Mr. Bus

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Last week Jack’s bus driver told me that he was retiring. I’d be lying if I said that we had a close relationship. Sure, I’ve seen Mr. Bus every weekday morning for the last couple of years, but mostly it’s been a series of quick hellos and goodbyes. That said, I did make a point of telling myself to grab a little gift for him as a thank you.

I forgot.

Friday morning I remembered and started scrambling around the house searching for a gift. I usually have some Amazon gift cards handy (you should see the list of teacher gifts we deliver twice a year), but I couldn’t find anything. Then it occurred to me that I could give Mr. Bus a copy of Smiles and Duct Tape. I wrapped up the book with a big gold bow and as I handed it to Mr. Bus I said, “Thank you for everything you’ve done for Jack and his buddies. All these kids have a story. This book is Jack’s story.”

He looked down at the book and I couldn’t help but think he was a little disappointed that it wasn’t a gift card or a nice box of chocolates, but he said, “Thank you.”. I stepped off the bus, closed the door, waved goodbye and walked back into the house — that was it. People often come and go in life without much of an impact.

To my surprise, Mr. Bus returned to our house on Monday. He explained that the new driver couldn’t start for a few days. Then, he said that he’d started the book and wanted to thank me for sharing it, “All these years and I loved working with these kids, but never gave much thought as to how they got here.”

It was sweet and I was relieved that my gift hadn’t ended up on a dusty shelf. We spoke for a few minutes about Jack, our family and Mr. Bus’ retirement plans. Then I stepped off the bus, closed the door, waved goodbye and walked back into the house.

This morning Mr Bus arrived and announced that today was officially his last day. I put Jack in his seat and asked Mr. Bus if I could give him a hug goodbye. He didn’t hesitate. He got out of his seat, climbed off the bus and walked around to the sidewalk. We hugged like old friends, then he grabbed me by the shoulders, looked me in the eyes and said, “Mrs. Torrey, I finished the book and I want you to know that before God comes to take you home, you’re going to hear Jack’s voice again. I had one of those dreams last night.”

I couldn’t really speak through the tears that were suddenly pouring out of me. All I could do was nod and say, “Thank you.”

Mr. Bus climbed back into the bus, gave me a wave goodbye and pulled away. I stood frozen on the sidewalk.

People often come and go in life without much of an impact. Sometimes all you need to do is give a little and it’s amazing what you can get back.

Love, Jess

never too old to dress up;)

I realize that my children are 18 and 20, but they both still LOVE to dress up for Halloween.

Being off at school, Anna left few hints of her plans, other than an Amazon purchase that I did NOT approve (you still owe me $30 Banana). She had two parties this weekend and sent me photos of her costumes. Although I know that it’s inappropriate for my underage girl, I couldn’t help but laugh at her first costume – Whispering Angel.

IMG_3673And, who doesn’t love a good vampire?

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I had to be more hands-on with Jack’s costume. I spent weeks trying to find a clever idea, when it found me at Target last Friday. A large flamingo hat almost screamed at me from an isle full of Michael Myers, Demogorgons and Black Panthers. I introduce you to The Dancing Flamingo!! ****

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I got to spend some time with the Flamingo at the Trunk & Treats event at CPNJ Horizon High School. Always fun to hang with Jack and his schoolmates AND I got to sneak in a little last minute campaigning. Not sure if you’ve heard, but there is an election coming up next week . . .  Jack is running for president!!

 

Tomorrow I head down to Philadelphia for the ALD Connect Annual Meeting and Patient Learning Academy. This year they are hosting a book club where I am leading the discussion on Smiles and Duct Tape. I’m looking forward to spending time with many of our ALD community and introducing Jack (and Dan, Anna, Mymom and Nonno) to the crew.

Love, Jess

**** In case you are new to Smiles and Duct Tape, Dancing Flamingo has been a nickname for our boy for a while. To learn why, CLICK HERE.

 

 

two hours, some hugs, a godfather and a shave

Anna headed north this weekend to visit her boyfriend, Will, at Fordham. We tried not to give her a hard time for choosing him over us – after all, she’s in college, we just saw her two weeks ago and she’s in love. We followed her through texts and social media as she explored his campus and then headed to see friends at NYU. It’s still strange going from knowing every detail of your kid’s life, to hearing about adventures after the fact — or watching them realtime on my iPhone.

She and Will decided to head home Saturday to hangout with some pals who were in town. We had plans to go to visit family in Pennsylvania, so we left Anna with strict instructions to watch the dogs, lock the doors and NOT have a party. Then we watched her come home for the first time in two months through our Nest cameras — I know it’s creepy (we have them for security).

Anna had a great time (and no party that I could see from my iPhone) and we also had a great time seeing the Perry/Brooklyn Torrey gang, but as soon as we ate breakfast Sunday, we said goodbye so that we could catch Anna before her Bolt Bus took her back to Charm City. It left us with a two hour visit with Bananz.

Two hours with our girl doesn’t sound like a lot, but we made the most of it.

Walking in the door of our house I needed to look passed the stuff littering the foyer floor and pile of dishes in the sink to focus on loving our girl. We hung out around the kitchen island, enjoying sandwiches from the Millburn Deli (Anna’s got her Godfather fix) and hearing all about how everyone is doing. Funny that when I asked about how her pals were doing, Anna started with unfamiliar names. It took me a minute to realize that she was talking about her Hopkins friends — another reminder that things have changed a bit. We did eventually hear about the adventures of the kids we’ve known since elementary school — I miss all those wonderful humans and am thrilled to hear they’re doing well.

After lunch, we got to do what has become an important activity when visiting with Anna. Shaving.

I hate shaving Jack. For some reason shaving my twenty-year-old son, while he’s being held down making horrible faces, is painful for me — as if it puts a spotlight over how different our lives are. Since Anna left for college, I look at anyone who walks into our house as a potential barber. Be warned — if you come for a visit, you could be next. We’ve had a few good volunteers, but no one is as skilled as Anna. She manages to keep Jack smiling and gets every last hair without a nick or a scratch.

The barber decided it was time for to say goodbye to the goatee. I rather liked it, but it’s barber’s choice at our house, and he does look awfully handsome!

After the shave, it was time to say goodbye. It’s always hard to say goodbye to Bananz, but we will see her in two weeks for the ALD Connect meeting and my nephew’s baptism, and Thanksgiving is right around the corner!

I’ve got to say – I am getting better with being a college mom.

Love, Jess

Did you ever read Anna’s college essay? If not – CLICK HERE!

United to Beat Disease

I like to surround myself with people smarter than I am. While some people might find it intimidating, I find it thrilling to witness brilliance and like the challenge of trying to blend in. And, if I know I’m really … Continue reading

Impractical Jokers After Party!

Last Monday we were invited to be in the audience of the Impractical Jokers After Party – an after show where the Jokers sit around and talk about the latest episode. 

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When Uncle Matt shared that he had scored us tickets, Dan and I fought each other for who would tell Jack. Jack loves a lot of things – fresh cookies, 70s classic rock, cute girls, long walks on Block Island – but one of his absolute favorite things is the Impractical Jokers. I know when their show is on in the den, because I can hear Jack laughing from across the house. Jack, the kids who doesn’t say a word, can fill the house with his laughter when his buddies are on. That alone is enough to make us all fans of the show, but the truth is that our entire family is addicted to Impractical Jokers. It’s ridiculous. Humor made for immature teenage boys, but appreciated by a mature pre-med college girl, a finance guy and a middle-aged housewife.

It was a great day, but a little exhausting. The small audience was on folding chairs surrounded by wires and lights and cameras swinging from the ceiling. Imagine four hours of holding Jack down so that he wouldn’t pop out of his chair to race across the room to tackle (maybe even lick) his favorite celebrities. It would have been embarrassing, but I was even more worried about him taking down a few innocent bystanders and a load of expensive equipment.

Good news – Jack didn’t manage to pop out of his seat, nobody was hurt, all the fancy cameras were spared, and we had a great time!

Thank you Uncle Matt for making Jack’s dreams come tru — THAT is not a misspelling. Impractical Jokers in on truTV;)

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Today Jack and I are heading down to a Clinical & Pharmaceutical Solutions through Analysis conference in Philadelphia to share our ALD story. Not too sure what to expect, but guessing that there won’t be too many cameras and that we shouldn’t walk around asking people, “Where’s Larry?”.

Love, Jess

The After Party episode is scheduled to air on November 28. If they show the audience, look for us! We were on the far right in the second row. Jack had a ridiculous smile on his face the entire time, Dan was clapping so loudly that he was scolded (true story), and Matt and I were frantically holding down the boy.

National Daughter’s Day

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I missed National Daughter’s Day. Just one day without looking at my Facebook feed, and when I returned I was bombarded with piles of sweet pictures of everyone’s daughters. I felt like crap. How could I have missed National Daughter’s Day?!?

I went instantly to my phone, searching for the cutest photo of me and my girl to show everyone that I’m NOT a bad mom and that my daughter is way better than everyone else’s. I narrowed it down to a few good shots and thought about FaceTiming Anna for her advice, before realizing that I was acting crazy. I don’t need a National Day to remember I have a daughter or to celebrate her — I do a pretty good job doing those things on my own.

Not sure about you, but I can’t keep up. It seems that every day there is another National Day/Month reminding us to celebrate, remember or eat.

There are some great ones:

October 5 — World Teacher’s Day
June — Pride Month
June 20 — World Refugee Day
September — Leukodystrophy Awareness Month (for us, every month is Leukodystrophy Awareness Month)
November 27 — Giving Tuesday

Those are good ones, but then there are these:

January 4 — National Spaghetti Day
June — Turkey Lover’s Month
October 5 — National Do Something Nice Day (we need a day for this?)
June 1 — National Donut Day
June 9 — National Rose Day (I didn’t see one for Sauvignon Blanc, but June 14 is National Bourbon Day and September 7 is National Beer Lover’s Day)
October 15 — Global Hand Washing Day
September 16 — Wife Appreciation Day (just one day?)
March 10 — National Landline Telephone Day
June 21 — National Selfie Day
April 10 — Be Kind to Lawyers Day

The problem with these holidays is they distracted from things that should truly be celebrated AND they have people scrambling to join in. If you don’t eat ice cream on July 15, you’re missing out. If you don’t post a cute picture of your daughter on National Daughter’s Day you are a bad mom. So we keep going. I’m all for celebrating, but don’t you think it’s getting a little ridiculous? When we celebrate everything from quiche (May 14) to paperclips (April 4) to watches (June 19) to kite flying (February 8) isn’t it taking away from living in the moment? What if I don’t want quiche on May 14th, but I’m really digging the clam chowder that’s in front of me (National Clam Chowder Day is February 25) — should I feel guilty?

Perhaps we should consider celebrating things we love every single day.

I am trying to stop, but now I can’t stop looking at the National Days list. I wondered what National Days corresponded with our birthdays.

Dan’s Birthday (March 2) — National Read Across America Day (Dan does like to read and he loves America).

Anna’s Birthday (June 28) — National Tapioca Day (and National Nude Day, but let’s focus on tapioca . . . not sure if Anna has ever tasted tapioca, but I bet she would like it).

Jack’s Birthday (August 5) — National Underwear Day (NOT National Diaper Day? There is a Diaper Need Awareness Week in September, which is a lovely, but we need a new day on the calendar just for 20-year-old men who wear diapers). August 5 is also National Sister Day (THAT is perfect!!!)

My Birthday (November 19) — World Toilet Day (if you’ve spent time with me and my small, ALD affected bladder you know that this makes perfect sense).

In case you’re wondering. Today, September 27th, is National Chocolate Milk Day Day. Who knew???

Love, Jess

I don’t think I need to, but why not share some photos of my sweet daughter;)

Happy Belated Daughter’s Day!!!

lunch – the recap

In case you missed Wednesday’s post – CLICK HERE.

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seven hours of driving + a quick tour of campus + lunch with our girl = best day EVER!

It was just what we all needed. Seeing Anna in her element helped me let go of my nerves about how she’s doing. She’s thriving. Her classwork is interesting, she loves exploring Baltimore and has made many wonderful new friends (we got to meet several). Two hours of showing us around her new turf and a fun lunch and we were on our way. Saying goodbye was not easy, but we will see Anna for Parent’s Weekend in a couple of weeks and again in early November for Cousin Carlos’ Baptism. Thank goodness – we need more Anna time!

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Saying goodbye wasn’t easy.

Thank you for all the love and support this week. I heard from many moms that they’re feeling the same way and I’m not alone in the crazy drive/hug/lunch/hug/drive. I also heard from a few kids who shared that they appreciate crazy drive/hug/lunch/hug/drives! I sure hope Anna did, because I have a feeling this won’t be the only time I pull this stunt;)

Thank you Anna for being you and, thank you Jack and Mymom for being my partners in crime!!!!!!

Love, Jess

 

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Several years ago, I was getting my nails done when I ran into a friend whose son had just left for college in Boston. We were chatting all about the excitement of drop-off and what it felt like getting home one kid down. She admitted that the transition had left her feeling a little lost and that she was planning to head up the next day to take her son out to lunch, “What? For lunch? In Boston?”

Maplewood to Boston is a 4 1/2 hour drive. I walked away from the conversation relieved that I would never be THAT crazy.

Jack, Mymom and I are driving to Baltimore to see Anna tomorrow. For lunch.

We’ve been busy trying to get into the rhythm of our new nest. I’m feeling a little less lost than I had expected, but it’s not easy. As long as I stay busy I’m okay, but when the chaos of life quiets, I get teary. The result is that our house has never been as clean and I seem to be very on top of my my TO DO list and piles of paperwork. I am looking for anything that can distract me from the quiet. Things like writing and walking are a little harder to do – too much time to think about how much I miss our girl. It’s better for me to stay in motion.

FaceTime is a luxury that I hadn’t expected. I’m trying not to over-do it, but at least once a day we sit down for our call.

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Thirty years ago, there were two pay phones at the end of my dorm hallway. My parents would call on Sunday mornings at 10:00 am. It wasn’t just their chance to catch up, but it was assurance that I was awake at 10:00 am on a Sunday (As soon as I got off the phone, I would crawl back into bed). Within a few months, I got a phone in my dorm room. Still, the phone calls from home were limited. It’s not that my folks weren’t eager to speak with me, but times were different. 

There is a lot of talk among my circle of friends — maybe we shouldn’t call too much. We need to let our kids fly. They need their independence. We need our independence.

Perhaps this generation is too in touch, but I don’t care. I love chatting with Anna as she’s walking across campus in the sticky Baltimore heat. I love that I am starting to learn the names of her new pals and a little about her classes. AND, I love that Jack is able to not just hear his sister, but see her. This transition has been hard for all of us, but for Jack it’s been particularly difficult. 

Although we’d been preparing for months for this new reality, Jack seems to be constantly waiting for his favorite person to walk into the room. When her picture appears on the iPhone  screen, he lights up. They spend a few minutes making their silly faces as Banana tells her Booger how much she misses him. Parent’s Weekend is just a couple of weeks away, but we can’t wait.

So . . . we’re getting in the car tomorrow morning and driving 4 hours to take our Anna out for lunch. If anyone asks, I tell them that it’s because Mymom hasn’t seen Anna in a few months and the Jack really NEEDS a visit. That’s not completely true. It will be a lot of driving for a short visit, but I’ve never been as excited for a day trip in my life.

Love, Jess

To my friend from the nail salon – I owe you one. A lunch visit is a fine idea – NOTHING CRAZY ABOUT IT!!!!

happy birthday JackO!!

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What were you doing in your life when you turned 20?

I was living in Baltimore – a junior at Goucher College, studying art. I was trying to balance keeping up with my studies while enjoying every ounce of social time that I could. Dan was a student at Johns Hopkins and studying in Florence for the year. He was learning a new language and traveling throughout Europe with a very thin wallet and a EuroRail Pass.

When we started our family and I would dare to think about the future, like most parents, I imagined our children following a similar path to what Dan and I took. I didn’t think of if Jack and Anna would go to college, but where they would go. Whether they would study art or a language or the law. I hoped they would make good choices and stay out of too much trouble.

Having a special child, you need to learn how to shift your expectations and letting go of the college dream for Jack is something I did long ago, but with each birthday I’d be lying if I said I didn’t pause for a moment and think if only . . .

Instead of college, Jack greeted his 20th birthday still attending his high school and living at home. He requires assistance with everything from eating to showering to getting dressed to toileting to getting into bed. It’s not the life I ever imagined for our son, but as I celebrated his 20th birthday with him, all I kept thinking was how happy he is.

Jack partied all weekend long! Pool time with his buddies Peter and Orla, a party on our deck with close friends, and he even got to spend time with his oldest friend, Caleb. Today the party continued as he celebrated with his buddies at school. As I watched him enjoy all the attention, I realized there’s no need for if only just WOW! What a great life our boy is living!

Life at 20 can vary. It’s that age that straddles the end of childhood and beginning of adulthood. One thing that most people have in common at that age is that everything seems possible. Jack’s life is different than most, but I still believe that anything is possible. HAPPY BIRTHDAY JACKO!!

Love, Jess

Tupperware marked JACK ONLY;)

Mail isn’t what it used to be. Most days it’s just a pile of catalogs and junk. I sometimes go days without even glancing at my mailbox, but lately I’ve been checking it twice a day. I’ve felt like a kid at camp waiting for a care package.

Yesterday my care package arrived! It wasn’t a big box — just a slim envelop from the NJ Department of Health – our brand new NJ Medicinal Marijuana Program cards!!!

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Jack’s on plenty of medications – Hydrocortisone, Keppra, Fludrocortisone. He’s also had prescriptions for Ativan, Oxcycodone, and many others. Any time we need a refill, it’s easy. Drugs in this country are usually just a phone call and a quick trip to CVS away. Within an hour, we can have a pile of  medicine (many FAR more dangerous than marijuana) in our hands. Not so with the one medication that has truly transformed Jack’s life.

Not sure if you remember, but three years ago Jack started hopping (click here for that story). Sounds cute, right? It wasn’t. It was like he was stuttering as he walked. It made walking across a room tedious and a walk down the street nearly impossible. His PTs and OTs worked tirelessly. We all tried a variety of techniques and nothing seemed to work. Then I stumbled onto some research about how marijuana can help with spasticity (what we suspected was the underlying cause for Jack’s hopping). You can legally buy some marijuana/hemp products in most states (that are high in CBD – the non-intoxicating compound in marijuana and low in THC – the part of marijuana that makes you high), and I thought it was worth a shot. Before introducing anything to Jack’s medication list, I always check with his neurologist. I felt a little strange bringing up such an “alternative medication” for my 16-year-old. She quietly listened to me ramble on about my research, starting every sentence with, “Don’t judge and please don’t think I’m crazy.” She assured me that she wasn’t judging and brought in her colleague who was more knowledgeable about the benefits marijuana. Again, I told Jack’s story and filled him in on my research. He met Jack, looked over his chart and said, “Don’t buy anything online. I think Jack needs some THC and to be on Medicinal Marijuana. Let’s get him in the program.”

Seemed so easy — it wasn’t.

It took six months, piles of paperwork. loads of money and three doctors (including a psychiatrist for our non-verbal son) before getting our original cards. By the time we were able to go to the medicinal marijuana dispensary we were super excited to get started, but quickly learned our waiting wasn’t over. I needed to learn how to administer the herb to our boy. All they sell in NJ is the flower. The flower is the seed bearing part of the plant, including the buds that are smoked. Jack can’t smoke. I had to learn how to turn that flower into a butter and then into an edible (Jack’s favorite is a chocolate chip cookie). Even our wonderful doctor who had written the prescription, had little advice for us. It took some time and a few wasted batches, but we finally figured it out the right recipe.

It’s been a life changer. Jack’s walking better, sleeping better and all around more focused (odd because pot makes me anything but focused – not that I’ve ever experimented with marijuana. That would be illegal and immoral and just plan old bad). Two years in and we have our rhythm. Once every three weeks I infuse butter, bake, and fill the large Tupperware container in the fridge marked JACK ONLY — it is more work that it should be, but we’re all set.

Every 60 days we do need to get a new certification from our doctor. We’re grateful that our doctor doesn’t require a $200 visit every time. She seems to be one of the few people that understands that Jack is not going to grow out of his challenges (don’t worry — we do see her at least twice a year).

Everything has been going great until a few weeks ago when we received an email that we needed to re-register with the NJ Department of Health. More paperwork, more photos, more money and more proof that Jack still has spasticity.

ARE YOU KIDDING ME?

Governor Phil Murphy spent a whole lot of time running for office talking about his commitment to not just opening up NJ’s Medicinal Marijuana Program to include things like oils and edibles, but making marijuana completely legal in NJ. I do support the legalization of recreational marijuana and could go on and on about the benefits to the NJ economy and that marijuana is far safer than alcohol or nicotine or half the drugs we all have in our medicine cabinets, but I want to focus more on those individuals – like Jack –  who are provided more comfort, less pain and better quality of life because of their access to medicinal marijuana. All I really want to say is – MAKE IT EASIER FOR PATIENTS. PLEASE TELL ME THIS IS THE LAST TIME I NEED TO REAPPLY FOR THESE SILLY CARDS and if you can’t do that, at least HURRY UP WITH THE EDIBLES!

I am tired of infusing and baking and having my house smell like a fraternity. I’m also looking forward knowing exactly what dose I’m giving my son without needing to test it myself (which I would never do because THAT is illegal and immoral and plan old bad). I’m also tired of any paperwork that involves proving that Jack is sick enough/disabled enough to do anything/to take anything that will help him enjoy the best quality of life possible.

Our new cards expire July 2020. Fingers crossed that changes won’t take that long.

For more about our cannabis journey click here.

Love, Jess

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