a love letter to CPNJ Horizon High School

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One of the highlights of my weekdays is when Jack’s bus pulls away.

It’s not that I don’t adore my boy, it’s just that I love letting go of my responsibilities and I know that Jack is off to have another great day at his school.

Jack’s been at CPNJ Horizon High School for five years and there hasn’t been a day since he started that I haven’t counted my blessings for finding that school.

The PG Chambers School was a hard void to fill. Not only had Jack received a great special education there, but they were there for our family as we came to terms with the fact that Jack’s disabilities were not going to magically dissolve. They held us up for years as we reached a place of acceptance.

When we were faced with finding a new placement for Jack, I was basket-case. I’d just wrapped my brain around being a special mom with a child, and suddenly I was walking into schools filled with young women and men with profound disabilities. It was a population that I didn’t know and it was overwhelming. Everything was bigger – bigger kids, bigger equipment, bigger changing tables.

Thankfully, the positive energy at the school quickly won us over. CPNJ Horizon High School is an incredible place.

Like a typical high school, Jack and his peers switch classrooms throughout the day – science, math, world languages, history, art, gym, yoga, karate. They learn everything from simple cooking and using household appliances like washing machines, to practicing making beds (Jack has yet to attempt those last few things at home, but maybe he will surprise me on Mother’s Day). When the kids are not in a classroom, you might find them out in the garden watering their veggies or on their adaptive playground or hanging out in the sensory room or maybe in the pool getting therapy (it’s been a while for JackO – they have a “3 strikes/you’re out” policy. You can guess what’s considered a “strike”;). There’s also a school store where Jack’s peers sell tasty snacks and clothing made by the students. Jack and his classmates also receive all the necessary physical therapy, speech therapy and occupational therapy seamlessly within their school day.

That’s just a typical day at CPNJ Horizon High School. Special days pop up often and Jack LOVES every second of these days. Each year CPNJ Horizon High School produces a play – filled with student actors — wheel chairs/walkers/speaking devices – nothing stops these kids. There are also costume parties, dance parties, sports days, movie days, even prom – that’s next Friday and I promise to share photos.

The greatest thing about the school isn’t really all of the activities, it’s the people behind the activities. The students are the stars, but it’s also the teachers, therapists, aids, nurses, custodial staff, cafeteria staff, administration. You walk into the school and it’s like walking into Disney World. It’s clean and beautiful and everyone has a smile on their face and a warm greeting at the ready. It’s a place where I am known simply as “Jack’s mom” and I answer to it easily.

So, when that bus pulls away each morning, my smile is not just about me being able to enjoy a few hours without diapers or medicine or responsibility. It’s about knowing that my boy is going to enjoy a great day. Thank you CPNJ Horizon High School. I love you;)

Love, Jess

If you would like to support Jack and his wonderful school, their annual Wheelin N Walkin Challenge is coming up soon. Every class walks/wheels proudly sharing their class banner. It’s a beautiful site to see. It also happens to be a fundraiser . . .

https://interland3.donorperfect.net/weblink/weblink.aspx?name=cpnj&id=71&cfifid=11

 

the good, the bad, and the ugly (not in that order)

 

THE BAD

I continue to be dealing with anxiety. I had been feeling rather optimistic about my progress thanks to a few helpful books, learning to focus on my breath, essential oils, experimenting with meditation, standing behind a pretend waterfall and a wonderful therapist who reminds me to take all of these things with a grain of salt. I even drove over a small bridge last week and didn’t acknowledge it until I’d almost reached the other side. I was starting to think that maybe I had even reached the other side of this anxiety.

Then, life got in the way.

Our family is heading down to Hopkins this weekend for Dan’s 30th college reunion. I’ve been looking forward to seeing old friends and spending family time celebrating Dan’s alma mater and Anna’s future home (NOT home, temporary housing for four years). Everything was going according to plan until I learned that Anna can’t join us until Saturday because she has a lacrosse game and Dan needs to go on Thursday for business meetings. That leaves me and JackO to go over the Delaware Memorial Bridge alone.

The Delaware Memorial Bridge is HUGE!!

 

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Just writing this has me sweating. I’ve thought about taking the train or taking a longer route with a smaller bridge or waiting until Saturday to go with Anna or leaving early to go with Dan or calling for a “bridge escort”. Yes, that’s a thing. Over 400 people a year call a magic number from either side of the Delaware Memorial Bridge to get assistance. I know because I’ve done the research and have the phone number on a post-it note attached to my computer screen. I am officially ONE OF THOSE PEOPLE. I keep going back and forth about my plan, but (as ridiculous as it sounds) somehow that post-it has calmed my nerves a little.

Unfortunately, the bridge is not our only challenge this week. An attempt to be proactive and responsible Dan and I decided to take an old oil tank out of our front yard. We’re not ready to move just yet, but we know it’s in our not-too-distant future, so why not take care of any linger issues? We did our research, hired a reputable company and crossed our fingers. The finger crossing didn’t work. Our next step is soil remediation. We are not sure of the outcome, but it looks like this story may be far from over.

 

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I spent much of yesterday cursing, regretting ever buying a home and hating being a grown-up. The worst part is that we will not know the extent of the problem for several weeks – not great for someone who is spending too much time worrying about a long list of who/what/where/hows. Again, the sweat is rolling down my back as I write this.

THE UGLY

After a day with several steps backwards on my road to tranquility, I picked up my dog at the groomer. I didn’t know what to say when I first saw him. Finn has never had a good reputation. He jumps and barks and has even been involved in a lawsuit with our mailman. His one good quality has been his looks. He looks like a big, furry muppet. He DID look like a big, furry muppet. When I walked into the groomer yesterday he looked like a skinny, bald rat.

I felt sorry for the young girl who handed over his leash. She looked so sad and embarrassed, “His chart said you told us to cut off anything matted. At least he won’t need a cut for a long time.”

I tried to laugh, gave her a tip and told her not to worry. Then I grabbed the leash and tried to sneak Finn out to the parking lot without anyone seeing me walking a skinny rat-dog. Another step backward.

THE GOOD

Finn the rat-dog and I went together to go pick up JackO from school. I was steaming the whole way there thinking about bridges and oil tanks and money and bald dogs, but my mood turned quickly when I walked into the school and saw a friend and her son. I told her I was having a bad day and she said, “Jess, whenever I’m having a hard day I remind myself how lucky I am to have this kid in my life. Look at our boys – who’s happier then them? We get to wake up and see their smiles every day.”

She’s right. My boy – our boys – live in the moment and when the moment is good, they enjoy every second. I need to focus on the good moments and not worry so much about the complicated/expensive/scary moments. I know somehow we will get to Baltimore and our yard will get cleaned up and my rat-dog’s hair will grow back. I just need to get behind that waterfall and let my worries spill in front of me. Don’t judge them, just witness them and allow them to pass (am I don’t that right?).

Jack and I walked out to the car and I was starting to feel better. When I put Jack in the car he started laughing uncontrollably. I didn’t realize what was going on until I realized that Jack was looking at poor Finn lying in the back seat.

Life is more GOOD than BAD or UGLY.

Love, Jess

FYI – Rereading this, I feel a little guilty about saying that Finn’s only good quality is his looks. He is one of my favorite writing companions and always knows when I need a little extra love.

 

 

 

 

 

 

 

THIS is ALD #18 — Margaret

If you haven’t read THIS is ALD #17, go back. It’s an incredible piece showing how ALD can weave itself through a family for generations. It was shared by an ALD mother/daughter/grand-daughter/great-granddaughter. She is also a symptomatic carrier. THIS is her story.

 

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THIS is ALD #18 — Margaret

I first started noticing little things, symptoms, in my 20s. The first thing I distinctly remember is the feeling that ants were crawling on my lower legs. Then I had back spasms; I’d be sitting at work and my back would knot up. I attributed it to having to sit a lot at work. But then I started visiting a chiropractor who did massages and we couldn’t figure out why or how my neck muscles used to get so tight in between appointments. I then started to visit a massage therapist, leapfrogging between the chiropractor—and my neck and shoulder muscles were still really tight, like all the time. I thought it was stress, not just at work, but my personal life was crumbling around me. I felt like a pinball, bounding from one circumstance to another for a year. I wasn’t taking care of myself, I was always fatigued, and my migraines started getting bad again.

I started having problems wearing shoes with heels in my early 30s. Now, I can only wear flats that go all around my feet (no flip flops). My feet are always numb but surprisingly sensitive. My hands are often numb too—I put them down so the blood flow is restored and I can feel again. I have little grip strength. I also have Raynaud’s Syndrome, wherein the capillaries in my fingers and toes shut when cold, so they get white and numb. I don’t know if it’s an AMN thing or a family thing.

I’ve had to get a cane to walk with so that I don’t look like I’m a drunk meandering along the walkway. I got a shower seat so I don’t fall in the bathtub. I have orthotics that go down my lower legs and into my shoes the length of my feet so that my toes don’t slip on the ground. I have an implanted drug infusion pump that puts baclofen (a medication that helps relieve spasticity) directly into my spinal column.

I have pain every day, it feels like my bone marrow is boiling. I visit my pain doctor every month. I have taken every medicine there is. I take 9 medications every day, besides the baclofen, and have another 4 I take as needed. Fatigue is a huge issue for me, both as a result of medicine side effects and exhaustion from dealing with pain.

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I’ve been on Social Security Disability for 10 years — a combination of AMN, Migraine, and anxiety and depression. It took two tries over almost three years to get approved. I’ve had to be reassessed twice and will again. There’s nothing like watching your abilities slip away, knowing that this shell of a body will fail me, I just don’t know when, or what my quality of life is going to be in the meantime. I don’t mean to end on a negative note, it’s just that that’s what I’ve been dealing with internally the past few months.

— Margaret

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As I’ve gotten more involved with the ALD community, one question that keeps coming to mind has been, What about the carriers (women with the gene)? There are some differing opinions on the subject, but more and more the answer is that people don’t carry ALD, they have ALD. Even women.

I won’t go too much into the science behind X-linked diseases like ALD (frankly I don’t know too much about them), but here’s a short version. In the case of an X-linked disease the mutation affects a gene on the X chromosome. Males, having only one X chromosome, are effected by the condition if the single X they inherit from their mother has the mutation (or the mutation happens spontaneously). This is why ALD is generally passed from mother to son. Females have two X chromosomes and the unaffected X chromosome should HELP their body compensate for the gene mutation. It is a common misconception that females cannot have X-linked disorders and that they can only be unaffected carriers — In truth, diseases like ALD are proving that while females tend to be better off than males (because one of their chromosomes is producing the correct protein), they can, and often do, have the disease in varying severities.

I have heard that there are cases of full-blown cerebral ALD in girls, but I can’t verify that. But, I have met several women over the last year that are clearly effected by our disease. Neuropathy, bladder dysfunction, spasticity and balance issues seem to be quite common for women with the ALD mutation, especially as they get older. Unfortunately Margaret falls into the category of “symptomatic carrier”.

Thank you Margaret for your honesty. It’s important for people to see every way ALD can effect a person. It’s also important for people to understand that ALD can effect every person with the mutation. Again – newborn screening identifies people — both genders –with the gene so that they can be monitored and treated properly.

Love, Jess

 

 

 

 

 

 

 

 

THIS is ALD #17 — Margaret, Andy and a long family history of ALD

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This is ALD #17 — Margaret, Andy and a long family history of ALD

My name is Margaret Bray. I’m 47 years old and an ABCD1 obligate, symptomatic, carrier (more on this will be posted tomorrow). Out of my three sons, only my middle son has inherited the gene. My sister is Jamie Garrison Barlow and she’s a carrier. She passed the gene to both of her kids – a daughter and her son, Bradley Hartman, who passed away last July at the age of 21. Her daughter gave birth, with a little medical assistance, to a beautiful girl on July 1, 2017, who is not a carrier. It’s a wonderful and beautiful story!

My mom is a 72 year old symptomatic carrier. She is Jamie’s biological mom also. (Jamie was given up for adoption at birth by our mom. She was reunited with Mom and met me on November 3, 1999. That’s when she learned of the family history of ALD.)

Mom and I suspect that the ABCD1 gene originated with my great-grandmother. She was as born in July 1895 in Kingman County, Kansas and was an only child. I’m not certain if she was brought up Mennonite, but that is the community in which she and her husband, who was raised Mennonite, raised their family, on a farm close to Pretty Prairie, Kansas.
My great-grandmother gave birth to 12 children, 7 of whom survived to adulthood. Their first was born in 1916. He passed away in 1922 after “a short illness,” and/or “summer complaint.” This raises all sorts of red flags for me, looking back at family history, not the least of which is the age, 6 years old, at which he passed. In all, my great-grandmother had four babies that did not live past a year old.

My mom does not remember any of her cousins presenting any ALD symptoms, but my grandmother’s siblings spread far and wide across the United States, and some family members Mom has only met a handful of times. So that leads us to believe that the only unfortunate bearers of this stupid disease were my great grandparent’s first son and my grandmother.

My grandmother was born in 1925 in the farmhouse (as were all of the babies, the Mennonite community likely had a midwife or two to assist with the births.) She tired of the farm life and longed to live somewhere else. I don’t know the circumstances that led her to be swept off her feet, but she got married, and then had my mom in 1945. Within two years after Mom was born, my grandmother grew dissatisfied with her marriage and got a divorce.

She remarried and her new husband accepted Mom as his own. They went on to have 4 boys. Their second son died from “Schilder’s Disease” when he was 6. Their oldest son was for years misdiagnosed as having Multiple Sclerosis. When a new neurologist connected his symptoms with his brother’s diagnosis, he was confirmed to have AMN. He was wheelchair bound by the end of his 30’s. He committed suicide in 1997 at the age of 46. Their youngest son had mobility issues starting in his late 20’s and was diagnosed with AMN. He died from complications from AMN in 2001 at the age of 39. Sadly their other son who was not effected by ALD, died of AIDS in 1993 at the age of 35.

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Margaret, her mother Paula Sauter and sister Jamie Barlow

I have three sons, Patrick who will be 19 at the end of February, Andy, who is 15, and Alexander, who is 2. Of my boys, only Andy has inherited the ABCD1 gene. We found this out when Andy was 5 months and Patrick was 4 years old. This was after much inner conflict and distress on my part. I’m glad I did, however, because it gave me time to research all possible avenues of medical therapy.

My husband-at-the-time and I decided to get Andy into the Lorenzo’s Oil Study at Kennedy Krieger Institute. We had to wait until he was 18 months old before we could get him in. We went to Baltimore in July 2004 for the first time. What a crash course in how to cook and how to negotiate through the grocery store! (Lorenzo’s Oil is a combination of oils, when combined with a low fat diet is thought to slow the progression of the disease) Andy stayed with the study until 2012, 8 years in all. Kennedy Krieger’s funding kept getting cut, first the MRIs got cut and I had to arrange for them in town, then the neuropsych testing got cut and it wasn’t something I could get done on my own, so we made the decision to stop being in the study.

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Taken during Andy’s Make-a-Wish trip to Legoland October, 2014. Jamie Barlow, nephew Bradley Hartman, the amazing ALD hero Janis Sherwood, Andy, Patrick, and Margaret.

 
Life outside of the study has been interesting. I’ve been trying to teach Andy how to negotiate what he eats on a daily basis, to get him to choose lower fat options when available. He’s 15, so only so much of what I say gets heard. He gets yearly MRIs, and continues to have clear ones at that. I like to think that the L’Oil has something to do with that, but I can’t be entirely certain ever. It’s like we are eternally fated to be Damocles, with the sword of ALD hanging by a mere horsehair above us, never certain when, or if, the hair will break and life as we knew it would end and our new life with ALD begins.

— Margaret

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When I first read this piece I was in awe of how thorough this family history is. It’s clear that Margaret, her sister and mother have been determined to have this research complete – not just for their family, but for others to see how a disease can wind through a family.

An unfortunate family history that shows ALD at it’s worst. Marching through a family allowing few to escape it’s grip – especially in the case of her grandmother’s family. Many lives taken too young and so much time wasted with misdiagnosis. THIS is what newborn screening can prevent.

Andy is lucky to have such a devoted mother who clearly has done everything possible to keep him out of harms way. I can’t thank you enough Margaret for sharing your family history with us and for your family’s continued support for the ALD community.

Tomorrow I am going to share Margaret’s story as a symptomatic carrier. It’s a side of ALD that many don’t know.

Love, Jess

 

 

 

 

the new normal

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Smiles and Duct Tape went to Wisconsin last weekend. I’ve been speaking a bunch with the ALD and the special needs worlds, but this was the first time I was sharing our story at a book festival with regular folks. This is what I learned — Regular folks are special, just like us.

I tried not to, but I couldn’t help myself from reading through the bios of all the authors attending the Southeast Wisconsin Festival of Books. MFAs, PhDs, awards, long lists of writing accomplishments. As I boarded the flight to Milwaukee, I couldn’t help but be nervous. How could I compete with all these real authors? And, why on earth would anyone want to go to The New Normal panel when they could go hear about The Poet as Historian or From Page to Stage or Teaching, Writing and Thinking about Queer History?

As soon as I landed, I was put at ease by the warm smile on the face of the man picking me up. He also had a sign with my name on it (I love that whole sign thing). As we got into the car, I asked about his connection to the Book Festival. He shared that he was not just a big fan of the event, but a dedicated volunteer and a former English teacher. My nerves ramped up again as I imagined him editing my work. Why was I here? Maybe Candy invited me on a whim, never thinking I would actually get on a plane and travel the 870 miles. I kept telling myself to breathe. Candy’s an old friend (from elementary school), but she was under no obligation to extend the invite and send me that plane ticket. She must have read the book and thought it would be a good fit for the festival, right? Breathe.

We arrived at the hotel and as soon as I checked in, another author quickly put out his hand and introduced himself. He couldn’t have been nicer and I quickly got over his PhD and other credentials. He was warm, sincere and interested in chatting. Then, I met up with an author who was part of The New Normal panel, and within a few minutes she felt like family. I thought – if everyone here is this friendly, I’m going to be okay.

They were, and I was.

The New Normal drew a larger crowd than I expected and I managed to keep up with the two other panelists. We each had very different stories, but all sorts of connections. I’ve never given a talk with other people and didn’t know what to expect, but it felt natural and I don’t think I even did my usual shaking. I also got to enjoy attending talks by an assortment of talented writers and to reconnect with my old friend Candy (and a pile of her creative/talented friends). All weekend was spent sharing and listening – lots of talking. This was a group that likes words written AND spoken.

As I think about the experience and all the people I met, I’m amazed by the fact that nearly every person I talked with understood “special”. Since I was there to share our family’s journey, people felt comfortable sharing details about their own lives. Many had gone through incredible challenges themselves or helped family through the horrors of illness or depression. They all had been witness to a new normal. Perhaps that’s true about everyone. I think we need a new word for “special”. Human?

Being around such a creative assortment of humans for two days was incredible. Everyone had a story and everyone was eager to hear mine. I walked away energized and eager to start my next writing project (I’ll fill you in on that soon).

I’ve been getting out of my comfort zone quite a bit of that lately. It’s been exhausting, but I’m honored to share Jack’s story with a broad audience. I’m learning a lot about the world and myself along the way.

It’s also good to come home.

Love, Jess

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My reading list:

 

Carolyn Walker’s Every Least Sparrow

Mary Jo Balistreri’s Best Brothers, Joy in the Morning, Along the Way, and Gathering the Harvest

Das Jenssen’s Phenomenal Gender: What Transgender Experience Discoloses

Jeaneete Hurt’s Drink Like a Woman

Nickolas Butler’s The Hearts of Men

AND if this show comes to a city near you —- GO! The Pink Hulk 

 

cringing and shaking, but okay

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When I was a junior in college, I took an Old Testament class. It was a small class and most of it consisted of open discussions around a large round table. One week in, I approached the professor and told him I was sorry, but I needed to drop the class; “I just can’t do it. My heart races just thinking about speaking in front of everyone.”

Had you known me at that age, you might find my anxiety surprising. I wasn’t someone who hid in a corner or didn’t like attention. It was the combination of academics and public speaking that made me panic. School hadn’t been easy for me thanks to some learning issues, so when I was at school, I did my best to stay safely in the back of the room. I saved my loud, social self for after class time.

To make a long story short — the professor would not let me drop the class. He bargained with me, promising that he would not make me speak until the last class of the semester. I sat silently for months in a class of maybe a dozen people – until the last day. Of course that made things rather awkward. Everyone had thought there was something wrong with me and couldn’t believe it when I actually opened my mouth that day. I did manage to get my words out, but not without a whole lot of “Ahhhhhhh”s and “Uhmmmmmm”s.

After that class, I promised myself that I would never again speak in public. Then, I decided I wanted to be an art teacher. My first few attempts to model lessons in graduate school were painful, but I got over it and managed to become comfortable . . . in front of a classroom of children.

As an adult I have done a little more public speaking. I spoke at a fundraiser for The PG Chambers School, and to some small school groups with our service dog, Keegan. I even spoke at Listen to Your Mother. Each time I walked away cringing and shaking, wondering when it would get easier.

Since Smiles and Duct Tape was published, I’ve had the opportunity to speak more — at bookstores and schools. And, it’s really ramped up this month. I spoke to a psychology class at Seton Hall University about “exceptional children” and was honored to speak at a CPNJ fundraiser sharing our story and our love for CPNJ Horizon High School. Next week I’m speaking about ALD up in Boston and then heading to Wisconsin for the Southeast Wisconsin Festival of Books. I can’t say I feel completely comfortable as I start a presentation, but I do think I am getting the hang of it.

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It’s so strange how life can send you in a direction that you never expected. The girl who got Cs in English, wrote a book. The girl who couldn’t stand up in front of a small group of classmates, now speaks in front of large audiences of ADULTS. It’s not without plenty of nerves and a whole lot of shaking (honestly – it’s unreal how my whole body shakes), but I am doing it. If it helps other families going through similar situations or helps students trying to understand what “special” looks like or helps people understand ALD or if it encourages people to support wonderful organizations like CPNJ – I’ll do it.

It’s my way of taking back some control. It’s my way of proving that our family has reached the other side of hell. It’s my way of not letting ALD win.

 

Love, Jess

 

 

 

HaPpY 19th!

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I’m happy to report that we did not take any bit of HaPpY out of Happy Birthday (if you don’t know what I am talking about, click here)! JackO enjoyed every minute of his 19th Birthday and looks forward to celebrating all month long. Thank you for all your birthday notes – keep them coming!!

 

 

Love, Jess

PS HaPpY Birthday PopPop!!! We will celebrate soon Block Island style;)

 

It’s NOT a Secret Anymore!

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An article I wrote about medical marijuana was published today on The Mighty – CLICK HERE TO READ IT!

If you are an avid reader of this blog you may recognize the initial story, but dig a little deeper – there’s a lot of information. Medical marijuana has been a life-changer for JackO. I hope sharing our story helps other people dealing with chronic pain/spasticity/anxiety/digestive issues – the list goes on and on and on.

Love, Jess

 

#THISiswhatALDlookslike

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I do some of my best thinking at night. Thanks to a small (kinda broken) bladder, I wake up often and before I fall back asleep, I often have these brief moments of genius. Sometimes I wake up and laugh at the absurdity of my late night ideas, but sometimes I think I’ve actually stumbled onto something good.

I’ve been fighting a wicked cold and have found my late-night-mind-spinning-time has increased exponentially. Lying in bed, cursing my cough and trying to find my way back to sleep, I’ve been thinking a lot about our boy, ten years and ALD.

I’ve shared our story from the beginning of our journey with ALD for a lot of reasons. Initially, it was to keep people posted on Jack’s progress, then it was for me to process the madness in our lives. BUT I’ve come to realize that one of the biggest reasons that I continue sharing is that I want people to see what our lives look like.

Adrenoleukodystrophy is not a disease you can picture by Googling the word. What you find when you Google Adrenoleukodysrophy is words like “demyelinating” and “metabolic,” and “long-chain-fatty acids”. If you dig a little deeper, you find statistics about boys who develop Childhood Cerebral ALD and men who develop Adrenomyloneuropathy (AMN), the percentage of Addison’s Disease reported, even the effects a carrier can develop. But ALD is not just about these facts — it’s about the people that it touches. They each have a story. Some good, some horrific, some somewhere in-between.

In order to really understand the disease you need to meet the people.

I went to a seminar a few weeks ago (run by Maplewood Cultural Affairs) and the cool, young, hip speakers spent a lot of time discussing the importance of social media in promoting your work/causes/etc. Apparently my time on the Facebook (even calling it THE Facebook) was getting a little dated. The seminar gave me an education on Instagram, Twitter and hashtags.

I came home and tried to figure everything out and thanks to my personal IT person – Anna – I got some extra schooling on Twitter and Instagram and finally understand what a hashtag is (FYI #hashtag is not a cool thing to tweet).

I started not just adding #smilesandducttape to archive my writing/photos, but I added #THISiswhatALDlooks like.

A few nights ago while coughing uncontrollably I thought – wouldn’t it be cool if all the other ALD families did the same and we could have a giant archive of who we are? Not just the boys post-transplant with complicated lives, but the boys who have hope thanks to New Born Screening, and the boys on Lorenzo’s Oil, even the boys who have lost their battle but are still alive in the hearts of their friends and family. AND, I picture it being not just our boys, but their siblings, their families, their community.

I’ve come to know many families with our disease and each has a story. I would love it if we could band together and introduce ourselves to all of you. I think if the public can SEE our disease they will understand it more.
Let’s see if we can get this to work – could all the ALD families out there use #THISiswhatALDlookslike to show the public the PEOPLE behind the disease?

Love, Jess

OK – awake Jesse has done some digging now that I understand this whole hashtag thing. #savetheboys #adrenoleukodystrophy  #fuckALD and #aidanhasaposse are 100 steps ahead of me. Not just archiving family photos, but starting a movement to save our boys. Not sure if I am helping or adding to the confusion here. You tell me.

 

#THISiswhatALDlookslike