#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

Shame on you Facebook lady

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Yesterday morning, as I was wandering through Facebook, I stopped at a comment which started with, “To the person who stopped to yell at me in the parking lot . . .”. I had a few minutes to kill, and those posts are often fun to read, but as I scrolled down my blood started to boil. The person was complaining that she had been scolded for parking in a handicap space without the proper placard (or a proper DISABLED person). She went on to say how busy her life was and that she has used that spot every day for two years when she drops off her children at day-care.

Without much thought, I started my response. My hands were shaking and I had tears in my eyes. She had struck a nerve. I’m not sure exactly what I wrote, but I used the words, “shame on you” more than once. I hit send hoping that my words would make her think and realize the sin she had committed. Instead, I watched as she continued to make excuses and ultimately take down the post.

I’m going to give it another shot now that I’ve had a little time to regroup. I know it’s unlikely that she reads this blog, but venting always helps me feel better.

To the woman who posted on Facebook about being yelled at in the parking lot –

I wish you could understand that those of us who have the “luxury” of convenient parking wish that we did not qualify. It took our family years to come to terms with the fact that it was not safe to maneuver our son through parking lots. That our pride was putting our son in danger. We now appreciate knowing that we can find a parking spot close to our destination so that we can easily come and go – quick exits are often as necessary as easy entrances when you are caring for a person with challenges.

And, our family is among the “lucky” placard holders. We appreciate the safety of a close spot – the ability to limit the amount of steps (or hops) it takes Jack to reach wherever we are headed, but many of our friends are literally not able to park without the added space that a handicap spot provides. They are unloading large equipment – walkers, wheelchairs. There is no other option for them.

Handicap placard holders are not just driving around looking for parking. We are living full lives. We have deadlines and commitments. We are busy too. Accessible parking doesn’t just provide connivence, it provides people with disabilities (and their familes) some independence.

I remember my hands being full when my kids were little and I was late. I remember my back straining as I unbuckled the kids, grabbed the diaper bag and extra snacks while yelling, “Don’t move! Let me get your sister!”. I remember holding tiny hands and praying the rain would hold out just one more minute so that we could make it through the parking lot.

I remember those days, and all I can think now is just how easy it was.

Shame on you Facebook lady.

Love, Jess

 

First Twitter, now this

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It’s adorable. I keep finding my almost 50-year-old husband sitting at the computer yelling, “You’re not gonna believe who I just found!”

Dan has taken up social media. Perhaps it’s his version of a mid-life crisis. I’m not complaining — It’s way cheaper than a new car and much nicer (for me) than a young girlfriend. It started with Twitter a couple of months ago. He swears that it’s just for “real time news”, but he seems much more in the know about celebrity gossip these days. Then, over the weekend he asked me to help set him up on “The Facebook”.

I thought he was kidding. Dan’s not just been one of those people who didn’t care about “The Facebook”, he resented it. Dan’s old school. A vinyl guy who thinks that the written word (on paper, in ink) is somehow superior. He’s still offended by losing the extra space after a period and HATES that his daughter doesn’t use punctuation to complete a text message.

But, I was curious enough to see what Dan was planning, that I set up a page and showed him the basics. He dove right in. Within a couple of minutes, I could hear him from the other room – giddy as he found old friends. The sweetest thing I’ve ever heard. He poured through his friend’s pages searching for familiar names. He went from, “I’m just looking for some particular people.” to “Did you know how many people are on this thing?”

Downloading old pictures is where he is now. He started with a few family photos, but then he stumbled on some old albums. Now he’s reliving his youth, one photo at a time. Wilton days, Block Island shenanigans and college. Many of the images are not oriented properly and I did tell him that maybe he should make some albums so that he avoided taking up news feeds. “But WHO wouldn’t want to see this stuff?”

I felt like his mom yesterday when I sat down at the computer and found that his Facebook page was opened. It was like that day when I accidentally found that Anna left her iPhone at home (It’s not snooping, just checking). I looked at all the old photos – so many great memories, but there were a few pictures that made me pause. I gave Dan a call and suggested that some of the images might be a little inappropriate for a broad audience, “Dan, if you wouldn’t want Jack and Anna to see it, it’s shouldn’t be on Facebook.”

I’ve used a similar line with Anna, “If you wouldn’t want your grandparents to see it . . . “. It hasn’t always worked with Anna and I wasn’t convinced it worked for Dan, so I found myself doing a little “editing”.

When Dan got home yesterday he told me that he heard what I was saying and that there were a few pictures we was going to take down. I quickly confessed that I had already taken care of it and promised not to do it again, “Unless you start making bad choices.”

WHEN did I become this wife? If I’m not careful, he’s gonna unfriend me.

 

Love, Jess

Being “liked”

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Yesterday I went on Facebook and asked people to “like” Smiles and Duct Tape. I need to explain. I wasn’t asking people to “like” me (not really). I was trying to get more information about who reads this blog. WordPress give me facts about country/age/gender, but I’ve been curious about specifics. I’ve wondered how many were friends, family, Maplewood folks, ALD families, or random people who like counting their blessing that their lives are easier than ours.

As soon as I hit send on my status update, I thought, my family is really going to get a kick out of this one. I have a reputation for needing a lot of positive reinforcement, and this seemed to prove the point. I’m not sure where my insecurities stem from, but since I was a little girl I’ve always needed more than my share of pats on the back. Although I am holding to my “need for information” excuse, there might be a little part of me that wanted to know if my words are worthy.

The most significant reason I write is because it helps me to process this life. Finding the right words is like working on a puzzle. I sit down with something on my mind and write without much thinking – like throwing all the misshapen pieces on a table. Then I start to organize the mess. As I work, I see the picture start to form as the story comes together. I know when the piece is finished, because the picture is clear and I feel lighter. If I can explain what we are going through, it means I’ve solved that puzzle.

But it’s not just for me, I also write hoping that this blog helps other people. Whether they’re families like ours who are looking for their peers or “typical” families trying to better understand what it’s like to live in our shoes. I think people respond to the blog because it’s real stories about a real family. And, there’s nothing complicated about the way I write. I fell into writing without much training and hopefully that makes my style approachable (although my lack of schooling may explain part of my insecurity). A friend once said that she could hear my voice when she reads my blog. That was the best compliment I’ve ever received.

So I write for survival and to help others, but I’d be lying if I said that I didn’t care about numbers and compliments. I do look at the stats every day and smile when I see a new reader or another country pop up on my stats page. I do like when someone reaches out to tell me that they enjoyed my latest piece – like I’ve been able to create some good out of this nightmare we’ve been through. It doesn’t make it worth it, but it helps and I guess I am still that little girl who needs validation.

Smiles and Duct Tape received 130 “likes” yesterday. Thank you! Now, if you can hit “follow” on the bottom right corner of this page, I can really feel like this whole blogging thing matters AND I promise to stop begging for love for a while.

Love, Jess