Tag Archives: ALD

the weather inside is frightful

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I hadn’t realized how hot the house had gotten until Dan got home and questioned why it was 89 degrees in our bedroom. I thought I was sweating because of all the adrenaline following the Blogher15 Conference. I checked the thermostat and sure enough, something was wrong.

A series of fiddles and phone calls and it was confirmed that the central air was indeed broken, “Sorry lady. Just turn it off and we’ll see you in the morning.”

I knew this news was not going to go over well, and struggled to keep a smile on my face.“Won’t it be fun to camp out in the basement? It’s nice and cool down there.”

I would love to share that my entire family was excited and happy with the situation. I can’t – we are a NORMAL family. There was a lot of storming around the house and dinner was completely silent (following the rule that if you can’t say anything nice, don’t say anything at all). We did manage to get the basement set up without killing each other and then discussed bed assignments. The original plan was that Dan and I would share the pull-out couch, Jack would take the blow-up bed and Anna would sleep on the floor. She’s heading to Outward Bound next week and it seemed like good practice.

An hour into our camping trip, I realized both of the children were still awake and I told Anna to take my spot. I would share a bed with Jack to try to calm him. Jack doesn’t have the ability to easily shut down for the night. He gets distracted and fidgety. Brain damage is strange. I spent the next several hours trying desperately to get Jack to go to sleep. Just when I would think he was out, he would sit up and attack me with his elbow, leg or his entire body. At one point, he fell asleep with his body folded completely over me. I was so tired that I just let it be and closed my eyes. When I woke up a couple of hours later, I realized that he had peed on me.

I know that more than one of you are saying to themselves, “Last time I hung out with Jess, I did notice that she pees an extraordinary amount . . . maybe . . . ”

It’s true. I am a pee-er (spelling?). I’ve been told my issues are a little gift from the ALD gene. Woman (generally) don’t develop major symptoms, but they do tend to receive an assortment of little reminders that the gene is lurking. I don’t have much to complain about. Some numbness in my feet and a bladder than doesn’t work perfectly. My Fitbit tells me I wake up 4-5 times a night and walk approximately 170 steps. During the day can be even worse. My family is accustomed to many unexpected stops while on the road.  Dan knows to ask, “Should I wait for the next rest stop or just pull over?“  – I always have a roll of toilet paper handy and my husband it a good man.

I do admit to my “issue”, but last night was all Jack. I still love the boy, but I don’t like being peed on.

Love, Jess

the talking dream

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I remember the first time I heard my voice on my father’s mini-tape recorder. I was about four, singing Itsy Bitsy Spider. It sounded so strange. He’d taped me just minutes before, but I still questioned if it was really me. Although we live in these modern times full of videos, I’ve managed to avoid them. Not even our wedding made it to VHS or DVD or HD or whatever they’re calling it today. So, imagine how I felt when I sat down and watched myself sharing my story,  The Talking Dream, at Listen to Your Mother.

A few comments:

1.) Bangs don’t translate well with overhead lights.
2.) My hands move in a way that makes me uncomfortable.
3.) I play with my wedding band obsessively.
4.) I’m not a pretty crier.
5.) All this, and I’m still proud.

Check out the rest of the cast — I shared the stage with a talented crew!
Love, Jess

a crowded, wonderful holiday

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I spent the entire drive to the Block Island ferry lying on top of the luggage in the back of the car. I’m not sure why everyone else gets a proper seat. Even Keegan gets a prized spot at Jack’s feet. At least they were taking me with them this time. Last week the whole family left me at home with Maria. She’s sweet, but I miss my family when they’re gone. It’s hard to tell them, so I decided to show them. That guy who keeps showing up at our front door, filling our mailbox and leaving without even a hello — I bit him.

I’m guessing that I will own the title of Worst Dog for a while longer. That’s one of the humans’ favorite games over the Fourth of July on Block Island. There are 18 of them and 5 of us dogs. Seems unfair that they highlight our bad behavior when they are creating most of the chaos. Parades with candy being thrown, loud explosions coming from the sky, days at the beach leading to lines at the outdoor shower and so many dishes in the sink. And, there is the excessive bad language, especially during dinner time. It’s as if there is something wrong with me eating out of Dylan’s hands. WHY serve meat if you don’t want the dogs to have some? Besides so many of the kids are at just the right height for me.

After three days, it was time to say good-bye. My mom tried (again) to put me in the wrong car as she was packing, but I’m on to her and settled into my usual spot on top of the dirty laundry. We made it home safe and sound. I’ve been told that we are heading back up to the island in another few weeks, but it’s not quite the same as our Fourth of July madness. There are never more than four dogs at a time in August!

Thanks PopPop and Sue for hosting another fun-filled holiday!! It’s always a little nuts, but we all enjoyed every second!!

Love, Finn

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we are the 10-20%

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June 3, 1995

St. Bartholomew NYC, NY

As we were preparing to leave the hospital years ago, our social worker pulled us aside to warn us about all the obstacles parents face bringing home a child with health concerns. “And your issues are a bit broader. Be careful. The divorce rate for couples who have children with special needs gets as high as 80-90%.”

I didn’t hit her, but I wanted to. I’m not sure why she thought it would be helpful to share those statistics with us – what she thought we would do with the knowledge. All it really did (other than make me want to hit her), was make those numbers ring in my ears. At that point, we were convinced Jack’s “specialness” was temporary, but the numbers still rung. As we returned to our lives, and it became clear that maybe we were indeed a “special needs” family, I couldn’t help but revisit the grim statistics. I wondered what made special needs families so vulnerable. Why families wouldn’t gain strength through their challenges and why anyone would EVER add to already complicated lives?

Dan and I got married agreeing that marriage is forever. Few things were on our unspoken list of deal breakers. My parents have stayed married, merging two cultures and two distinct family dynamics, along with a mound of issues while raising three children. Dan’s parents also stayed together through a maze of life and parenthood, until his mother passed away. Every couple has their issues, but both sets of parents were great role-models. Teaching us that if you can get through the tough days, partnership has wonderful benefits. As a couple, Dan and I have had a few friends and family members end their marriages, and none have them have done it easily. It’s a struggle to witness and nothing either Dan nor I would want to duplicate.

So why is the divorce rate for couples who have children with special needs as high as 80-90%? My only conclusion is that, like many tests in life, having a child with special needs highlights any cracks you may have in your marriage’s foundation. Dan and I seem to have an extra sturdy foundation. I think the strength comes from liking each other. It’s that simple.

When Dan sends me his nightly text telling me that he is on the train heading home, I smile. I’m excited to see him. When I tell Dan about my day, he listens. Like all married couples, we have our moments (occasionally months) of frustration/anger/your #$$%ing kidding me, but generally we enjoy each other’s company. And, we both adore our children. We also share the same values and goals and are one of the few people in each other’s lives who really understand what it’s like to live in our home. Our challenges have made us stronger.

Wednesday we celebrated our 20th Anniversary – 20 YEARS!! I feel very confident that we will continue being part of the 10-20% who choose marriage. I don’t think I could manage this life without him. Thank you Dan for being my husband. I love you more every day.

Love, Jess

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June 3, 2015

St. Bartholomew NYC, NY

(the doors were locked – we had to laugh)

happy birthday jackO!

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Day + 2922 (417 weeks/8 years/half of Jack’s life) . . .

Most of us have one birthday, but Jack likes to be different. He has two.

His first birthday marks the day he came into the world. Eight years later, Jack was born again (not in the Christian sense of the word – THAT he hasn’t done yet).

Eight years ago, we sat in room 505 at Columbia Presbyterian while doctors added a small bag of cells to Jack’s huge tower full of medication. It took less then 30 minutes for those cells to enter his veins. We watched and waited, while listening to music (Dan has a playlist for every occasion). It was remarkably uneventful, but it was the beginning of Jack’s life post-ALD.

Like so many life-altering moments, I remember every second of that day. I can’t tell you what I made for dinner last night, but I can tell you what I was wearing eight years ago and I still gag when I recall the smell of stem cells (who knew?). I also have that confusing feeling that it was just yesterday that we sat in that room, but I can’t really remember much before that day — as if our family started on May 30, 2007.

Eight years ago, if someone had sat me down and tried to describe what our lives would look like now, I would have strangled them. I was so sure that we would somehow return to lives that mirrored our lives before ALD took hold. It didn’t matter what I read or who I spoke to, all I could imagine was a family that looked like a family should. Now I know that families come in all sorts of different shapes and sizes, and that happiness is attainable under the most complicated of circumstances.

So, I’m glad I didn’t know. I would have been heartbroken and would have wasted time worrying that we couldn’t manage. Instead, we grew into our new lives and little by little have found a way to make it work. We are strong and happy and thriving. We celebrate Jack’s 8th Transplant Birthday today with plenty of smiles and grateful for all the duct tape that holds us together.

HAPPY BIRTHDAY JACKOOO!

Love, Jess

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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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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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