we’re home

Earlier this month I called one of my best friends and was hysterical. I’m not sure exactly what I said, but I remember hanging up the phone, walking though a pile of boxes and crawling into my bed. I saw her two days later and she told me that her husband had heard me melting through the receiver and said, “I’ve only heard Jess like that once before.”

Thirteen years ago we had just moved into a hospital, facing the biggest fight of our lives. I’m not saying that this move compares to that hell, but the overwhelming exhaustion is comparable. The physical work took it’s toll on this middle-age, non-athlete and the emotional component I found far more brutal than I’d prepared for. Sorting through memories and packing up boxes was just the beginning.

We chose to move because it was time – because Clinton Avenue didn’t make sense for our family anymore. Four stories of living was just too much for our boy. It was too much for me. Too many stairs, too much space between the master bedroom and Jack’s, too many walls to hide Jack from our vision. Our morning routine would have me up and down the steps countless times and during the bad weather it would often take me ten minutes to get Jack from our front door, down the stairs, through the path and onto the school bus. We knew we needed a change, but we couldn’t help but feel that ALD was stealing another thing from our family — our dream home.

When we started looking, we didn’t know if we’d find something that would fit our family AND compete with our beautiful, memory-filled Clinton Avenue. Even after we found this house that checked all our boxes, I would wake up during the night with my heart racing, thinking that we were making a huge mistake. Lack of sleep, physical exhaustion, packing up way too much stuff tucked away in every nook and cranny of a turn-of-the-century home — before the move actually happened, I was a basket case.

Then came the move. It ended up taking three days and once the moving truck left our driveway I went to take a shower and realized that it was my first shower in the new home (no, I hadn’t snuck one in anywhere else). The next morning one of the movers stopped by to follow-up. When he saw me clean with some mascara on, he said, “Wow. I didn’t recognize you.”

That was three weeks ago and finally Speir Drive is starting to feel like home. We’re getting used to the new routine and appreciating that it is easier. Right now I’m sitting on the sofa in the living room, with light pouring in from the skylights. Jack’s in his room just steps away watching That 70s Show (his new fav). The master bedroom is just beyond Jack’s room so when Dan and I wake up in the night, we can glance into his room without getting out of bed. The living space is all open, everything we need is on this level and when the bus arrives in the morning, we just open the door and there it is. No steps, no need for even an umbrella.

Banana has a beautiful room upstairs, where there are also a couple of guest rooms, and the house has a beautiful yard with a pool. It’s lovely – perfect for our family and perfect for entertaining. Dan doesn’t like it, but I’ve been describing the house as a mullet – all business in the front and a party in the back;)

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We loved Clinton. It was our dream house that we managed to make perfect year by year. It was filled with memories and I credit it’s walls for holding us together through some of the most difficult times of our lives. It was hard to say good-bye,  but I’m starting to feel like Speir Drive is going to feel like our dream home too before long. The boxes are almost empty and we’re heating up that pool so that we can start diving into making some new memories.

Happy Memorial Day!

Love, Jess

The Three P’s

Everyone knows that moving is a stressful experience. It’s the three P’s — Purging, Packing, and Paperwork. Is there anyone who really enjoys any of those activities, and all three at once is enough to send you over the edge!! … Continue reading

Happy BiRtHdAy!

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This handsome man is celebrating a birthday today. He’s not just handsome – he’s brilliant and creative and hysterical and a great father AND the sweetest Nonno on the planet. 

If you knew us during my high school/college years, you might be surprised by how close we are now. It took hard work (on both sides), but he and I are as close as can be – we share our highs and our lows AND always manage to find the humor in any situation.

I love you Nonno and am so glad we found our way!

Love, Tatess

Lesson of the day — Hard work pays off!!

Jack’s Other Mothers

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Dan and I had a birthday celebration last night (Happy Birthday Bid) and couldn’t attend CPNJ Horizon High School’s Annual Tricky Tray. At first, we thought that Jack would need to skip the fun event, but Jack’s other moms didn’t want our boy to miss out. Jack got to spend last night eating, drinking (I’m sure it was juice) and winning baskets, thanks to his three other mothers — Maria, Lilly and Monica.

Knowing that Jack would be surrounded by his other mothers, made me happy. I knew that Jack would have a wonderful night and be safe and well cared for.

These three women are the reason that THIS mother is sane. I love you ladies!!!!!

Thank you.

Love, Jess

Jack also has some other fathers. And, again – he sure seems to like that juice;)

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Dear CPNJ Horizon High School,

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We had Jack’s annual IEP meeting last week.

At one point during the meeting, one of Jack’s therapist brought me a box of tissues. I hadn’t known that I was crying until I saw the box placed next to me. My first thought was, I wonder if other parents lose their mind during these meetings?, but reassured myself that most parents would find such meetings emotional. It’s not just hearing goals for your twenty-year-old child that include “increasing independence with self-care skills” and “transitioning from sit to stand independently”. It’s the fact that we are nearing the end of these meetings – nearing the end of our time at CPNJ Horizon High School. Jack’s not graduating until next Spring, but our next placement is unknown and not knowing where we are headed is scary. We love the school so much and want to savor every last moment Jack get’s to be a Horizon Husky.

I’ve written love letters to CPNJ Horizon High School before – Here I go again.

Dear CPNJ Horizon High School,

Thank you. Not just for being Jack’s second home for the last six years, but for being his other family for the last six years. Thank you for being a place where we know he’s safe and loved and being taught skills to make his life more comfortable and independent. Thank you for finding any excuse for a party, so that Jack can dance and flirt. Thank you for always welcoming our entire family with open arms. 

Thank you for having a staff that has taken the time to really know Jack and what makes him tick AND for always looking for new ways to tackle his challenges. Thank you for having a staff that reaches out to us to tell us what magical things Jack has done during the day. Thank you for having a staff that has promised, that even after Jack’s graduates, they will always be part of his team.

The folks at CPNJ Horizon High School (the kids, the teachers, the aides, the therapists, the nurses, the administration) don’t just feel like family – they are family!

Love, Jess

Please help us give back to Jack’s home away from home.

CLICK HERE!!!!

A Change of Address

Shhhhhh. Don’t tell my parents, but Dan and I lived together before we got married (even before we got engaged). 

We didn’t mean to live in sin. Dan was in-between apartments and my roommate was understanding. We lived in a large rent controlled apartment on the Upper East Side of Manhattan with two bedrooms, 2 bathrooms and a little room off the kitchen that we started calling, “Dan’s room”. It went on for months, but once Dan and I got engaged we decided it was time to make it official. We moved to Brooklyn before Brooklyn was more expensive than Manhattan. Before it was littered with kombucha bars and hipsters. Before it was too cool for us. We found a studio apartment in the parlor of an old brownstone. 132 Joralemon Street was one big room with high ceilings and a steep staircase that lead to a platform where we slept – except in the summer when it was unbearable and we had to move to the couches in the living-room.

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Our next apartment was more practical. 54 Orange Street, just north of Joralemon, was built to be an apartment building. It had a real bedroom and even had an elevator to get us to our second floor apartment. We lived there for two years until we found out that we were expecting. 

We were tempted to try being young parents in the City, but as the months went by, we became eager to find a house with a yard. That’s when we found Maplewood and the rest is history. First our beautiful 100 Jefferson Avenue and then it’s big sister, 26 Clinton Avenue.

We’ve been living together for 25 years and we’ve had our share of hard times, but each of our homes have always managed to hold us up.

Over the last couple of years, it’s become more and more apparent that this house no longer makes sense for our family. Many of our friends have come to the same conclusion about their family homes, but for different reasons. No longer in the “raising kids stage”, they’re downsizing or moving to get more land or their dream beach houses. Our nest will never be empty (in fact, we may need live-in support as our strength shrinks and Jack’s muscles grow). And, our nest needs to be accommodating for complicated living.               

It’s not that we’re in a situation where Jack is unsafe at 26 Clinton Avenue, it’s that we’re wanting to be proactive and want to find something easier — not just for Jack, but for us. Jack can walk up stairs, but needs assistance in both directions and sometimes just getting him out of the house and into the car is a challenge. 

Once we decided we needed a new house, we told our friend/hot-shot realtor our list of requirements:

*  One level for jack (the house could have more, but we wanted JackO to be able to access every bit of his home easily)

* Easy access to the home – loads of beautiful houses in the area fit the bill inside, but would be a challenge to get to from the driveway

* An attached garage

* Something we could move in without too much work – we don’t mind a project, but didn’t want to need to redo every inch of a new home

* Something cool to distract us from why we are leaving our beautiful home – either a quick walk to town or on the reservation or a stunning view or a pool 

Our realtor/friend was sweet, and shook her head politely, but I’m pretty sure that she thought she had just landed the most difficult clients of her career. Luckily, she’s determined and did her magic. She spread the word and our amazing community came together and found us our next forever home.

I swear that it was made for us. The opposite of our 109 year-old center-hall colonial, but in a good way. It’s 50 years old and open and easy. Two bedrooms downstairs and plenty of room for Anna and guests upstairs, completely remodeled, an attached garage, a driveway that goes right up to the front door  — AND it has a pool. I didn’t know I was a pool person until I looked at the back yard where I could almost see it filled with friends and family.

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Realizing we needed a different home initially made me angry. WHEN IS ALD GOING TO BE DONE STEALING THINGS FROM OUR FAMILY?!?! Now that we’ve found this house, I am feeling more excited about our next chapter. ALD isn’t in charge of this decision – WE ARE and it’s going to be great.

From Manhattan to Brooklyn to Maplewood to South Orange. May 1 is the big day – time to start packing!

Love, Jess

on my last nerve

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When the kids were little, I had a friend who always made me smile. She had a way of making even the toughest days seem manageable. She knew how to poke fun of herself, her mood and life as a young mom. “He/she/it is on my last nerve” was her favorite expression. As a young mom myself, I could relate to being over-worked and under-rested. I could relate to feeling like my nerves were exposed, ready to react to any little thing. 

“You’re on my last nerve” was all her kids or husband needed to hear to stop what they were doing and leave the room. When I would hear her say those words over the phone as we were bitching about life, I knew she was frustrated, but that she had a smile on her face.

I would like to apologize to anyone who has gotten in my way or said the wrong thing to me the last couple of weeks. I’m tired and stressed — I’m working on my last nerve. I know that once we find our next home, I’ll be fine. Our family is up for anything — we just need to know if we are buying or renting or pitching a tent somewhere. I need to stop focusing on saying good-bye to this beautiful house and start thinking about saying hello to our next adventure. Not knowing is killing me.

Good news is that we have found a wonderful option that really appears to have been made for our family. Nothing is finalized yet, but we’re feeling optimistic. Still, that last nerve is exposed until the paperwork is complete.

Last night as I was lying in bed, too tired to sleep (is that a thing or just something that my body has invented?), I swear I could hear my friend speaking in my ear. She passed away many years ago. Bravely fought cancer with more grace than most people fight a cold. She died before Jack got sick, but her memory managed to help to me during the darkest days and once again she’s helping me regain focus.

Stay strong Jess. You can deal with anything. You are just working on your last nerve.

Thank you girl.

Fingers crossed that part two of our move project will be over soon!! Then the real fun begins – packing. Crap!!!!!

Love, Jess

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I Wanna Be Like Jack

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The daughter of one of my oldest/bestest friends reached out to me last week. She had an assignment to write a paper on a rare disease and chose ALD. Her thoughtful questions had me sharing details about Jack’s life. Questions about his diagnosis, experiences through transplant, returning to school and about what Jack’s life looks like now.

I always try to be honest when answering such questions. The idea that a high school student is spending the time to educate herself, and in turn, educated her teacher and her classmates, is valuable and I want to make sure the information I provide is accurate. And, after eleven years, I’ve shared the details enough that I’m usually able to write the words without focusing too much on the meaning behind them.

This week has been different. As I was writing, the words keep hitting me — but not in the way you might expect. As I was describing what Jack’s life looks like now, I kept thinking, I wanna be like Jack.

Let me explain.

I’m feeling rather overwhelmed. Putting our house on the market this month seemed like excellent timing. Our three story home is filled with rooms that we don’t use and Jack’s life would be far easier with fewer steps. Anna seemed excited about returning home from second semester to a new house, and I kept thinking it would be a wonderful distraction from my blues about Anna being away at school.

So we hired our dear friend/hotshot realtor, cleaned up our house and put it on the market. Within a week of listing, we were under contract (we were fortunate to have a lot of interest and ultimately sold to a beautiful young family from Brooklyn). So easy, but I guess I wasn’t really prepared for Part One of our moving project to be completed so quickly. I hadn’t thought too much about all the next steps – the inspections and lawyers and finding our next home. 

The other day, I took a break from digging up old paperwork and searching house listings to answer some questions about Jack’s life for my friend’s daughter. I looked over at Jack who was sitting on his favorite couch, his legs up on the ottoman and his dog by his side. He had a grin ear to ear. He doesn’t worry about home inspections or details like where we are moving in May. He just lives in the moment and knows that his team has everything covered. 

I could have felt sad as I wrote the long list of things that Jack can’t do, but all I could think about was how relaxed and happy he looked. Sometimes I wish I had a team that I could trust would take care of everything.

Sometimes, I just wanna be like Jack.

Love, Jess

Before you pick up the phone to send me a text trying to cheer me up — I’M OKAY — just a little stressed. I know that within the next few weeks, we will figure out our next move. It’s time to pass along our beautiful house to another family that will fill it with love and memories. And, it’s time for our family to start a new chapter. It’s going to be amazing  — and easy and flat. 

 

THIS is ALD #25 — Grady

Ten days ago I got a text from a dear friend from MA, “Watching the news on NBC – it’s about newborn screening for ALD.”

I stopped what I was doing, went to the computer and Googled — NBC, MA, ALD and this popped up.

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I thought, What a great ALD story! I should reach out to this mom. Within a day, we found each other — ALD is a small world (and thanks to social media, it’s getting smaller every day). We exchanged notes on facebook, emailed back and forth, and then spoke on the phone. For me, it’s like talking to an old friend when I find another ALD mom. I asked her tons of questions and let her share and vent. Of corse, I also asked her to please let me share her family’s story on THIS is ALD.

THIS is ALD #25 — Grady

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I thought he had too much wax in his ears. That’s how this started, wax. My boys always have gross waxy ears, no matter how much I clean them. Pretty gross right? I thought Grady couldn’t hear me well because of waxy ears. 

So after about two weeks, I decided to bring Grady to his pediatrician. She checked and they were clear. We proceeded to do a hearing test. He passed. Gut punch #1. 

His pediatrician suggested we follow up with ENT. I asked if it could be neurological. She didn’t think so, everything else was perfect. About an hour after we got home, she called me saying, “You are not an alarmist with the kids, let’s see an ENT today”. 

She got us in and he passed most of the exams. Gut punch #2. I knew something bad was coming. My husband and I took Grady to Boston Children’s Hospital right from the ENT. I felt like we had to push to really get them to listen. Neuro came and did a consult. Grady’s so strong. A crazy NATURAL athlete. How could it be his brain? Physically he checked out perfect. Then, the doctor asked, “What is 3×4…” Grady said, “Football”. Now we were crying. Something was really wrong. 

They came back and said they felt he was fine to go home, and out came Mama Bear. We told them we did not feel comfortable bringing him home. Twice. We told them SOMETHING is wrong with our son. I begged to scan him then. Sobbing. They felt a scan could wait and would book it in the weeks to come. 

So we went home. Sick to our stomachs. 

The next morning I woke up, called the pediatrician, and told them that I was bringing Grady back to Children’s and I wasn’t leaving until they scanned him. Long story short, a few frustrating hours later, they did. Gut punch #3…….and the death of the “old me”

They told us that they believe that Grady had ALD. What the hell is ALD?!? I Googled it, alone in the “quiet room” after an ER doctor told me not to. Google was obviously lying because there was no WAY my football and basketball obsessed boy was going to die in 1-5 years — slowly deteriorating to vegetive state, to death. No way. Someone was was wrong, and they wanted me to call my husband and tell him this?? Part of me died then. 

We lived 5 days — well not lived, we walked around somehow and tried to take care of the kids, while in the back of our minds we were thinking about losing our son. Then, we met Dr Eichler and Catie Becker. Two angles who told us that we would not lose Grady. With a Loes score of 10, they felt that perhaps Grady might lose some hearing, some vision, he might have a change in his gait. We could handle anything as long as he was with us. With newfound strength we got ready to fight. 

We met angel #3 a short time after — Dr Christine Duncan at Dana Farber. Grady ended up with an amazing 10/10 unrelated bone marrow match right away. Grady’s brother Colin tested negative for ALD and everything went just so fast from there. 

Admitted to the hospital on 9/11/18 and met what came to be some new “family” members (his loving nurses) and chemo started the next day. Grady was a rockstar. Me, not so much – I dubbed myself “the neurotic mom in room 613” . He was transplanted 9/20/18.  Celebrated his 8th birthday on 10/2/18 and also started engrafting that same day. We were home 10/11/18.

The fear really set in when we got past transplant, but there was still this ALD we had to process. Every little thing Grady did I was so scared…is this progression?  He blinked 3 times more than he did 5 min ago….is this progression? Every single day that kid was outside throwing the football. Making one handed catches. Working out to get his strength back. I still panicked over everything, even though I was told by his NP, “If he is out there making one handed catches, you have no right to worry about progression “. 

I still did.

We were also trying to come to terms with some signs of ALD that presented post transplant, like an Auditory Processing Disorder. Grady can hear us, but he stuggles to understand language. Luckily – that’s his ONLY deficit. He is a miracle boy!

Other than not really looking like Grady from all the prednisone and stupid hairy cyclosporine, he is still the same Grady, but he is angry.  So angry, and rightfully so. Some days are better than others, but he is here and doing amazing. 

Grady’s follow up MRI was also a miracle. Not only was there no progression, but his lesion has also gotten smaller. They are not sure why, and have only seen this once before, but smaller. Miracle. We also found out that I am not a carrier. Grady spontaneously mutated. More crazy to add to our story. 

We still have a long road ahead of us. We have had a couple readmissions that seem to come with the BMT world, but he is doing amazing. There is hope – so much hope.  

This disease is awful, but if he has to have it, I’m glad to have found the people I have in this ALD community. The Smiths might be one small family, but we are joining the cause and going to help do big things!!!

#NBS #ALDawareness #toughtimesdontladttoughpeopledo #yougottabelieve 

💙

— Jillian

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Jillian is amazing. Without her determination to get answers, it would have taken weeks or months to get the proper diagnosis. If you have followed any THIS is ALD stories, you know how important an early diagnosis can be. I’m not actually sure of when (or if) Jillian sleeps, but Grady is one lucky kid to have her as a mom and the ALD community is lucky to have her on board. She’s only five months into this journey and already she’s determined to dive into sharing her family’s ALD story and raising awareness for our (not so rare — about 1/15,000) rare disease. Since she sent me this story, her family was on the news again. 

With the Super Bowl just days away, all you Patriots fans will love that Julian Edelman is a fan of Gradys — just like the rest of us!!

CLICK HERE

Jillian — Thank you for sharing your family’s story and we look forward to watching Grady’s progress as he moves on with his beautiful, sports-filled life.

Love, Jess

 

 

Coming Soon!

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Last week, I watched through our living room window as a man fought through the rain to dig a hole in our front lawn and place a sign. I knew it was coming, but it still took me by surprise. 

Coming Soon!

We moved into our home thirteen years ago and called it our “forever house”. We talked about how we would shine her up to match our dreams and enjoy our time there until we were ready for our golden years in Block Island or Florida. The kids were 7 and 5, and we imagined how they would learn to ride their bikes on Clinton Avenue and run through all the backyards with the neighborhood kids. Jack and Anna would go from elementary school, to middle school, to high school and finally off to college. It seemed so distant, but we pictured when our nest would become empty and we could periodically close up our home as we would travel the world, knowing that we’d always return to our beautiful center-hall colonial.

Thirteen years ago we didn’t know that within a year of moving in, Jack would start showing symptoms of a disease that would one day become a huge part of our family. We didn’t know that our future would be less about adventurous travel and more about doctoring and therapies. We didn’t know that one day, three stories of house would be more than our son would be able to manage.

So, we are selling our home before “forever”. We are selling because we are not living the life that we’d imagined thirteen years ago. We are not alone in selling our home. Many of our close friends are doing the same – escaping Essex County taxes or moving back to urban living or buying their dream homes in the country or on the beach. We, on the other hand, are looking to stay in the area, eager to find an easier home. One that is more Jack friendly – fewer stairs, open floor-plan. A house where JackO can roam free safely.

It’s not what we planned thirteen years ago and it’s a lot of work prepping to sell. There have been moments of panic/anxiety (and plenty of tears), but mostly we’re excited about this change. Our house is beautiful, but there are rooms we never use, but still heat and cool. There’s a lovely yard that is only used by our doggies. And, most of all we feel that the house is ready for her next family. It’s time to pass her on. 

Still . . .

Every time I look out the window and see that sign, I feel my stomach tighten and I think of letting go of our “forever house”. It goes on the market officially next Wednesday and then there will be a flurry of open houses. People coming through to see if it matches their dreams the way it did ours thirteen years ago. Fingers crossed that we sell quickly. I really don’t want to play the “make all the beds, vacuum the dog hair, and hide the diapers” game for too long. And, once we sell our beautiful house, we can find our next “forever home” where we will stay forever … or at least a few years.

Our realtor/friend asked us to write a note to perspective buyers. Let me know what you think.

Thirteen years ago we told our realtor that we wanted to find the “big sister” of our center hall colonial on Jefferson Avenue. Something a little grander, a little roomier. We fell in love with this house before walking in the front door. We’d lived in Maplewood for seven years and Clinton Avenue was one of our favorite streets. It’s quiet, but close enough to town that we’d never need to drive to the village or the train. It’s a street where our children could roam and ride their bikes down the hill without any risks except bumping into a friend. And, the front door, wide and stately, told us that this house was going to be the perfect fit for our family.

We’ve been here now for thirteen years and it’s time for our next adventure, but it’s going to be hard to say good-bye to 26 Clinton Avenue. She’s been good to us. She’s hosted family holidays so large that we’ve added one table after another – from the dining room, through the center hallway into the living room. She’s hosted many, many parties where we’ve used every pot on the pot rack and guests refused to leave the kitchen. And, I trust that neighbors will share the our deck and lower patio have hosted many an event that lasted way too late into the night (it’s a wonderful, understanding crew on Clinton Avenue).

We’ve raised our kids and added two dogs to the mix while we’ve lived at 26 Clinton Avenue, and the memories we are taking with us are plentiful. At 109-years-old, this house has a history and has taken care of many families. Our hope is that the next crew that calls her home will love her as much as we have. 

Love, The Torreys

Cross your fingers, light some candles, and send some good vibes!!

Love, Jess