Slow down and check your rearview.


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.


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