Category Archives: ALD

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

Slow down and check your rearview.

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driveway

We have a very narrow driveway. It’s sandwiched between a curb and a low stone wall that has left long scratches on the right side of every car we’ve owned since we’ve move into this house. I’ve found that if I focus just on the left side car mirror, I can follow the length of the driveway without harm. I’ve managed to avoid any damage for months – until yesterday.

Yesterday was my birthday. It started with a gentle birthday kiss on my cheek and a playful lick of my toes (Dan cheek/Finn toes). The morning continued with it’s perfection as we got the kids up and out, I ate my birthday breakfast and took a long walk with the dogs. I then got to sit down on the sofa to sort through piles of birthday wishes via text, phone and Facebook. I was feeling quite loved and very calm.

It wasn’t until I glanced at the time and realized that I was late for a meeting, that reality spilled back. What time was I supposed to be there? What time is that dinner thing tonight? Oh no – do I have anything to wear for that? Did Maria say she could be here by 6? Yikes, my folks called again – how did I miss that?

I threw on a coat and raced to the car. As I got in the driver-side, I was hitting the voicemail button on my phone wanting to hear my parents message. The Grateful Dead was blaring, my mother’s voice was wishing me a happy birthday and I was focusing on that left side mirror so that I could get to out of the driveway and to my appointment without being late.

I’m not sure what happened next. Maybe it was seeing a person waving their arms outside the passenger side window or maybe it was the loud “you’re too close” sound our car makes or maybe it was just the loud bang as I plowed into my friend’s car. My dear friend, Jen, had come by to surprise me with a birthday gift. I was so wrapped up in my crazy that I hadn’t noticed the giant SUV parked at the end of the driveway. I had been so overwhelmed with plans and meetings and stuff that I had forgotten to look around me.

Sometimes I feel very on top of things. Proud of the way I maneuver through a rather complicated life. I manage to have a fridge full of food and warm meals for my family. I teach some art classes at the local schools and write every day. But, sometimes I get a little distracted by my list of to dos that I forget to look around and notice the people around me.

Every year I write a list of goals I hope to achieve before my next birthday. This year at the top of that list is to remember to stop and look around before hitting the gas. I don’t want to miss special moments with special people AND I don’t want to damage any more cars.

Love, Jess
When I finally opened the box that Jen had delivered, It was delighted to see it was filled with 45 lottery tickets. I called to thank her and told her I hoped that I would win enough cash to pay for our cars to be fixed.

The “C” word.

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sdtcollege

Lately we’ve been reminding our daughter, Anna, to leave all her doors open as she approaches adulthood. Strong grades, long lasting relationships, healthy habits — these are the things that can keep those doors open, leaving her with as many opportunities as possible. Jack had most of his doors shut before his ninth birthday. These lost opportunities have been huge focus for me the last couple of weeks.

Jack’s smile is usually enough to melt any feelings of sadness or frustration over what Adrenoleukodystophy (ALD) has done to our family. Jealousy seems to be harder to dissolve. Jealousy is the latest emotion in my journey toward acceptance.

When Jack was first diagnosed, we were thrown a pile of statistics and quickly learned how lethal ALD can be. The more advanced the disease at diagnosis, the worse the outcome. Loss of speech, vision, and hearing are almost expected and mobility is the next to go. All these possibilities seemed manageable as long as we didn’t lose our boy. And, we didn’t – we brought Jack home 79 days after his transplant and he managed to walk from our dented silver minivan to our front door. He was able to see the “Welcome Home” signs filling the front yard and hear the cheers of his friends as he arrived. We were lucky and I swore I’d never complain.

I’ve kept my promise — mostly. Dan, my mother, and my best friends know the ugly truth that I’m not always the picture of acceptance and joy. I do have my moments of anger and resentment and do sometimes yell, “Why the $%^& did this happen to us?!?!?!” Usually these moments are brief and can be calmed with a glass of wine or a strong hug. And, until recently, they’ve been sporadically sprinkled over an otherwise positive mood.

Lately, I’ve noticed a reoccurring knot in my stomach and a hard lump in my throat. Sometimes it’s followed by the need to leave a conversation quickly, and the want for a long walk or time alone in my room. It took a while to identify this feeling as jealousy and to figure out what was triggering it. After some soul searching, I’ve discovered the source of my uneasiness — college.

College is suddenly the topic of choice in our middle age, suburban circle. Jack’s peers are starting to prepare for their next chapter and they’re doing it without him. They’re visiting schools, planning their futures, and soon they’ll be heading off to their next adventure. All while Jack will be here with us in Maplewood (forever the dependent child). I’m jealous that our boy is faced with so many closed doors,  is not working on his college portfolio AND that Dan and I are not planning our empty-nest phase.

Typical Jesse, I keep finding myself knee deep in these conversations, as if the outcome is going to miraculously change. That it won’t bring me back to Jack and his lack of need for SAT prep and college essays. It’s ripping open the scab that I thought had fully healed, but I keep on asking the questions, “Where are you applying?” “Are you thinking a big state school or something smaller?” “How’s your SAT prep going? Have you found a good tutor?”. The truth is that I want to know. These are kids that I love and I am excited about all of their opportunities. I want to know every detail of their process. It’s also a way for me to prepare for Anna’s next steps as a student (writing those words brings that lump back).

So – when will I get over this latest bout of jealousy/anxiety? Sometimes writing it down helps me reach the end more quickly. Somehow it takes a little of the poison out of the situation. And, I know that acknowledging the problem is always a good first step.

Our local friends/neighbors are now going to panic that they need to steer clear of the “C” word for my benefit. Actually, I think it’s better if they do the opposite. The more I hear the word “college” the better. I need to get passed this or the next few years are going to be miserable!!
Love, Jess