what would you do?

Is the truth always necessary – sometimes even mean? Have you ever wished you had lied?

Last night I found myself wishing I could swallow the words that were pouring out of my mouth.

It all started with a fun dinner with one of my oldest and best friends (Hi Maura). We make an effort to get together every couple of months, and our nights are always filled with stories of life now mixed with ridiculous anecdotes of our high-school days. With Maura, I am just Jess. Same girl that she met 32 years ago. It’s awesome.

We had a great cuban meal and our usual share of Sauvignon Blanc, before we hugged goodbye and got into our separate Ubers.

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I climbed into the Toyota Highlander in a great mood and was delighted to be greeted with a driver who had a warm smile and bottle of water for me. Before long, we were busy chatting. I love talking with strangers. Everyone has a story, and if you’re willing to dig a little, fascinating tales are plentiful.

It took a little while – it usually does for guys – but finally my driver, Mohammad, started talking. He immigrated to The States as a young adult, and most of his family is either still in India or in Australia (which I must get to soon – he swears it’s “beyond beautiful)”. He misses his extended family, but feels like it’s too late to make another big move. He’s married to the love of his life (sweet story) and has two girls who he’s finally getting to spend time with now because he’s in-between steady work. Apparently, the restaurant chain he was managing did not appreciate the month he took off while his oldest daughter was recovering from a terrible accident.

At this point in his story, Mohammad got upset and I didn’t get all the details, only that his daughter suffered two very serious leg factors that required several surgeries and 14 days in the hospital. It was a horrible time and losing his job has put a great deal of stress on his family, but he is trying to focus on how wonderful it’s been to spend time with his girls, “I’ve gone from working 13 hour days/7 days a week and only seeing my daughters when they are sleeping, to picking them up at school and cooking dinner with them. The accident was horrible, but I’ve gained a new perspective and real appreciation for what’s really important. I need to find steady work soon, but I won’t go back to my old schedule. I would miss having time with my girls.”

We were stuck on the Pulaski Skyway, when Mohammad turned around and thanked me for listening to his story. Then he asked, “So what about you? Do you have any kids?”

I tried to have him continue sharing, but he insisted on hearing a little about me, so I kept it short and sweet, “I have two kids. My son is 18 and my daughter is 16. Great kids.”

He didn’t miss a beat, “Wow! Where’s your 18-year-old headed this year?”

It would have been so much easier if I had just said that my son was taking some time to find himself (not really a lie) or made up some sort of story. Mohammad had just opened up (something I’m guessing he doesn’t do often). I knew what was going to happen if I shared too much about our family. It makes people feel uncomfortable. Especially if they have just shared a “dark” moment. As if there is some sort of hierarchy of disasters and you aren’t allowed to complain if your’s doesn’t rank in the top ten.

The problem is that I feel bad about lying – as if I am ashamed of who Jack is and what his life looks like. A huge part of who I am is a mom. A mother of a beautiful, brilliant daughter who is going to do amazing things and the mother of a handsome, funny,  son who lights up a room with his smile, but can’t speak or take care of himself. How can I leave out the truth?

I tried for a quick soundbite.

“My son has some disabilities. He will stay at his high school for a few more years. College won’t be part of his future . . . but he’s great. Super happy!”

The silence that swept through the Toyota Highlander was painful as this guy tried to find the right words. I could see that he was trying to figure out what to do next, took a deep breath and asked for details. And, he didn’t give up after my simple explanation of “My son has a rare disease that left him with some challenges.”

“How old was your son when he got sick?”

“What was the treatment?”

“How long was he is the hospital?”

“HOW long?!?!?”

“Can he walk/talk/care for himself?”

I gave Mohammad the cliff notes of our journey, ending every sentence with, “ . . . but he is doing GREAT! Jack is super happy and my daughter, Anna, is doing great too!”

I felt terrible. I could see Mohammad’s eyes in the rearview mirror as he heard each answer. He was lovely and kept saying all the “right things”, but I couldn’t help but feel like I had ruined his moment of reflection. The rest of the drive home was awkward as I wished I could take back the truth. When we pulled up to my house, we were both relieved that the trip was over.

“Bye. Thanks for the ride and good luck with the job search. And, enjoy every second with your girls!”

“Bye. I will be praying for your son and your whole family.” – I wonder how many people hear THAT from their Uber driver.

Why hadn’t I just said that Jack was on his way to Goucher College (home of the Gophers/my alma mater)?

So what do we think? Is it ever okay to lie? Should I keep a good answer in my back pocket for the next time I am chatting with a friendly, water toting, stranger and they ask about my kids?

Love, Jess

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This is my truth.

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Ever need a vacation after a vacation? As much as we love our time on Block Island, we do tend to come home a bit worn out – especially after the Fourth of July. Picture 19 people, four dogs, sand, Scrabble, fireworks, a parade, loads of food and a whole lot of wine.

Although we are all there for four or five days, we act like our hours are limited. It’s the only time each year that all of us Torrey/Perry/Pastores are together and we fill the time with memories – some a little blurry, but always wonderful.

Thank you PopPop and Nanna Sue (and Block Island) for a particularly lovely holiday. We came home tired but smiling. See you in August!!!

Love, Jess

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My Sister (daughter/bestie)

 

I didn’t have a sister, so I made one. It took a bit of help from Dan and loads of support from our friends and extended family, and I think we’ve done a pretty amazing job with the project. She’s just one inch shorter than I am, has the same blonde hair (although hers is a little more natural than mine), and we defiantly share the same sense of humor. She is a great sister to have. She is smart beyond her years and is the kindest person you will ever meet. She is a much younger, smarter, kinder version of me. Anna is my mini-me daughter/sister/bestie.

Thanks to my daughter/sister/bestie being thirty years younger than I am, I get to have a window into the life of a teenager in 2017. Trust me – it’s amazing!

This June has been particularly packed with fun and signs that our little girl is not so little anymore. I know I am not alone in being caught off guard by how painfully long parenting goes on AND just how quickly it’s over. How can our girl who was just in pre-school be on her way to starting her last year of high school and filling her life with so many adult things?

Last weekend Anna stayed home alone for a night. She had to stay local while the rest of us went to visit family. We were going to have her stay with friends, but after a lot of back and forth, we caved. She has never done anything to lose our trust and she did not disappointment us last weekend. There were no parties. If you are thinking, “How would Jesse know?” . . . I set up a camera in the center hall — really — I might trust her but I am not a fool AND I’m also a little nuts.

Then, this week Anna went to her second Prom for the season. Our beautiful girl looked stunning in her red dress and wore higher heels than her mama can manage. She shared plenty of fun stories of teenage silliness with her (much) older sister (that’s me). She also came home at 4:03 am (I still have the camera in the center hall). I sure wish I could have half the energy of my daughter/sister/bestie!

The last hurrah for Anna’s Magical June will be her birthday. Anna turns 17 on the 28th. In NJ, 17 means she gets her driver’s license. That chunky little peanut who used to snuggle safely in a car seat just a minute ago is going to be driving a car. It’s a little hard to imagine, but at least now I have a daughter/sister/bestie who can help me with errands and is also a designated driver!

All these significant events are to be celebrated, and I feel so lucky that Anna and I have a relationship that is so close, but as each of these events happens there’s a little stab to my heart. Prom, staying alone, senior year, driving – these are all milestones that Jack will never reach.

It’s hard, but so far I’m holding it together. Thank goodness I’ve mastered the ability to compartmentalize. It’s the only way I can survive. When I look at my daughter/sister/bestie, I try to clear my head of what ALD stole from Jack, and focus on how amazed and thrilled I am for her. So much of Anna’s life has been about Jack. It’s her turn to be the center of attention.

Besides venting a tiny bit here, I am going to do my best to continue to ignore that little stab to my heart. It might not be the healthiest decision, but I really want to avoid missing these celebrations by wasting time with the “If onlys”. Life is way too short and my sister/daughter/bestie needs me!

Love, Jess

 

 

Happy Father’s Day DanO!

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I would like to record what happens in Jack’s bathroom on Sunday mornings. It’s a routine that takes at least 40 minutes and involves laughing, singing and plenty of four-letter-words. Dan does it so that I can have a break from the morning routine, but I usually can’t sleep through the commotion. Instead, I lay in bed and count my blessings.

Dan has always been a hands-on father with both the kids. He once spent an entire night waiting in line to insure Jack got into our favorite pre-school, and coached Anna’s lacrosse team for so long that I sometimes need to apologize to her varsity coaches now for Dan’s sideline behavior. Even with all his business travel, Dan tries to make every home lacrosse game to cheer on Number 22 (Bananz/Anna) and schedules business around IEP meetings and important school events for JackO.

I sometimes wonder what our family would have looked like without ALD taking center stage. Would we have hung together so tightly or would we have gotten distracted by trivial nonsense and focused less on family? I can’t say for sure, but I can say that, no matter the reason, I do appreciate how close our little foursome is.

I get a lot of credit for holding up our house of cards, but the truth is that while I do my share, it’s Dan that really holds it all together. He knows what each of us needs. Heated discussions with Anna about political topics, snuggling on the couch with Jack watching his favorite Impractical Jokers. And, he is the calm voice of reason, balancing out my crazy. When I get stuck under my pile of Social Security/Medicaid/medical bills bullshit, he reminds me of what is important. AND that we are a family that survives, “Just take things day by day.”

This morning we woke up in Connecticut where we were visiting family. Despite a long night of festivities and it being Father’s Day, Dan still managed to continue his Sunday morning ritual – bathing, changing, toiling his eighteen year old son. It takes parenting to a whole new level. There is a fair amount of cursing that goes on in the bathroom on Sunday mornings, but there is also a song for everything. Not sure how you manage to keep coming up with new ones, but keep singing DanO!

Happy Father’s Day!

Love, Jess

I’d also like to mention two other remarkable fathers – Nonno and PopPop. We love you both!!!

Our (kinda) Skilled Companion

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Keegan is a Service Dog. To be exact, he’s a “Skilled Companion” which means that he has been trained to work with people with disabilities (JackO) under the guidance of a facilitator – that’s me. He was trained for two years by Canine Companions for Independence (CCI) and is qualified to be in public – wherever a human is allowed.

Today Jack, Keegan and I are going out to Long Island for our Public Access Certification Test. We will be meeting up with a CCI team and several other CCI graduates at a mall where they have us work for an hour to see whether on not we are still qualified (under CCI standards) for public access. I’m a little nervous.

I hope the folks at CCI don’t see this, but I am pretty sure we’ve ruined Keegan. Sure, compared to Finn (our other pup), Keegan is a star, but when I think back to the dog we brought home 7 years ago, I cringe. Keegan knew over 40 commands and did not need any guidance to behave perfectly when in public. Now he’s a very sweet, kinda smartISH pet.

I keep warning our CCI trainers that we may have gotten a little lax over the years, and that perhaps Keegan’s skills might be a little rusty. The team has been sweet, assuring me that they understand that Keegan’s primary role is to be Jack’s buddy. “As long as your team can be handled safely and appropriately in public you should be fine”.

Fingers crossed.

So why am I brining him? Because I am a rule follower AND because I feel that if I DESERVE to be scolded, I should be. A great deal of time, effort and money went into Keegan’s training. If we are falling short on our end of the bargain, I need to do what I can to rectify it. After all, I am the first person to judge people that take advantage of the rather loose definition of a service animal.

I am an animal lover and I know a pet can be a member of the family. I also know that many pets can be well behaved and probably wouldn’t cause much of an issue in public, but the training it takes to insure an animal is silent, respectful and helpful in caring for specific disabilities is huge.

If you buy a vest on-line for your pet so that he/she can accompany you on vacation, you are actually hurting people who can’t be independent without their animal. If your dog/cat/miniature horse/ferret does not behave appropriately in public, people start to complain that all service animals are just “pets with vests”. We don’t want laws to change regarding public access for service animals because so many people gain a huge amount of support and independence because of their four legged friend. I know for Jack, Keegan is primarily a best friend/furry pillow, but some people rely of their service animal for far more than licks and cuddles.

So we are up bright an early to drive out to Long Island. Keegan has been bathed, his nails have been cut and his vest has been cleaned. I’ve been working on “Wait” and “Under” and “Car” for weeks, and we are as ready as we are going to be. I will let you know as soon as soon as we get the thumbs up or thumbs down.

Love, Jess

PS If we do not pass, CCI isn’t going to put me in handcuffs and take Keegan away. They will work with us to regain what we have lost.

For more information about CCI go to http://www.CCI.org

 

UPDATE: We passed with flying colors!!!!!!!

 

#THISiswhatALDlookslike

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I do some of my best thinking at night. Thanks to a small (kinda broken) bladder, I wake up often and before I fall back asleep, I often have these brief moments of genius. Sometimes I wake up and laugh at the absurdity of my late night ideas, but sometimes I think I’ve actually stumbled onto something good.

I’ve been fighting a wicked cold and have found my late-night-mind-spinning-time has increased exponentially. Lying in bed, cursing my cough and trying to find my way back to sleep, I’ve been thinking a lot about our boy, ten years and ALD.

I’ve shared our story from the beginning of our journey with ALD for a lot of reasons. Initially, it was to keep people posted on Jack’s progress, then it was for me to process the madness in our lives. BUT I’ve come to realize that one of the biggest reasons that I continue sharing is that I want people to see what our lives look like.

Adrenoleukodystrophy is not a disease you can picture by Googling the word. What you find when you Google Adrenoleukodysrophy is words like “demyelinating” and “metabolic,” and “long-chain-fatty acids”. If you dig a little deeper, you find statistics about boys who develop Childhood Cerebral ALD and men who develop Adrenomyloneuropathy (AMN), the percentage of Addison’s Disease reported, even the effects a carrier can develop. But ALD is not just about these facts — it’s about the people that it touches. They each have a story. Some good, some horrific, some somewhere in-between.

In order to really understand the disease you need to meet the people.

I went to a seminar a few weeks ago (run by Maplewood Cultural Affairs) and the cool, young, hip speakers spent a lot of time discussing the importance of social media in promoting your work/causes/etc. Apparently my time on the Facebook (even calling it THE Facebook) was getting a little dated. The seminar gave me an education on Instagram, Twitter and hashtags.

I came home and tried to figure everything out and thanks to my personal IT person – Anna – I got some extra schooling on Twitter and Instagram and finally understand what a hashtag is (FYI #hashtag is not a cool thing to tweet).

I started not just adding #smilesandducttape to archive my writing/photos, but I added #THISiswhatALDlooks like.

A few nights ago while coughing uncontrollably I thought – wouldn’t it be cool if all the other ALD families did the same and we could have a giant archive of who we are? Not just the boys post-transplant with complicated lives, but the boys who have hope thanks to New Born Screening, and the boys on Lorenzo’s Oil, even the boys who have lost their battle but are still alive in the hearts of their friends and family. AND, I picture it being not just our boys, but their siblings, their families, their community.

I’ve come to know many families with our disease and each has a story. I would love it if we could band together and introduce ourselves to all of you. I think if the public can SEE our disease they will understand it more.
Let’s see if we can get this to work – could all the ALD families out there use #THISiswhatALDlookslike to show the public the PEOPLE behind the disease?

Love, Jess

OK – awake Jesse has done some digging now that I understand this whole hashtag thing. #savetheboys #adrenoleukodystrophy  #fuckALD and #aidanhasaposse are 100 steps ahead of me. Not just archiving family photos, but starting a movement to save our boys. Not sure if I am helping or adding to the confusion here. You tell me.

 

#THISiswhatALDlookslike

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;)

Dear Social Security Administration,

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Dear Social Security Administration,

Stop wasting our fu*king time! I’m begging you. I’m coming close to a breakdown and my family needs me. I appreciate that there are people who wish to take advantage of the “system”, but I assure you — we are not one of them. AND, I realize that there are people who might not clearly qualify to receive Social Security benefits. Unfortunately, Jack more than qualifies.

1.) Are you working? No
2.) Is your condition “severe”? Yes. I find this almost insulting to answer.
3.) Is your condition found in the list of disabling conditions? Jack has five of these conditions.
4.) Can you do the work you did previously? Never worked.
5.) Can you do any other type of work? Jack cannot bag groceries, shred paper or walk down the street without someone holding his hand. I’ve often thought he would make a great professional hugger, but I’m not sure that it would pay the bills.

Several months after filing for Social Security benefits, Jack qualified and you sent us a shinny “Award Letter” (that’s really what it’s called – nuts) with his first check. The next week, you sent a letter that it was time to review his case to see if he was still disabled under the disability rules for adults.

I know that there is a need to reevaluate a person’s eligibility every so often, but 10 days after receiving the Award Letter seems ridiculous. I assumed it was a mistake, but after waiting on hold with your offices for over 90 minutes, I was told that I did need to return to your offices to go over Jack’s updated information (updated?). Then, you insisted that I bring my son to attend the meeting where I needed to once again describe his limitations in detail – THAT is cruel. Only made more cruel because we were forced to sit in a waiting room for 5 hours before having that uncomfortable conversation.

At the end of the review, the woman behind the glass (now I understand the need for the glass) said that we would hear within a few weeks if Jack still qualifies for his benefits. In her defense, she did preface this by handing me a tissue and saying, “I am sorry that I need to say this . . . ”

I’m so proud of where our family is ten years after ALD crashed into our lives. We are strong and thriving, but it’s days like this that make me want to crawl into a hole and scream.

Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled. Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled.

Is that better? Should I say it just one more time?

Jack is profoundly disabled. He is profoundly disable AND will always be profoundly disabled.

No Love Here, Jess

P.S. I promise to write again tomorrow and share a bunch of good news and funny stories. We do have a lot to celebrate right now and that should be my focus.

And the Winner is . . .

Smack in the middle of remembering the hell we went through ten years ago, we got a beautiful reminder of where we are now.

THIS is where we are now — We are winning the GOLD!!!!!

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This amazing day was thanks to the Special Olympics and the greatest school on the planet – CPNJ Horizon High School. Their love, support, training and encouragement helped Jack hop his way to the finish-line!!

If this video made you smile (or cry happy tears), please consider making a donation to Jack’s school.

https://cpnj.donorpages.com/WWCHorizonHighSchool2017/JesseTorrey/?t=636288010860612211

Love, Jess (proud mama)

P.S. It’s not really about winning, it’s about being able to play the game. Thanks to the Special Olympics and Horizon High School – Jack was able to play the game!

P.P.S. It is kinda fun to win sometimes;)

Ten years ago . . .

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2007

What were you doing ten years ago?

Ten years ago our family was in limbo. We had just been transferred from our local hospital to Columbia Presbyterian Morgan Stanley Children’s hospital in New York City. Our lives were standing still as we waited for doctors to figure out what was going on in Jack’s brain.

Seven days earlier, we had gone for an MRI so that we could rule out any significant neurological issues. We were told immediately following the “routine MRI” that it did not rule out anything. Instead, the MRI had confirmed that Jack had significant damage to his brain.

That was April 20th, 2007.

It would be ten days before we were ushered into a small conference room and introduced to the word Adrenoleukodystrophy. Those ten days were surreal.

Waiting is brutal. Although we tried to be optimistic, the doctors were not able to mask their concern. We knew that a diagnosis was coming and that it likely would be bad news. Jack was only eight-years-old and Dan and I both needed to play the role of calm parents, but in the stillness of night our fears would crawl out. There was very little sleeping for us during that time. The “unknown” causes the imagination to spin, often landing on the horrifying or the absurd.

We all know what happened. That we did get a terrible diagnosis and then lived through a nightmare before finding our way to a new life full of challenges. As we approach the tenth anniversary of Jack’s diagnosis and stem cell transplant (his other birthday), I can’t help but relive those days. I can’t help but remember where we were ten years ago. Who we were ten years ago. Bear with me as I spend the next month remembering and sharing.

Sharing has helped me survive the last ten years and reliving these memories is actually helping me to appreciate that we didn’t just survive that period, but we have moved incredibly far since that time. Of corse, I have my moments wondering what life would have looked like without Adrenoleukodystrophy crashing in, but mostly TODAY I am feeling grateful.

Jack survived. His life is complicated, but his quality of life is wonderful. He is happy and stable and manages to bring joy wherever he goes. Anna survived. She runs through life like she runs down a lacrosse field – determined and strong. I’m not exactly sure where she is headed, but her life is going to be extraordinary. Dan and I survived. We are not living the lives we imagined, but I can honestly say that we are closer now than we’ve ever been. I know it sounds cheesy, but he’s my best friend.

Our family has also managed to surround ourselves with friends who hold us up when we need it and encourage us to celebrate the good times (wine and dessert flow often). And, our extended family is incredible. We’ve just gotten to share time with both the Torreys and the Cappellos and we are all feeling incredibly blessed.

For a VERY unlucky family, we are really f*cking lucky;)

Ten years ago our family was living in limbo. Waiting for news that would forever change our lives. Today we are in control. Perhaps not able to control what tomorrow will bring, but in control over how we will face today — AND today is a great day!!

Love, Jess

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Today (not really today, but this year)