If it weren’t for ALD . . .

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I ask myself a lot of questions that start with, “If it weren’t for ALD . . .”

If it weren’t for ALD . . . would I still be a photographer?

If it weren’t for ALD . . . would I have ever written anything besides shopping lists?

If it weren’t for ALD . . . what would Dan and my relationship look like?

If it weren’t for ALD . . . would we travel more?

If it weren’t for ALD . . . would Jack love music so much?

If it weren’t for ALD . . . would Anna be thinking about studying art over medicine?

If it weren’t for ALD . . . would Jack’s laughter be as loud?

If it weren’t for ALD . . . what would this year feel like?

I knew that this was coming, and did my best to brace for it, but I am still having a hard time. I open up Facebook and I’m faced with dozens of pictures of dorm rooms and college gear. Smiling family portraits of the last hug before mom and dad get in their car to leave their kids that are starting their next chapter.

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I thought I was okay, but the other day while getting Jack’s haircut, we were approached by one of his old friends. Jack was delighted and didn’t miss a beat – he went right in for a hug and a lick. Jack was fine, but seeing her beautiful smile and hearing about her plans had me crying before I knew what was happening.

So many tears.

I’ve been asking myself — If it weren’t for ALD . . . would I be crying this much as I said goodbye to these kids?

I’m a girl that cries at commercials and the cheesiest of Hallmark cards, so I’m guessing this milestone would have arrived with plenty of tears if Jack were among his college bound peers, but I know that it’s made more intense because ALD did happened – because Jack won’t ever reach this milestone, because it’s another thing he’s missing, because he’s being left behind.

If it weren’t for ALD . . . where would Jack be headed? Would we be driving or flying? Would he be off to study history or art or a language? Would we be excited to empty our nest a bit or dreading the goodbye? How can I NOT wonder “If it weren’t for ALD . . . ?” And, how can I NOT be sad?

So, my tears are flowing these days, as I expected they would be, but I’m realizing that there is another, unexpected layer to my sorrow.

I’m suddenly aware that a big life chapter is coming to a close — not just for the kids heading off, but for everyone they’re leaving behind. So much of my life for the last 19 years has been, not just as a mother to my own children, but watching all these other little humans go from babies to toddlers to school-age children to young women and men. I can’t believe that these kids are starting to move on, leaving everyone in their wake to figure out what they’re supposed to do with our new “freedom”. My nest will always remain full, but the focus of my circle of friends is changing. Friends are talking about selling their houses and starting new projects and careers.

How did we get here? What does that mean for our family? Just when I reached a place where I felt comfortable with my roll in the world, it’s changing. If it weren’t for ALD . . . would I be so uncomfortable with this change?

Crap.

Love, Jess

Today brings the hardest blow yet. Katie V and Katie M each head out for college (RJ is just a week away). These are not just family friends, they are family. Kids that have been been with us — held us up — before, during and after. We are going to miss you guys. Good luck, have fun, and feel free to call Aunt Jess with anything that your mom and dad might not want to hear;)

 

I refuse to steal the HAPPY out of HAPPY BIRTHDAY

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I don’t remember all of my birthdays, but 19 was especially memorable. My friend, Dave, took me out for dinner. It was our favorite Chinese restaurant and I’m sure there was a Scorpion Bowl or Mai Tais or something else really sweet and really strong. We stuffed ourselves with beef and broccoli, and then Dave insisted on ordering dessert. Who does that at a Chinese restaurant? Fried ice cream or something odd and I could hardly fit in a bite. Besides, I was anxious to get back to the apartment. It was my birthday and I wanted to grab our friends and go out.

I felt like Dave was going in slow motion as we made our way back to the Woodrow (think rundown/gritty/college three-story apartment building in Baltimore). I was so focused on how lame he was being that I didn’t considered WHY he was moving so slowly until we walked through the door.

“Surprise!!!!”

I’ve never been so shocked. Somehow, without me having even a clue, my mother had contacted my best friend, Enger, and sent her some cash to plan something nice for my birthday (remember this was years before cell phones). I’m guessing that my mother had envisioned sparkling wine and canapés, but instead there were pizza boxes and a keg of beer. It was one of the funnest nights of my life. Rowdy, loud, and silly. 19.

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JackO is turning 19 on Saturday.

Each milestone that we reach comes with a little reminder of what coulda/shoulda been and I hate that. I hate that there is any hesitation on focusing on the happy part of happy birthday. I hate that I spend even a second wondering if I would have sent money to Jack’s college friends to buy some booze and party favors (probably not – 2017 is not 1988 – I’d probably end up in jail for contributing to the delinquency of minors). I hate that I wonder where Jack would have gone off to college. I hate that I use any ounce of energy cursing ALD — AGAIN.

But I do. I can’t help it.

When I started writing this, it was for me to post on Jack’s birthday, but I’m not going to wait until Saturday. It’s not fair to Jack. It’s not fair to his birthday. His birthday is for celebrating. He deserves it. He is the happiest person I know and NOONE likes a celebration more than our boy;)

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So — enough of the coulda/shoulda. We are going to celebrate all weekend. Heading to the beach with some of our closest friends. We’re going to eat pizza and cake and maybe even find ourselves a Mai Tai!!!!! Then, on Monday we will celebrate again with his pals at school. And, when we head to Block Island later in the month — we will have more cake and do more singing.

I will send some photos of all the fun on his actual birthday. In the meantime – send Jack a note. On Facebook or right here. Scroll down. See “Leave a reply”? Go for it!

Love, JackO’s mom

PS Once I have written down my feelings, I feel much better. No need for weepy phone calls or awkward hugs if you see me. I promise I’m now focusing on WackO JackO and his big, fun day/week/month.

PPS I wrote this last night and, as I was falling asleep, it occurred to me that I might have actually been remembering my 20th birthday. Enger? Dave? Betsey? Deb? Anyone?

 

 

The Other “C” Word – Part 2

“Come on JackO! We need to keep up!”

I am not sure how many times I said those words, but it felt like thousands. I really didn’t want to miss a minute of the tours. Jack did managed to keep up pretty well – he hopped his way through three campuses over the weekend.

We spent the weekend in Boston looking at colleges. I’ve been dreading the “C” word for years and now we are here – smack in the middle of it. The clock is ticking so loudly that our family is having trouble focusing on much else.

Let me start by saying that we are thrilled for Anna. She has worked hard to be able to walk through college campuses with confidence. It’s not just top grades in top classes, but she runs clubs, has organized camps, has had an incredible internship, and is athlete too. She lives her life wasting very little time with nonsense. I’m sure she will have many wonderful options. And, she will (even if it kills me) have a family that supports her every step – or hop – of the way.

BUT

This new stage has been hard for me and it came out sporadically all weekend. The “C” word is bitter or sweet depending on what second you catch me. Just ask my family. This weekend I would go from cracking jokes, asking lengthy questions to the college guides and demanding selfies — to hiding in the bathroom and yelling things like, “I will take my own Uber home!”.

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My skin is just really thin these days. I am trying so hard to make it fun for Anna. It should be. It’s an exciting time and she has worked tirelessly to make this next step in life. And, college is amazing – the classes, the clubs, the parties! How can I not be excited for her to go?

… FOR HER TO GO

To leave us here without her daily dose of humor. To leave us here without her long stories of teenage angst. Who is going to steal my clothes and call bullshit on me trying to serve leftovers for three days in a row? It’s going to be so quiet here on Clinton Avenue. I imagine I am not alone. I bet all parents have their hearts break a little when they imagine their birdies flying. Change is never easy.

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And then we have an added heartbreak. The other side. The child who cannot fly. Jack who will not be going off to college. I try not to focus on the on this too much, but there are reminders everywhere we turn.

We were literally surrounded by college-bound faces all weekend. Kids that are Jack’s peers. Kids with the same mischievous smiles. The same stubbly faces. At first glance, they all look the same as our boy, but the are not the same. They didn’t have Adrenoleukodystrophy storm into their lives (and brains) as a child.

Even at home, we are being reminded. All of Jack’s childhood friends are either already in college or are anxiously waiting to hear where they’ll be heading. It breaks me when I think of what Adreoleukodystrophy stole from Jack.

ENOUGH

I need to focus on all of adventures that lie ahead for Anna. It’s going to be amazing and lead her further towards her goals. She will get closer to medical school or a PHD in something I will never understand. She will meet new people, travel, have incredible experiences and tons of fun.

I ‘m going to toughen up and be okay with all of this change. By the time we go for our next college tour in North Carolina, I am going to be carrying a strong, bright smile and leave the tissues behind . . . but if I can’t — I apologize in advance.

Love, Jess

Jack doesn’t seem upset in the slightest. He loves any chance of exploring with his family. Jack just hops through his life with a smile.

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How to raise a great kid – HANDS OFF!

I had a super stressful dream last night. Not my typical, “I forgot to wear pants to the grocery store” dream. This was new and I woke up sweating.

I dreamt that I was having trouble with my college essays and not sure if I would get my applications done on time. I could read into it, but I think it’s pretty clear what my subconscious was trying to tell me — it’s time to relax and go back to HANDS OFF parenting Anna.

The truth is I’m usually a pretty hands off parent with Anna. Not to say that I don’t grill her after every party and open her report cards, but both Dan and I generally allow Anna to make most of her choices without too much guidance. Safety is (of course) important, but other than a curfew, she has very few rules (and even that is pretty negotiable).

It started when Jack got sick. Anna was only six years old and her family scattered. She went from having a father who was available every day to toss a ball with her after dinner and a mother who was always finding random excuses to show up at her school, to not knowing who would be home to tuck her in bed each night. She knew her family loved her, but she also knew that if she needed something, sometimes it was just easier to make it happen herself. Siblings of special needs kids have a perspective that their “typical” peers don’t.

Although I appreciate how fun it would be to helicopter around and watch everything Anna does while adding my two-cents, I just don’t have the time or the energy. If Jack needs me, it means he needs assistance with eating or needs his diaper changed. I can’t NOT do it. If Anna has a question about her homework, Google is faster than waiting outside of the bathroom door.

As IF I could help with her homework.

Don’t think that Anna’s not getting any attention from me. We talk and text throughout the day about everything from clothes to friends to our relationships with God. We have breakfast and dinner together (“breakfast” is her eating an Eggo waffle and me drinking coffee, but dinner is an actual meal that I have prepared). We are so close that we are starting to look like each other. When people see us together they call her “Mini-Me” and it’s not just that we look alike, our mannerisms and senses of humor are the same – it’s almost creepy.

We’re close – what I mean by HANDS OFF parenting is that I don’t micromanage her. I don’t watch over her constantly to make sure she is doing things just so. She needed to get her driving permit a couple of weeks ago and all I said was, “Great. Just ask around and tell me who to hire. I will make the first phone call, then it’s all you.”

When she was planning her course-load for junior year, instead of digging through all the choices, Dan and I just sat back and watched her come up with her perfect schedule. My only input was “I think I would prefer AP Art to AP Calculus, but if that’s your thing – have at it!”

We trust Anna because she has proven that she can be trusted. She is a great student and has a wonderful circle of friends. She makes good choices (mostly – she IS a teenager). She is kind to her brother and when I watch her interact with other people I am proud of who she is.

We’ve been so relaxed with Anna that I was surprised that Dan and I climbed on board the “college train” with such intensity. Looking through college books, long talks around the dinner table, planning trips to see schools. Perhaps it’s a distraction from NOT working on the project with Jack or maybe it’s just super fun because Anna has an impressive transcript —  And, maybe part of it is that Dan and I really, really, really want to go back to college ourselves;). But, I need to be careful. I’ve found myself checking Powerschool daily and questioning grades, looking at that giant book of colleges even when Anna isn’t home, thinking about essay topics and waiting anxiously for the next round of ACT scores. I’m getting dizzy with all the information and Anna is not appreciating the frantic input.

“Mom, you know I have this covered, right?”

Yes, I know you do baby girl. You have turned into a remarkable young woman and I know you will do amazing things. Mom will go back to HANDS OFF parenting. Just let me know when you need me.

And, when can we plan that trip to Virginia and North Carolina . . . and Boston – we need to go to Boston!dsc00726

Love, Jess

 

What’s NVRN spell? Nothing.

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This is the smile that gets me through the hard stuff.

 

At my tennis lesson last week, I saw a young woman who looked familiar. She was a little older than Anna, and I was having trouble placing her. I went back to trying to focus on my forehand when it hit me, “Hey. Did you happen to go to Morrow Preschool?”

“Yes.”

Suddenly I could picture this slim young woman as a little girl a dozen years ago, with rosy cheeks and a glowing smile, playing with Jack on the playground at their preschool.

“You were in my son Jack’s class.”

“Wow. I’m not sure I remember him. Does he go to the high school?”

I sometimes freeze when I get hit with what’s happened. Maplewood is usually a safe place, where everyone knows our story. Where I don’t need to say things out loud. My stomach turned as I tried to choose my words so that we could simply go back to groundstrokes and drop shots, “No. Jack goes to a special school. His life’s kinda complicated.”

Now that we were both feeling awkward, I wished I hadn’t started this exchange and quickly looked for a transition. Her sweatshirt was bright and new with the name of her future, WESLEYAN, “You’re a senior this year? Heading off to Wesleyan in the fall? That’s wonderful.”

That’s all it took. Her smile grew, as she went from wondering what happened to her old classmate, to thinking about the adventures that lay ahead. We were both allowed to continue with our lesson, focusing on easier things than how complicated life can be.

When I got home from the lesson, I went into Jack’s room to say goodnight. He was sitting up in bed, and as soon as I walked in the door, he gave me a big smile as if he’d been waiting for me to tuck him in. I gave him a kiss on his forehead and laid him back down. As I covered him up, I realized he was wearing the bright purple NORTHWESTERN sweatshirt that we’d gotten him last year while visiting my parent’s alma mater.

The sweatshirt is missing all but 3 1/2 of it’s letters. Jack has somehow managed to eat the rest. He has eaten the O,R,T,H, most of the W, E, S, T, and E.

I can’t make this stuff up. It is a college sweatshirt that’s missing the college.

Love, Jess

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The “C” word.

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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