side rails, alarms and a birthday

Yesterday I woke up to a tap on the arm. I was confused before I opened my eyes. Why was Dan back home – he’d left so early? Then I heard the hop hop as my human alarm walked away.

I wondered how long it would take for our boy to figure out how to climb out of his new bed. Just less than a month isn’t bad. We’ve been living this life for twelve years now and a month is remarkably quick for learning a new skill. Not that I’m assuming that Jack will manage this new trick again for a while, but I ordered some side rails for his bed, just in case. 

In our old house I worried about Jack climbing out of bed and falling down the stairs. Now I worry about Jack roaming around the house unattended and God forbid escaping and finding his way into the pool. Progress can be complicated at our house – wherever it is. I’m so proud when Jack accomplishes a new goal, but each improvement can come with a list of worries.

Dan and Anna think I am nuts, but along with the side rails, I’ve recently installed an alarm system so that I can hear every time a door opens, cameras in Jack’s room and at the front and the back of the house and an alarm for the pool. Having a child with special needs can be complicated and expensive, but piece of mind is priceless.

Twelve years ago I never imagined that our family would look like this today. I was living in the “everything is going to go right back to normal” mode. I never thought I would secure our house — not from outside threats, but from our boy and things as simple as climbing out of a bed.

THIS is ALD.

images-10

Today is Jack’s 12th Transplant Birthday. 4383 days since those cells from the “Little Lady from Detroit” (in case you missed our story 12 years ago – Jack’s stem cells came from a cord donation. All we know about the donor was she was born in Detroit in 2005. She needed a name, so we gave her one) saved Jack’s life. So much has happened since them. Loads of good, plenty of bad – but mostly good. Although we never imagined living this life, we have a lot to celebrate today. This year we are planning on celebrating big for his 21st “typical” birthday, so we told Jack we are keeping things tame today. Don’t tell him, but we did get him a few gifts. Just trying to figure out how to wrap those side rails.

Love, Jess

PLEASE send Jack a birthday note AND consider making a small donation to CPNJ Horizon High School in his name. His Wheeln n Walkin Challenge is tomorrow and we are only half way to our goal . CLICK HERE. 

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;)

IMG_5482.jpg

IMG_5465

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!

30581584_10215411123898659_6238504954525384704_n

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

imagejpeg_0-1

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;)

imagejpeg_0-2

Pot Mama

images

Every few weeks someone reaches out to ask me about medical marijuana. They’ve found me through a friend of a friend or have followed the blog or stumbled on an article I wrote. They often start the conversation with a long monolog about how desperate they are, how much pain their child/parent/friend/spouse is in and how they are NOT a family of stoners.

I always start my advice, being clear that I’m not a doctor and that they need to follow up with their team of doctors. Then, I go into our story, the benefits we’ve seen with Jack, advice for talking to doctors, information about various strains of marijuana and details about how to make edibles (NJ only sells flower – not oils or tinctures or edibles). 

Early on, I used to find myself constantly adding comments to make sure that the person on the other end of the phone knew that I was a super responsible mom, who had only stumbled on the benefits of marijuana after a lot of research. And, of corse, NEVER had even seen marijuana before the day I walked into a state run dispensary with my Caregivers Medical Marijuana license.

Now I’m a little more honest.

Marijuana does has many, incredible medical benefits. For Jack, marijuana has helped with spasms in his hands and legs. It helps him sleep and overall has improved his mood, focus and attention. I’ve known people who have seen relief from seizures, comfort through cancer treatments, even improvement with anxiety, depression, and pain.

So many medical benefits, BUT marijuana can also be a relatively safe recreational drug. At this point, three generations of my family use cannabis. Most for medical purposes, but some use it the way many use a glass of wine at the end of the day or while celebrating on a Saturday night with friends. I would never condone driving or using heavy equipment while under the influence of marijuana, but I no longer want to pretend that I believe that it’s a scandalous drug unless taken under the care of a doctor.

First off — although a doctor prescribed marijuana to Jack and is required to resubmit a form to the state every three months saying that Jack still needs the medication, there has been very little direction provided by the doctor. That’s way people are finding me to answer their questions. They are finding me to figure out how to make that bag of marijuana buds into a cookie, how to determine the strength of each cookie and how often to give their loved ones a “treat”. Although medical marijuana is only legal in NJ for medical purposes, in our experience, there is very little help from the medical community.

Secondly, if taken responsibly, there are very few negative reactions to marijuana. It may not be for everyone, but I’ve seen enough in my (almost) fifty years to know first hand that there are plenty of things that people can buy legally that are not good for them OR for the people around them. Cigarettes, alcohol, semi-automatic weapons just to name a few. I wonder when people will finally recognize that not only is marijuana safer than many of the drugs in our medicine cabinet, it’s safer than many recreational products on the market.

Earlier this week, NJ called off it’s vote to legalize recreational marijuana. They did not have the votes to assure that it would pass and are waiting to further educated people. They need to prove to the public that there are many benefits to legalizing marijuana, including more taxable income for our beautiful Garden State. Proponents of legalization also need to prove the minimal downside of allowing adults to purchase the herb. I am really hoping that this moves forward quickly. 

I used to worry about what people would think of me if I was open about being pro, not just medical marijuana, but marijuana in general, but the more we hide in the shadows, the longer it’s going to take for the public to understand that legalization is a good thing. I am not a stoner myself (I’m more of a white wine person), but I do think it’s time to take away the lingering stigma against Jack’s favorite medication.

Love, Jess (Pot Mama)

 

Dear CPNJ Horizon High School,

IMG_1542

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.

IMG_4757-2

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.

IMG_9797

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

Do us a favor

IMG_4771

Two people who share one disease

 

Today is Rare Disease Day. Please take the opportunity to celebrate by sending off letters to help pass Aidan’s Law. It’s time for every newborn in the country to be tested for ALD. This life-saving test shouldn’t be available depending on your zip code.

I look forward to a day where ALD is not the disease that Jack faced 12 years ago.

This will take you less than 2 minutes and will save lives. 

https://actionnetwork.org/letters/letter-to-congress-to-pass-aidans-law

Love, Jess

 

 

on my last nerve

images-8

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

images-7