Author Archives: smilesandducttape

a contagious mood, wet socks and a birthday

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The other night Dan and I had a moment.

Jack needed to be shaved. This is something that I don’t see – or I see, but I don’t care much about. As long as Jack is clean and clothed, I don’t worry about shaggy hair or a stubbly face. If anything, I feel like it makes him look like his typical peers. What 17-year-old boy is always clean shaven? I also don’t “see” the need, because I don’t want to.

Shaving Jack is a two person job. One person needs to hold him. Not gently cradle his arms, but forcefully pin him down, as he thrashes around like he’s being assaulted. The other person holds the electric razor, and does their best to hit all the necessary spots without doing too much damage. It’s a nightmare that I prefer to avoid.

Unlike me, Dan likes his son to be perfectly coiffed. Luckily, this means he usually takes the initiative, and does his best to recruit partners and leave me out of the rotation. Unfortunately, Sunday night Dan had run out of options and brought the razor into the kitchen as I was finishing the dishes, “Jess, it’s time.”

I’m not always as amicable as I make it sound on this blog. I have my moments. Sure, I helped shave Jack, but I did it with a long face and a bad attitude. Then I felt obligated to discuss why I shouldn’t be responsible for any razor activity, “I do most of the showering and diapering around her. Shaving is just something I shouldn’t need to do. You had all weekend to find someone to help. And, when was the last time anyone else walked the dogs (not sure why I had to throw this in)? This is NOT FAIR!”

There is nothing more contagious than a bad mood.

By the time we were done shaving, Jack’s mischievous grin had faded and Dan cleaned up the loose stubble without a word. NOT FAIR. That’s all I had to say to have each of us silently making a mental list of all the unfair crap that we need to deal with on a daily basis. We went upstairs to finish our nightly routine, feeling frustrated and sorry for ourselves.

Dan sat Jack on the potty, and we started getting ready for bed, both of us too upset to even look at each other. I threw on my PJs as Dan went into our bathroom to brush his teeth, “I’ll put Jack to bed.” I said as I trudged down the hall to get him off the toilet.

I walked into the bathroom and my socks knew before I did, “Guess who went pee in the potty! Or, not all the way in, but ALMOST.”

“Way to go JackO!” Dan hollered out from our room. I could hear the smile in his tone.

A little pee, and the mood was broken. Our family is complicated, but it’s okay — we just need a lot of extra socks.

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I put Jack down and crawled into bed next to Dan (after changing my socks). I gave him a huge hug. I am so lucky that he’s my partner in all this.

Today is Dan’s 50th Birthday! I know these big milestones arrive with mixed emotions, but I hope as he goes through the day, he realizes that he means the WORLD to us here at 26 Clinton Ave. He’s Anna’s hero, my best friend and Jack’s barber (and best friend and hero).

Love, Jess

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The mischievous grin

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I sometimes forget that Jack can’t speak. He’s very much part of the conversation here on Clinton Avenue with his bright eyes and broad smile. Days can go by without so much as a thought about his lack of words. Then, something happens that has me desperate to climb into that brain of his and get some information.

Usually, the need for intel is surrounded with worry, especially when there’s a something brewing in his health. Fevers, pain, lethargy – not knowing the source of the problem can be both frustrating and potentially dangerous. And, sometimes it’s that I know something has happened, but I can’t figure out how. Like the mysterious bite marks that Jack came home with a few years ago. I kept showing him pictures of potential culprits, as though they were mugshots and not pictures of his classmates. All I got from him was either a blank stare or a giggle (there was finally a confession and his bus assignment was switched).

Now, thanks to Jack’s whiteboard and pointing power, we are able to get many questions answered without too much trouble. He can answer “yes” or “no” and even “ears” or “throat” when he’s not feeling well. It’s making life much easier, but still the answers that require broader explanations are hard to obtain.

The last couple of days I have been curious about what’s going on in Jack’s mind. He’s had the most mischievous grin planted on his face from the time he wakes up in the morning until he goes to bed. Last night I checked on him in the middle of the night, and there it was. The grin. Even while Jack was sound asleep, it was shinning up at me.

Every time I mention the grin to Jack, it grows even bigger. I’ve asked him about school and girls and funny jokes. I’ve racked my brain and nearly worn out the whiteboard with all my questions, but Jack’s refusing to share any news. He’s such a teenager.

I was thinking about how unfair it is that he’s not able to share what’s sparked this glittery mood, when it occurred to me that Anna doesn’t always share her life with me either. I swear some days Anna seems to avoid even glancing at me, as though she’s worried she might accidentally let something slip. She’s a great girl, and I trust any secrets are of the pure/legal/good-kid variety, but still I’d love to get some nitty gritty details out of her. Getting information out of teenagers can be a challenge, and now both my kids seem to have secrets.

I’m sure my friends with teenagers can relate. Us moms aren’t always advisors, counselors, friends. We’re sometimes just the cooks, chauffeurs, and wallets as our kids tackle (or enjoy) their lives without asking us for any input. It’s natures way, I just thought that my complicated boy would not follow this path. I though he would always be willing to share whatever he could, but this week I think he’s enjoying having a little secret. He seems to love all my eager questions and watching me suffer from ignorance.

Not fair — I share all my secrets with him. Oh well, at least I get to spend time with the grin.

 

Love, Jess

Wandering through middle age

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Back from our trip, trying hard to hold tight to my mexican mood. It’s so much easier to define yourself as content and happy when your biggest worry for the day is where to go for lunch and whether you want a swedish or a deep tissue massage. I’m just hoping that my new outlook doesn’t fade as quickly as my tan.

My mood has improved dramatically since Dan and I went on our anniversary trip. Time alone with my husband in beautiful Tulum is just what I needed to bounce out of the hole I’d found myself in the last couple of months. Allowing others to take the reins also reminded me that we are not alone – we have people in our lives more than capable of helping out. Thanks Nonno, Mymom, Maria and Jeremy for holding down the fort.

During the quiet moments on the white sand beach, I had a lot of time to count my blessings and to contemplate what has been bothering me. The list is rather long, but the simple answer is CHANGE. We’re starting a new chapter. Anna is becoming increasingly independent and Jack too is growing up and requiring us to adjust – again. I need to prepare myself for this next stage so that I don’t get caught in another landslide. But how do I prepare? Making a plan is a good start, but that has me a little lost.

What/where/who/how do I want to be when I grow up?

I’d always thought that by 46 I would know who I was and would have all my ducks safely in a row. My life has taken some major detours, but I’m starting to realize that most people our age seem to be wrestling with similar feelings as they wander through middle age. I’ve been focusing so much on “poor me” that I hadn’t appreciated that most of my peers are going through similar issues. Knowing we are all going through this together makes me feel better.

The lives that we all envisioned rarely come to fruition. And, even if they do, they often look very different through older eyes. Besides, even if life took us just where we expected, we all have periods of change. Change can be exciting, but it can also be daunting.

Middle age comes with so many life changes. Preparing children to leave the nest or not (in the case of many special needs families and friends who didn’t have children). Career changes or the realization that projected careers never materialized. Grappling with how long to keep our homes full of memories but with taxes high enough to pay for a few European vacations a year. Whether or not to cover the gray or let nature take over.

All this crap is hard, but for me the realization that I’m not doing this alone is rather liberating. There’s safety in numbers. I’ll keep you all posted on any great ideas of how to soften the blow of middle age, but for now only one thing is for sure — Dan and I need to plan for more trips. There is something magic about having your feet in the sand.

 

Is there even a word in spanish for FUNK?

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My mood lately has been inconsistent. One minute I’m smiling through my day and then something will hit me – hard. It’s not that I’m buried in a full blown depression (buried in piles of laundry maybe), it’s just that I’ve been in a bit of a funk.

Once I was able to acknowledge the funk, I started working out ways to make life a little less complicated. I’m trying to avoid situations that might trigger my sour moods, I’m trying to make better choices (less wine, more kale – some days I’m better than others), and I am allowing myself to let go of some of the less-than-glamorous aspects of my life. Being a good parent doesn’t need to mean changing every diaper.

Dan and I have made time alone together a priority ever since life changed. We are determined that we will stay in the 10-20% , and being able to focus on each other for a few days (especially out of our element) helps. We are blessed that we have the means to travel and generous people who are willing to help, but I recommend that all couples try it, no matter your circumstances – even just a trip to the local Holiday Inn can allow you to reconnect;)

So, with the goal of reconnecting and to help me feel less overwhelmed about life, Dan and I planned a trip to Tulum, Mexico. We are celebrating 20 years of marriage (it was in June – it took us a while to pull the trigger). We had fun picking the perfect spot and my parents quickly offered to help out with the kids. Then, it was time to sit down and start planning being away for five days.

Ironic that a trip planned to help us relax, further proves how complicated our lives are.

My parents are very capable people. Not only did they successfully raised three children, but my mother is a PHD and has worked with The Red Cross for more years than I can count and my father is brilliant and has such a connection with Jack, that Jack starts laughing as soon as my father enters the door. It should be easy to just hand over the house keys, and let my parents dive in.

Only it’s not.

Although my folks have helped us out before, it’s been a while and the kids are at a different stage. They are teenagers. Jack is complicated and 17. It’s not just the medication and the diapers. Bathing and changing him can be a challenge – he’s strong and about as helpful as a stubborn cat. Anna is a sophomore in high school, with a busy schedule and an active social life social life. And, we have two dogs  – one goes by the name “Bad Dog”. Nothing is patricianly difficult, it’s just a lot of moving parts. Although we have our wonderful team of Jack helpers on board, it’s a lot to oversee.

I always leave a list with important information when we go out of town and this time, it’s managed to grow into a five page document. As soon as I think it’s done, I think of some other random detail about life at 26 Clinton Ave. I keep trying to walk away from it, but it keeps sucking me back.

We leave tomorrow (NOW TODAY!!) for Tulum, Mexico, which by all accounts is paradise. Five days alone with Dan on the beach is just what I need. And, as soon as our flight takes off, I’m sure I will relax, but until then I will continue to add to the never-ending list.

Thank you Nonno and Mymom for filling our shoes this week and sorry for the long list of crazy. There are really only three things that you need to remember – Jack needs his medication, Anna curfew is 11:00 and NOOOO people food for the dogs;)

Adios Amigos!!

 

 

 

Life is work.

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Every time I think I have a handle on this new life, it slips out of my grasp.

The last couple of months I have been getting a little cocky. Feeling like nothing was getting me down and I was managing so well. I got through the holidays without procrastinating on my Christmas cards or forgetting a gift. I was looking forward to my spring art classes with new lessons and an eager attitude. I was averaging 15,000 steps a day on my Fitbit. I even started a new writing class, determined that 2016 was the year of getting published. I was on top of the world.

Then, things started falling apart. I’m not sure what happened, but I am fairly certain that full hours were snatched from my days. I couldn’t seem to sleep enough or get even half of my “list” done on any given day. My pile of bills started mounting into a tower in the office. Laundry seemed to never leave the heap on the chair in our bedroom. The kitchen sink was always full. Every room of our house had a reminder that I was losing a battle.

What do I do when I’m overwhelmed and feeling nuts? I pretend. If anyone asks – “I’m doing great!”. I walk around with a big smile and hope that conversations don’t get too deep so that I’m not forced to reveal anything. The last thing I really want to do is to talk about feeling that I’m losing my grip. I’m Jesse – I’ve got this.

Of corse there are hints. I don’t return phone calls, I drink more than I should, I avoid anything involving intimate conversation. I can easily disguise my mood from most people, but my close friends and family usually pick up on the signals. Dan has been asking “You okay?” so much that I started feeling kinda bad for him.

Time for a change.

This week, I’ve been avoiding the vino, tackling the laundry, sorting through the pile on my desk and searching for whatever it is that’s gotten me out of sync. It’s going pretty well, but have you ever noticed that laundry and bills are never really done?

 

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One of the things I do to keep myself on task is I write with a friend every Thursday morning. She and I have been devoted for two years to our Thursday morning ritual of meeting online, selecting a topic and diving in to a 30 minute “flash” writing session. Once we’re done, we exchange our work and then catch up on our lives. She and I have become quite close, although we’ve never met in person (we met while taking an online writing course two years ago). I think sometimes those anonymous relationships allow us to be more honest. She knows almost as many of my secrets as Jack does.

Yesterday morning she asked if there was anything on my mind. “Keeping up with change” was the subject I came up with. It was easier to suggest than, “I think that life is swallowing me.” She and I each poured our coffee and told each other that we’d be back in 30.

The beginning of this piece is what I got through. I’m always amazed how writing can help me better understand what I’m feeling. Once I find the words, my mood always seems to improve. Now, I just need to sort through what put me into the sour mood so I can avoid it happening again.

The “C” word (college) keeps coming up and it’s certainly not helping, but I don’t think that’s all of it. I think I’m just feeling overwhelmed with normal, every day, I’m a grown-up shit. I won’t play the ALD card here.

Just because you have BIG crap going on doesn’t mean that the SMALL crap doesn’t bother you too.

My writing friend has a great way with words. She ended her note to me with “Life is work, and boy does that work take time.”

Indeed.

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

A dead iPhone and a new goal

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Thanks to a dead iPhone, I finally have my goals set for 2016.

I only read books in the summer. I need to be in a folding chair, with sand between my toes, sun on my shoulders and the sound of the ocean in the background. I’ve tried to read at home in front of the fire, but I instantly fall asleep. And reading in bed doesn’t work for me either. The bed is for other activities — like television.

Of course I read a ton of blogs and magazines, and I never let my need for sand hold me back from the latest bestseller. When I’m not on the beach, I listen to audiobooks as I walk. It gets me and the dogs out of the house, puts steps on my fitbit, and lets me get lost in a good story. It also allows me to avoid too much thinking. I like to leave wandering thoughts for when I sit down with my journal or this blog.

This morning something horrible happened while I was out on my walk. Two miles from home, my iPhone died. I stopped in place, staring at the screen and didn’t know what to do. I thought about calling Dan to pick me up, but my iPhone WAS DEAD! Two miles takes me about 40 minutes. 40 minutes to think. I took a deep breath and decided I would take the opportunity to think about my goals for 2016.

The usual suspects came easily to mind. More walking, less drinking, getting published (my fingers have been crossed for so long that it hurts), less carryout, more kale. This list took me less then a minute. 39 minutes to think a little deeper.

It took a while, but I think the walk allowed me to come up with something. Here it is – my goal for 2016 – SLOW TIME.

I’ve spent most of my life looking forward. Looking forward to the weekend, to the next vacation, to the next paycheck. I would like to start living more in the moment. Appreciating every slow Tuesday and every quick conversation and every little hug — especially from my kids.

When Jack and Anna were babies, I felt so buried in sore boobs and laundry that I loved hearing from older woman who told me that “the years would fly by”. That sounded pretty good to me. I fantasized about the day that I could throw away the pacifiers and rid of the baby gates. Once that day arrived, I looked forward to the first day of preschool and watching the kids learn to read. That day came and went and  I was already gearing up to lose the carseats and start planning adventurous family trips.

Life, of course, didn’t follow the path exactly as expected. It wound around and filled with experiences. Not all were welcome, but I proud of where we are. Now, I find that I’m on the other side of the “years flying by” equation and I’m worried that it’s all going too fast.

I’ve got two teenage children with very different futures, but they are both speeding towards adulthood. Jack’s cord may stay closer to home, but even he will find some sort of independence. My days of raising little (big) kids is numbered.

My goal for 2016 is to learn how to slow the momentum. I think I can do this by learning to breath and taking time to appreciate more. Probably not every moment, but all the moments that don’t include poop or sassy teenage chatter (although if Jack wants to give me some sassy teenage chatter, that’s okay).

Love, Jess

HAPPY NEW YEAR!!

 

The Skimm and the Panda

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Yesterday morning, The Skimm brought me an early Christmas present.

I get most of my news from the morning talk shows. A sound bite of serious, sprinkled within hollywood gossip and seasonal recipe ideas. It’s about all I can handle, but several months ago a friend recommended I check out The Skimm. Perfection. It’s an email that arrives every weekday morning with the important news stories of the day. It’s written like a friend is telling me (for the “Jesses” out there, not the “Dans”). No Skimm on the weekends which makes it even better – who really wants news on the weekends?

Our weekday morning routine is nuts here. We rush around, as if the school bus arriving is the strike of midnight and we will turn into pumpkins. Showering, toileting, eating, medicating, hydrating, brushing and tackling Jack’s “special shoes” onto his “special feet”. When we are done, Jack and I relax, plant our bottoms on the stairs, and open up the Skimm. Jack sits up straight, puts his arm around my neck and we read the news for the day.

Yesterday, among the clutter of news about the fight against ISIS, E.coli and gun control (pro gun control/con ISIS and E. coli), was a story about THE PANDA IN THE SNOWMEN. Finally, I understood what I’d been half-hearing all morning on the Today Show. I double clicked the link so that I could check it out. I’m not great at getting through a newspaper, but I am good at puzzles and within a minute I saw him. “Jack I see the panda. How about you?”

I pointed my finger, which he took without hesitation, and he pointed directly at the panda. Seconds. Amazing.

I know that some of you are thinking that it’s cheating because I let Jack use my hand to point. I thought the same thing when the school told me that it was their latest technique for having Jack make choices. I figured that it was like using a ouija board and that whoever was in change was subconsciously directing. I assure you that it’s not. Jack is quite clear about his intentions. And, Jack quickly saw the panda.

A friend commented to me that the trick with those types of puzzles is to relax your eyes and not stress. No wonder it came so easily to Jack. Jack lives his life fully relaxed and with no stress. We should all be so lucky.

MeRrY ChRiStMaS EvE!!

 

Love, Jess

 

Kids these days

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Here I go again. Another story about Anna.

I do sometimes worry that we are putting her on a pedestal so high that if she falls, it might really hurt. That she feels pressure to always be the best hoping to balance out our family’s circumstances. And, that some day she will decide that it’s not worth it and turn in her flawless GPA for . . . I don’t know, something bad.

But then I look at Anna and I know that, although she enjoys her parent’s praise (and the accolades from people who read this blog), she also really does like school and sports and giving back. And, that while she is wonderful, she’s still a teenager and has proven that to us in the last several months (maybe someday I will take a moment to list her less-than-perfect exploits so that people can feel better. Anna is human).

Anyway, I can’t NOT share what our daughter is doing these days. It’s just too great and very relevant to our “journey”.

Anna and her friends have taken over Boxes of Fun and are eager to take it to another level. I’ve loved the simple, homegrown family project, but I’m thrilled at Anna’s initiative and I’m okay with letting go of the reins.

Here’s a little back story on Boxes of Fun.

When Jack was first diagnosed, our friends swung into action. Dog walks, meals delivered, Anna entertained. At some point some friends even ripped out old carpeting and painted Jack’s room. It was incredible. And, as Jack prepared for his transplant, we started to hear rumblings about a magic box.

Jack’s Big Box of Fun was spearheaded by our dear friend, Kim Vivenzio. Kim was not just a “love aunt” to our kids and a “love sister” to me, she had a unique perspective to what our family was going through. Several years before, she received a stem cell transplant.

Her experience allowed her to help us on a profound level. She was able to explain the particulars of the treatments that Jack was going to face and strategies her family used to survive. She also shared some of the amazing things that she experienced during that time. One memory always brought a smile to her face — her friends and colleagues had made her an amazing box filled with goodies. Sharing how much it had meant to her, Kim got the idea to make a box for Jack.

Kim is not a woman who does things half way. She started to organize “Jack’s Big Box of Fun” with the help of a gaggle of friends. A huge box was decorated, filled with piles of presents from friends and family and delivered the day after we arrived to room 505 at Columbia Presbyterian Morgan Stanley’s Children’s Hospital.

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Jack’s Big Box of Fun was the centerpiece of room 505. Even days that Jack was too sick to play, our family had a wonderful distraction sitting at the foot of his bed.

As Jack recovered, our family was eager to give back. We wanted to help other families who were going through the hell of transplant. The Box of Fun had been such a light in our room that we decided we needed to share this light.

With the help of the Childlife team at the hospital, we started donating individual boxes to the kids on the transplant floor. It’s been a very homegrown way for our family to give back. Along the way, the community has helped out. Donations have been made by friends and family. We’ve received piles of gifts from children — donating to celebrate their birthdays or for the holidays. We’ve had local businesses donate. We’ve had friends as far away as Block Island, Pennsylvania and Massachusetts host toy drives.

Anna has grown up with Boxes of Fun and as the years have gone by, she’s become the primary decorator and gift selector (I’m apparently lame about what kids want). Last year, she and her friends organized some drives and this year they’ve made it into an official club at her high school.

They’ve been busy Tweeting, Instagraming, and Facebooking. Raising enough money and awareness that they’re hoping to expand Boxes of Fun to a few more hospitals by spring. I’m so proud of this crew of amazing teenagers.

This weekend they are bagging groceries at a local store — SHOP RITE IN SPRINGFIELD (please come by tomorrow). I spent the day watching as they bagged groceries, raised money and shared the history of Boxes of Fun. I am a very proud mama.

Kids these days – THEY’RE INCREDIBLE.

Love, Jess

PS Kim is celebrating her 20th transplant birthday next year. That’s gonna be a great party!!!

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Time and a little innocence

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I was talking to a mom yesterday who’s struggling to find peace with a difficult diagnosis. She asked how I stayed so positive. I hear this sometimes and I wonder if I shouldn’t post a youtube video of my less-that-positive moments. I have them — trust me.

While I’m not always the picture of positivity, most days I am optimistic. After all, we’re lucky for a bunch of reasons. For one, we have a son who never complains. Not just because he can’t speak, but because he is the happiest person on the planet. We are also blessed with a daughter who never spends a moment questioning her family’s situation (she does question some of my decisions, but nothing having to do with Jack). Our “special” family also had one advantage that not all “special” families are given — time.

When we started our new life we didn’t know we were starting a new life. Our family assumed that we were living a dark chapter and that we would one day return to normal. We got it wrong and I am grateful for our innocence.

Eight years ago I don’t think we were prepared to accept a world that looks like ours or understand that our family could thrive under our complicated circumstances. Instead, we grew into our new life little by little and it’s worked out well. As the mom, I needed every minute of the eight years I was given to process this new reality. It’s far easier when information trickles in, than when you’re hit by an avalanche.

Jack was diagnosed with ALD before social media. Yes, there was the internet to track down information about rare diseases, but there were not online communities to join. I know, because I tried. I did find a few other families who were battling ALD and we grew close, but now newly diagnosed families can find their peers by simply typing “ALD” into their Facebook search. Within seconds, they’re connected to dozens of families willing to share their experiences.

It’s wonderful for people to know that they are not alone and to acquire information, but I worry that a heap of details about a disease like ours might be overwhelming and discouraging. I’m not sure how I would have reacted if someone had described what our future would look like when I was still processing the diagnosis and treatment.

I’ve shared our family’s journey publicly for years, and many ALD families have reached out. I hear the silence on the other end of the phone (or the keyboard) following a quick description about how “GREAT Jack is doing.” The word “GREAT” is following words like transplants, diapers, g-tubes, seizures, non-verbal, etc. I try to rewind and point out all the things that Jack is still able to do, “Jack can still see, hear, walk, laugh.” The silence continues.

Eight years ago, if some mother tried to tell me that her son was doing “GREAT” because he could still see, hear and walk, I would have slapped her.

As I tried to reassure the young mother yesterday, my heart went out to her. This world full of information is a mixed blessing. While I was impressed with her determination and knowledge of her child’s disease, she was getting buried in facts and statistics and details.

I kept trying to find the right words to make her feel better. I told her to stay strong, find a team of experts, pray if she is lucky enough to have faith, and breathe.

Knowledge is power, but sometimes I think that a little innocence is not such a bad thing.

 

Love, Jess

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