tired but smiling

 

Ever need a vacation after a vacation? As much as we love our time on Block Island, we do tend to come home a bit worn out – especially after the Fourth of July. Picture 19 people, four dogs, sand, Scrabble, fireworks, a parade, loads of food and a whole lot of wine.

Although we are all there for four or five days, we act like our hours are limited. It’s the only time each year that all of us Torrey/Perry/Pastores are together and we fill the time with memories – some a little blurry, but always wonderful.

Thank you PopPop and Nanna Sue (and Block Island) for a particularly lovely holiday. We came home tired but smiling. See you in August!!!

Love, Jess

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Welcome Home.

I walked into my house Tuesday night and was greeted by Anna with a warm hug and dogs licking my face. Then I ran upstairs to see if Jack was still awake. The smile on his face lit up his room. Going away is great, but coming home is even better. Usually.

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Three days in Mexico with good friends and the warm sun, and I was relaxed and happy. It wasn’t until the morning that reality set in. Big time.

Dan is in Asia on business, so I arrived home to being a single parent this week. No worries – I was just in sunny Mexico – how can I complain? I was a little tired from vacationing, but nine hours of sleep and I woke up in the morning recharged and ready to get stuff done. I had my list of to-dos, breakfast for the kids organized and I walked upstairs to start our morning routine. I opened the door to Jack’s room and the first wave of reality hit me. Poop.

It wasn’t Jack. It was poor Keegan that had covered the floor with liquid gifts. Unfortunately, I didn’t have enough hands or minutes to add dog-clean-up-duty to my morning, so I quickly grabbed my boy, shut the door and continued with our routine  – shower, teeth, yell at Anna to get downstairs, clothes, medicine, breakfast, hydration, leg braces.

I kept Keegan close to us as we went through the morning motions and he seemed happy and comfortable. My Mexican attitude kept me calm. I managed to get the kids out the door and by 9:00 am I had cleaned up the poop, mopped the floor, and had started the laundry. I was ready to start fresh. No problema.

I made a healthy breakfast and sat down. It wasn’t until I had the first bite of my toast that I realized there was something wrong with me. Did I hurt my mouth? It didn’t feel right. Then I put my hand to my jaw and felt that it was swollen. I ran to the bathroom mirror and saw that my cheek and jaw was so swollen that I couldn’t see the ear on my right side. And it was growing.

I was forced to throw my entire day aside and raced to Urgent Care.

Apparently your salivary gland duct can actually get blocked. Often times it’s connected to an infection, but not in my case  (I’m just lucky).  It looks like the mumps, but only one side is affected so it’s extra startling to look at me. And, the pressure on my teeth, my ear and my head are intense. I go to another doctor today to find out when/if/how to treat this. Until then I will try to remember the sun on my shoulders and stay away from the mirror. Tan chipmunk is my current look.

 

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Monday

 

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Wednesday

I am trying really hard to keep a good attitude, but if one more thing gets added to my plate or my face, I may have a full blown nervous breakdown.

Love, Jess

P.S. Keegan seems much better. He did have one more episode, but has been good now for about 20 hours – although he is currently mad at me for only feeding him rice for his last two meals.

HAPPY BIRTHDAY DANO (AKA FATHER OF THE YEAR/GREATEST HUSBAND ON THE PLANET)! PLEASE HURRY HOME. WE NEED YOU!!!!!!!!

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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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. . . 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.

 

CHANGE is a four-letter word

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CHANGE has six letters, but for me it’s a four-letter word.

Lately, adapting to changes around here has proved difficult. Dan has a new job which has him traveling a ton. I’m missing my partner. For 21 years (really 23, but don’t tell my parents) we’ve been together most nights. Now there are a lot of nights where it just me, the kids and the pooches. The house has been lonely. And, it’s not just Dan that’s often out. Anna has a schedule that’s pulling her in a lot of directions that all seem to be far from Clinton Ave. Don’t get me wrong, Jack and the dogs are great company, but the normal Torrey liveliness has been lacking around here.

It doesn’t help that I’m working on “Jack’s 18th Birthday Project”. Unfortunately, this birthday project doesn’t involve planning cakes or presents. Instead, I’m dealing with lawyers and doctors and paperwork. When you’re profoundly disabled, 18 doesn’t arrive with it’s usual benchmarks. There is no graduating from high school (that comes at 21) or registering to vote. Instead,  Dan and I are registering to gain custody of our adult son. We need to hire two lawyers (one for us, one for Jack) to prove to the State that Jack is disabled. Apparently a simple introduction to our handsome, non-verbal, g-tube attached, diaper-wearing boy is not enough proof.

Once the State determines that Jack is in fact too disabled to care for himself, we move along to other 18th birthday highlights. First, we file for Social Security. The idea of collecting money on Jack’s behalf initially felt odd, until we were reminded that Jack will never work, never earn an income, never pay for his own expenses. We live in a country who helps the less fortunate, and Jack is part of that list. After Social Security, we file for Medicaid. Yet another reminder of Jack’s lack of independence.

I was sharing this list with my writer friend (who often acts as my therapist), Jenny, and she (once again) put into words what I was feeling, “I wonder if there is still hope in your heart, a little flicker of hope that someday Jack’s condition might change? Going to court puts a label on Jack’s future and makes it all permanent.”

Yes.

It’s heartbreaking that we find ourselves at this juncture. Eight years ago, I never imagined being here. I still have hope (and it’s more than just a flicker), but it is super hard to keep hope alive when you are looking at this pile of “proof” that says otherwise. So, I’m upset and then I’m over thinking everything in our quiet house. A perfect storm to bring me to a sour mood.

Last night, Anna and I had a conversation that gave me the kick in the ass that I needed. She was being a brat (the way only a teenager can be), but then she said some words that hit my core. I won’t go into the details, but basically she reminded me that our family is stronger than our circumstances and it was time for me to stand up and deal. Anna has always been smarter than I am and she’s right. Life isn’t always easy, but our days are moving along whether we embrace them or curse them. It’s time for this Torrey to start embracing them again.

Dan’s new job is wonderful and we will find a new groove. Anna’s changes are moving her along towards her goals: to rule the world, cure ALD and not miss a single party along the way. And, our dear Jack is getting along just fine. All this ridiculous “18th Birthday Project” goes right by him. He is just waiting for August so that he can get some presents and a huge slice of cake.

My kids are great teachers. I needed them to remind me that our family is WAY stronger than our circumstances and focusing on cake is WAY more important than the other crap.

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Love, Jess

Bad Aunt

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I woke up on Sunday morning under a cozy down comforter. I was in a quiet guestroom feeling quite wonderful (far better than the previous morning – long story – don’t ask). Such a luxury to wake up to no alarm, licking dog or smelly diaper. I just threw on some sweatpants, brushed my teeth and strolled downstairs to enjoy the company of old friends and greasy sausage. It was a great end to a perfect weekend.

The relaxation managed to linger with me the first couple days of this week. It wasn’t until today that I realized that things fall through the cracks when I lose my structure.

Generally I’m pretty organized. Not if you look at the piles on my desk (or behind the sofa in the living room), but if you peek around my house the beds are made, the closets are arranged, and dishes are never left in the sink. I need to credit Maria and Lilly (babysitting/housekeeping/duct tape) for some of the organization, but even without their help our home is fairly structured.

I need this structure. Without it I get lost. I’m someone who get’s easily distracted and if my environment becomes chaotic, I start to fall apart. I can’t concentrate on making dinner if the fridge is overflowing, I can’t get dressed if the bedroom floor is littered with garments and I can’t remember anything without the help of my screens.

Thanks to Apple I’ve managed to create a life that is tightly managed through my imac, iphone and ipad. I start each day by turning off my alarm and opening my icalendar. I rarely miss a thing.

Until Sunday.

Without my trusty screens, I missed my nephew’s, birthday. I didn’t call or send a note. I didn’t even remember to put a shout-out on Facebook. Worst Aunt EVER!

Now, looking at my icalender I’m noticing I also missed an appointment with a plumber – or did he forget – and I forgot to send a writing assignment to my writing group. Is it possible that one weekend away totally messed up my structure?

Love, Jess

HAPPY BIRTHDAY AIDAN! You are an incredible young man and I adore you!!

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