I refuse to steal the HAPPY out of HAPPY BIRTHDAY

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I don’t remember all of my birthdays, but 19 was especially memorable. My friend, Dave, took me out for dinner. It was our favorite Chinese restaurant and I’m sure there was a Scorpion Bowl or Mai Tais or something else really sweet and really strong. We stuffed ourselves with beef and broccoli, and then Dave insisted on ordering dessert. Who does that at a Chinese restaurant? Fried ice cream or something odd and I could hardly fit in a bite. Besides, I was anxious to get back to the apartment. It was my birthday and I wanted to grab our friends and go out.

I felt like Dave was going in slow motion as we made our way back to the Woodrow (think rundown/gritty/college three-story apartment building in Baltimore). I was so focused on how lame he was being that I didn’t considered WHY he was moving so slowly until we walked through the door.

“Surprise!!!!”

I’ve never been so shocked. Somehow, without me having even a clue, my mother had contacted my best friend, Enger, and sent her some cash to plan something nice for my birthday (remember this was years before cell phones). I’m guessing that my mother had envisioned sparkling wine and canapés, but instead there were pizza boxes and a keg of beer. It was one of the funnest nights of my life. Rowdy, loud, and silly. 19.

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JackO is turning 19 on Saturday.

Each milestone that we reach comes with a little reminder of what coulda/shoulda been and I hate that. I hate that there is any hesitation on focusing on the happy part of happy birthday. I hate that I spend even a second wondering if I would have sent money to Jack’s college friends to buy some booze and party favors (probably not – 2017 is not 1988 – I’d probably end up in jail for contributing to the delinquency of minors). I hate that I wonder where Jack would have gone off to college. I hate that I use any ounce of energy cursing ALD — AGAIN.

But I do. I can’t help it.

When I started writing this, it was for me to post on Jack’s birthday, but I’m not going to wait until Saturday. It’s not fair to Jack. It’s not fair to his birthday. His birthday is for celebrating. He deserves it. He is the happiest person I know and NOONE likes a celebration more than our boy;)

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So — enough of the coulda/shoulda. We are going to celebrate all weekend. Heading to the beach with some of our closest friends. We’re going to eat pizza and cake and maybe even find ourselves a Mai Tai!!!!! Then, on Monday we will celebrate again with his pals at school. And, when we head to Block Island later in the month — we will have more cake and do more singing.

I will send some photos of all the fun on his actual birthday. In the meantime – send Jack a note. On Facebook or right here. Scroll down. See “Leave a reply”? Go for it!

Love, JackO’s mom

PS Once I have written down my feelings, I feel much better. No need for weepy phone calls or awkward hugs if you see me. I promise I’m now focusing on WackO JackO and his big, fun day/week/month.

PPS I wrote this last night and, as I was falling asleep, it occurred to me that I might have actually been remembering my 20th birthday. Enger? Dave? Betsey? Deb? Anyone?

 

 

what would you do?

Is the truth always necessary – sometimes even mean? Have you ever wished you had lied?

Last night I found myself wishing I could swallow the words that were pouring out of my mouth.

It all started with a fun dinner with one of my oldest and best friends (Hi Maura). We make an effort to get together every couple of months, and our nights are always filled with stories of life now mixed with ridiculous anecdotes of our high-school days. With Maura, I am just Jess. Same girl that she met 32 years ago. It’s awesome.

We had a great cuban meal and our usual share of Sauvignon Blanc, before we hugged goodbye and got into our separate Ubers.

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I climbed into the Toyota Highlander in a great mood and was delighted to be greeted with a driver who had a warm smile and bottle of water for me. Before long, we were busy chatting. I love talking with strangers. Everyone has a story, and if you’re willing to dig a little, fascinating tales are plentiful.

It took a little while – it usually does for guys – but finally my driver, Mohammad, started talking. He immigrated to The States as a young adult, and most of his family is either still in India or in Australia (which I must get to soon – he swears it’s “beyond beautiful)”. He misses his extended family, but feels like it’s too late to make another big move. He’s married to the love of his life (sweet story) and has two girls who he’s finally getting to spend time with now because he’s in-between steady work. Apparently, the restaurant chain he was managing did not appreciate the month he took off while his oldest daughter was recovering from a terrible accident.

At this point in his story, Mohammad got upset and I didn’t get all the details, only that his daughter suffered two very serious leg factors that required several surgeries and 14 days in the hospital. It was a horrible time and losing his job has put a great deal of stress on his family, but he is trying to focus on how wonderful it’s been to spend time with his girls, “I’ve gone from working 13 hour days/7 days a week and only seeing my daughters when they are sleeping, to picking them up at school and cooking dinner with them. The accident was horrible, but I’ve gained a new perspective and real appreciation for what’s really important. I need to find steady work soon, but I won’t go back to my old schedule. I would miss having time with my girls.”

We were stuck on the Pulaski Skyway, when Mohammad turned around and thanked me for listening to his story. Then he asked, “So what about you? Do you have any kids?”

I tried to have him continue sharing, but he insisted on hearing a little about me, so I kept it short and sweet, “I have two kids. My son is 18 and my daughter is 16. Great kids.”

He didn’t miss a beat, “Wow! Where’s your 18-year-old headed this year?”

It would have been so much easier if I had just said that my son was taking some time to find himself (not really a lie) or made up some sort of story. Mohammad had just opened up (something I’m guessing he doesn’t do often). I knew what was going to happen if I shared too much about our family. It makes people feel uncomfortable. Especially if they have just shared a “dark” moment. As if there is some sort of hierarchy of disasters and you aren’t allowed to complain if your’s doesn’t rank in the top ten.

The problem is that I feel bad about lying – as if I am ashamed of who Jack is and what his life looks like. A huge part of who I am is a mom. A mother of a beautiful, brilliant daughter who is going to do amazing things and the mother of a handsome, funny,  son who lights up a room with his smile, but can’t speak or take care of himself. How can I leave out the truth?

I tried for a quick soundbite.

“My son has some disabilities. He will stay at his high school for a few more years. College won’t be part of his future . . . but he’s great. Super happy!”

The silence that swept through the Toyota Highlander was painful as this guy tried to find the right words. I could see that he was trying to figure out what to do next, took a deep breath and asked for details. And, he didn’t give up after my simple explanation of “My son has a rare disease that left him with some challenges.”

“How old was your son when he got sick?”

“What was the treatment?”

“How long was he is the hospital?”

“HOW long?!?!?”

“Can he walk/talk/care for himself?”

I gave Mohammad the cliff notes of our journey, ending every sentence with, “ . . . but he is doing GREAT! Jack is super happy and my daughter, Anna, is doing great too!”

I felt terrible. I could see Mohammad’s eyes in the rearview mirror as he heard each answer. He was lovely and kept saying all the “right things”, but I couldn’t help but feel like I had ruined his moment of reflection. The rest of the drive home was awkward as I wished I could take back the truth. When we pulled up to my house, we were both relieved that the trip was over.

“Bye. Thanks for the ride and good luck with the job search. And, enjoy every second with your girls!”

“Bye. I will be praying for your son and your whole family.” – I wonder how many people hear THAT from their Uber driver.

Why hadn’t I just said that Jack was on his way to Goucher College (home of the Gophers/my alma mater)?

So what do we think? Is it ever okay to lie? Should I keep a good answer in my back pocket for the next time I am chatting with a friendly, water toting, stranger and they ask about my kids?

Love, Jess

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This is my truth.

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

 

a little taste of my old life

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I got a little taste of my old life last weekend.

Two former clients reached out to me about taking some photos. I’ve had the pleasure of doing a few projects over the last ten years, but my days of steady photo work are long gone. Another victim of Adrenoleukodystropy. Occasionally, I get calls from old clients and I usually explain that I’m focused on other things, but these customers wouldn’t take no for an answer, so I dusted off my camera and I crossed my fingers.

Two shoots in one day. It felt strange to be behind the lens again, but as I looked through the work this morning, I smiled. I still got it. I’m not planning on going back to weekends full of families and babies, but it sure felt good to dip my toe into my old life.

I try not to spend much time focusing on what ALD stole from us, but there are some days that remind me of things that we’ve lost. Saturday was one of those days. I’ve been thinking a lot about it and I’ve realized that although I miss my camera, even without working as a photographer, I’m still using that side of me.

I have substituted photography with writing. I approach each in the same way. I have an idea and I troubleshoot until I find a way to achieve my goal – whether it’s catching the sparkle of a giggling baby or sharing a story. And, both photography and writing are about connecting with people. I was a decent photographer, but I think my biggest strength was how I approached my clients. I’m good at reading people and I’m a good listener. I usually managed to make my clients comfortable. When taking portraits you need to have the client feel comfortable with you – otherwise you end up with that lame, awkward smile that we all had in our ninth-grade school photos.

I’m also aware of the comfort of people who read my blog/book. I’m a decent writer, but certainly not trained. I think what people respond to is the voice in my writing. It’s approachable. Whether I am taking about watching JackO win his race at the Special Olympics or how it feels to fight with Social Security or what it’s like to shower your eighteen-year-old son after he has soiled himself, your sofa and the floor (have I written that yet? It’s a common occurrence around here) – I think (hope) I am able to bring people into our lives for a brief moment.

As much as I loved picking up my old life, I think I have settled comfortably into my new one. I’ll take my computer over my camera for now. I need to write to help myself process our experiences and I love sharing with people who are going through similar challenges. I’m putting my camera back in it’s case. Not that I will always say no when old clients reach out. I might dip back into my old life every now and then. Maybe two or three shoots a year  . . . maybe four or five.

Love, Jess

PS While I was writing this, I got an email that a piece I wrote about medical marijuana is getting published on The Mighty. I get my share of notes that start with, “Thank you for sharing your piece. Unfortunately . . . . “. It feels great to get a note that starts with, “Thank you for sharing your story “Our Family Secret” with us! We’d like to feature it on The Mighty and make you an official Mighty contributor.”

 

 

tired but smiling

 

Ever need a vacation after a vacation? As much as we love our time on Block Island, we do tend to come home a bit worn out – especially after the Fourth of July. Picture 19 people, four dogs, sand, Scrabble, fireworks, a parade, loads of food and a whole lot of wine.

Although we are all there for four or five days, we act like our hours are limited. It’s the only time each year that all of us Torrey/Perry/Pastores are together and we fill the time with memories – some a little blurry, but always wonderful.

Thank you PopPop and Nanna Sue (and Block Island) for a particularly lovely holiday. We came home tired but smiling. See you in August!!!

Love, Jess

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It’s a GIRL!

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My daughter/sister/bestie is 17 today!

Anna left at the crack of dawn for the DMV, and returned with a huge smile on her face and a driver’s license in her wallet. Once I was done jumping up and down with her in the driveway, I found myself in a puddle of tears. And, the tears aren’t stopping.

I’m hoping that some time here on the computer will help me sort out why I’m finding today so overwhelming. If I can just find the words, I might be able to make some sense out of all these emotions.

I’m excited for Anna. 17 is huge and getting your license is a great achievement. I know that some kids these days aren’t too interested in driving, but our girl has been obsessed with cars since we let her drive up the driveway on Block Island when she was twelve years old. She organized a driving instructor and even talked us into giving her Dan’s car over a year ago (he took the train today – anyone selling a car?). When our girl gets her mind set on something, she’s all in. And, Dan and I have also been looking forward to this milestone. Not needing to worry about getting Anna to and from school and lacrosse practice – AND having her help with errands is going to be wonderful.

So, what’s with all these tears? Here’s what I’ve up with:

1.) There is always the “Jack Factor”. That punch in the gut when there’s a bold reminder of something that Jack will never experience. That was further highlighted today when I realized that the rest of my day included stocking up on his diapers at Target, dealing with Medicaid, and setting up some doctor’s appointments. That punch never goes away.

2.) The phone call to our insurance company adding Anna to our plan. Even with the “good student discount”, the increase to our policy was startling. Probably not enough to make me cry, but it certainly made me pause.

3.) As much as I love having a daughter/sister/bestie I can’t believe I no longer have a little girl. Wasn’t she just born?

I won’t go into all the details of the day Anna arrived, but I will share that it wasn’t quite as beautiful as I had imagined the birth would be. I had begged my doctor to allow me to have a VBAC (vaginal birth after c-section). Jack had been breech and 10 pounds – a scheduled c-section. I’d felt cheated from having a typical “birth story”, and thought that this was a great idea. Unfortunately, it wasn’t as fun as I expected. I had signed up for a VBAC, not for a natural delivery, but by the time Anna arrived, any bit of pain medication was gone. GONE.

Needless to say, I was in agony. The only thing that kept me from continuing my four-letter-word rant, was when I heard the doctor say, “It’s a girl!”

I stopped screaming to ask, “Are you sure?”

Dan and I didn’t know the gender of either Jack or Anna before they arrived. We loved the idea of the “ultimate surprise”, but truthfully I wasn’t ever expecting to have a daughter. Dan’s sister, April, is the only girl of her generation on the Torrey side. And, Pop Pop (Dan’s father) is one of four boys. When Dan and I started our family, I really pictured myself as a mom of a couple of boys. “It’s a girl” was a complete surprise. We had no name prepared and nothing pink waiting for her arrival. I just stared at this little peanut as she was placed on my chest, wondering what it was going to be like to have a daughter.

It’s been amazing, but how did the time go so quickly? How is that little girl with no name or pink blankets driving a car to pick up her boyfriend and go out to lunch?

Okay – I got it. I’m hysterical because my job as Anna’s mom is reaching the end. Thank goodness MyMom is on her way for a visit. I need some love. Hey, wait a minute . . .

 

Love, Jess

Happy Birthday Banana! You can come home now. I’m done crying for now;)

 

 

 

My Sister (daughter/bestie)

 

I didn’t have a sister, so I made one. It took a bit of help from Dan and loads of support from our friends and extended family, and I think we’ve done a pretty amazing job with the project. She’s just one inch shorter than I am, has the same blonde hair (although hers is a little more natural than mine), and we defiantly share the same sense of humor. She is a great sister to have. She is smart beyond her years and is the kindest person you will ever meet. She is a much younger, smarter, kinder version of me. Anna is my mini-me daughter/sister/bestie.

Thanks to my daughter/sister/bestie being thirty years younger than I am, I get to have a window into the life of a teenager in 2017. Trust me – it’s amazing!

This June has been particularly packed with fun and signs that our little girl is not so little anymore. I know I am not alone in being caught off guard by how painfully long parenting goes on AND just how quickly it’s over. How can our girl who was just in pre-school be on her way to starting her last year of high school and filling her life with so many adult things?

Last weekend Anna stayed home alone for a night. She had to stay local while the rest of us went to visit family. We were going to have her stay with friends, but after a lot of back and forth, we caved. She has never done anything to lose our trust and she did not disappointment us last weekend. There were no parties. If you are thinking, “How would Jesse know?” . . . I set up a camera in the center hall — really — I might trust her but I am not a fool AND I’m also a little nuts.

Then, this week Anna went to her second Prom for the season. Our beautiful girl looked stunning in her red dress and wore higher heels than her mama can manage. She shared plenty of fun stories of teenage silliness with her (much) older sister (that’s me). She also came home at 4:03 am (I still have the camera in the center hall). I sure wish I could have half the energy of my daughter/sister/bestie!

The last hurrah for Anna’s Magical June will be her birthday. Anna turns 17 on the 28th. In NJ, 17 means she gets her driver’s license. That chunky little peanut who used to snuggle safely in a car seat just a minute ago is going to be driving a car. It’s a little hard to imagine, but at least now I have a daughter/sister/bestie who can help me with errands and is also a designated driver!

All these significant events are to be celebrated, and I feel so lucky that Anna and I have a relationship that is so close, but as each of these events happens there’s a little stab to my heart. Prom, staying alone, senior year, driving – these are all milestones that Jack will never reach.

It’s hard, but so far I’m holding it together. Thank goodness I’ve mastered the ability to compartmentalize. It’s the only way I can survive. When I look at my daughter/sister/bestie, I try to clear my head of what ALD stole from Jack, and focus on how amazed and thrilled I am for her. So much of Anna’s life has been about Jack. It’s her turn to be the center of attention.

Besides venting a tiny bit here, I am going to do my best to continue to ignore that little stab to my heart. It might not be the healthiest decision, but I really want to avoid missing these celebrations by wasting time with the “If onlys”. Life is way too short and my sister/daughter/bestie needs me!

Love, Jess

 

 

Happy Father’s Day DanO!

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I would like to record what happens in Jack’s bathroom on Sunday mornings. It’s a routine that takes at least 40 minutes and involves laughing, singing and plenty of four-letter-words. Dan does it so that I can have a break from the morning routine, but I usually can’t sleep through the commotion. Instead, I lay in bed and count my blessings.

Dan has always been a hands-on father with both the kids. He once spent an entire night waiting in line to insure Jack got into our favorite pre-school, and coached Anna’s lacrosse team for so long that I sometimes need to apologize to her varsity coaches now for Dan’s sideline behavior. Even with all his business travel, Dan tries to make every home lacrosse game to cheer on Number 22 (Bananz/Anna) and schedules business around IEP meetings and important school events for JackO.

I sometimes wonder what our family would have looked like without ALD taking center stage. Would we have hung together so tightly or would we have gotten distracted by trivial nonsense and focused less on family? I can’t say for sure, but I can say that, no matter the reason, I do appreciate how close our little foursome is.

I get a lot of credit for holding up our house of cards, but the truth is that while I do my share, it’s Dan that really holds it all together. He knows what each of us needs. Heated discussions with Anna about political topics, snuggling on the couch with Jack watching his favorite Impractical Jokers. And, he is the calm voice of reason, balancing out my crazy. When I get stuck under my pile of Social Security/Medicaid/medical bills bullshit, he reminds me of what is important. AND that we are a family that survives, “Just take things day by day.”

This morning we woke up in Connecticut where we were visiting family. Despite a long night of festivities and it being Father’s Day, Dan still managed to continue his Sunday morning ritual – bathing, changing, toiling his eighteen year old son. It takes parenting to a whole new level. There is a fair amount of cursing that goes on in the bathroom on Sunday mornings, but there is also a song for everything. Not sure how you manage to keep coming up with new ones, but keep singing DanO!

Happy Father’s Day!

Love, Jess

I’d also like to mention two other remarkable fathers – Nonno and PopPop. We love you both!!!

Our (kinda) Skilled Companion

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Keegan is a Service Dog. To be exact, he’s a “Skilled Companion” which means that he has been trained to work with people with disabilities (JackO) under the guidance of a facilitator – that’s me. He was trained for two years by Canine Companions for Independence (CCI) and is qualified to be in public – wherever a human is allowed.

Today Jack, Keegan and I are going out to Long Island for our Public Access Certification Test. We will be meeting up with a CCI team and several other CCI graduates at a mall where they have us work for an hour to see whether on not we are still qualified (under CCI standards) for public access. I’m a little nervous.

I hope the folks at CCI don’t see this, but I am pretty sure we’ve ruined Keegan. Sure, compared to Finn (our other pup), Keegan is a star, but when I think back to the dog we brought home 7 years ago, I cringe. Keegan knew over 40 commands and did not need any guidance to behave perfectly when in public. Now he’s a very sweet, kinda smartISH pet.

I keep warning our CCI trainers that we may have gotten a little lax over the years, and that perhaps Keegan’s skills might be a little rusty. The team has been sweet, assuring me that they understand that Keegan’s primary role is to be Jack’s buddy. “As long as your team can be handled safely and appropriately in public you should be fine”.

Fingers crossed.

So why am I brining him? Because I am a rule follower AND because I feel that if I DESERVE to be scolded, I should be. A great deal of time, effort and money went into Keegan’s training. If we are falling short on our end of the bargain, I need to do what I can to rectify it. After all, I am the first person to judge people that take advantage of the rather loose definition of a service animal.

I am an animal lover and I know a pet can be a member of the family. I also know that many pets can be well behaved and probably wouldn’t cause much of an issue in public, but the training it takes to insure an animal is silent, respectful and helpful in caring for specific disabilities is huge.

If you buy a vest on-line for your pet so that he/she can accompany you on vacation, you are actually hurting people who can’t be independent without their animal. If your dog/cat/miniature horse/ferret does not behave appropriately in public, people start to complain that all service animals are just “pets with vests”. We don’t want laws to change regarding public access for service animals because so many people gain a huge amount of support and independence because of their four legged friend. I know for Jack, Keegan is primarily a best friend/furry pillow, but some people rely of their service animal for far more than licks and cuddles.

So we are up bright an early to drive out to Long Island. Keegan has been bathed, his nails have been cut and his vest has been cleaned. I’ve been working on “Wait” and “Under” and “Car” for weeks, and we are as ready as we are going to be. I will let you know as soon as soon as we get the thumbs up or thumbs down.

Love, Jess

PS If we do not pass, CCI isn’t going to put me in handcuffs and take Keegan away. They will work with us to regain what we have lost.

For more information about CCI go to http://www.CCI.org

 

UPDATE: We passed with flying colors!!!!!!!

 

#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