back and forth and back and forth

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I survived my 30th high school reunion.

I’d been a little nervous about going, but the anxiety spilled away as soon as the festivities began. It started Friday afternoon with some of my oldest/bestest friends coming over for dinner. Getting to really catch up with this group of ladies was magic – as if the last 30 years never happened. I’m blessed with wonderful friends from every stage of my life, but I grew up with this crew. They feel more like family than friends. There’s something amazing about being with people who really knew you as a kid — knew your parents and siblings well, knew what your childhood home looked like, when you learned to ride your bike, when you got your first bra, when you had your first heartbreak, what you got on your SATS (don’t ask). We sat around the dinner table and talked and talked and talked.

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Lots of stories, laughs and glasses of wine later, we decided it was a genius idea to head from my house to our hometown to meet up with some of our old classmates. It’s been a while since I left my house at 11:00 pm to go out, but we were up for the adventure (and Uber go us there safely). Crazy to walk into a room full of high school friends and memories. Everyone dove right in sharing stories and people looked great. A few more gray hairs, but overall the Summit High School Class of 1987 is doing amazing — especially considering we’re all creeping towards the big 5 0.

The next day was more of the same. I went back and forth and back and forth between my family and reliving high school. I got a lot of quiet time with my close friends and crazy time with our graduating class. It was incredible getting to see so many people— hear so many stories.

I did get a little overwhelmed with a few conversations about our family. People who have followed Jack’s journey, but haven’t seen me in a while, seemed to be under the impression that I’m stronger than I am. Although I loved the support, it made me uncomfortable, so I did my best to break the spell. Two days and nights of acting like a teenager, and I think I proved that I really haven’t changed much from the Jesse Cappello from back in the day (for better or worse). I also did a whole lot of saying, “Jack is doing great! His life is complicated, but I promise he’s super happy! I’m doing great too! The whole family is great – super great!”

It was two VERY long days/nights – that’s all I could come up with.

It was an exhausting/incredible/crazy/fun weekend, and saying goodbye to my old friends on Sunday was tough — I really didn’t want the festivities to end. I brought Jack with me for my last round of back and forth. His smile always makes things a little easier. I also loved that my old friends got to spend some time with Jack this weekend and with Dan and Anna too (although Anna was kinda busy – we were pretending to be teenagers, but she’s an actual teenager). Being able to share my life with old friends was priceless, and I loved hearing about their lives – everyone has a story. We all walked away promising we would do it again soon. No need to wait for the 40th.

I spent the weekend going back and forth from pretending to be 18 to the reality of what 47 looks like for me. I grew up in Summit, NJ — only five miles from Maplewood, but it felt like a distance as I went back and forth all weekend. The towns are quite different and my life is too. Luckily, Dan eased the pain for me (my hero) and took the brunt of the weekend responsibilities, but there are always reminders that our lives are a little quirky. Warning friends not to sit on the “pee couch”, being a little late for the party because of a poop (not my own), having friends notice that, while I seem quite savvy at drinking, my son requires a tube in his belly to get hydrated.

BUT DON’T WORRY — Life is great. Jack is doing great! His life is complicated, but I promise he’s super happy! I’m doing great too! The whole family is great – super great!!

 

Love, Jess

 

Summit High School Class of 1987 – It was unreal seeing so many of you! I’m thinking we should make a “31st High School Reunion” a thing. And, we need to get the rest of the class there!!

 

music and memories

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Dan and I have never allowed our kids to choose the music. Not in the house and definitely not in the car. We don’t have the patience for what “kids these days” listen to and we love our own music too much. When Dan and I first started dating, there were arguments over James Taylor vs Jimi Hendrix (I love him, but not for lounging out) and Simon and Garfunkel vs Rush (Dan will NEVER win that argument), but we settled into a groove quickly and found that there is plenty of music we both love. Jack and Anna have grown up with the Dead and Son Volt and Steely Dan and REM and Elvis Costello and Joe Jackson and Tom Petty and Bob Dylan and and and and. Even now that the kids are older (and Jack is Jack), if you peek in our windows after dinner some nights, you might find us all dancing in the kitchen.

Music is part of our duct tape.

They say that smell is the sense that is most closely linked to memory, but there is something primal that happens when you hear a song that you love. Tangled Up in Blue and Forever Young make me stop what I’m doing and sing out loud (sorry) and I’ve found myself sitting in grocery store parking lots more than once with tears running down my face because of a song on the radio – Beautiful Boy gets me every time. Then there are the songs that remind you of a time in your life – American Pie while I played with my dolls in the basement on Mountain Avenue next to my mother on her sawing machine, Free Bird at my first middle school dance, Me and Bobby McGee blaring from the jukebox at Long John’s Bar during my college years, Hey Ya as life saving stem cells went into my son’s veins in 2007.

As a teenager, my friends and I would make each other mixed tapes with our favorite music. We would send them to each other when we were in college – better than brownies. And, a mixed tape from a guy was way better than flowers or jewelry. It said so much about who they were and what they thought of you. I still have a pile of tapes in my box of memories. I’ll never part with them.

Dan’s love of music is fierce. His album collection is his most prized possession. A few years ago I made four large wall hangings – each with 15 of his favorite album covers. My plan was to hang them in his office, but they quickly found their way downstairs. We like to be surrounded by music.

Jack and Anna are a little older now and have their opinions. Jack found One Direction on his own, and if you play him just a second of one of their songs, he will shoot out of his seat and jump up and down. And, Anna’s room is always loud with music and some of it is lame, but I’m happy to report that much of it is familiar.

Anna got her driver’s license last month and we gave her Dan’s old car. She’s made it her own with new bumpers stickers and snacks in the glovebox. She also changed the radio stations. I can’t say that I approve of all of them, but I noticed last week that Tom Petty Radio was saved on channel one. All I could think was that we’d had done a pretty good job raising her.

This week has been horrific. My heart goes out to all the families/friends of those who lived through the horror and those who died in Las Vegas Sunday night (when is this going to end folks?). Mexico, Puerto Rico, Las Vegas — Watching the news has become so difficult the last few days, that I find myself avoiding television and leaning on music for entertainment. And, music isn’t safe either.

We’ve lost a lot of legends the last year. Just to name a few: Prince, George Michael, Glenn Frey, David Bowie, Gregg Allman, and now – Tom Petty. Anna was the first person I called when I heard the news that he had died. I heard Petty coming from her room last night as I went to bed and I played a lot of his music yesterday. Many of his songs hold some wonderful memories.

That high school reunion I talked about a couple of weeks ago is this weekend. I forgot to lose the five pounds and don’t really have the perfect outfit, but I am looking forward to it. I think seeing some old friends, laughing about old times and listening to good music sounds pretty darn awesome.

Love, Jess

“It’s sort of hope amongst the ruins, I think. To me we’re all in the great wide open. I think life is pretty wild; I really want to like the world, but at the same time I have to write about what I see.” (Tom Petty 1991)

 

 

30 years later

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My 30th High School reunion is coming up and I’ve been a little nervous about going. As I watch the stream of old photos get posted on the SHS Reunion Facebook page, I can’t help but be apprehensive. I keep looking at the photos thinking about who I was thirty years ago, who I am now, and where I thought I would be.

I’m guessing/hoping that I’m not alone.

It’s not that I’m ashamed of who I was during my high school years, it’s just that I am not particularly proud. I never felt like I had a real “roll”. I did have a group of amazing girlfriends (many still close friends), but I never felt like a star student or a dedicated athlete or a talented artist — and that was one of the few things I was kinda good at. I was a solid C+ across the board.

Maybe no one really felt completely confident in high school. Maybe everyone cringes when they think of themselves as a teenager. But, when I look at the old pictures being posted on Facebook, there are a few faces that not only always looked happy with who they were, but they seemed to own the room. I look at the pictures of me and, maybe to the untrained eye you can’t see the insecurity in my 16 year-old smile, but it screams out to me now.

And, it’s not just who I was in high school that has me uncomfortable about this reunion, it’s who I am now. At our 20th reunion Jack was just out of the hospital following his stem cell transplant. That reunion was a blur (and not just because of the wine). I didn’t know what to say when people asked what I was doing with my life.

“Married, two kids, live in Maplewood, still work on my photography. Oh, and my son has a disease called Adrenoleukodystrophy. He just got out of the hospital where we’ve been living for two and a half months. I know how to change a g-tube and hook up an IV.”

Trust me – I got a lot of awkward hugs that night.

Today, I’m more comfortable in my new life and know how to share answers to “What are you up to these days?” in a way that makes people comfortable. Or, as comfortable as you can make them (sometimes it backfires – stories about a 19 year-old’s potty habits aren’t always a hit). Even with my new found confidence, I’m nervous about walking into a room full of people with memories of teenage Jesse Cappello and questions about middle-age Jesse Torrey.

 

I know some of my old friends are feeling the same way. Facing a room full of your childhood can be intimidating. It’s not just that you worry about how people will react to who you were in high school and who you are now, but it can get you thinking about who you thought you would be thirty years later – what your story would be. Things as shallow as what you would look like and what you would drive and things far deeper like what you would have accomplished and what you would have done to better yourself/others/the world.

Reunions have us all looking in the mirror, but maybe that’s a good thing. Everyone has a story. Perhaps it’s good for all of us to go back sometimes and evaluate who we were and who we’ve become, even if it means we need to swallow hard along the way.

So, I’m going to the reunion. I hope I come back with no regrets. Grateful for spending time with old friends and having relived some old memories. Maybe even have made some new ones.

Love, Jess

I have a hair appointment scheduled for next week. I may not have the best answers to “What’s going on with you these days?”, but at least I can cover the gray.

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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.

 

 

 

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;)

 

I refuse to steal the HAPPY out of HAPPY BIRTHDAY

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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.

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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;)

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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 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

 

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;)

 

 

 

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!!!

GOOD > BAD

Enough with the hard stuff – let’s celebrate!

A crazy few weeks around here and most of it has been WONDERFUL.

Last week, Jack and I had the honor of speaking at an event for CPNJ (the parent organization of Horizon High School). 150 employees were celebrating 5, 10, 15, and 20 years of service to CPNJ. We were asked to speak representing CPNJ families and sharing a bit about how their team has helped us. My nerves still cause me to jitter a bit when I speak publicly, but overall I think I’m doing a better job. And, looking out at a room full of so many people who have helped our boy, I felt extremely grateful. I did the majority of the speaking, but when Jack joined me on the stage, he really did steal the show. His smile is electric.

 

Then yesterday, we shared our story in a whole different way. Through Jack’s school, we were approached by a Taiwanese television station that is making a documentary about children with special needs and adaptive equipment. A large crew of people and cameras arrived bright an early to catch our morning routine (I took care of some early morning messiness before they arrived – THAT would have been a little TOO real). The crew followed JackO around throughout his entire day, and by the time they arrived back from school, they all seemed like old friends. It’s amazing the connections our silent boy is able to make. The documentary is following children with disabilities from four different countries, discussing different approaches cultures have towards the special needs community. It’s scheduled to air in Taiwan in the Fall. They promised to send us a copy. I can’t wait to see our boy on the screen (and to see if my need of highlights is distracting;-).

 

It’s not just our boy who has been getting some attention. Anna received a wonderful invitation last week. On Monday, Boxes of Fun is being recognized as a recipient of the Friends of Child Life Award at New York Presbyterian Morgan Stanley Children’s Hospital. We’ve been making Boxes of Fun for the children on the Bone Marrow Transplant floor at the hospital for eight years. Last year, Anna asked to take over and started a club at her school with her dear friend, Jane, to help raise money and fill the boxes. No surprise, they dove right in and have not only raised enough money to extend the program to Hackensack Hospital, but they have raised awareness for both Boxes of Fun and paying it forward. Kids these days . . .

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Our lives are complicated. Big things like fighting with Social Security and little things like Jack developing a habit of soiling his bed overnight. Some days I feel like we are dealing with more than our share of sh*t, but when I step away and look at the big picture, I am reminded that the good still outweighs the bad by a long shot.

I am beyond proud of both of our children. Each with such different lives. Each extraordinary.

 

Love, Jess

 

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