Our Thanksgiving Chime

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The calm before the storm

We have an alarm that sounds every time the front door opens — a two-note chime. It’s usually followed by Finn (bad dog) barking loudly and racing to see who’s arrived and how long he can get away with jumping all over them. Last week, the constant chime exhausted poor Finn so that by Wednesday, all he could manage was to lift his head off the couch for a second to see who’d walked in the door before returning to his nap. 

At the beginning of the week, I too would race to see who’d arrived so that I could give them some love and offer them a snack or something to drink. After a couple of days, I figured everyone knew that I loved them and how to walk to the kitchen.

Anna was home for Thanksgiving (THANKS GOODNESS) and our dear friends – the Mackays – joined us for the holiday week. An extra five people and a dog, adding some noise to our “far too quiet since Anna left for college” house.

We invited another ten people and two dogs for Thanksgiving Day. Nineteen humans, five dogs, two turkeys (one fried), six pies, two stuffings, bourbon sweet potatoes, mashed potatoes, green beans, salad, cranberry sauce, and more wine then our poor recycling cans could manage. Crazy, delicious, fun AND constant door chimes.

We said goodbye after Thanksgiving dinner to ten guests and two dogs, but added two more people on Friday (my best friend from college, Enger, and Katie Mackays roommate, Hanna). I feared we’d not have the energy to entertain them, but we managed. We even threw in a little party on Saturday night to round off the week!

The front door kept on chiming.

Yesterday we woke up and everyone did their part cleaning up the house, stripping beds and starting the laundry. Then, one by one everyone headed out – back to college, work, reality. I usually love the quiet after the storm of a holiday, but everything was so perfect last week, that I really didn’t want it to end.

I’ve been stressing lately about some things, but when it comes down to it, our lives are wonderful. Our friends, our family – they’re really all that matters. I can’t wait for the holidays to continue. We need some time with the Torrey side – and our door needs to go back to chiming!!

Love, Jess

PS Anna comes home in 17 days and the Mackays promised to come for New Years!!!!

 

what is normal?

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The other day I was talking with a friend who was bitching about her teenager not doing their chores. She was going on and on about how hard parenting is, when she suddenly stopped mid-sentence and looked at me, “Sorry Jess. I shouldn’t complain to you about all this normal parenting stuff.”

At first I didn’t understand why I shouldn’t be the appropriate audience for her complaints. We’ve been friends for years and I like to think of myself as a pretty good listener. Then I realized what she meant. She shouldn’t complain to me, because parenting for me isn’t normal.

False.

I’m actually a very normal parent. Not just because I have one typical child, but because for me parenting is just about loving your child and doing whatever they need to keep them comfortable, safe and happy (with limits on the happy part if it includes super late curfews, sports cars or jellybeans for dinner).

Maybe my parenting doesn’t look like everybody else’s, but what the hell is normal anyway?

nor·mal
/ˈnôrməl/
adjective
adjective: normal
1 1. 
conforming to a standard; usual, typical, or expected.”it’s quite normal for puppies to bolt their food”

For me it’s completely standard; usual, typical AND expected to:

— Separate laundry, not by light and dark, but by urine-soaked or not (and I sometimes sneak some urine-soaked clothing in with the non urine-soaked stuff).
— Buy diapers in bulk – both XL Goodnights and XS Depends (one of each and we can sometimes prevent leakage).
— Help my son walk up/down the stairs.
— Bathe my 20-year-old son.
— Help my son get into the car and buckle his seatbelt (and check every few minutes to see if he has unhooked it).
— Check on my son at least two times during the night.
— Hydrate my son through a tube in his stomach.
— Change that tube ever couple of months.
— Change my son’s diaper in a parking lot to avoid changing him in a dirty public restroom with people asking, “Why are you bringing him in the bathroom with you?”
— Medicate my son three times a day.
— Check my son’s mouth periodically to retrieve coins, jewelry, etc.
— Brush my son’s teeth twice a day and lie to his dentist twice a year when I tell him that I also floss Jack’s teeth.
— Infuse butter with marijuana and bake cookies to help my son walk, sleep, and eat.
— Feed my son and, when he holds food in his mouth for too long without swallowing, bringing him to the sink and scoop it out of his mouth.
— Bring pee pads any time we go to a friend’s house so that we don’t ruin furniture.    — Only have friends that can handle having their furniture peed on.
— Sing and dance to 70s music in the bathroom to entertain my son while he sits on the toilet for 30 minute stretches.

Some of you might find this list extreme or sad, while others may have similar lists of normal. Either way, know that even though parenting can be a little more hands-on or complicated or messy, anything can seem normal after a while AND Jack makes all these duties quite manageable (and often rather funny). If you don’t believe me, come spend the day with us. I can promise you that you will see a very normal home. And, I can’t speak for every special mom, but one thing that makes me feel less than special, is when people act like my family isn’t normal.

So, I encourage everyone to bitch all they want to me about their kids not making their beds or not mowing the lawn or sneaking a beer from the basement fridge or procrastinating on they college essays.

Treating me normal makes me feel special.

Love, Jess

National Daughter’s Day

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

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

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

There are some great ones:

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

Those are good ones, but then there are these:

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

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

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

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

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

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

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

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

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

Love, Jess

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

Happy Belated Daughter’s Day!!!

lunch – the recap

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

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

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

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Saying goodbye wasn’t easy.

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

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

Love, Jess

 

a table full of girls

Over the weekend we attended another graduation party celebrating a dear friend of Anna. They’ve known each other since they were tiny, and she has spent so much time with our family, that I consider her to be another daughter. Dan loves her too and Jack would think of her as a sister, if he didn’t have such a massive crush on her.

She’s not alone. Jack has crushes on all of Anna’s girlfriends. And these girls are wonderful to our boy. When they come to our house, the first thing they do when they walk in our door is ask, “Where’s Jack?” and then seek him out to give him a smooch. Some days I find Jack in the middle of the sofa surrounded by beautiful teenage girls watching Gilmore Girls or lose track of him to discover that he’s made his way up to Anna’s room to listen to some girlie gossip.

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Jack and some of the gals a few years ago.

Most of Anna’s circle of friends she’s known since diaper days. They knew Anna when she was a chubby little girl with a crooked smile. They knew our first house over on Jefferson Avenue and they knew Dan and I before we had gray hair. These kids also knew our family before ALD came screeching into our lives. They knew Jack when he was just a year ahead of them in school, loved to ride his bike and was one of the MCs in the school talent show (the only video we have where we can hear him speaking . . . ).

I realized while watching the girls at the party that I’m not just saying goodbye to Anna as she heads out to college — I’m saying goodbye to her buddies too. And, so is Jack.

I know Anna will find a wonderful new cluster of friends at college. She has good taste in friends and seems to always be surrounded by a funny, smart, kind assortment of people. I’m sure she will share a lot about her family with these new friends. About her loud Dad who graduated from Hopkins and loves history, music, lacrosse and the Yankees. She will undoubtedly share stories of her mother who insists on family dinners, needs constant help with wardrobe advice and spelling, and drinks a little more white wine than she should. And, I’m sure Anna’s new friends will hear a ton about her brother – the person who she adores more than anyone on the planet. They will hear what happened when Anna was only six-years-old and how it shaped so much of who she is now and what she longs to do with her life. Her new friends will see pictures of all of us and maybe even meet us over the next few years, but they will never know the whole story. They will never really know Jack the way that Anna’s childhood friends do.

I know that some of the relationships Anna has with her childhood crew will ebb and flow for a while. They are scattering all over the US for the next four years. It will be hard, but I really hope that they all make an effort to meet up again whenever they can. I’m lucky to still be close with a few of my childhood friends and it’s amazing how they know me on a level that newer friends just can’t reach. There’s something magical about childhood friends.

The graduation party was wonderful — good food, some white wine for me, and a lot of familiar faces. As I sat inside to escape the heat, I watched Jack through a large picture window. He was sitting next to Anna at a table full of some of his favorite girls. He had a grin from ear to ear. I know there will be more parties and tables full of these girls, but they will be a further apart now that many of the kids are heading off. I want to make sure that I savor them while I can and make sure JackO gets to enjoy as much girl time as possible before the summer comes to a close.

Love, Jess

Finito

Yesterday I was at a doctor’s office waiting to get my annual mammogram. If you’ve ever had a mammogram, you know that it isn’t any fun. As I waited to be called, I was trying to distract myself with cheesy magazines and social media before starting to send text messages, DanO – how’s your day going? Kim – Wanna head to the beach later this week? Anna – When do you get home from school today?

Before I hit send on the last one, it hit me. Anna wasn’t getting home from school, because she didn’t have school. She’s done. Finito. I’d known it was coming for 18 years, celebrated with her at countless parties over the last two weeks, and sat through a two hour ceremony filled with caps and gowns, playing Pomp and Circumstance BUT it didn’t really sink in until I was sitting in a sterile waiting room with a bunch of strangers, all of us wearing nothing but red and pink striped robes.

Welcome to my world. I was actually relieved when my name was called to go have my boobs smashed flat as pancakes.

Enough of me, my boobs, and my crazy emotions – here are some photos of Anna on her big day!

 

Love, Jess

My mammogram — unlike me — was normal.

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Day +4003 (not a great day)

Day +4004 . . .

4004 days since Jack’s transplant. Almost 11 years. Over half of Jack’s life.

Our family lives our lives marking everything with before or after ALD barged into our world. Don’t read that last sentence and feel sorry for us. Most days after ALD are just fine, and many days after have been wonderful.

We’ve created lives that work – thanks to smiles and our duct tape. We have our Anna’s sweet disposition and busy schedule keeping us on our toes and filling our dinner-time with stories. And, we have Jack’s mood that sets the tone for everything we do. Sometimes I feel like I float between two worlds. Attending an IEP meeting in the morning where we discuss things like “teeth brushing” and “using a fork” as long-term goals and then head off to watch Anna run down a lacrosse field effortlessly to score several goals. Most days I go back and forth seamlessly, enjoying each of my children and their lives.

Yesterday was NOT one of those days.

Yesterday started shitty. I won’t go into too much detail, but just imagine cleaning up a nineteen-year-old and his bed after what I’m assuming was a mexican lunch the day before. I was scrambling to get through that mess, when I noticed that dear Anna had managed to switch the laundry the night before WITHOUT switching anything that did not belong to her. This was followed by a lot of yelling up to her bedroom (those stairs are too steep for me), “This is not a hotel!! You need to do your part around here! You are NOT in college yet young lady!”.

I was already fuming as Jack and I then went through the rest of our morning routine as quickly as possible so that we could head off to the Social Security Administration. It seems that we had been “randomly been selected” to come in for a follow-up interview to determine if Jack still qualifies for Social Security. This was our fifth visit and third time being “randomly selected” in less than two years.

 

Flash forward five hours —— I was crying uncontrollably to the young woman across the plexi-glass, “How many times do I need to tell you guys that my son is disabled? We have countless letters from doctors and teachers. He is not going to get better! He will never have a job. Never! His disease has stolen any hope of a normal life where he can work and live independently and support himself.”

I wasn’t finished, “There might be people in that waiting-room over there that are trying to take advantage of the system. I assure you that Jack is NOT one of them! Wanna look up ALD on Google? Wanna spend a day with Jack and tell me that there’s a chance of him NOT qualifying for Social Security? Why are you wasting your time and tax dollars on cases like ours?” and “No – our address hasn’t changed. No – our phone number hasn’t changed. No – Jack does not have any new pay-stubs to share with you. Why the hell couldn’t we have answered these questions over the phone? WHAT the hell is wrong with you people?!?”

After my rant, she apologized, but all I could do was help Jack off his seat, grab the paperwork (where she’d added her direct number “just in case we get another letter”) and walked out the door without a word.

I drove home yelling at the world and then laughing with Jack who I could see in the rearview mirror making funny faces at me. The wait, the questions – none of that seemed to bother our boy, but his crazy mother he sure found hysterical.

I realized half way home that I’d forgotten that I was teaching an art class at 2:30. It was 2:00 and we hadn’t eaten since breakfast (Social Secuirty rules include: no eating, no drinking, no phone calls, and go to the bathroom at your own risk – you miss your number? too bad). I called my boss and explained that I would be late and I would be bringing a special guest to my class.

I usually love the opportunity to introduce Jack to children, but I was running so late that I was too worried about finishing our project to do much of an introduction. My kindergardeners kept looking up from their Blue Dog inspired paintings to check out Jack and ask things like, “If he can’t speak how do you know what he wants for dinner?” and “What’s with those funny leg things he’s wearing?” and “Why is he trying to eat the craypas?”

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I did my best to answer their questions with a lite, age appropriate spin, but at one point I got so distracted that I rammed my toe against a table. It was like The Powers that Be were having a lot of fun torturing me. I’ve never been happier to see parents arrive for pick-up.

Our last event of the day was Anna’s lacrosse game. Swinging back to a fun event seemed like a great idea, but after ten minutes of watching the Cougars, a storm rolled in and we needed to run (Jack hopped) to the car to drive home in the wicked weather. Jack and I walked into the house drenched.

I went through the motions of dinner, bath, bed, just wanting the day to be over. I was starting to breathe again, even laughing with Dan and Anna about the events of the day, but the crappy day was not quite over.

As I got into bed, I felt a sharp pain. My toenail had fallen off.

Love, Jess

Today is a much better day. No sad looks if you see me at the grocery store. I promise I am back to being cheery mom/wife/friend/teacher/writer. Day 4003 stunk, but most days after ALD are just fine. 4004 days and counting!!

 

 

Get Swabbed

Eleven years ago we were told that Jack had Adrenoleukodystropy and that the only way to stop the progression of this hideous disease was a stem cell transplant (bone marrow transplant). Anna, who was 6-years-old at the time, would have been the best option, but she was not a match. Our doctors were forced to look on the bone marrow registry for a potential donor.

Imagine being told that the only chance of saving your child’s life is if a stranger is willing to make a donation.

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At the time I didn’t know much about stem cell donation. Online research did little to calm my nerves. At any given time, over 7,500 Americans are actively searching the national registry for an unrelated donor and only 2 % of our population is on the registry. And, what are the chances of finding a donor? Caucasian patients – 75%, hispanic patients 45% , asian patients – 40%, african-american patients – 25%, and multi-racial patients are faced with the worst odds. Over 3,000 people die each year because they can’t find a match.

Jack was lucky. Although there were no matches on the bone marrow registry, a stranger had donated their daughter’s cord blood (another option for a stem cell transplant) and Jack received those precious cells which stopped his disease and saved his life.

We’ve helped host many drives in the last eleven years and there have been at least three lives saved by spreading the word and helping people register. We are doing it again this weekend thanks to our friend, Elizabeth Sarkisian, and our local YMCA.

If you would like to learn more about bone marrow donation or would like to add yourself to the registry (and are between the ages of 18-55, not active military, in good general health, and over 105 pounds) please join us on Saturday 12pm-3pm at the YMCA in Maplewood.

Love, Jess

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Please keep in mind we are looking for people to register that are committed to donating if called. Otherwise there is false hope and wasted time for patients. Thank you!!!!!!

the bearded boy . . . man

 

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Jack’s been trying out a new look lately. It was Anna’s idea and, as Jack’s personal shaver, we let her run with it. Jack’s now sporting a goatee. He looks like a man — I no longer have a child-child with special needs, I have an adult-child with special needs.

It’s different and it’s scaring me.

I remember sitting on the beach on Block Island several years ago when I saw a couple walking down the beach hand-in-hand. My first thought was that I was proud of living in a country that people didn’t need to hid their love. These men looked so happy as they were enjoying the sunshine and each other. Then, as they got closer, I noticed that one of the men was clearly helping the other manage the sand and the water. They weren’t lovers, they were friends or brothers and one had special needs.

Before that day, I hadn’t spent much time thinking about what life would be like once Jack was an adult. We’d done all the responsible things to prepare (wills and trusts and guardianship plans), but I hadn’t really thought about what day-to-day life would look like once Jack’s childhood was over. Suddenly I was filled with questions. How/where do you change a diaper inconspicuously? What kinds of programs are available for adults with special needs? What will JackO do without his beloved Banana’s hugs every morning? Will we need to move? Will we need live-in help to help bathe/dress/care for our son?

Like most thoughts that make me uncomfortable, I stored them away in the back of my mind. They’ve been living quietly there, but now when I look at Jack and his hipster beard, the thoughts and questions are flooding to the surface.

The problem is that I don’t know what to expect with this new chapter. I’ve worked really hard for us to be “a normal family with a special child” (I know “normal” isn’t the right word – What is normal? Perhaps a better word would be typical or standard.  I hope you understand what I’m saying). It’s taken ten years, but our family has finally reached a place where our lives (mostly) parallel the lives of our friends and neighbors. Sure, we can’t do everything that we could do before ALD, but with a few adaptations we’ve managed pretty well to keep things in line with our pre-ALD existence. We’ve learned to focus on what Jack CAN do, not his challenges. We’ve found schools and programs that have supported our goals and Jack gets to go to school each day with kids that we’ve come to know and a staff that’s devoted to these special teens. Our family has worked out ways to continue to do things we love. We spend time with family, go on long walks, visit with friends, travel.

We’ve also had Anna and all of her “normal” activities to keep us safely anchored in the normal/typical/standard world. Our lives work. We are happy, well adjusted, very few complaints.

Now Jack and his beard are a constant reminder that change is on the horizon. Our next IEP is focusing on preparing for his transition as he ages out of high school (there is some time, but we need to start the process) and Anna and all her “normal everyday stuff” is leaving for Baltimore before long. I’m not clear as to what our days will look like once these changes happen.

CHANGE is a four letter word.

I’m trying everything — books, breathing, essential oils, therapy. I need to figure out the optimal strategies for making this transition bearable — even positive. I’m making some strides, but I think what I really need to do is to remember that couple on the beach on Block Island. Neither seemed to be focused on anything but each other, the sand and the sunshine. They were acting the way that we do TODAY when we walk through life with our boy . . . our MAN.

We will get there. That’s what we do.

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