Thrown Back into Reality

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

 

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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Traveling is like childbirth

Traveling is like childbirth. Once you look at the result, you forget about the pain.

When my parents announced last year that they were buying a house in Santa Fe, I thought they had lost their minds. “Santa Fe? All the way in New Mexico?”. They pointed out that it was closer and easier to get to than Chile (where we have a family home). They didn’t seem to appreciate how ridiculous that sounded, so I gave up. I assumed it was some sort of late mid-life crisis and that they would come to their senses.

Thank goodness they didn’t.

Getting to Santa Fe was a journey. We left the house before 7:00 am with three suitcases, two carry-ons and a diaper bag. An Uber took us to Newark Airport where we flew to Denver, took a tram to grab our luggage, found a bus to get our rental car, and drove to Taos, NM. In Santa Fe’s defense, we did add Taos to the trip and we did drive the long way through Colorado. Sounds like an odd choice for us and our diaper-wearing/medication-needing boy, but we wanted to see as much as we could. It was worth it. Colorado is spectacular. The layers of mountains and color made for a bearable six hour drive and some pretty amazing photographs (of corse, I only drove for an hour . . . ).

 

We arrived to Taos around 8:30 pm and found a local restaurant. We were exhausted, but did enjoy a nice dinner before finding our hotel and collapsing quickly into bed. Unfortunately, I drew the short straw and had to share a bed with Jack. It’s not something I would recommend, especially when you’re really tired. He wiggles and kicks and pees. A trifecta that doesn’t lead to a great night’s sleep. I woke up cranky, wondering why my parents couldn’t have gotten a house at the Jersey Shore like everyone else. Santa Fe is really, really far away.

We had a light breakfast at the hotel and did our best to see as much as we could around Taos. Then we had lunch and, between the food and the charm of Taos, I started thinking that maybe New Mexico wasn’t so bad. But, we still had a couple of hours before reaching our final destination. Why is Santa Fe so far?

 

Back in the car heading to Santa Fe we enjoyed the landscape, but had our fingers tightly crossed that we would’t need any emergency diaper stops. Our journey just kept going on and on, until finally WAZE told us that our exit was in .5 miles. We’ve never been so excited.

We pulled off the exit and suddenly the interminable trek to get there seemed to evaporate.

Santa Fe is not the easiest place to get to, but once you arrive, it’s breathtaking. A perfect combination of art and food and shopping and hiking and really good spa treatments. If only it were closer to the ocean, it would be called heaven.

 

So now I get it. My parents aren’t nuts. There is something magical about Santa Fe (New Mexico is the Land of Enchantment). It also looks a lot like Chile and the quiet pace of life out there is a wonderful balance to my parent’s busy lives in New York.

We had a wonderful weekend celebrating 50 years of Juan and Jean. Although there were hours and hours of planes, trams, and automobiles to get there, it was worth it. And, Jack managed to NOT create any sort of funny/awkward/smelly stories along the way – or no more than in a normal day in Maplewood.

Love, Jess

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50 Years!!!! Thank you Nonno and Mymom for a wonderful weekend and sharing Santa Fe with us!

. . . dear, dear, dear, dear, Santa Fe

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I act as if we’re moving to the moon every time we’re going away on vacation. I feel the need to travel with enough medication to get us through a year, and find myself cleaning the house frantically before we leave town. Our dear friend, Maria, is holding down the fort while we’re gone, and I can’t imagine she would care of the basement closets were organized — but there I was this morning, tackling the unnecessary job. And, I kept adding to the pile of “things that need to be packed”, having no idea how we are going to manage getting everything into those suitcases (and is 5 pairs of shoes really necessary?). WHY is vacation so stressful?!?!

No one wants mom going into the trip anxious and cranky. Deep breath. It’s going to be a great vacation.

Santa Fe, New Mexico is where we are headed tomorrow. A long overdo Cappello family reunion to celebrate my parent’s 50th anniversary. 50 YEARS! We’re looking forward to being with family and finally seeing my parent’s new home-away-from-home. Having never been to that part of the country, we’re excited to explore and see as much as we can. For that reason, we decided to fly to Denver and drive to Taos on the first day of our adventure. It seemed like such a great idea months ago when we planned the trip, but now my heart is racing as I imagine a day where we added a six hour drive to the journey. I need to breathe and remember that getting there (can be) half the fun — ONLY IF I LET IT.

Deep breath.

In my defense, most of the packing and organizing is left to me, and traveling with our boy is rather complicated. Add planes and long car rides and there is a bit to think about. It’s not just our constant bathroom concerns (a theme for our family), it’s that we need to make sure that we have enough of everything necessary to get through the trip. Medicine, diapers, chucks, wipes, clothes, sunscreen, more clothes. We also can’t forget to request a wheelchair for the airport. Walking with our hop/skip/jumper (AKA JackO) through terminals is tedious AND his curiosity can be hazardous. Imagine a security line, tightly filled with people. Jack can’t help but pat unassuming heads and lick attractive arms. A wheelchair prevents some of these embarrassing exchanges and allows people to understand that we have a “special” situation. There is the added benefit that it also often expedites the security lines, but it’s tacky to discuss the benefits of putting your teenage son in a wheelchair. Shhhhhh.

So, I’ve been packing, cleaning, confirming flights/hotels/cars/wheelchairs, and primping (Jack and I both needed manicures). We’re almost ready for the trip. I’m not sure why my heart is still racing. I need to relax and focus on the wonderful adventure that lies ahead. It’s time to breathe and think about Santa Fe.

“Santa Fe, dear, dear, dear, dear, Santa Fe.” Bob Dylan

Love, Jess

It’s been a while since I’ve written. Sorry. I do have a good excuse . . . really good . . . but I will save that news for another time.

 

Weekend Away = Panic

photoThis is when I start to panic. I start to think of all the possibilities of what could happen while we’re 229 miles away (yes, I looked it up). I have the usual concerns – What if Jack gets sick? What if the dogs get lost? What if the G-tube falls out? And, this year I have the added anxiety of leaving our high school daughter with limited monitoring. Anna’s a great girl, but I’m always waiting for her to turn into the rotten teenager of my past.

We’re heading to Massachusetts for a visit with old friends. Dan and I are lucky to share an incredible pile of friends from college. A pile that manages to find any excuse to get together and pretend that we’re still eighteen (with better wine and tougher mornings). When Jack first got sick, I never imagined that we’d manage to keep up our mini-reunions, but early on we decided that time away with old friends was a necessity.

Our friends have always been a big part of our lives and for the last seven years they’ve been a big part of our survival – duct tape. Being with old friends and escaping reality with my husband a few times a year is priceless. This crew let’s us just be Jesse and Dan, alleviating us from being ALD parents. And, being away reminds us that other people can be in charge without the world imploding. We’re not the only people who can bathe and medicate Jack and gently remind Anna to put her phone away. We may come home exhausted on Sunday, but we’ll be refreshed.

So it’s all great. Dan and I are getting time with each other and old friends; the kids are getting time with each other and Maria (Jack’s sitter, my savior, and an amazing cook). So why am I spending nights awake thinking of all the things that could go wrong? Why is going away so stressful, even when I know that the kids will survive and Dan and I will have a ball? Maybe it’s just a mom thing.

Dan doesn’t share my crazy panic. He’ll wake up Friday, throw some clothes into his weekend bag, give the kids a smooch, and hop in the car. Meanwhile, I’ll make Dan turn the car around twice before we reach the highway to double check my three page list of instructions. We will be in Connecticut before I can breathe. And, I will call so often this weekend that Anna will start to answer with, “Mom. Are you kidding me?”.

I’m here at my desk working on my “list” and making sure I haven’t forgotten anything critical. My bag is already packed and in the mudroom and Jack’s medication is drawn and labeled for the next week (What if something happens and we can’t make it home by Sunday?).

If the world doesn’t collapse, Dan and I are heading out Friday morning. If you see the kids around town this weekend, give them a hug AND if you see me post any pictures on Facebook, please send me a text with a gentle reminder to put MY phone away.

Love, Jess