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
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!
Lesson of the day — Hard work pays off!!
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!!!!!
Jack also has some other fathers. And, again – he sure seems to like that juice;)
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)
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!
Please help us give back to Jack’s home away from home.
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.
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.
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!
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.
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!!!!!
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.
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.
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.
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
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 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!!
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.