a GIRL!

IMG_2322

My daughter/sister/bestie is 17 today!

Anna left at the crack of dawn for the DMV, and returned with a huge smile on her face and a driver’s license in her wallet. Once I was done jumping up and down with her in the driveway, I found myself in a puddle of tears. And, the tears aren’t stopping.

I’m hoping that some time here on the computer will help me sort out why I’m finding today so overwhelming. If I can just find the words, I might be able to make some sense out of all these emotions.

I’m excited for Anna. 17 is huge and getting your license is a great achievement. I know that some kids these days aren’t too interested in driving, but our girl has been obsessed with cars since we let her drive up the driveway on Block Island when she was twelve years old. She organized a driving instructor and even talked us into giving her Dan’s car over a year ago (he took the train today – anyone selling a car?). When our girl gets her mind set on something, she’s all in. And, Dan and I have also been looking forward to this milestone. Not needing to worry about getting Anna to and from school and lacrosse practice – AND having her help with errands is going to be wonderful.

So, what’s with all these tears? Here’s what I’ve up with:

1.) There is always the “Jack Factor”. That punch in the gut when there’s a bold reminder of something that Jack will never experience. That was further highlighted today when I realized that the rest of my day included stocking up on his diapers at Target, dealing with Medicaid, and setting up some doctor’s appointments. That punch never goes away.

2.) The phone call to our insurance company adding Anna to our plan. Even with the “good student discount”, the increase to our policy was startling. Probably not enough to make me cry, but it certainly made me pause.

3.) As much as I love having a daughter/sister/bestie I can’t believe I no longer have a little girl. Wasn’t she just born?

I won’t go into all the details of the day Anna arrived, but I will share that it wasn’t quite as beautiful as I had imagined the birth would be. I had begged my doctor to allow me to have a VBAC (vaginal birth after c-section). Jack had been breech and 10 pounds – a scheduled c-section. I’d felt cheated from having a typical “birth story”, and thought that this was a great idea. Unfortunately, it wasn’t as fun as I expected. I had signed up for a VBAC, not for a natural delivery, but by the time Anna arrived, any bit of pain medication was gone. GONE.

Needless to say, I was in agony. The only thing that kept me from continuing my four-letter-word rant, was when I heard the doctor say, “It’s a girl!”

I stopped screaming to ask, “Are you sure?”

Dan and I didn’t know the gender of either Jack or Anna before they arrived. We loved the idea of the “ultimate surprise”, but truthfully I wasn’t ever expecting to have a daughter. Dan’s sister, April, is the only girl of her generation on the Torrey side. And, Pop Pop (Dan’s father) is one of four boys. When Dan and I started our family, I really pictured myself as a mom of a couple of boys. “It’s a girl” was a complete surprise. We had no name prepared and nothing pink waiting for her arrival. I just stared at this little peanut as she was placed on my chest, wondering what it was going to be like to have a daughter.

It’s been amazing, but how did the time go so quickly? How is that little girl with no name or pink blankets driving a car to pick up her boyfriend and go out to lunch?

Okay – I got it. I’m hysterical because my job as Anna’s mom is reaching the end. Thank goodness MyMom is on her way for a visit. I need some love. Hey, wait a minute . . .

 

Love, Jess

Happy Birthday Banana! You can come home now. I’m done crying for now;)

 

 

 

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.

FullSizeRender-97

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!

 

DSC01676

DSC01704

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

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.

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!!

 

FullSizeRender-69

 

 

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!

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”.

images-27

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!)

FullSizeRender-67

 

 

A Birthday for Bananz!

FullSizeRender-64

 

There are no parenting books that recommend being friends with your teenager. We are always told that our responsibility as parents is to parent.

My problem is that I do so much parenting with Jack. I need to be ON all the time. Missing the medication or hydration could be disastrous, and when he needs a diaper change, he needs a diaper change. I can’t slack – not even for a minute (this is not completely true. I do slack, thanks to a wonderful team of people, but I need to arrange so that I can slack).

When it comes to parenting Anna, she tends to direct. She tells me when to call the SAT/ACT tutor and when I need to drive her to school. She announces when it’s time for a new curfew (THAT we did need to negotiate), but also knows when she needs to call it a night so that she has time to work on her summer assignments. And, although we spend many dinner conversations discussing Anna’s schoolwork, we are rarely asked to help or edit. It’s not just because she has surpassed our expertise in many subjects, it’s because she has always had to be independent.

This is not to say that we do not spend quality time together. Anna and I spend hours watching and discussing groundbreaking television (i.e. The Challenge on MTV) and pouring through high school gossip. Anna and Dan also have a close relationship. He isn’t as fond of the rumor talk as I am, but he and Anna can discuss history or lacrosse stats all day long. And, watching Anna snuggle with her brother is one of the most magical things on the planet.

Anna has turned out to be a remarkable human and I love being her mother/friend. I just look at her, and I am in awe. Brilliant, beautiful, patient, compassionate, kind and happy. Everything I ever hoped my daughter would be.

Dan and I get all sorts of credit for raising this unbelievable child, when the truth is that Anna really deserves most of the credit.

Happy Birthday Bananz!! Sweet 16!!!

Love, Mom

FullSizeRender-63

CHANGE is a four-letter word

images-18

CHANGE has six letters, but for me it’s a four-letter word.

Lately, adapting to changes around here has proved difficult. Dan has a new job which has him traveling a ton. I’m missing my partner. For 21 years (really 23, but don’t tell my parents) we’ve been together most nights. Now there are a lot of nights where it just me, the kids and the pooches. The house has been lonely. And, it’s not just Dan that’s often out. Anna has a schedule that’s pulling her in a lot of directions that all seem to be far from Clinton Ave. Don’t get me wrong, Jack and the dogs are great company, but the normal Torrey liveliness has been lacking around here.

It doesn’t help that I’m working on “Jack’s 18th Birthday Project”. Unfortunately, this birthday project doesn’t involve planning cakes or presents. Instead, I’m dealing with lawyers and doctors and paperwork. When you’re profoundly disabled, 18 doesn’t arrive with it’s usual benchmarks. There is no graduating from high school (that comes at 21) or registering to vote. Instead,  Dan and I are registering to gain custody of our adult son. We need to hire two lawyers (one for us, one for Jack) to prove to the State that Jack is disabled. Apparently a simple introduction to our handsome, non-verbal, g-tube attached, diaper-wearing boy is not enough proof.

Once the State determines that Jack is in fact too disabled to care for himself, we move along to other 18th birthday highlights. First, we file for Social Security. The idea of collecting money on Jack’s behalf initially felt odd, until we were reminded that Jack will never work, never earn an income, never pay for his own expenses. We live in a country who helps the less fortunate, and Jack is part of that list. After Social Security, we file for Medicaid. Yet another reminder of Jack’s lack of independence.

I was sharing this list with my writer friend (who often acts as my therapist), Jenny, and she (once again) put into words what I was feeling, “I wonder if there is still hope in your heart, a little flicker of hope that someday Jack’s condition might change? Going to court puts a label on Jack’s future and makes it all permanent.”

Yes.

It’s heartbreaking that we find ourselves at this juncture. Eight years ago, I never imagined being here. I still have hope (and it’s more than just a flicker), but it is super hard to keep hope alive when you are looking at this pile of “proof” that says otherwise. So, I’m upset and then I’m over thinking everything in our quiet house. A perfect storm to bring me to a sour mood.

Last night, Anna and I had a conversation that gave me the kick in the ass that I needed. She was being a brat (the way only a teenager can be), but then she said some words that hit my core. I won’t go into the details, but basically she reminded me that our family is stronger than our circumstances and it was time for me to stand up and deal. Anna has always been smarter than I am and she’s right. Life isn’t always easy, but our days are moving along whether we embrace them or curse them. It’s time for this Torrey to start embracing them again.

Dan’s new job is wonderful and we will find a new groove. Anna’s changes are moving her along towards her goals: to rule the world, cure ALD and not miss a single party along the way. And, our dear Jack is getting along just fine. All this ridiculous “18th Birthday Project” goes right by him. He is just waiting for August so that he can get some presents and a huge slice of cake.

My kids are great teachers. I needed them to remind me that our family is WAY stronger than our circumstances and focusing on cake is WAY more important than the other crap.

images-14

Love, Jess