Tag Archives: THISisALD

Progress? This might be the key(board)

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Jack’s progress doesn’t always follow a straight path. Brain injuries are complicated, and sometimes things move forward and then backward. Sometimes even sideways. It’s only after months of consistency with something new, that we feel comfortable that it’s here to stay. Perhaps that’s why I waited to share this story. But just this week I was given more proof that Jack has found a new skill. Typing.

I will start at the beginning.

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Jack has been using an app called Proloquo2Go for 6 years. It’s a communication program that uses words and symbols that when touched, speak for him. Every speech therapist Jack’s had since he has gotten the app has been excited by the possibilities and worked with it hoping to make communication easier for our boy. Each therapist has played with the format on Proloquo2Go —making words/symbols bigger on each page, making words/symbols smaller again, limiting the amount of information, increasing the amount of information, etc.

There’s always hope, and there have been times over the years that we have seen some improvement, particularly at school (like all kids, Jack does more at school than at home). Although there have been some successes, I’ve never been 100% convinced that his “successes” haven’t been a little guided. When Jack uses his iPad he needs someone to support his elbow — it helps with accuracy. I’ve always worried that his guides might be guiding more than they realize. Like when you use a Ouija board and subconsciously you direct the movement (unless the spirits are really sending subtle notes like GET OUT to every teenager who has ever played with a Ouija board).

This summer, Jack’s speech therapist added a keyboard page to the Proloquo2Go mix. I thought she was reaching a little. If Jack can’t consistently articulate a sentence when given entire words, then how could he manage to type in a whole word? But, instead of arguing, I said what I usually do to his eager, optimistic team, “THAT sounds awesome!”

All summer both Jack’s aide, Monica, and his therapists swore that they were seeing improvement, but I didn’t pay much attention. Until . . .

Last month, Monica took Jack on an adventure to pick something out for his birthday. As they wandered through the mall to find the perfect gift, they walked into a store that had a large selection of socks. Socks are the new cool thing for teenage boys, and Jack seemed excited to take a look. He searched through the rack of socks before grabbing a pair that had a pattern with something that Monica didn’t recognize. She said, “Jack, do you know what that is?”

Jack smiled and nodded his head so Monica took out his iPad and asked him to spell out the word. This is what he wrote:

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Marijuana has helped Jack so much for the last year and now it’s helping prove to the rest of us that Jack’s progress is real!

I loved this story, but I tried not to get too excited. At home, Jack focuses very little on the keyboard page on Proloquo2Go and more on the I’M HUGRY and I LOVE YOU buttons (that’s a good one). I’ve been waiting for more proof that the keyboard might really be the key to something. I finally got some proof this week. Jack’s speech therapist sent me a note sharing with me that she was telling Jack a joke and handed him his iPad for a response. Jack typed “LOL”. Maybe not as impressive as “mariguana”, but I will take it!

Love, Jess

* Monica is not just Jack’s aide. She’s his school mom and my dear friend. And Caitlin is Jack’s therapist who cracks jokes and makes magic happen.

* Okay folks – laugh all you want. I know that it’s funny that MY son has taken up  a hobby that involves spelling. I’ve confused pallets with platelets and angels with angles and wander with wonder. I’ve never claimed to be a good speller and apparently Jack hasn’t perfected it either – but we both get our point across.

 

 

 

Thrown Back into Reality

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As if leaving Block Island isn’t hard enough, we had a doozy of a ferry ride home on Sunday. Within a few minutes of leaving the dock, the boat was pitching frantically over the angry ocean and water was pouring in the open windows. Then, the vomiting started. At one point Keegan’s leash slipped out of Anna’s hand and he slid across the width of the ferry. Fifteen minutes into the hell, a young man next to us took his head out of a garbage can to announced, “We have 45 more minutes of this.”

We had known that it was likely to be a rough ride. Our friends had left the island an hour earlier and reported back that their journey to the mainland had been a nightmare. Dan sat with Anna and the dogs and I chose a seat where I could brace myself while holding onto Jack and we could sit facing the horizon. I was worried about Jack getting sea sick, but once we started moving I worried less about a little vomit and more about a seizure. He was sitting between my legs and I could feel the sweat pouring down his neck and his body melting. Jack’s body isn’t built for stress. He has Addison’s Disease (another gift from ALD) and his body doesn’t produce cortisol to help deal with added stress to his system. A seizure can be a result of his body being overwhelmed, and a boat that’s slapping in the water at strange angles is not an ideal place to manage a seizure.

My mind was racing with planning how to get Jack to a safe spot to lay him down and how on earth one of us could manage to grab his emergency medication that was in the back of our over-packed car two floors down. I was in a panic, but as always, my family calmed me. Anna kept looking over and whispering “I love you.” and “Boogie’s going to be fine.” And, Dan knowing that I can get hysterical fairly easily, kept saying things like, “This isn’t so bad.” – he admitted later that the ride was the worst he’d ever experienced and that Jack’s face (that I couldn’t see) had been a bright color of green. Jack also managed to keep me calm. I spent the hour whispering into his ear that everything was going to be okay. His trust in me and little squeezes back let me know that it was going to be okay.

We were literally thrown back into reality. I haven’t been that scared in a long time, but we survived. No injuries. No seizures. No vomit.

It took a couple of hours before we could recover and returned to our usual chatty car-talks reliving our Block Island adventures, but we are determined not to let that last hour ruin an amazing two week vacation.

Two weeks on Block Island where life is slow, days are long and sunsets are pure magic. Beach time, kayaking, tennis, biking, hiking, puzzles, cards, weaving, paddle boarding, large meals, large cocktails, even a reading of Smiles and Duct Tape at Island Bound Bookstore (thanks to all who attended). We had time with family and friends and, besides the extra few pounds around my belly, we are bringing back a load of good memories. Thank you Block Island for recharging us. And, thank you PopPop and Sue for hosting.

Jack and Anna are back at school, Dan is in Chicago, and I am working on my list of fall “to dos” (lots going on with Smiles and Duct Tape and a new project underway – I will fill you in later).

Welcome back to reality folks.

Love, Jess

 

If it weren’t for ALD . . .

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I ask myself a lot of questions that start with, “If it weren’t for ALD . . .”

If it weren’t for ALD . . . would I still be a photographer?

If it weren’t for ALD . . . would I have ever written anything besides shopping lists?

If it weren’t for ALD . . . what would Dan and my relationship look like?

If it weren’t for ALD . . . would we travel more?

If it weren’t for ALD . . . would Jack love music so much?

If it weren’t for ALD . . . would Anna be thinking about studying art over medicine?

If it weren’t for ALD . . . would Jack’s laughter be as loud?

If it weren’t for ALD . . . what would this year feel like?

I knew that this was coming, and did my best to brace for it, but I am still having a hard time. I open up Facebook and I’m faced with dozens of pictures of dorm rooms and college gear. Smiling family portraits of the last hug before mom and dad get in their car to leave their kids that are starting their next chapter.

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I thought I was okay, but the other day while getting Jack’s haircut, we were approached by one of his old friends. Jack was delighted and didn’t miss a beat – he went right in for a hug and a lick. Jack was fine, but seeing her beautiful smile and hearing about her plans had me crying before I knew what was happening.

So many tears.

I’ve been asking myself — If it weren’t for ALD . . . would I be crying this much as I said goodbye to these kids?

I’m a girl that cries at commercials and the cheesiest of Hallmark cards, so I’m guessing this milestone would have arrived with plenty of tears if Jack were among his college bound peers, but I know that it’s made more intense because ALD did happened – because Jack won’t ever reach this milestone, because it’s another thing he’s missing, because he’s being left behind.

If it weren’t for ALD . . . where would Jack be headed? Would we be driving or flying? Would he be off to study history or art or a language? Would we be excited to empty our nest a bit or dreading the goodbye? How can I NOT wonder “If it weren’t for ALD . . . ?” And, how can I NOT be sad?

So, my tears are flowing these days, as I expected they would be, but I’m realizing that there is another, unexpected layer to my sorrow.

I’m suddenly aware that a big life chapter is coming to a close — not just for the kids heading off, but for everyone they’re leaving behind. So much of my life for the last 19 years has been, not just as a mother to my own children, but watching all these other little humans go from babies to toddlers to school-age children to young women and men. I can’t believe that these kids are starting to move on, leaving everyone in their wake to figure out what they’re supposed to do with our new “freedom”. My nest will always remain full, but the focus of my circle of friends is changing. Friends are talking about selling their houses and starting new projects and careers.

How did we get here? What does that mean for our family? Just when I reached a place where I felt comfortable with my roll in the world, it’s changing. If it weren’t for ALD . . . would I be so uncomfortable with this change?

Crap.

Love, Jess

Today brings the hardest blow yet. Katie V and Katie M each head out for college (RJ is just a week away). These are not just family friends, they are family. Kids that have been been with us — held us up — before, during and after. We are going to miss you guys. Good luck, have fun, and feel free to call Aunt Jess with anything that your mom and dad might not want to hear;)

 

Friends

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Imagine having a friend who has never heard your voice. A person who you admire and look up to AND feel so comfortable with that you can laugh until you pee. A person who knows you so well that they can order lunch for you, and always choose the right movie to match your mood.

Imagine having a friend who doesn’t shout when you change their radio station without asking. A friend whose hand you can grab when you need some support and whose face you can lick in public.

Jack has a friend like that. His name is Peter. Peter and Jack have known each other since PG Chambers School days and they continue to have dates every couple of weeks to go to the movies or grab a cupcake at The Able Baker. And, when they’re not doing anything big, they sit, listen to music and enjoy each others company. All without Jack ever saying a word.

Peter is getting married today to his beautiful fiancé, Orla. Jack has been there from the beginning of their relationship and has watched as it has blossomed. I suspect Jack has heard more of their love story than Peter has shared with most people – Jack’s a good listener and he’s fantastic at keeping secrets.

Peter – Today is going to be a beautiful day. Thank you for including us and thank you for being such an incredible friend to our boy!!

Orla – Welcome to the family. Today you don’t just marry Peter, you gain an extra brother-in-law!!

Cheers, Jess

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HaPpY 19th!

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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;)

 

what would you do?

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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.

It’s NOT a Secret Anymore!

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An article I wrote about medical marijuana was published today on The Mighty – CLICK HERE TO READ IT!

If you are an avid reader of this blog you may recognize the initial story, but dig a little deeper – there’s a lot of information. Medical marijuana has been a life-changer for JackO. I hope sharing our story helps other people dealing with chronic pain/spasticity/anxiety/digestive issues – the list goes on and on and on.

Love, Jess

 

tired but smiling

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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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It’s a GIRL!

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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;)

 

 

 

My Sister (daughter/bestie)

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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