the last FIRST day

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Not a traditional FIRST DAY photo, but it’s pure Jack

Today was Jack’s last FIRST DAY of school. In June he’ll be graduating CPNJ Horizon High School and starting life as an adult. An adult who is funny and sweet and handsome AND and adult with special needs. Twelve years in, and we’re finally comfortable with having a child with special needs, but still — we’re bracing ourselves as we approach this new chapter.

I know we will figure this out – that’s what we do – but as Jack got on the bus this morning, I couldn’t help but get struck with that feeling that we’re just ten months away from a new unknown. Trying to distract myself from the panic, I sat on the black iron bench that was once my grandmothers and looked at the last FIRST DAY photos of JackO. What a life this kid has led.

Not able to shake the feeling all day, I dug through our not-yet-unpacked boxes in the basement for hours until I found it. Jack’s first FIRST DAY picture — Morrow Memorial Preschool. Dan had arrived at the church’s Baker Street entrance at midnight on a cold, early spring night, wanting to be sure that Jack’s name would be at the top of the list (in fact, he was the 7th or 8th, but he made it in). It was the school that all our neighbors had promised was the best and we knew our boy deserved the best. When we walked Jack into the doors of the preschool the first day of class*, Jack was a little nervous, but he was so proud. 

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I know today as Jack walked through the doors of his beloved high school he wasn’t nervous one bit. Jack rules that school — his magical smile making up for his lack of words. I’m so proud of our boy, who’s life has changed in more ways that we could have ever imagined 18 years ago. I just want all of his first days to be wonderful.

We have ten months to figure out the best plan for our boy. We will make it happen — even if it means we need to camp out for a week to make sure his is top of the list.

Love, Jack’s mom

* Jack’s first day of school was September 11th and we will always be grateful that Dan took the later train into work that day. ALD aside, we are a very lucky family.

good news, wrapped in a horrible package

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We received Jack’s Tier Assignment from Division of Developmental Disabilities (DDD) and it’s good news. Really shitty, horrible, depressing good news. Jack qualifies for the maximum amount of support as he enters his adult life.

I was initially relieved when I read the letter. Knowing that Jack qualified for enough support to adequately pay for an adult program AND therapy was a relief, but within a minute the reality of what the letter meant set in and I dropped the letter as if it were on fire — it was more concrete evidence that Jack is very disabled and that the State of NJ doesn’t see much opportunity for improvement.

I’ve been living for a few days with the letter sitting on the pile of “important” papers on my kitchen counter. Sometimes I glance at it and am grateful that we are headed in the right direction towards our next chapter, and sometimes just seeing it brings me to my knees. How the hell did we end up here?

I have to remind myself that it’s good news. It is good news, wrapped in a horrible package. 

Jack is the most incredible human I know. He’s not just happy, but for a silent kid, he’s more connected than most people. He’s able to see and hear and walk and enjoy his life. BUT, he is fully dependent with even the easiest of tasks and has significant medical and behavioral issues. Jack’s life is very complicated — he does need as much support as possible and we are lucky that we did not need to fight the State to make them understand. 

It’s good news.

Now we are faced with figuring out what Jack’s adult life is going to look like. We have put in our request for a support coordinator to help us navigate this transition (fingers crossed we get our top choice). We don’t know too much about our options but want to make sure Jack remains living at home while getting adequate physical, occupational and speech therapy and attending a program that’s as energetic and fun as CPNJ Horizon High School. Where is that program? Not sure, but we will find it. And, if it doesn’t exist, we will build it.

It’s good news.

Love, Jess

PS If you missed the lead up to getting our Tier Assignment – CLICK HERE.

Roll the Footage!

“Good morning”, Jack said with a big smile on his face as I walked into his room at 7:00 am. If you don’t know Jack, you might not have heard the words, but Jack speaks pretty loudly if you know … Continue reading

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

THIS is LEUKODYSTROPHY #24 — Ethan

For most people, Facebook is all about travel pictures, political comments and dog videos, but for me it’s largely about connecting with the ALD and other Leukodystrophy communities. Last weekend, I stumbled on a post from a mom that I wanted to share. Much of the focus on our diseases lately has about getting an early diagnosis and the newest treatment options. It’s important to remember that some of our families have been living with ALD and similar diseases for a long time. It’s not as thrilling as the new stories, but our boys are beautiful and important too.

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THIS is ALD (ish) #24 — Ethan

9 years ago, Ethan’s father and I were sitting in a neurologists office listening to a doctor tell us, “Your son was misdiagnosed with Cerebral Palsy. He actually has an unknown leukodystrophy – a very rare disease that is progressive”. 

I’ll never forget that day. The doctor had no bedside manner and told me not to Google the disease because awful things will happen to Ethan and then he will pass away. I left that appointment feeling helpless and hopeless. The doctor’s words played over and over again through my head as we drove home and I cried on the highway. I remember looking back at Ethan in his car seat all smiles and happy, not knowing he was very sick. 

For over a year, I let that doctor rule my thoughts “Ethan is dying  — the doctor basically said there is nothing we can do, “Don’t Google the disease”. I would have constant nightmares about Ethan’s funeral and wake up in a panic. I would check on him while he was sleeping to see if he was still breathing. 

A couple years later, we finally met Dr. Eichler (the director of the Leukodystrophy service at MassGeneral Hospital for Children) who has given us nothing but hope and a positive attitude. He genuinely loves Ethan and has never once said, “Awful things will happen to him.” Or, “He is going to die.”

What Dr. Eichler does tell us is, “Look how far he’s come” and, ”Yes this disease is progressive, but Ethan is a fighter”. Ever since meeting Dr. Eichler my outlook on Ethan’s disease has changed. When a doctor actually looks you in the eye, answers your questions, hugs your child, laughs with your child, checks in with you via text, email and phone calls, then you know you have the right doctor. 

Shame on the doctor who gave Ethan a death sentence and no hope! Guess what? I Googled his disease and ended up connecting with amazing families all over the world who share the same life we do. Connecting with other families has been a wonderful experience. Seeing all their pictures and how loved these boys are by their family and friends like Ethan, makes me so happy. And now Dr. Eichler introduced us to another amazing doctor, Dr. Rodan, who has helped give Ethan a better quality of life! I’m so happy these two doctors never gave up on Ethan and I’m so proud of my boy who continues to fight and has an incredible will to live. ❤️

A couple of days later, this mom wrote something else on Facebook that took my breath away . . .

Ethan ten years ago. Before wheelchairs, seizures, helmets, daily medications, and intrusive medical procedures. But some things haven’t changed: Ethan’s giggle, his funny jokes, his amazing personality, his hugs and kisses, his “I love you momma”, his ability to make any task fun, his will to defy the odds, his outlook on life, his ability to live in the moment. All the medical issues might be happening to Ethan, but he doesn’t let them define him or change him. Ethan is still Ethan, he’s my son, he’s my everything. Love you Super Mario boy!

— Jennifer

Thank you Jennifer for allowing me to share a little of Ethan’s story. Ethan is almost 13 now – such a handsome (almost) teenager!

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the future is bright(er)

A few times a year I have the opportunity to spend a couple of days in a room full of people who know what the letters ALD stand for and what it means to live with them in your home. This week I attended the Aidan Jack Seeger Foundation – ALD Standards of Care meeting. It was exciting to hear about the continued progress being made with newborn screening and the latest treatment options for this next generation of ALD boys. There’s not anything that will benefit Jack, but I hope in a small way, our boy (and his story) is helping the progress move forward.

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I know it’s not for everyone to sign up for juggling their real-life responsibilities to attend conferences highlighting the worst part of their life, but I never regret attending these meetings. I’d be lying if I said I understand all the medical talk, but the connections I’ve made over the years have been invaluable. I still get a little star-struck when I meet people that I’ve been following for years, but I’m always pleasantly surprised by how welcoming everyone is. These conferences are filled with doctors, researchers, and ALD parents who have become hard-core ALD advocates (trust me – I’ve done nothing compared to these folks). Everyone is always willing to answer questions and share their experiences. And, now there’s a new generation of ALD families recently diagnosed through newborn screening – they are the strongest people I’ve ever met. I’m not sure I would have been ready to dive in 12 years ago. 12 years ago ALD was a different disease.

12 years ago, when we first heard the word Adrenoleukodystrophy, a diagnosis usually meant that your son was already symptomatic – often too far along to treat. Even when you were lucky enough to find doctors willing to move forward with treatment, the outcomes (if successful) often lead to a new life, full of challenges. And, when you looked for other families for support or guidance, our community was hard to find. It was pre-Facebook and all that Goggle could tell us was horrific statistics and old information. Today, the ALD community is strong and the future is bright(er) and I want our family to be part of the future. I’ll keep attending any ALD conference I can get to, put on my fancy name tag, and enjoy some time with our ALD family.

For more information about ALD, please check out the Aidan Jack Seeger Foundation and ALD Connect.

Love, Jess

hApPy NeW yEaR!!!!!

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I find the whole New Year’s Eve/New Year’s Day thing ridiculous. Why on earth do we put so much pressure on one night to be awesomely fabulous and one day to represent “new beginnings” that are going to change our lives forever? Has anyone ever really had the best night of their lives on December 31st OR ever made a change on January 1st that lasted more than a month (or week, or day)?

This year I promised myself to give up New Year’s pressure – telling myself that it’s just another date on the calendar. Unfortunately, that promise lasted less time then any New Year’s Resolution I’ve ever made. Starting weeks ago, people start asking about our plans for the evening. And, suddenly every email I received was either from a local gym or Weight Watchers asking if I was ready to make another attempt to lose that 10 pounds.

I could have let it all wash passed me, but I couldn’t help myself. I signed up for a 10 class package at Baker Street Yoga, rejoined Weight Watchers (now called WW), started Googling “Dry January”, and found myself saying to anyone who asked about our New Year’s Eve plans, “We don’t really have any plans. You guys should come over.”

I’m sitting with JackO as I write this, telling him about how his crazy mom is wondering who exactly is coming over later AND how many WW points are in a Moscow Mule. He’s laughing at me. Jack doesn’t worry about dates on the calendar. He’s just happy he is going to have some visitors later today and hoping that they bring him treats full of tons of WW points.

I’m adding to my New Year’s Resolutions – I wanna live my life more like Jack.

Wishing everyone a Happy LIVE LIKE JACK New Year!

Love, Jess

PS If you live locally – please feel free to stop by. Apparently we’re having a party;)

Christmas, Facebook and (I’m guessing) a whole lot of friend requests

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Jack’s incredible one-on-one at school, Monica (also knowns as Jack’s School Mom), sent me a note this week — an informal Christmas list from Jack. I was eager to see what he’d come up with. Our silent boy can be hard to shop for. Top of the list was that he wanted his own Facebook account. I can’t believe I’d never thought of that myself. My 20-year-old son shouldn’t share a Facebook page with his middle-age mama. So we sat down today and set up his account. I encourage you to friend him and see what he comes up with. I will help him, but promise that it will be all Jack — all the time. For a quiet kid, he has a lot to share!

Merry Christmas JackO!

Love, Mom

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(another) man down

Generally, I’m a really good caregiver. I’m not patting myself on the back – I’m the first to admit that I’m not great at a whole lot of things, but if you ever need someone to hang with you while you’re waiting in doctor’s offices or recovering from surgery or binge watching mindless television with your feet up, I’m your gal. 

I don’t mind dressing changes, I’m good with organizing medication and I know my way around the kitchen. I’m also not scared of those awkward, messy situations that can come up. I’ve had piles of experience with such things.

 That said, I’m a little tired right now and likely not winning any awards for Caregiver of the Year.

Dan had shoulder surgery last week. Poor guy has tried everything from physical therapy to chiropractors to some guy who I’ve only heard called The Witch Doctor who filled Dan’s arm full of electrical stimulation. Nothing worked, so Dan finally gave in and scheduled surgery.

Nothing huge, but I was a little nervous about what to expect. It was Dan’s first surgery – ever (impressive for a person 51 years old) and I wasn’t sure how he’d be as a patient and how PATIENT I would be with a new patient to care for. Dan, always wanting to limit my stress, often down-plays things. Leading up to the surgery, he’d refer to the recovery as “a day or two”. Even as we drove to the appointment last Thursday, he was sharing that he would be starting PT within a few days was looking forward to a party we were invited to on Saturday night.

I suspected that Dan was being a little overly optimistic, and when I walked into the recovery room my suspicions were confirmed. My strong, handsome husband looked like he’d been in a fight. When I set him up on the couch when we got home I started to really appreciate that he wouldn’t be able to do much for a while.

You never really appreciate how much someone does, until they can’t.

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Caring for Jack requires a lot, but after 11+ years, days go by without much thought about the details. I’m the primary caregiver during the week, but nights and weekends Dan and I split the responsibilities. Without any planning, we take turns brushing and bathing and feeding our boy. Not that there is never confusion over whether or not Jack got his afternoon meds and you might hear us bribing each other to take a turn feeding Jack when we’re out at a restaurant – but mostly things run pretty smoothly.

I’m used to taking 100 percent of the responsibilities when Dan is traveling, but this has been the first time that Dan is here and not able to help. He’s down an arm and caring for Jack requires two. So does cooking, walking the dogs, doing the dishes and the laundry, and driving. He’s making a great recovery, but I don’t think Jack duty (or Jack doody) is in Dan’s future any time soon. Jack is strong and I’m not sure he can appreciate how careful he needs to be with his Dad. For now, I’m in charge of all meals, bedtimes, showers, medications, errands, and poop.

It’s no ones fault and it isn’t the end of the world, but last night as I was falling asleep, I wondered if there was any way that I could plan a little surgery for myself sometime soon.

Love, Jess

Dan skipped that party on Saturday night. I went with friends and did my best to be festive enough to represented us both. Boy did I miss having Dan take the morning shift yesterday;)

I say I am doing things solo, but I do have some help. Thank you Lilly and Maria for everything you do for us!!!!!!

no need for a recount

I try not to get political on this blog. One reason is that I know that there probably isn’t anything I could say that would ever change anyone’s mind AND I’m guessing that considering I’m a pot-brownie baking, Latin American born woman who has a son with disabilities/pre-existing conditions and a daughter who is set to break many glass ceilings – you know where I stand.

In the last two years, the word president has taken on a new definition. Often more of a punchline than a title of respect and honor. So, when I saw this poster hanging on the walls of CPNJ Horizon High School a few months ago I was rather surprised. Who would want THAT job?

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You know our boy is always up for a challenge. Jack ran his campaign with the motto of being the “voice of the high school”. I can assure you that it was not an empty promise. Jack may not speak, but he understands everything and has the pulse on what is important to his classmates. He listens, he understands, and he knows how to get things done. My guess is that had he won, there would have been a few extra dance parties added to the calendar this year.

That’s right. Jack did not win. He lost to a very worthy opponent and Jack conceded with grace. From what I understand he shook the new president’s hand and wished him well (with his iPAD).

When I got the news, I can’t say that my first reaction was as full of grace. It was more, “What the F*%&!?!? How did my boy NOT win!?!?!”Jack’s life fell apart 11 years ago, but we glued (or taped) it back together and now he should get EVERYTHING he wants!!!”

Once I caught my breath, I laughed. Who needs all that work anyway? Besides, I love that his school doesn’t have an “all kids win everything” policy. Just because the students have complicated lives, doesn’t mean that they can’t handle some disappointments. In fact, I’d argue that this is a crew can handle more than most people in Washington.

Still, I worried a little about how Jack was feeling, so I picked him up early and greeted him with a big hug. He didn’t seem an worse for wear. I told him how proud of him we all are and that he should be proud that he ran an honest campaign without any outside interference from Russia. Then, I reminded him that he still won the popular vote at our house. He popped me on the head, smiled and got in the car.

Jack’s up for his next challenge. Maybe Prom King?
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Love, Jess

Halloween 2016 – we thought it was funny. Elections don’t always go as expected.