still spinning.

Not feeling like I can find the right words to adequately describe all the milestones/celebrations we’re enjoying right now. The only words I can think of are unreal, overwhelming, beautiful, magic and coffee (I can’t seem to get enough).

When words don’t work, I turn to photos. Here are some favorites from the first five days of The Torrey’s Crazy 14 Days of Non-Stop Celebrations, or maybe it should be The Crazy Torreys 14 Days of Non-Stop Celebrations.

Graduation parties, Father’s Day, a birthday celebration for JackO (between his transplant and typical birthdays) – complete with incredible live music and delicious cupcakes, and Prom.

 

 

I’m loving every minute of each event and haven’t cried as much as I’d anticipated, but trust me – my brain is still spinning.

Next stop – Graduation.

Love, Jess

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mixed emotions, a banquet, and a birthday – GO COUGARS!

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I’ve had mixed emotions anticipating this spring. So many things to celebrate, but each celebration highlights that we’re closing a chapter. There have been a lot of “lasts” lately and tonight is another one — the last Columbia Girls Lacrosse Banquet.

I’m going to be honest. If you’ve had kids who’ve played sports, you might not agree (maybe I’m a terrible mom), but I spent many years dreading the lacrosse season. It’s not that I don’t enjoy watching the sport, it’s that the season seems to have us spectators either wrapped in blankets, freezing OR trying desperately to find a sliver of shade to protect us from the hot sun. I also would look at the lacrosse schedule at the beginning of each season and wonder why on earth we couldn’t just play neighboring towns – instead each year we needed to shlep all around northern NJ to sit in the freezing cold or scorching heat.

Then, there’s the driving. I must have inherited it from Mymom. She HATED being carpool mom. My mother once said to the headmistress of my elementary school, “What do you mean you removed the bike rack because of all the snow this year? It’s going to take Jesse an hour to get to school without her bike.” I haven’t avoided getting behind the wheel as much as she did, but those after-practice pick-ups that hit right in the middle of dinnertime made me crazy.

For years I would use the “Jack excuse”. My friends helped out with the practice pick-ups and Jack would be used to make an early exit or avoid games altogether. “It’s too cold for him.” “It’s way too hot for my boy.” “Poor Jack can’t get much sun with all his medication.”

Luckily Dan was the opposite. He didn’t seem to be bothered by the heat or the cold or the miles. Not only did he coach Anna’s team for years, but he would rearrange business trips so that he wouldn’t miss games. And, when he was there, everyone knew. “Loud Dan” isn’t his nickname for nothing!

As this lacrosse season approached, I changed my tune and became full-blow LAX MOM. I didn’t want to miss a minute of the season – the last season. I kept blankets and extra jackets in the car and, as the heat arrived, I had an umbrella to protect Jacko’s skin from the sun. I picked up Jack early from school so that we wouldn’t miss the first face-off of games and used WAZE to get us around towns I’d never heard of. The cold, the heat – nothing really bothered me as long as I could watch 22 on the field.

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I’m so proud of Banana. I love watching her bound down the field with the same determination she has for all things. I love saying “She gets all her skills from her mama.” And, I love that everyone laughs because they know that it couldn’t be farther from the truth. Dan and I made her, but Anna is her own girl . . . young woman AND she is amazing.

Columbia Girls Lacrosse has had a great season and I’m so glad I didn’t miss it. They might not have the best record in NJ, but they have heart and they kicked plenty of a$$ this year – go COUGARS!!!

Today is also Jack’s 11th transplant birthday. Happy Birthday JackO!! We are thrilled for him, but letting this day be about his sister – his favorite athlete and human;)

Love, LAX MOM (last day)

PS Mymom didn’t love driving us around, but she always had homemade bread with fresh butter and cinnamon-sugar waiting for us when we got home from our walks/bikerides.

 

 

THIS is ALD #20 — Manh Cuong

 

When I reached out to the ALD community to share their THIS is ALD stories it’s mostly been mothers who have responded. I appreciate all of the input from mothers, but I’ve been wondering about the rest of the family. When ALD strikes, it doesn’t just strike the person and it doesn’t just strike their mothers — ALD strikes the entire family (the entire community if you live in a place like Maplewood). Tra My reached out to share her brother’s story and I jumped at the chance to share it with all of you. Meet Tra My and her brother, Manh Cuong.

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This is ALD # 9 — Manh Cuong
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This is my brother’s picture soon after he was diagnosed with ALD in September, 2000. We lived in Hanoi, Vietnam in a happy family with my parents. My brother, Manh Cuong, was born healthy in 1992 and he was a smart, funny and kind child. He loved playing football and drawing. He was a very clever boy, as my Mum would often say.

The symptoms of ALD started in the beginning of 2000. Manh Cuong grade’s slipped and he wrote badly as his vision declined. Unfortunately we didn’t get the right medical advice at that time, so we just thought that he was naughty and the bad writing was normal for a small and active eight-year-old boy.

We were wrong. An MRI showed that his brain’s white matter was damaged widely and only one doctor in Vietnam could conclude that it was ALD. The disease had progressed so fast that we couldn’t do anything. A bone marrow was too expensive to afford and too risky.

My mother is a brave woman. She took my brother to Paris with the hope that maybe a hospital in Paris may help. When they arrived in Paris, my brother could walk and within a month he was forced to sit in a wheelchair. When they came back to Hanoi, he quickly lost his ability to communicate. It was too late to do anything.

From the period that my brother became ill, until he lost his consciousness, he was always a kind hearted, funny and positive person. He encouraged my parents not to worry about him, he will get well soon. I still had hope that one day he could be healthy again so once in a lifetime we could see the sun together again, play Legos again.

My brother lived two and a half years after he was diagnosed – one of those years in a coma. He got his wings in May, 2013. He was ten years old. For us, his death wasn’t so bad. We are grateful that he doesn’t suffer any pain and has been released from a vegetative state – he is free. Grief hasn’t killed us, but made us stronger.

I am also a ALD carrier, but the situation is better now. I live happily with my husband and my daughter. My partner knows about my mutation and if we have a second baby, there is newborn screening in Singapore. ALD gives me chances to meet people like us, sharing information and medical aids and the boys could have better chances to live. Recently, I’ve started searching and searching to get more sources of information. In Vietnam, some families asked to share their story, avoid talking about it. I think differently — the more we share our situation, the better results we get so I am very open to talk about ALD.

My brother’s tomb is in the family cemetery. We visited him quarterly, bringing him roses to remember him, keeping in mind that we must be brave and live positively. We always love you Manh Cuong.

– Tra My

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Thank you for sharing your brother’s story with us, Tra My. Getting a sister’s perspective is interesting and your love for him is beautiful. Another fascinating layer of the story is that your family lived Vietnam and access to doctors who could recognize and understand our disease was limited. Your mother was brave to have done all she could do to find treatment for your brother, but time is limited with ALD — once it starts, it moves so quickly. Education for ALD needs to improve not just here in the States, but around the world.

Further proof that newborn screening needs to be accessible in the US and around the world so that we can change the future of ALD for everyone.

Love, Jess

 

 

THIS is ALD #19 — Alan, Cesar and Maximiliano

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My name is Kim and I’m the oldest of four children. I have 3 brothers. Angel , Cesar, and Alan. My brothers were all born healthy. Until 2016 nobody knew this horrible disease ran in the family.

December, 2015 my mom started noticing changes in my brother Alan – he was eight-years-old. He was having hearing problems and a hard time at school. My mother took him to a hearing specialist and they didn’t think anything was wrong. By May, 2016 things got worse. Alan started complaining of a terrible headache and was taken to a local hospital. They transferred him to a bigger facility, but the doctors had trouble figuring out what was going on. It wasn’t until they did an MRI that they discovered Alan had ALD.

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Alan and Cesar before ALD

My parents are Mexican and speak little English. They understood the diagnosis, but had many questions. When they learned that ALD is genetic, my two other brothers, Angel and Cesar, were tested — Cesar tested positive for ALD. My parents were heartbroken.

This was the same month I found out I was pregnant. When my parents shared the news with me, I took it pretty bad. I was six months pregnant when I found out I was a carrier. I learned that, since I was having a boy, he would need to be tested as soon as he was born.

Alan’s health started going down hill quickly. Doctors told my parents Alan had very little time and there wasn’t anything anyone could do. He lost his hearing, vision, speech, and started having trouble walking. My mom became his full time caregiver. Cesar was not as symptomatic and qualified for a bone marrow transplant (BMT) which he had in December, 2016. My mother was now caring for one son who was recovering from a BMT and another who’s disease was moving quickly.

My son, Maximiliano, was born just after Cesar’s BMT and was 3 weeks old when he was diagnosed with ALD. By January, 2017 my brother Alan was in a vegetative state and Cesar was doing well and was out of the hospital. It was really hard on everyone. We couldn’t believe three people in our family had ALD, including my son. The reality really set in when on March 23, 2017, my brother Alan lost his fight to ALD – just a few days after his 10th birthday.

Maximiliano is now a year old and he’s the sweetest little boy ever. He’s so smart, always smiling, and super curious. It’s really hard for me knowing my son has ALD. Knowing ALD took my brother away from me. Maximiliano is seeing specialists at UCLA and at Santa Barbara. I’ve gotten in touch with doctors at the University of Minnesota and I plan on taking my son this summer, and seeing what they have to offer.

Next month will be a year …a full 365 days since my little brother left us. It’s been really difficult for all of us to continue our lives without him. Holidays were more sad than happy. There were a lot of ‘firsts’ without Alan. In my heart I know he’s in a much better place. He’s at peace.

I really wish Alan had been diagnosed sooner and could’ve gotten treatment. Newborn screening could’ve saved his life. I think about everything that’s happened in the last 2 years. I’m a strong believer in God, but can’t help but think to myself why did He let this happen? To an innocent child? This horrible disease ruined my family but also made it stronger.

—Kim

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This beautiful family lives in California, which has now added ALD to it’s newborn screening panel. I try not to spend too much energy with “if onlys”, but I am glad that future generations of ALD families in CA will have the luxury of knowing and preparing. Alan didn’t have that luxury, but Cesar is doing well because he was treated in a timely manner and Maximiliano is being monitored by a team of specialists who will be prepared to help him IF he becomes symptomatic.

Corresponding with Kim has been an honor. She has been so honest and informative. I wanted to share two other notes I received from her last week:

I forgot to tell you, when I was pregnant I would place both of Alan’s hands on my belly, and he would get this huge smile and hug me because he knew it was me. He couldn’t see, but he was still aware of his surroundings. Before he lost his eyesight I showed him a picture of my ultrasound and he told me my baby looked like a little alien! I remember he was so happy he was going to be an uncle …

The night before my brother passed away, my mom had a dream. She told me Alan appeared to her in her dream and he told her that he was going to be okay but he didn’t want her to cry. I get the chills every time I think about this. I guess that was his way of letting my mom know … the next day he passed.

Thank you Kim.

 

Love, Jess

a ski weekend, the Jack Pack, and next year

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Just getting back from a ski weekend in Vermont with friends. Over the years we’ve done a lot of these weekends. We rent a house with a few families. Most everyone skis, but there are always a couple of people who linger with me and Jack. Our days are filled with quieter activities, but we always manage to have fun.

Each morning the house scrambles to life as the kids all frantically run around searching for their gear while the parents try to get some breakfast into everyone and make the lunches for the mountain. Depending on how late the previous night’s festivities went, the skiing crew heads out the door between 9:00 am and 10:00 am — then the house falls silent. That’s when the non-skiing crew makes a plan.

This trip included an awesome hike, a three hour/10,000 calorie lunch, an adventure to visit my oldest friend and her daughter AND a whole lot of girl talk – the rest of non-skiiers were ladies (sorry Jack). Jack is accustom to hanging with the ladies, and knows more than his share about the local gossip and just how many Weight Watchers points are in a margarita, but he always knows that by the end of the day he will be reunited with his peers. They will all walk in the door and, without missing a beat, find JackO to greet him and fill him with stories from their day’s escapades. Anna is always the leader of the Jack Pack – the best sister on the planet.

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But what about next year?

THAT’S the question that seems to fill my mind constantly these days. We just had an amazing weekend in a beautiful log cabin in Vermont — enjoying friends and the landscape and late nights singing along with music from our high school years (sorry I am not allowed to post any activities that took place after 9:00 pm). A perfect weekend and my biggest take-away is — What about next year?!?

Anna will be starting her second semester of college by February next year. Will Dan, Jack and I still head up to a mountain for a long winter weekend? What will it be like to travel with Jack as the only Torrey kid? Is it worth trying to continue these annual traditions or is it better to start new ones?

I know what you’re thinking — Anna isn’t moving away permanently. She’s going to college. College kids are home as much as they are gone AND she is only going to be 180.6 miles away. There will be many more family trips.

BUT, it is going to be different once she heads off to Baltimore. Her priorities will be — should be — on her life, on her future. It will be the beginning of her life as an adult and the beginning of our nest changing – again. The house is going to be so quiet when she isn’t around. Who is going to remind us what Jack should be wearing and listening too? Who is going to protect Jack from the endless hours in front of Bravo (with me) and PBS (with Dan)?

We will figure it out. Anna will only be a phone call away with her fashion advice and Dan and I will learn to control our TV habits (we know how to find TruTV). And, as far as the ski trip goes — we can go earlier in the winter if a ski trip is a “must do” Torrey activity. We can also forgo skiing altogether and go down to Baltimore and eat some crabs with Anna.

THIS is the real issue. THIS seems to be my go-to solution to all “my nest is changing” worries. Sorry Anna.

Love, Mom

 

 

Two-Armed Sister Clutch

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You’ve heard from me for ten years. Now, it’s Anna’s turn. When it came time for her to write her college essay I was excited to help, but like all things academic, she insisted on doing it on her own.

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        I have to hold his torso carefully so that he can’t bite me. For years, as my brother has gotten stronger, my technique has evolved from a simple shoulder hold into the now perfect “Two-Armed Sister Clutch.” My dad takes care of his head to keep it propped up—after all, the neck is the most important part. After ten minutes of very cautiously carving away at his beard, the world’s brightest smile emerges from his newly exposed face. I’ve just shaved my nineteen-year-old brother for the third time this week; my favorite chore with my favorite person.
        A sharp automatic razor and Jack—that’s my brother—make for a very interesting endeavor. But despite the chaos of the project, it always gets me thinking clearly. I think about the disease that forced its way into Jack’s brain ten years ago and made him this dependent on me, and about the fact it has been TEN years. I think about who he was before his disease—my typical big brother, goofy and in love with life. I think about who he is now—my silent and disabled big brother, goofy and in love with life. And finally, I think about who I am, and who his disease has made ME.
        Shaving my brother is a difficult task. I start off by trimming the top layer of the every-so-gnarly hairs. The first layer of Jack’s story is one very long word (the first word with more than six letters that I ever learned): Adrenoleukodystrophy (ALD). That is the neurodegenerative disease that turned my family from one straight out of a J. Crew catalog to the very quirky, “special” family that we are today. I was six, Jack eight, when he was diagnosed with ALD and his brain function slowly unraveled. Suddenly, my brother’s voice wasn’t around to fill up my house with jokes and curiosity. Suddenly, I had to be the athlete of the family…and the social butterfly… and the nerd. And now, a decade later, I am a hop skip and a jump away from being a professional groomer, too.
        After I trim Jack’s beard, its time to crank the razor up and dig down through all the brush, rounding the jawline and inching in to each crevice. Shedding that hair makes Jack look so presentable,… so professional… so normal. I get flashes of Jack Torrey as an adult (Doctor? Lawyer? Artist?), walking the streets of a big city, wife and kids by his side, living a normal life. I see myself meeting him for a bagel and talking about our careers, our friends, or our families. Sometimes I just picture us talking. It has been ten years since Jack last spoke.
        Luckily, my feeling sorry for myself is quickly interrupted by the most amazing laugh to ever exist. The disease that stole Jack’s words and independence did not manage to steal his laughter. I look at him and see what that sweat-inducing work out really uncovered: a giant, radiating smile. I let go of him and he wanders around the kitchen, slowly making his way back to me, tongue out and eyebrows raised, to give the best hug any sister has ever gotten from their big brother. That is Jack’s way of saying thank you.
        I’ll never have a typical sibling to show me the ropes of life and gossip with when I’m older, but Ill always have Jack. I’ll have his smile to tell me to always work as hard as I can. I’ll always have his laugh to encourage me to give back to other people and other families. I’ll always have his hugs after a lacrosse game or job interview gone wrong. And, I’ll always have an escape when I want to think about these things all over again—after all, that boy could always use a shave.

Anna Cappello Torrey
Johns Hopkins University Class of 2022 (we just got the news!!)

 

Love, Proud Mom

 

 

 

lucky mom

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Every weekday morning, Anna races downstairs making sure she gets a chance to give her Boogie* a hug before his bus arrives. It makes my heart melt. No matter what’s going on in our family, our country, or the planet, I try to pause and enjoy the love that these kids have for each other. Siblings/best friends – the strongest bond I’ve ever witnessed. I’m a lucky mom.

That is all.

Love, Jess

* Jack AKA Boogie, Boogie Brown, Boogs, Boogs McGee, JackO, WackO, The Weasel

 

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

 

 

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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What I realized while in Paris

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Sitting at a dinner table in the heart of Paris I watched my mother and daughter debate everything from single-sex college dorms to the definition of rape. Suddenly it occurred to me that I was watching two extraordinary women. Two of my closest friends.

I’ve always been close to my mother – first as a daughter and then as a friend. I remember when our relationship turned from mother/daughter to friend/friend. I was older than Anna. I needed to be older than Anna. I needed guidance well into my twenties (okay – I still need guidance, but my mother is much better at slipping her advice into polite conversation – usually).

It’s strange when your mother becomes your friend because she becomes human. She’s no longer the person behind a curtain who you fear but can’t really see. This new person makes mistakes and bad decisions (not you, Mymom – I’m just trying to describe most mothers). She goes from telling you what to do, to what she did and how she learned. This women asks you for advice and helps you without needing to take over. I loved when our relationship switched, but I was an adult when my mother’s curtain fell. My curtain seemed to fall off without me even noticing.

Anna learned early in life that I am human. I blame ALD for the weakened grip on my motherhood curtain. ALD has a way of stripping down resilience. Too much energy is taken with worry and late nights. It been quite a while since I was careful with my answers to even the most “adult” questions and I’m certainly not great at hiding four-letter words or less-than-perfect mother behavior. Fortunately, Anna has always loved me unconditionally and she seems to know which of her mother’s characteristics to emulate and which to stay away from . . . She has grown into a remarkable young woman. Anna’s not just a good student, but she’s smart – not always the same thing. And, she’s funny and kind. I’ve known all this for a while, but in Paris while sitting at the dinner table covered with a thin white tablecloth, I gained an appreciation that she has also become incredibly self-assured and well-spoken. Watching her with my mother, debating rather inappropriate topics for a sixteen-year-old and her grandmother, I thought WOW I want to be just like Anna when I grow up.

Anna and I have talked about going to Paris since she was a little girl – a girl’s trip to celebrate her sweet-sixteen. We invited all the women in the family to join us, but life is complicated for everyone and Mymom was the only taker. As disappointed as we were not to have the whole crew, it was lovely to have just the three of us on this adventure. Museums, long walks through the city, elegant meals, even a Segway tour (don’t ask Mymom about it – she’s still recovering). It was all perfection, but my favorite part was watching these two people that I adore debating each night at dinner. I came from one and created the other. Nothing is more amazing than that.

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This week has been busy with Smiles and Duct Tape getting out there. I’ve been distracted with marketing strategies and thank yous and begging for reviews on Amazon (not that I am doing that here), but I keep thinking about our magical weekend in Paris. I have two such strong, impressive (opinionated) women in my life. Lucky me.

Love, Jess

PS Anna still has a curfew. She might be mature and amazing, but she’s still only sixteen.

I’m gonna say it. It’s not appropriate or good parenting by any stretch. I can’t believe I am going to put this in writing, but her it goes — my daughter is my best friend.

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