Category Archives: ALD

a happy, positive, crazy lady, with plenty to cry about.

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As I got into the car, I found myself weeping. I was glad there were no witnesses that might decide that it was finally time to check me into an institution. Why was I reacting with tears? I had a armful of flowers and lipstick smudges all over my face, marking the love of my friends and family. I’d done it. I’d managed to share my story with an audience without completely crumbling. There was a little crying, a few long pauses and some questionable ad libs, but I’d done it. Yet, there I was, sobbing and then cackling all the way back to my house. The five minute drive from the theater, with it’s manic mix of tears and laughter, might be an accurate description of who I am. I’m a happy, positive, crazy lady, who has plenty to cry about.

I’m not masking dark pain with my smile when you meet me. I’m genuinely a cheerful person, and when I say things like, “I’m lucky” I mean it. I won’t trade my life with any of you. I’ve been married to my best friend for almost 20 years and we’ve made two extraordinary children. Yes, I wish their lives were not touched by ALD, but I am grateful that they are each doing so well. We are surrounded by friends and family who hold us up when we need it and are always ready to celebrate the good times (the after-party ended at 2:00 am on Sunday morning). This crew is also an incredible assortment of interesting, loving, talented people who I’m honored to know – the cast of LTYM is a welcome addition to the pile. Our town, our house, our stuff — that’s gravy.

The challenges our family has faced have been horrific, but we’ve survived and managed to create a life that works. We are thriving and healthy(ish) and we don’t waste too much time focusing on the negative. I admit to acknowledging it occasionally (like releasing a poison – worried that if I don’t, it might kill me), but quickly try to go back to enjoying life. I hope the piece I shared on Saturday showed both sides of our family. It was about a reoccurring dream I have where Jack starts speaking. Not having heard Jack’s voice for seven years is the sad part of the story. But, if you can wipe away that detail, the story is about a family who has dreams that might never come true, but gets up every morning and enjoys magical smiles and laughter. THAT is the story I was trying to share.

I think the tears in the car were my letting go of the WHY I had a story to share and the laughter was that I shared the FUCKING STORY!! I also think the wild emotion was a result of adrenaline, exhaustion and that I am a little crazy.

Anyway — It’s over. Listen To Your Mother was one of the coolest experiences of my life. Not just getting the opportunity to share a part of myself, but being in a cast full of talented, amazing people and being part of something so much bigger than our individual stories. It was celebrating Motherhood. Motherhood is full of dreams, disappointments, tears and tons and tons of laughter. Thank you to everyone who came (and for everyone there in spirit) and for all the support and encouragement. Now, I promise to stop talking about it;-)

Love, Jess

One last thing — SOPAC has a Green Room and dressing rooms with lights around the mirrors. So cool.

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a pain in the neck.

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Jack is killing me one hug at a time.

Jack’s hugs are legendary. They’re intense and over-powering. He doesn’t just hug with his arms. He uses his whole body – his whole soul (if you believe in that kind of thing). Generally, these hugs are encouraged and stolen as often as possible. Something I look forward to as I get him out of bed each morning and as he steps off the school bus in the afternoon. But, this week I am avoiding them like the plague.

I woke up last Friday with a little crick in my neck, and by Saturday afternoon I found myself on the living room couch, crying to my mother on the phone because I was having trouble getting myself up. Dan rescued me and took me to the doctor. With a shot in the ass (not sure of what – I didn’t ask too many questions), and a pile of pills, I was sent home and told to “take it easy for a few days.”.

If you know me, you know that those are welcome words. Binge watching bad TV without guilt, generally would sound like a mini-vacation, but I wondered if the doctor really understood my ability “to take it easy” and the hidden dangers that lurk in our house.

Luckily, it was Saturday and Dan and Anna are unbelievable caregivers. They took charge of the dogs and the cooking, and set me up on the couch with a heating pad on my neck and my feet up. I was on a cocktail of valium, steroids and muscle relaxers and was finally able to forget about the pain and focus on the horrors (and blossoming love) unfolding in the Foxworth grandparent’s attic.

Jack was my partner. He loves nothing more than hanging with his mama on the couch and never complains about my choice of viewing (one of the benefits of having a non-verbal child). But sitting quietly on the couch watching Lifetime’s attempt at the Flowers in the Attic trilogy was far from relaxing. Jack would throw his leg on my lap, making me move and sending a spasm to my neck. Then he’d grab my arm causing the same reaction.

It happened again and again and I started getting frustrated, which made Jack sad. I could see him trying to figure out what he was doing wrong and how he could fix it. Suddenly, his beautiful brown eyes locked on mine and he knew what he needed do to make his mama feel better. He went in for a hug. Unbearable pain!

It’s been days, I’m off my medicine and feeling much better, but every time I see that look in Jack’s eyes, I get a little nervous. It’s going to be a few weeks before I can trust those arms around my neck again.

Love, Jess

Here’s just one example of the intensity of a Jack hug. Be warned.

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non-flossing, slacker mom

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jackOOO

How many of you floss every day? Be honest. Don’t give me the answer you tell your dentist. I want the truth. Do you floss daily or a couple times a week when you’re given the luxury of an extra few minutes in the bathroom? Now, I want you to picture flossing a sixteen-year-old boy. A strong teenager who doesn’t follow directions and is not afraid to bite.

I wrestle with Jack every morning. Literally. Getting Jack ready for school is a work out (I have 2000 steps on my Fitbit by 8:00 am and toned arms to prove it). It’s not a routine that I resent, but it’s not a part of the day that I look forward to either. And, I’m certainly not anxious to add anything to our morning regimen.

I get Jack out of bed at 7:00 am, lead him to the bathroom and sit him on the toilet. I give him some time alone, while I throw his sheets and PJs in the wash (a daily requirement following what Dan and I refer to as Jack’s nightly “pee pee party” ). I return to the bathroom to shower, dress and pin Jack down to put on his deodorant. The last thing we do before heading downstairs is brush his teeth. By this point, I’m usually glancing at my watch, counting down the minutes before the bus arrives. We still have medicine, hydration, breakfast and his leg braces to deal with.

Some mornings I do pause long enough to hear the words of his dentist whispering in my ears, “You really need to floss his teeth every day.”

Jack has a dentist, an oral surgeon, an OT, a PT, a speech therapist, a pediatrician, an endocrinologist, an orthopedist, an ophthalmologist, two neurologists, and ALD specialist. Each of them provide me with their own list of daily obligations. There is no way that we could incorporate everything into our schedule. My job is to pick and choose which of these obligations are necessary, which are a good idea when we have time, and which are ridiculous under any circumstances. Of corse, I’m not always completely honest with our choices.

“Yes, we floss every day. It’s a little tough to get in there, but that doesn’t stop me.” Is my usual answer when we see the dentist.

I tell our doctors exactly what they want to hear. I want them to know we appreciate them and respect that THEIR specialty is what is holding our little man together. I need to feel secure that if we ever reach out for anything, they will pick up the phone and not think of me as the non-flossing, slacker mom.

I love being Jack’s mom. I also love being Anna’s mom, and Dan’s wife, and a daughter and a friend. I like walking, teaching my art classes and writing in my blog. I might even enjoy going out, eating rich food and drinking too much wine. I’m not a model parent. I’m just a normal parent, trying to balance what’s necessary to keep my kids safe, my family happy, and me sane.

I’m just hoping that I’m not alone. Please tell me that I’m not the only person who doesn’t follow all the rules. Jack rarely gets flossed and he never uses his leg braces on the weekends. My dogs sometimes miss their monthly dose of heartworm medicine. Anna texts while doing her homework and I always let her break curfew if she has another parent willing to drive her home. We order chinese food at least once a week and I buy those “ready made” salad mixes. The TV is often on when we eat dinner (around the island in the kitchen, with paper towels as napkins). I could go on and on, but I don’t want you to judge me  — too much.

Love, Jess

I’m heading to my own doctor next week. I can already hear myself, “Social drinker? One or two glasses of wine . . . on weekends? That sounds about right.”

listen to your mother

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Announcing-LTYM-North-Jersey-Cast

Generally, I do my best to avoid failure. I rarely set myself up for disappointment. But, thanks to the encouragement and support of a good friend (actually a huge pile of friends and family, but one friend who actually sent me the link and twisted my arm a little), I went out of my comfort zone and auditioned for LISTEN TO YOUR MOTHER – a live production (hosted in 39 cities across the country) celebrating motherhood. An incredible event where a cast of local writers share their stories “ . . . on the beauty, the beast, and the barely-rested of motherhood, in celebration of Mother’s Day.”

I went to the audition to prove to myself that I could do it. If sharing our family’s story is the goal, I need to start taking some risks. Knowing the caliber of the cast last year, I doubted that I’d be considered, but needed to give it a shot.

I left the audition sweating and wishing that I could have a do over – an opportunity to read the piece again, minus the tears and the shaky voice. Writing alone in my den and hitting “send”, is very different then sharing the words out loud. But, I did it. I stood up and shared a piece of my writing about my family, my boy and a reoccurring dream.

Returning home, I was proud of my attempt and already considering what I could submit next year. When I got the call that I’d been selected for the cast I was shocked. Literally, I found myself running around the house like I’d just scored a prom date. It’s been over a week and I’m still overwhelmed by the news. No disappointment this time!!

Buy your tickets now. Seriously, it’s almost sold out;-) YIKES!!!!
http://listentoyourmothershow.com/northjersey/

Love, Jess

We love CP.

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IMG_2586It’s been a while since I’ve felt that people were watching us. The kind of watching that people do when they are trying to be subtle.

My only explanation is that Jack was looking particular “normal” yesterday (am I allowed to use that word?). He was wearing over-washed jeans and a sweater with a tee-shirt poking out of the top. He had on hiking boots instead of his usual school footwear (which include brightly colored leg braces) and he was in desperate need of a shave. He looked like an average teenage boy.

We walked into the doctor’s office without drawing any attention. Before checking in, I walked Jack over to a chair, took off his coat and guided his rear onto the seat. This action requires me to literally bend him. The only person who noticed the routine was a young boy playing a video game across from us. As he watched me settle Jack down onto the chair, he made a face and grabbed his mother’s arm, “What’s wrong with that kid?”

“Shhhhhh.” she answered too loudly, “Stop staring.”

Suddenly, everyone in the waiting room was trying not to stare at us. They quickly looked down at their magazines or phones as they kept one eye in our direction. I could almost hear their minds racing as they tried to figure out what was with wrong with this seemingly normal teenager. Just as I was getting ready to give a little explanation to the group, we were told the doctor was ready to see us.

As the nurse ushered us into the examination room she proceeded to have an entire conversation with Jack without noticing that he didn’t once answer any of her questions. I guess she was used to over-zealous mothers doing the talking for their sulky teens. It wasn’t until she told Jack to take off his shoes and hop on the scale that she seemed to acknowledge that Jack was “complicated”. As I knelt down to pry off his boots she said, “I have a cousin with Cerebral Palsy.”

Jack often get’s mistaken for being Autistic, but this was new. Without thinking I blurted out, “Jack doesn’t have CP. He’s has Adrenoluekodystropy . . . and Addison’s and Epilepsy, but not CP.”

I suddenly worried that I might have insulted her (and/or her cousin), so I continued, “Not that there is anything wrong with Cerebral Palsy. Jack has a lot of friends with CP. In fact, my sister-in-law has CP . . . We actually love CP.”

The awkward silence that followed was painful and I tried desperately to liven up the room by telling Jack ridiculous jokes. This only made things worse and as the doctor walked into the room the nurse left quickly and I could have sworn I heard her gossiping about our conversation with the other nurses in the hallway.

We saw the doctor and left the examination room eager to leave this errand behind us. We walked down the hallway toward the waiting room trying not to make eye contact with any of the nurses (all of whom were doing their best not to stare). As we checked out, we were met with another unsuspecting person who glanced up at us. Jack was standing with his arm tightly around my neck – a stance that I am very used to, but might seem rather peculiar to a stranger. She just smiled and said, “You are so lucky that he still loves on you. My boy won’t give me the time of day.”

I took a deep breath, preparing to go into my explanation about Jack’s challenges and inability to respect common boundaries, but then I thought better of it. “Yes. I am lucky.”

Love, Jess

Words

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jacks smile

I’m sad to report that we didn’t win the lottery last night. I’m not sure why I’m always surprised when our numbers don’t match. A feeling of disappointment comes over me when we need to reshelf our “early retirement, Block Island dream house, pay off everyone’s mortgage” plans. Truthfully, money isn’t even what our family dreams about most. Our real dream is for words.

A friend of mine posted a question on Facebook yesterday, “If you could have one free day of any illness, what would you do?” THAT is a lottery that our family would love to win! I spent only a second before answering, “We would listen to Jack’s stories all day long.”

Jack does not speak, sign or write notes. Not only do I miss hearing him say “I love you Mommy”, but his lack of speech makes certain situations particularly challenging. We were at the hospital two weeks ago with Jack. He was clearly sick and not able to tell us what was bothering him. Not knowing if it was his stomach, his throat or his ears created the need for additional tests and extra worries. Even on a typical day Jack’s silence is complicated. His inability to call out if he needs us in the night sets Jack apart from even a young baby.

Strangers often have a difficult time understanding. They assume that his speech is limited or difficult to understand. I try to be clear, explaining that the only sounds Jack makes are sneezing, coughing and laughing.

“But how do you know when Jack’s hungry or sad?” I try to explain that although he can’t be specific, Jack is able to communicate most of his needs without words. When he locks his eyes on yours he is able to be quite clear. I’m not really sure how he manages this, but people who love Jack learn quickly how to read his eyes and his silence becomes less quiet. While he might not be able to tell you when he has a sore throat, he can fill a room with stories without saying a word.

It doesn’t mean that we are content with Jack’s silence. Seven years after ALD stole his words l still dream of hearing them. Dreams so realistic I can still hear the sound of his voice when I open my eyes. It’s hard to wake up smiling only to realize that it was just a dream, but I won’t trade those magical moments for a winning lottery ticket (even the $485 million variety)!!
Love, Jess

Jack does use an iPad and (mostly at school) has some success answering questions AND Jack is able to sigh one thing — I LOVE YOU.

a job, a dad, and a beard

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beard family

Big day here at 26 Clinton Avenue, and I’m not referring to the snow day. Today, after seven months at home, Dan went to work.

Working in finance it’s almost expected that you will be let go, downsized or simply fired at some point in your career. Its often not a reflection of your work ethic or knowledge base, it’s just that companies change their strategies or decide that someone is easily replaced with a cheaper version. Dan and I have both known it was a possibility, but have always been lucky to enjoy the security of consistent paychecks, fun bonuses and good medical insurance.

When Dan first got let go, it did take me a little while to put it in perspective. Our family has certainly had worse days (heard worse news), but the news of Dan losing his job shook my foundation. Dan’s job has always been a stable structure in our percarious house of cards. We’re not so well off that we aren’t aware of money, but it’s something we don’t need to worry about often. We have enough. Enough to pay bills, enjoy vacations and pay for help that allows me to breathe. Money makes our lives easier. I know this, because I know many families with complicated lives that don’t have any. It makes difficult circumstances, more difficult.

Although those first few days after hearing the news I did feel the unease of not knowing what to expect and feared the possibility of losing our security, I wasn’t as panicked as I would have imagined. My confidence in Dan, our families resilience and our savings allowed me to keep my perspective. Dan put me further at ease when he explained the generous package that his company had offered. Not a “golden parachute”, but solid silver. And, a package that included a “garden leave”.

Although Dan managed to secure his next job quickly, this “garden leave” required him to stay out of his industry for a period of time. “Garden leave” protects companies from having their ex employees hitting the market quickly. It meant Dan got to enjoy all the perks of working (salary, benefits, etc) without working. And, he got to spend the last seven months going through our family weekday routine – a routine that he has never had the opportunity to truly witness. I thought it would be tough adding Dan to our days, but it’s been wonderful. He’s been great company, had meaningful time with the kids, and has enjoyed hiking, reading and growing his beard.

After seven months, it was strange to see him put on a suite this morning, and kiss my forehead with his freshly shaved face. Strange having breakfast without him. The house seems oddly empty without his music playing and offers to do the grocery shopping (and shoveling). It’s going to be an adjustment, but we’re ready and grateful that we had this break. I’m so glad I didn’t waste too much time worrying.
Love, Jess

Just a crappy day.

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water

I thought I was imagining something when I first heard the water, but then I felt it. A little drip that quickly turned into a gush. Within minutes it sounded like a river was flowing down from our washing machine (on the second floor). Water pouring out of the mudroom ceiling and quickly covering the tile floor. At first Dan and I just stared at the water yelling four letter words – as if they would somehow seal the the pipe. “We need to turn off the $%^&ing water!” finally got me to move.

I ran to the basement and my socks told me that the water had already found its way downstairs. I remembered a contractor once showing me where the water shut off valve was, but with the sound of water it was hard to concentrate and there are a whole lot of valves in that front utility closet. It took me a few minutes, but finally I held my breath and turned the blue valve. Instantly, I heard the sound start to taper off.

I always though there should be a rule that if one part of your life is complicated that everything else should fall into place. Unfortunately, life doesn’t work that way. Life can give you more than you can handle. Bad things happen to good people. And, I really can’t imagine there is some “great plan” that includes diseases like ALD and pipes bursting.

That’s my truth. Life is hard and not always fair. I’m jealous of my friends and family who believe otherwise, and have I’ve tried to adopt their faith, but I tend to go back to the “life (nature) is often cruel“ approach to life. But don’t think that my reality means that I walk around the world assuming or expecting the worst. My approach actually allows me not to take things personally or spend much time asking WHY. It’s just life. Sometimes we get dealt a bad hand, sometimes a winner. I try to do the right thing because it seems to stack the odds better for people around me. And, I surround myself with people who do the same. I also try to really appreciate the good times and not take things too seriously.

After our water crisis, Dan and I took a few minutes to feel sorry for ourselves (we may have even revisited some four letter words), but the conversation quickly turned to “how lucky we were that we were home” and “how much worse it could have been” and “thank goodness for good insurance”. We spent a few hours pulling up carpeting, drying off walls and setting up dehumidifiers. The plumbers finally came, were able to isolated the broken pipe and restored the water to the rest of the house. They apologized as they explained that it would be a few days before they could do the repair work (century old homes and 10 degree temperatures are great for the plumbing business). They also said that we should call our insurance company, “I’m really sorry, but this might get complicated.” Dan and I just looked at each other and smiled.

When you have lived through truly horrible days you recognize a simple, run of the mill, crappy day for what it is. Friday was just a crappy day.

Love, Jess

GivingTuesday

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smiles

CPNJ / Horizon High School asked us to make a donation on #GivingTuesday and to take an “UNselfie” sharing what inspired us to donate.

“What does Jack do at school?” is a question I’m often asked. I usually answer, “Jack does what every other 16 year-old boy does – he hangs with his peeps and flirts with pretty girls.”

In fact, Jack does a lot more at Horizon High School. He gets therapy (PT, OT, and Speech). He has classes in Science, Career Skills, Social Studies, Language Arts, Life Skills, Drama, World Cultures, Art, Music, Technology, and Math. He works at the school store. He participates in modified sports. He attends dances and parties and plays. He goes on field trips to Trader Joes to practice “appropriate behaviors” (although I think that might be more hanging and flirting).

After The PG Chambers School we were concerned that we wouldn’t find a good fit for our boy as he entered his high school years. There are no schools for ALD boys post transplant – no schools designed for handsome young men who understand inappropriate humor but can’t speak or reliably use the bathroom. We did find several schools that could handle Jack’s needs but Horizon had something that the others were missing. They approach school the way that Jack approaches life – with GUSTO!

Cerebral Palsy of New Jersey (CPNJ) runs programs for people of all ages with all sorts of “complicated” issues. And, they treat each of those people with respect and devotion. Monica (Jack’s one/one aide and a friend) often sends home pictures of Jack during the day. Whether it’s him in the classroom, planting in the garden, or rockin’ out at a dance party he always has a huge smile on his face. THANK YOU CPNJ FOR CONTINUING THE SMILES!

http://www.cpnj.org/givingtuesday

Love, Jess