Category Archives: special needs family

Proud and Sad — Mostly PROUD

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I got one of those Facebook memories yesterday morning. I almost scrolled by it — there was no picture to capture my attention — but then I glanced at the words.

11 years ago, I was worried (even sad) about Anna. It wasn’t fair that her life had been touched — sometimes torched — by what ALD had done to her brother. BUT I was so proud of her and how she approached her life. 

Although her life was different than most of her peers, she had a pile of extraordinary friends who surrounded her with love and fun and were all amazing to Jack. She was already an exceptional student and athlete. And, even at 12, Anna had an independent streak that presented itself often. If she had a goal, she would make it happen — when she wanted to make some extra money, she found herself babysitting work and even organized (with dear Caroline) a lacrosse camp for some younger kids in town. She was a kid who would paint her own room. I believe middle school were the “Tiffany Blue” years.

But Dan and I DID worry about Anna back them. We would discuss if she was feeling too much pressure to achieve. Was she feeling that she needed to do enough to make up for what Jack couldn’t do? We wondered if her motivation and good attitude would continue.

They did.

I am NOT a believer in “everything happens for a reason” or “Life only gives you what you can handle”. I’ve witnessed too much tragedy to believe that nature is fair or that there is some sort of master plan that makes sense.

What I do believe in is the internal power we all have. The power to make choices. The power to lean into uncomfortable feeling and find hope during dark times. AND – if you’re Anna – you have the power to look a disease that has harmed someone you love and instead of cursing it, work to be a person that helps put an end to it.

Anna is not sure what she will specialize in, and we are NOT pressuring her to work in the ALD space – although we do discuss it . . . often. No matter what she decides to focus on, she will be amazing. We are so proud of our girl. Sometimes we worry (even still get sad), but we are always proud.

Love, Proud. Momo

remembering to pause

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I spend a lot of time encouraging my clients to pause. Pausing to take a deep breath before they face something challenging. Pausing as they consider their next move. Pausing to enjoy the sunset, a hug from their child, a … Continue reading →

A complicated, painful and beautiful weekend

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It started last Thursday morning with another fall. Who knows if it was ALD or just stupidity. We’re all guilty of doing stuff that we know we shouldn’t, right? 

Dan had Jack in the shower as I was rushing around trying to get ready for the day – making Jack’s breakfast, setting up his morning medication, getting dressed, prepping for my morning clients, and changing the battery on the outdoor Ring camera.

I had a minute before Jack would be done with his shower and I looked around to see what else I could check off my list. You can picture me as I raced to the back yard and was happy to see that there was already a chair sitting right there below the camera mounted on the side of the house. It did occur to me that the chair had been removed from our outdoor table because it was old and unsteady . . . 

I climbed up on the chair and was able to slip in the new batteries before the chair wiggled. I lost my footing, landed on the slate and felt a loud crack. My tail bone hit first followed by my head smashing backwards.

Within an hour I had the results of a CAT scan with a determination that there was no brain bleed but likely would have a concussion. I was told, “Spend the next few days resting. No screens and not too much thinking”.

Not a great weekend to limit my thinking.

Dan and I were heading out the next day to attend the memorial service for a friend I’ve held dear since childhood. I needed to be there. I needed to celebrate her life and be surrounded with her family and old friends. I also needed to be with two of my best friends– the four of us have shared memories from every part of our lives. Mourning with them in person was something I couldn’t miss.

With Dan’s help, after spending as much time as I could in the dark (trying not to think), I got in the car Friday afternoon. I reclined the passenger seat and closed my eyes until we got there. The weather seemed as upset as we were. What should have been a three-hour drive took us six hours.

By the time we made it to our rental we were exhausted but being able to hug my friends (and their wonderful husbands) seemed to make me feel healed.

The next day we arrived at the same chapel where we celebrated our friend’s wedding 20 years ago. It sits just across the street from the home she treasured (and we had all snuck out of at least once). So odd when a place feels so familiar and so foreign at the same time. So many memories, but her bright smile had always been in the center. How can she be gone?

The service was beautiful — Just as she had asked for. Friends and family sharing beautiful words about a beautiful human. Each eulogy seemed to build on the last. All highlighting her incredible strengths. All sharing stories of her kindness and bright smile and her deep love of her two magnificent children. Each also shared her love of the sun and the ocean and her never missing an opportunity to dive in.

Sunday morning, we took a trip to her favorite beach and half the crew dove into the water. 

I did not go into the water. I had a pile of excuses at the ready, but I didn’t really need one. She knew that cold water and stony beach bottoms may not be my thing, but that I dive into life plenty (a gift taught to me by my JackO). I will continue to dive into life with her memory in my heart. I will, however, not stand on any more old chairs.

I felt her presence all weekend long. I’m grateful that my head and body allowed me to be present and now I’m back to being as careful as I can be. 

I have been hesitant to share my friend’s name. I think I’ve been scared that it would make it too real. 

It is real.

Lisabeth Mohlere Harris

Lizmo 

7/31/69 – 8/4/2023

Love, Jess

Thank you Neris for helping us with Jack on Thursday so that I could get medical care. Thank you Dan for being my driver, therapist, and nurse — this weekend and always. Thank you Kater and Bid for being lifelong friends. AND thank you Lizmo for being in my life.

Missing you Lizmo. Trying to remember you with smiles, not tears.

when everything falls into place

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Seven years ago, I got a direct message from someone on Facebook. She explained she was a mom of a boy with ALD and a founding member of the board of an organization called ALD Connect. Apparently, she had just spent her flight to their annual meeting reading Smiles and Duct Tape.

“You need to join the community.”

I remember thinking that it was cool that my book – which had just been published – had landed in ALD hands.

Within a year I was attending conferences and learning more than I ever imagined about the disease that had infiltrated our family. I was speaking at conferences, helping organize a peer mentor program and facilitating monthly community calls.

When I asked myself several years ago what I wanted my next chapter to look like, I knew I wanted to do more of what I was doing within the ALD community. More within the community and more helping others who were struggling with acceptance/anxiety/depression. I reached out to the same woman who had sent me that message all those years ago (by now a dear friend) and asked her to write me a letter of recommendation for graduate school to study counseling for mental health and wellness.

That was three years ago.

Yesterday I had a full day seeing clients ranging from 10-years-old to 92-years-old and ended the day honored to be facilitating ALD Connect’s first session of The Mental Health Community Call.

While I was busy with my new life, Dan was out in the crypto world, Anna was at a Yankee game — celebrating after her first round of medical school exams, and Jack was with his “other family” where he happily spends a least one night a week.

I went to sleep last night doing an exercise that I often recommend to my clients. “As you close your eyes at the end of the day, think of three things that went well today”. I didn’t stop at three and fell asleep with a smile on my face.

It’s easy to recognize when things aren’t going well and important to give value when things do. I’m grateful for this moment where life just seems to make sense. Lord knows there will be other challenges ahead, but it sure feels good right now. 

Thank you Kathleen for sending that note and starting all this AND for the letter of recommendation AND for trusting me to help our community AND for being you!

Love, Jess

ALD folks — join the call next month. It’s a great addition to The ALD Connect community calls!

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

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

a new routine

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The house is too quiet.

It’s weird not having Booger here.

When is he getting back?

My new work schedule had us needing to adjust Jack’s care. Many of my clients are teens, so I’m working late afternoons/evenings several days a week. After juggling things around, we decided the best idea was for Jack to sleep at his other family’s house on Thursday nights.

Jack loves leaving the house on Thursday mornings knowing his other mother, Maria, will pick him up from his adult program and bring him to her home where he gets to enjoy her wonderful cooking, feeding their chickens and spending time with his other sister, Jamilla. 

Initially, Dan and I were rather excited about having a little taste of an empty nest one day a week. Over the years we’ve watched our peers have freedom that we thought we would never experience.  And, the last few weeks we have enjoyed being able to have spontaneous late dinners out and not being in charge of medication and bathing and diapers on Thursdays, but these Friday mornings are strange. Our boy may not talk, but his energy is loud. 

So, every Friday morning Dan and I have the same conversation. The house is too quiet. It’s weird not having Booger here. When is he getting back?

Last night Anna came home to celebrate Dan’s birthday (HaPpY bIrThDaY Dan!) and her latest medical school acceptances. We were tempted to cancel Jack’s Thursday plan, but he seemed angry when I brought hit up, so he was with his other family last night as the three of us spent time together trying to fill in the gaps of Jack’s laughter. It was a nice night, but he was missed.

As soon as Anna came downstairs this morning she repeated our Friday morning mantra — The house is too quiet. It’s weird not having Booger here. When is he getting back?

I just got off of Facetime with Jack and he was all smiles as Maria filled us in on how they made pizza last night, listened to Jamilla play her guitar and had a big breakfast. He loves his weekly adventures. And Dan and I do like our new routine, but it is going to take us a while to become accustomed to these quiet Friday mornings.

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