Tag Archives: special needs family

Special Siblings

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As many of you know, I have a favorite daughter. It’s not just that she shares my love of Anthropologie and Madewell or that it’s fun watching her excel academically.  I’m in awe of her strength and resilience and her ability to know what people around her need — especially her brother.

When Jack first got diagnosed, Anna was six years old. Our family changed overnight. Her life went from an idealic suburban childhood to her family scattering. We were completely focused on Jack – getting him treatment — saving his life. I don’t really remember much about what Anna did that summer. I know she took some classes at a local camp and that friends included her on many fun summer activities. Ivete arrived from Brazil. I’m not even sure how that happened but we will forever be grateful to her.

Sometimes at night while Jack’s hospital room was quiet, my mind would have a moment to think about something other than blood counts and GVHD testing I would wonder how Anna was coping and how all these changes were going to affect her life. Our nurses allowed us to bring Anna into Jack’s isolation room and turned a blind eye when she would spend the night. She and I would order delicious Dominican food, watch High School Musical and fight over my favorite blanket. There were times she would have me hold her tight and whisper questions she was scared to ask.

Dan and I agreed that we needed to be honest with her. She had lost the luxury of innocents. 

And that summer was just the beginning. Jack came home and his life had changed dramatically, and it meant that all of our lives needed to adjust.

I know we should have done more for Anna, but those of you have gone through ALD (or any other complicated medical or emotional issue) diagnosis or treatment or the aftereffects – you know that the needs of the other kids in the family sometimes get lost. 

Anna has thrived in her life and so many of the special siblings I’ve come to know over the years have also been quite remarkable. I’ve wondered what helps them and what can hurt them. I spent much of my time in graduate school researching these special siblings and appreciating that there is so much we can’t control when going through these complicated times BUT there are some things that we as parents/grandparents/friends can do to help these kids.

ALD Connect has recognized the importance of these special siblings and asked Anna and I if we would host a webinar discussing the topic. Once our community discovered we were working on this project, I’ve heard from countless people sharing their stories. Newborn screening families, early diagnosis, late diagnosis, siblings of folks with AMN and siblings of women with our disease. We are doing our best to represent all potential circumstances, but also hope to have time for discussion during the webinar. Time to learn from other families.

Please consider joining the Webinar this Wednesday at 7 pm. I hope this is the first of many.

CLICK HERE to register for the event.

Love, Jess

When one thing leads to another, and another, and another, and another . . .

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You know those memories that pop up on Facebook? For me they’re usually photos of the kids at younger ages or my friends and I acting foolish. I sometimes pause for a second to remember the memory. I often cringe at the thought of me deciding to post something so silly or wonder how on earth I didn’t appreciate my face before it was full of lines. 

Yesterday I paused for a while for a different reason.

8 years ago, I’d posted a video from Listen to Your Mother from 2015. I’d tried out for the production after some persuading from a friend (thanks Brooke). She’d encouraged me to do more to share my words – to share our family’s story. Eight years ago, I’d started to be more confident in my writing, but the idea of standing up and speaking in front of a couple hundred people made my stomach clench. But, I auditioned for the production trying to push myself, feeling comfortable with the fact I would never actually make the cast.

I made the cast and was forced to work through my fear of public speaking. The rest of the cast was extraordinary. Each of their stories were beautiful and many of those folks remain friends today. Listen to Your Mother ended up being a huge part of my life. Not just the five minutes I spoke on that stage, but what those five minutes led to.

Shortly after the production, thanks to the encouragement of another friend (thanks Alice), I started working on Smiles and Duct Tape. Once that was published, I started to connect more with the ALD community (thanks Kathleen). My work within that community focused me more on working with people. One COVID day while hanging out with a friend discussing what I should do with my next chapter, I found myself starting an application to NYU for a MA in Counseling (thanks Monica).

My Linkedin page has my title as mom/writer/speaker/advocate/therapist. All connected. One led to another, led to another, led to another, led to another.

This is not the life I imagined. My heart wishes that Jack did not need to suffer years of discomfort and need to rely on an army of people to care for him. I wish Anna didn’t get introduced to the power of medicine the way she did. I wish Dan didn’t need to carve out time in his work schedule to bathe Jack in the morning. I wish I didn’t need to know the word ADRENOLEUKODYSTROPHY to be provided with a long list of job titles on Linkedin. I wish I didn’t need to dream to hear my son speak. 

But I’ve learned to accept the cards we’ve been dealt.

I talk about acceptance a lot with my clients. I acknowledge that life is often not fair or easy. I allow people to kick and scream and yell at GOD, but then I help them work on focusing on what in their lives is working. I have them find the positive — even if it’s just a tiny morsel tangled up in a mess of darkness. I have yet to find someone who can’t find at least a sliver of light within their lives and many are able to appreciate a pile of positives.

It’s taken time – and not a straight path —  but our family has been able to appreciate our pile of positives. We’re blessed with the fact that Jack survived and is comfortable in the life he’s living. We’re grateful to have the financial recourses to pay for necessities and care and even wonderful vacations. We’re lucky to have found ourselves at Columbia Presbyterian with doctors and nurses who were brave enough to try a treatment that was out of their comfort zone. We’re blessed to live in a state that supports people with disabilities and we’ve had our choice of wonderful schools and adult programs. We’re fortunate to have a circle of other mothers who care for Jack with dignity and love. We’re thankful to have a wonderful extended family who is always there for us. AND we have friends who don’t just help us create foolish Facebook photos, but help guide and encourage us when needed.

Yesterday, as I watched the video of The Talking Dream on Facebook, I had that strange feeling that I’d shared that story a lifetime ago AND that I’d shared it just yesterday. So much has happened in eight years. The kids are both now adults, Dan is now a crypto guy with a beard, and I have a whole lot more on my resume BUT I still have that dream and still wake up hopeful.

Love, Jess

Three is Better than One

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Packing for a trip. It’s the first of several coming up and I’m going through the familiar clambering mental list– What to pack? What am I forgetting? If this happens, will we have enough of that?

Unlike my usual day-before-a-trip madness, I’ve realized I’m not particularly stressed out. Perhaps part of it is where we’re headed this weekend — up to Vermont to meet up with family (both my brothers and my beautiful sister-in-law) to see Dead and Co Saturday night at SPAC. It’s hard to combine stress with songs filling the air, but there’s more of an explanation for my relaxed, groovy mood. It’s because there are three of us packing up for this trip.

Three is better than one.

Anna is home for the summer before starting medical school in August. Not only are we all loving her brilliant smile and willingness to listen to our stories and laugh at our jokes, but we’re also loving how helpful she is. She grocery shops and cooks and cleans and organizes and even wallpapered two bathrooms. So today, instead of me scrambling around to buy more diapers, fill Jack’s prescriptions and figure out where we hid our cooler – I just ask Anna.

It was also Anna who decided that we weren’t going to leave Jack behind for this trip. She reminded Dan and I just how much Jack loves music and dancing and any chance to meet new friends who share his love of . . . grilled cheese sandwiches. I’m so excited that the four of us are doing this together. And, with three of us doing the packing and driving and occasional diaper change, this trip will be fun and quite manageable.

Anna has made it clear that her summer of being a “1950s housewife” is getting a little old and that being a doctor seems like a way easier line of work, but until she leaves in August, we are going to enjoy another set of hands at our house.

Thanks Banana. Thanks to you there is nothing left to do but smile, smile, smile.

Love, mom

I want to be clear that we are a family of four and Jack is very much in the center of our circle — it’s just that he is more of the cheerleader than a packer/shopper/organizer/driver.

16 years

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16 years.

5844 Days.

Two homes. Four dogs. Eight schools. Seven graduations. Many jobs. Trips to Ireland, Cape Cod, Vermont, Charm City, Disney, Massachusetts, Yankee Stadium, Italy, Maine, Block Island, Puerto Rico, Florida, New Mexico, Colorado. We’ve been skiing/tubing, kayaking, surfing, swimming, sailing, and hiking. Many tears. More laughter.

16 years ago Jack had the transplant that saved his life, but before it did it’s magic ALD stole a lot from Jack. It stole a lot from our family. 

For 16 years we’ve done our best to grab back what we could – to live big, bold, bright lives. I think we’ve done a darn good job.

Happy 16th Transplant birthday JackO! Thank you for your guidance and strength for all these years.

And to ALD – F*CK you!!!

Love, Jess

Full Circle

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Yesterday was the anniversary of receiving Jack’s ALD diagnosis. 16 years since we heard the word Adrenoleukodystrophy for the first time. We were in a small room behind the nurse’s station on the 6th floor of Morgan Stanley Children’s Hospital at NewYork-Presbyterian Columbia. The room was filled with people as Dan and I sat on a small sofa trying to take in the news that Jack’s symptoms were a result of Adrenoleukodystrophy. That Jack may die. That he needed a horrible treatment if we wanted any hope of saving him. That our lives had changed forever.

Later that day, I was taking a walk to clear my head and I saw a sign — AMAZING THINGS ARE HAPPENING HERE.  All I could think was – there better F$%^ING be!

AMAZING THINGS ARE HAPPENING HERE is an ad campaign that continues at NewYork-Presbyterian Columbia. Every time I see it, I take a breath and nod my head. Amazing things are happening behind their walls. Lives are being saved, new treatments are being used, and doctors are being trained.

We learned that NewYork-Presbyterian Columbia was a teaching hospital when a month into our stay there, a pile of young faces marched into our room to meet Jack. We’d been asked if it was okay for a few medical students to stop by with their instructor. They wanted to learn more about ALD. We agreed and, later that day during my nightly call with Anna, I shared how cool it was to watch soon-to-be-doctors learn about our disease.

Anna soaked in the story. She was already thinking that being a doctor was in her future.

For 16 years, Anna’s determination to be a doctor has been incredible to witness. Her brain allowed her to excel in many subjects, but she chose to focus on the sciences. She could have gone to any college, but she chose Johns Hopkins University knowing it was the top pre-med program. She could have made some extra money working as a server or a bartender, but she instead spent countless hours working for extraordinary doctors and researchers. She studied hard, graduated in just six semesters, and nailed the MCAT exam with a top score. Although she reminded us often that there was no guarantee (even with her great resume) that she would be admitted to any medical school, she got offers at many top schools.

The last offer she received was the offer she had been dreaming of since 2007.

Anna will be attending Columbia University Vagelos College of Physicians and Surgeons!

Our family has always tried to focus less on her accomplishments and more on who Anna is in her core — a beautiful human who is kind and empathetic and knows how to get us all laughing when we need it — but today we want to focus on this incredible accomplishment!

Anna — We are so proud of who you are as a human and all the beauty add to the world. AND we are super proud of your determination and hard work and brilliant mind. YOU are going to do amazing things!

AMAZING THINGS are indeed HAPPENING!!!!!!

Love, Jess

Ever wonder?

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Ever wonder what life would look like if the worst thing hadn’t happened?

Ever close your eyes and try to picture yourself going through the motions of life as it was supposed to be?

When Jack first got sick, I would wake up each morning forgetting our new reality briefly. Then it would sink in.

That first year, I could easily picture what life would have looked like had Jack not been diagnosed with a disease that within months had left him both medically fragile and fully dependent. Jack would have finished second grade over at the Marshall School. He would have continued playing little league for another year or so (but was probably getting close to breaking the news to Dan that it wasn’t really his sport). Anna would have had hair down to her waist instead of missing that 10 inches that she’d donated to Locks of Love. I would have been dreading those crazy weekends before the holidays when everyone in town NEEDED their family portraits done. And Dan’s job would have been flourishing, knowing all his ducks were in a row at home. 

We also would have taken that trip to Puerto Rico that we had to replace with an extended stay in the hospital.

A couple of years into our new life, I needed to concentrate a little more to get the visual of what life would have looked like if the worst thing hadn’t happened. Even before his disease made a mess in Jack’s brain, he was never into organized sports — certainly not the way kids play sports these days. By middle school, I pictured him being one of those kids with a skateboard in hand and holes in his jeans that were earned, not purchased. His beautiful smile making even the cranky neighbors forgive him for cutting through their lawn and paying music too loud with his buddies. Without being exposed so early to the power of science, Anna may have chosen to focus on her other love — art. She might have had parents who paid a little more attention to her – to her schedule, her needs. I might have given up family portraits to go back to teaching art full time. As a family we might have even gone abroad for a few years taking advantage of a job opportunity for Dan.

Now this fictional story of how life was supposed to be is impossible to imagine. As much as I tried not to let it happen, Jack’s disease has been the center of our lives for 16 years. It has defined our family. Jack didn’t finish his time at the Marshal School, he never returned to little league or rode a skateboard. He didn’t go to college or trade school. Instead, he went to special schools for the multiply disabled, has become accustomed to needing help with everything from eating to toileting, and had to learn how to make that magical smile of his be his only source of communication. 

But things aren’t so bad.

Jack’s in an adult program now where a typical day involves pushing his friend’s wheelchairs, doing simple arts and crafts, being fed by an aide, and laughing. Anna is on her way to medical school in a few short months (her likely focus is reproductive endocrinology – a specialty we’d never known existed before this new life). Dan has enjoyed a wonderful career in finance, but his priorities include having the flexibility to be able to get Jack up in the morning – hearing them in the bathroom listening to 70s on 7 as Dan bathes his only son is how I wake up each morning. And my life is completely a result of the worst thing that ever-happened to us. I’m a writer, an advocate, a therapist – all things that would have been — not just unlikely, but impossible 16 years ago. Impossible without living through the worst thing in our lives.

If I could — I would change our journey. I would trade all this for what life had promised us before the worst thing happened. There is a reason I still call it the worst thing that ever happened. BUT it did happen and it left, not just scars, but the knowledge that we can heal. That we can survive and even thrive. 

So I try to look at our family now without thinking too much about the before and after the worst thing. I try to focus on who we are and what we are doing now. Maybe this is life as it is supposed to be.

Last month our family finally took that trip to Puerto Rico. It may not have been the trip it would have been without the worst thing, but it was beautiful. 

Love, Jess

a new chapter

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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!!!

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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!

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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?

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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 for school 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