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