a new chapter

Sixteen years ago, Jack was falling apart. He was struggling in school and becoming increasingly withdrawn. He was stumbling to find words and getting lost with any simple task. April of that year we finally received a diagnosis and our lives changed forever. 

The remainder of that year – and several years following — was a blur of hospitals and doctors and blood work and scans. It was also a time of fear and guilt and frustration and anger and sadness.

When we finally got our heads above water, I swore to myself that moving forward I would do whatever I could to help other families who were fighting similar battles. Our family started making Boxes of Fun for children on the BMT floor at Morgan Stanley’s Children’s Hospital at Columbia Presbyterian. We started hosting bone marrow registry drives. I started sharing our story on our blog, in online publications and eventually got a memoir, Smiles and Duct Tape, published. I became more active in the ALD community and the special needs community in NJ. 

In the fall of 2020 (like so many of us during COVID), I felt like I needed a change. I was sitting with one of Jack’s other mothers telling her that I wanted to start a new chapter but not sure what to do next. She asked me what brought me joy. I answered quickly helping other families like ours. She asked me if I could do anything to help, what would I do. Being a therapist seemed like the answer–but what about the money, the time, my age?

Thanks to the support of my family and friends, I didn’t listen to the doubts. I dove in and by January 2021, I was working on my MA in Mental Health Counseling for Mental Health and Wellness at NYU. My goal of working with special families has never wavered, but I did find that I also loved working with children, adolescents, and adults who were struggling with a broad range of issues. 

Helping people who are working through life challenges to reach a place of acceptance and to discover new, empowered perspectives—that may be the best way to describe my strengths as a therapist.

I graduated with my MA in September and survived NJ’s paperwork (I am pretty sure the paperwork alone is a test of how devoted you are to being a therapist). I’m now FINALLY pleased to announce that I’ve started with a wonderful practice. 

https://www.elanarosencrantz.com

Thank you to everyone who helped me reach this new chapter — particularly Monica who helped me define my goal, Mymom who supported me and reminded me that you are never too old to make changes, my friends who are my constant cheerleaders, Dan and Anna who were my editors and rarely rolled their eyes as I talked about theories, and Jack who is the best supporter, motivator and a darn good therapist himself!

Love, Jess

Welcome 2023!!!

Welcoming a new year is a great opportunity to start fresh. We’re planning the usual suspects of resolutions – Dry January, exercise more/eat less, books over Bravo – but we also have some huge changes coming up in 2023.

Anna will be starting medical school this year. It’s still unclear as to where she’ll be going, but she has already gotten accepted into six wonderful schools, including Johns Hopkins. It’s safe to say that she is going to be going to a great school and continue to head towards her goal of helping people lead healthier/less complicated/more comfortable lives. She also has her Art by ACT keeping her busy as well as a great research job at Kennedy Krieger. And, she is not finished exploring through travel – just last night she mentioned upcoming trips to VT for skiing, CA for adventure and there was something about a cross country trip. I wanna be ANNA!

I also have some big changes for 2023. I thought I would dive right into working as soon as I graduated with my MA, but I’ve been rather picky. I went into this with a very specific plan in mind – I want to be a therapist for special needs families (even more specifically the siblings of children with special needs). Of course, I look forward to working with any human who is struggling through any challenge, but I wanted to make sure I landed where I could learn and grow while working towards my goal. I found a great fit and should be starting soon (details will follow). I miss being busy. I miss working. I’m ready.

Dan has been on a serious health focus leading up to 2023. I’m hoping it’s as contagious as the stomach flu that went through our house a couple of weeks ago. He continues to work in crypto currency — which has been a challenge but very interesting lately. Dan is also eager to plan some fun family adventures and I can’t wait to see what he comes up with!

Jack is keeping his own plans to himself – an advantage of being non-verbal – but I have no doubt that he is looking forward to fun times at his adult program and spending oodles of time with friends, family, and his other families. Jack may be one of the few people who greets each new year with a simple “Hi. It’s going be another great year!”

We are all wishing everyone a very happy new year and hoping this year brings you all joy, purpose and a whole lot of laughter!!!

Love, The Torrey

Lucky Number 31!

Monday, December 5th, NJ began screening newborns for ALD. They are the 31st state in our country that has added ALD to their newborn screening panel. 

What does that mean? 

It means that people in NJ will no longer receive a late diagnosis for ALD. 

What does that mean? 

It means that families will now be provided with knowledge and the power to monitor their children and treat ALD if/when needed. 

What does that mean? 

Jack’s story will be part of the history of our disease.

I try not to focus on the what ifs, but I will to help explain the enormity of this news. What if ALD been part of the newborn screening panel in NJ 25 years ago? We would have known that Jack had ALD shortly after his birth. We would have likely struggled to hear this news about our perfect, chubby, healthy first born, but we would have gotten through it and moved forward. We would have learned about ALD and found doctors who knew the disease. We would have been prepared. When Jack was a young boy, we would have recognized that Jack’s reactions to a simple illness where a result of adrenal insufficiency and that his behavior was not defiance or ADHD. We would not have wasted time. We would have gotten him treatment sooner. Had ALD been part of NJ newborn screening panel 25 years ago, Jack would have had a stem cell transplant earlier and he would likely be living a very typical life today.

It’s not just the pain we could have avoided. It’s not just the lack of words and independence and need for constant care. NJ spent well over $1,000,000 on Jack’s education. He now receives SSI, Medicaid, and support from DDD — and will for his entire life. Jack’s life is complicated/fragile, and he is also expensive to care for – for us/our state/our country.

So, this is a win WIN for future parents, NJ, taxpayers, and people who believe in the power of science!

I shared this news on social media yesterday and received a lot of notes assuming our family had a large role in this exciting development. We are very small fish in this beautiful pond. Elisa Seeger and the ALD Alliance, Taylor Kane and Remember the Girls, ALD Connect, and the piles and piles of doctors, parents and advocates made this happen!!! 

There are still too many states who are NOT testing for ALD. If you live in one of those states, please let me know and I will connect you with people who can help you help to make it happen.

Love, Jesse

Where was I?

Just coming down from a magical weekend full of time with Mymom and Anna, hanging with old friends, meeting superheroes, and listening to informative, brilliant, inspiring information. Where was I?

ALD Connect’s Annual Meeting and Patient Learning Academy!

When I was asked to speak at the conference, I was honored but intimidated. Being among so many people who are changing the direction of our disease, I wondered what I could contribute. “The Burdens of Caregiving” was the topic. After some discussion we added “and Joys”. THANK GOODNESS – I couldn’t imagine spending 30 minutes listing burdens!!

I included two other ALD stories – other phenotypes of our disease — so that I could share a broader picture of what caring for a loved one with ALD looks like. Thank you Miranda and Laurie for your honesty and perspective (two of my ALD superheroes). I ended the presentation with a little story that I thought I would share here.

Three weeks ago, I fell. Just out walking my dogs, enjoying the fall weather. I can’t tell you exactly what happened – or if my own ALD had something to do with it — but suddenly my feet got confused and I hit the ground, hard. I broke a rib and without any notice I wasn’t able to do any of the caregiving that has defined my life for the last 15 years.

Anna came up from Baltimore to help out. She had to get Jack up and ready foschool which can be a bit of challenge. One morning I heard her get Jack out of bed and then I heard a few comments about a mess. I watched from the couch as she walked to the laundry room with a big pile of laundry. A few minutes later, she walked through again holding a bag that I could only assume was a very soiled diaper.

I am so sorry you need to deal with that Bananz”

No worries mom – Sometimes you’ve just gotta wash your hands and move on”

And that is just what she did. A minute later I heard her singing along with 70s on 7 while dancing with her brother in the bathroom.

I think it’s important for us caregivers to remember that there will be a lot of messes to clean up – a whole lot of burdens – but if we can learn how to wash our hands and move on, we have a chance of appreciating some of the joys of caregiving.

Thank you, Anna, for your words AND your attitude!!!

Love, Jess

tHaNkS Team Torrey!!!

How many people does it take to care for our boy?

A lot.

Day 14 with a broken rib. Although I’m healing, I’m still not able to do much for Jack these days. Showering, changing, toileting, medicating, feeding – none of these things are particularly difficult, but there’s the Jack factor. Jack moves and grabs and hugs – it’s the hugs that scare me most – they’re magical, but I worry they could be dangerous!! 

So, I haven’t been doing much other than watching bad tv, studying for the National Counselors Exam, and counting my blessings that Jack has an amazing team of people who have stepped up to help out.

Dan has taken on the brunt of the responsibilities, but he has a job. Anna is home now for a few days – yahoo (she had offered to come home sooner, but she had a cold – if you’ve ever broken a rib, you will understand that a cold is terrifying). Luckily, Jack also has an arsenal of other mothers, and they’ve been amazing! Maria, Monica, and Lilly have all been keeping Jack entertained, fed and clean. And, we have a new addition – Natalie. We’ve known Nat since she was a tiny thing. She’s one of Anna’s best friends and she’s now a nurse. She offered to bring her skills and hang with our boy as needed. Lucky Jack – lucky us!

So, I continue to sit, watch bad tv, study for the National Counselors Exam, and count my blessings.

Thanks everyone for being me! I look forward to being able to care for our boy again (and enjoy one of Jack’s magical/dangerous hugs), but it sure is nice to know that Jack has a team who is ready, willing and able to help!!!

Love, Jess

a walk, a fall, and a kick in the ass

The dogs and I have been enjoying a new daily walk for a couple of weeks. Half the walk is through our neighborhood and then we slip into the woods for a while. Not only is it beautiful, but it’s great for the dogs to get a change of scene full of new smells and it’s good for me. My feet sometimes get a little lost. The only way I can explain it is that I don’t really feel them. They do what they need to do most of the time, but sometimes they need a little attention. Steps, curbs, crowds, rocks – they can all be challenges. I’ve learned that if I focus on them and where they are headed, I’m fine. A mile in the woods is good for me, my soul, my brain, and my feet.

Yesterday the dogs and I had a lovely walk (for a while). The crisp air and autumn leaves were beautiful. We walked out of the woods and turned the corner to head back into our neighborhood when suddenly it was like I was lifted into the air. I knew I was falling but couldn’t really figure out how to safely land – my feet seemed tangled. I hit the asphalt on my right shoulder and face.

Adrenaline helped me get off the ground and treats helped me lure the dogs to come back to me. I tasted blood and worried I may have broken a tooth and was relieved that they were all intact. Then I checked to make sure my legs were okay. Except for scrapped knees, they were fine. I found my phone in the leaves, dialed Dan’s number and started crying. Poor guy was in CA heading to the airport to come home. It took him a few minutes to understand what had happened and assured me that he would stay on the phone with me. I started walking, anxious to get home. A few steps in, my chest felt tight. By the time I got to our front door I was a basket case. Dan and I agreed that I needed to get to the ER.

I called my mother next. Her years at the Red Cross makes her as close to a doctor as our family has until Anna gets her degree. She agreed that I needed to get to the ER to see if I had broken a rib or two. I then called my friend Jen who dropped what she was doing and within minutes pulled into the driveway to take me to Urgent Care.

Apparently, there is not much to do for a broken rib – ibuprofen, acetaminophen and use of a breathing thingy (incentive spirometer) every hour. Oh, and “avoid recurrent injury to the affected area”. The doctor was friendly enough but didn’t seem to appreciate what it looks like to be Jack’s primary caregiver OR take much interest in why I fell.

I did managed to get some sleep last night and am now trying to figure out how to get through the next few weeks as this rib is healing. I have a dog walker coming every day, Jack’s other mothers are chipping in, and Dan has already gotten Jack up and out to school, made the beds and started the laundry. I hate this sudden need to cancel life for a few weeks but figure I will spend this time studying for the National Counselors Exam, preparing for the ALD Connect Annual Meeting and Learning Academy (I’m speaking this year and a little nervous), and working on some workshop ideas I have been thinking about. I’m also going to start making some appointments for me to see doctors who understand ALD. My balance, my bladder, my ghost feet – these are all likely results of ALD. This fall has not just broken a rib but it has kicked me in the ass — It’s time for me to make my health a priority so that I can continue to care for others.

Love, Jess

look what we just got!!!

We’ve lived in SOMA (South Orange/Maplewood) for 25 years. We’ve owned three homes here, had two kids here, and raised 4 dogs here (some more successfully than others). We’ve celebrated many happy moments here and experienced our hardest days here. SOMA will always be our home.

There are many reasons to love our towns — the easy access to NYC, our charming villages filled with cute stores and excellent restaurants, schools that managed to educate our two very different children, South Mountain Reservation, and the people. The people of SOMA are what really make our community a treasure. 

We’re honored to be the cover family in this month’s SOMA Living Magazine. Thank you, Michael Goldberg, Karen Driggs, and Jamie Meier (www.livelovelens.shootproof.com), for putting this all together and sharing our family’s story. We wish Anna could have made it to the shoot, but we did FaceTime her. I wonder if this should be our holiday card this year🤪😂🥰

Love, Jess

If you live in SOMA, you should be receiving your copy of SOMA Living Magazine soon. If you live out of town, you can catch a glimpse here — http://somalivingmagazine.com/

where did the tears come from?

Every month I speak to medical students from Rutgers University. It’s a small group of third year students who are in their pediatric rotation. I’m a “patient representative” who is there to share our family’s story and the good and bad of what we’ve experienced with doctors. I look forward to these Zoom sessions and am always impressed with the students and appreciate being able to sneak in as much as I can about ALD — the often missed signs of ALD and the importance of newborn screening.

After we go around doing introductions, I share the video that bluebird bio made about our family. It’s a great way for the students to learn a bit about our journey and “meet the family”. While the video plays, I usually take the opportunity to slip away from my desk to make a cup of tea or check in with Dan and Jack. Last night I sat and watched the video with the students.

I found myself in tears.

I did regain my composure by the time the video was over and got through the next hour and a half managing to hold it together as I shared stories of working with many exceptional doctors and some who were lacking empathy and/or the ability to recognize when they may need more education about our not as rare as you might think disease. I always try to be approachable and relaxed, using humor to make everyone as comfortable as possible as I share stories about witnessing our son unravel, searching for answers, receiving a life-threatening diagnosis, watching as our once typical, healthy son fight for his life, and learning to adapt to a life that none of us ever imagined. I’ve done this enough that I can let the words just flow. I did a fine job, but I couldn’t help feeling distracted.

After the session, I got up and went directly into Jack’s room, knowing that time with the boy would brighten my mood. We sat and watched The Impractical Jokers and laughed until it was time for us to get ready for bed. I did feel much better after spending time with him.  Jack is doing great. He loves his adult program and time with his other mothers AND can comfortably live at home. His health continues to be stable and, except for an occasional tear shed while watching those ASPCA ads, he always has a bright smile on his face. 

Although I felt better, as I tried to fall asleep last night, I kept thinking about my reaction to watching the video. My only explanation for yesterday’s tears is that it’s been a while since I let myself really focus on what we went through 15 years ago. Sure – I share it, but I remove myself as much as I can from the story. I fill in as many of the dark spots with humor and light. It’s how I survive.

If I were my own therapist, I would ask myself how this strategy is working, and I think my answer would be that it’s working pretty well — I don’t want to live in the dark. I want to live in the light. I want to enjoy all the good our family has experienced and not waste time with the what ifs. BUT maybe sometimes I should consider allowing myself some time to be frustrated or mad or sad. I’m not sure how or when, but I will sure try to avoid doing it in front of a screen full of students.

Love, Jess

HaPpY 2022?!?!?!?!

There are few things as depressing as taking down the Christmas tree. It literally screams – THE PARTY IS OVER!!!!!!!!

We had a great holiday season, but this year’s celebrations were tainted with a constant fear of being cancelled. We had piles of fun activities planned — family parties, visits with friends and plans to celebrate Anna’s graduation (YES – our Banana is done with school). Leading up to each event we’d scrambled to find a test, swipe our noses and pray — COVID was everywhere!! We were almost resigned to getting it (hoping that our boosters would do the trick). Good news is we managed to sneak in almost all our plans, and so far none of us got sick with anything (but perhaps a little bit of a hangover here and there).

Yesterday when I started taking down the holiday decorations, I thought about all the fun we had over the last few weeks and then heard Anna packing up and Dan starting our 11th load of laundry. 

Anna’s now back in Baltimore, Dan’s upstairs being loud about crypto currency, Jack is out with his other mother, Maria, and I’m sitting at my desk wondering how I’m going to work 20 hours a week as a counseling intern while going to school full time. I have the news on in the background and COVID is continuing to try to cripple the world, there are warnings about threats of violence on the anniversary of January 6th and someone just mentioned it might snow on Friday.

The party is indeed over!

I’m trying to remind myself that 2022 is going to be a great year. Anna starts her life as a grown-up while living/working in Baltimore and applying to medical school. Dan has his job that he loves and his Old School Vinyl Podcast. I will be finishing my master’s program and start my twentieth career as a counselor. And, Jack will continue being the happiest man on the planet☺️!

Here’s to a fantastic 2022! May it bring everyone joy, health 😷and happiness!! I promise I’m toasting with a simple glass of water 😉

Love, Jess

MCATS, NYU, Old School Vinyl and Duct Tape

hApPy NeW yEaR!!!! Less than a week into 2021, and our family is starting out strong. Anna completed her junior year at Johns Hopkins a semester early, so she’s taking next semester off to study for the MCATS. Not really … Continue reading