Day +4003 (not a great day)

Day +4004 . . .

4004 days since Jack’s transplant. Almost 11 years. Over half of Jack’s life.

Our family lives our lives marking everything with before or after ALD barged into our world. Don’t read that last sentence and feel sorry for us. Most days after ALD are just fine, and many days after have been wonderful.

We’ve created lives that work – thanks to smiles and our duct tape. We have our Anna’s sweet disposition and busy schedule keeping us on our toes and filling our dinner-time with stories. And, we have Jack’s mood that sets the tone for everything we do. Sometimes I feel like I float between two worlds. Attending an IEP meeting in the morning where we discuss things like “teeth brushing” and “using a fork” as long-term goals and then head off to watch Anna run down a lacrosse field effortlessly to score several goals. Most days I go back and forth seamlessly, enjoying each of my children and their lives.

Yesterday was NOT one of those days.

Yesterday started shitty. I won’t go into too much detail, but just imagine cleaning up a nineteen-year-old and his bed after what I’m assuming was a mexican lunch the day before. I was scrambling to get through that mess, when I noticed that dear Anna had managed to switch the laundry the night before WITHOUT switching anything that did not belong to her. This was followed by a lot of yelling up to her bedroom (those stairs are too steep for me), “This is not a hotel!! You need to do your part around here! You are NOT in college yet young lady!”.

I was already fuming as Jack and I then went through the rest of our morning routine as quickly as possible so that we could head off to the Social Security Administration. It seems that we had been “randomly been selected” to come in for a follow-up interview to determine if Jack still qualifies for Social Security. This was our fifth visit and third time being “randomly selected” in less than two years.

 

Flash forward five hours —— I was crying uncontrollably to the young woman across the plexi-glass, “How many times do I need to tell you guys that my son is disabled? We have countless letters from doctors and teachers. He is not going to get better! He will never have a job. Never! His disease has stolen any hope of a normal life where he can work and live independently and support himself.”

I wasn’t finished, “There might be people in that waiting-room over there that are trying to take advantage of the system. I assure you that Jack is NOT one of them! Wanna look up ALD on Google? Wanna spend a day with Jack and tell me that there’s a chance of him NOT qualifying for Social Security? Why are you wasting your time and tax dollars on cases like ours?” and “No – our address hasn’t changed. No – our phone number hasn’t changed. No – Jack does not have any new pay-stubs to share with you. Why the hell couldn’t we have answered these questions over the phone? WHAT the hell is wrong with you people?!?”

After my rant, she apologized, but all I could do was help Jack off his seat, grab the paperwork (where she’d added her direct number “just in case we get another letter”) and walked out the door without a word.

I drove home yelling at the world and then laughing with Jack who I could see in the rearview mirror making funny faces at me. The wait, the questions – none of that seemed to bother our boy, but his crazy mother he sure found hysterical.

I realized half way home that I’d forgotten that I was teaching an art class at 2:30. It was 2:00 and we hadn’t eaten since breakfast (Social Secuirty rules include: no eating, no drinking, no phone calls, and go to the bathroom at your own risk – you miss your number? too bad). I called my boss and explained that I would be late and I would be bringing a special guest to my class.

I usually love the opportunity to introduce Jack to children, but I was running so late that I was too worried about finishing our project to do much of an introduction. My kindergardeners kept looking up from their Blue Dog inspired paintings to check out Jack and ask things like, “If he can’t speak how do you know what he wants for dinner?” and “What’s with those funny leg things he’s wearing?” and “Why is he trying to eat the craypas?”

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I did my best to answer their questions with a lite, age appropriate spin, but at one point I got so distracted that I rammed my toe against a table. It was like The Powers that Be were having a lot of fun torturing me. I’ve never been happier to see parents arrive for pick-up.

Our last event of the day was Anna’s lacrosse game. Swinging back to a fun event seemed like a great idea, but after ten minutes of watching the Cougars, a storm rolled in and we needed to run (Jack hopped) to the car to drive home in the wicked weather. Jack and I walked into the house drenched.

I went through the motions of dinner, bath, bed, just wanting the day to be over. I was starting to breathe again, even laughing with Dan and Anna about the events of the day, but the crappy day was not quite over.

As I got into bed, I felt a sharp pain. My toenail had fallen off.

Love, Jess

Today is a much better day. No sad looks if you see me at the grocery store. I promise I am back to being cheery mom/wife/friend/teacher/writer. Day 4003 stunk, but most days after ALD are just fine. 4004 days and counting!!

 

 

the good, the bad, and the ugly (not in that order)

 

THE BAD

I continue to be dealing with anxiety. I had been feeling rather optimistic about my progress thanks to a few helpful books, learning to focus on my breath, essential oils, experimenting with meditation, standing behind a pretend waterfall and a wonderful therapist who reminds me to take all of these things with a grain of salt. I even drove over a small bridge last week and didn’t acknowledge it until I’d almost reached the other side. I was starting to think that maybe I had even reached the other side of this anxiety.

Then, life got in the way.

Our family is heading down to Hopkins this weekend for Dan’s 30th college reunion. I’ve been looking forward to seeing old friends and spending family time celebrating Dan’s alma mater and Anna’s future home (NOT home, temporary housing for four years). Everything was going according to plan until I learned that Anna can’t join us until Saturday because she has a lacrosse game and Dan needs to go on Thursday for business meetings. That leaves me and JackO to go over the Delaware Memorial Bridge alone.

The Delaware Memorial Bridge is HUGE!!

 

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Just writing this has me sweating. I’ve thought about taking the train or taking a longer route with a smaller bridge or waiting until Saturday to go with Anna or leaving early to go with Dan or calling for a “bridge escort”. Yes, that’s a thing. Over 400 people a year call a magic number from either side of the Delaware Memorial Bridge to get assistance. I know because I’ve done the research and have the phone number on a post-it note attached to my computer screen. I am officially ONE OF THOSE PEOPLE. I keep going back and forth about my plan, but (as ridiculous as it sounds) somehow that post-it has calmed my nerves a little.

Unfortunately, the bridge is not our only challenge this week. An attempt to be proactive and responsible Dan and I decided to take an old oil tank out of our front yard. We’re not ready to move just yet, but we know it’s in our not-too-distant future, so why not take care of any linger issues? We did our research, hired a reputable company and crossed our fingers. The finger crossing didn’t work. Our next step is soil remediation. We are not sure of the outcome, but it looks like this story may be far from over.

 

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I spent much of yesterday cursing, regretting ever buying a home and hating being a grown-up. The worst part is that we will not know the extent of the problem for several weeks – not great for someone who is spending too much time worrying about a long list of who/what/where/hows. Again, the sweat is rolling down my back as I write this.

THE UGLY

After a day with several steps backwards on my road to tranquility, I picked up my dog at the groomer. I didn’t know what to say when I first saw him. Finn has never had a good reputation. He jumps and barks and has even been involved in a lawsuit with our mailman. His one good quality has been his looks. He looks like a big, furry muppet. He DID look like a big, furry muppet. When I walked into the groomer yesterday he looked like a skinny, bald rat.

I felt sorry for the young girl who handed over his leash. She looked so sad and embarrassed, “His chart said you told us to cut off anything matted. At least he won’t need a cut for a long time.”

I tried to laugh, gave her a tip and told her not to worry. Then I grabbed the leash and tried to sneak Finn out to the parking lot without anyone seeing me walking a skinny rat-dog. Another step backward.

THE GOOD

Finn the rat-dog and I went together to go pick up JackO from school. I was steaming the whole way there thinking about bridges and oil tanks and money and bald dogs, but my mood turned quickly when I walked into the school and saw a friend and her son. I told her I was having a bad day and she said, “Jess, whenever I’m having a hard day I remind myself how lucky I am to have this kid in my life. Look at our boys – who’s happier then them? We get to wake up and see their smiles every day.”

She’s right. My boy – our boys – live in the moment and when the moment is good, they enjoy every second. I need to focus on the good moments and not worry so much about the complicated/expensive/scary moments. I know somehow we will get to Baltimore and our yard will get cleaned up and my rat-dog’s hair will grow back. I just need to get behind that waterfall and let my worries spill in front of me. Don’t judge them, just witness them and allow them to pass (am I don’t that right?).

Jack and I walked out to the car and I was starting to feel better. When I put Jack in the car he started laughing uncontrollably. I didn’t realize what was going on until I realized that Jack was looking at poor Finn lying in the back seat.

Life is more GOOD than BAD or UGLY.

Love, Jess

FYI – Rereading this, I feel a little guilty about saying that Finn’s only good quality is his looks. He is one of my favorite writing companions and always knows when I need a little extra love.

 

 

 

 

 

 

 

things come in threes – PLEASE!

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Things come in threes – I hope. The truth is that I’m not sure I can take a number four if it presents itself. You guys might find me roaming the streets of Maplewood, screaming obscenities.

I’ve said that I don’t believe in karma or fate or destiny, but I’m starting to believe in really bad luck. I might need to start carrying around a four-leaf clover or wearing a horseshoe around my neck.

2018 is not off to a good start.

1.) The stomach flu — It seems to still be lurking around the house, waiting for the next victim. And, apparently it doesn’t come with the whole “you develop an immunity to it” thing, because I had it twice. I’m all for losing weight quickly, but this is a little ridiculous.

2.) Burst pipe — Still not resolved. We were able to isolate the problem and I was proud of myself for being so calm and cool with the plumber, “Please, take care of any emergencies first.” NOW I wish that I hadn’t been so cool. It’s been over a week.

3.) No heat — We woke up this morning and it was freezing. Dan and I both fooled with the furnace, but it wasn’t budging. I called the oil company and then got to go through our morning routine wearing a coat, mittens, hat and Ugg boots. Thank goodness Jack has a sense of humor and loved watching his mama try to make breakfast with mittens on. Once he got on the bus and my distractions were gone, I had time to really freak out. I kept thinking about our pipes as I watched the thermostat lower. I had every faucet dripping and space heaters in the bathrooms. I called Dan at the office by mid-morning and started crying, “2018 must be cursed!”

Four hours after leaving a crazy message with the oil company (cool Jesse was long gone), my hero arrived and was able to fix the problem. We were out of oil — don’t laugh. The house is warming up, but it’s going to take a while before I warm up to this new year.

I realize that none of these things are tragedies — but come on!! I’m tired and have stuff to do.

Okay. I’m done complaining. I’ll slap a smile on my face and go out and face the day.

Love, Jess

 

 

 

happy new year!?!!!

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There is nothing like waking up New Year’s Day with a head full of fun, foggy memories, and feeling grateful for everything in your life – your family and friends being on the top of that list.

It was nearly 11:00 am before us Torreys were all up and ready(ish) to face the day. We had just a few goals for the first day of the year and we could do all of them in our pajamas – perfection. We needed to clean up the house from our New Year’s Eve festivities, take down the Christmas tree, and eat all the calories in our kitchen before New Year’s Resolution #1 could begin.

Everything was going according to plan until we heard Anna yell, “Mom, there’s water pouring out of the ceiling!”

Happy New Year!!?!

We’ve been through this before. Our second floor washing machine pipes are a little too close to the outside wall, and seem to enjoy finding the least opportune time to freeze and burst. We thought we had resolved the issue two years ago. We hadn’t.

I know our family has the reputation of being optimistic and flexible and calm and easy-going, but trust me, when there is water dripping from our ceiling, we are none of those things. “Fu#k” was the word of choice as we all ran around the house – water shut off, towels thrown all over the floor, large pots trying to catch the stream. Our plumber almost laughed when we called him, “Pipes are bursting all over town. No way I can see you any time soon.”

We called another plumber . . . and another. “Maybe by the end of the week.” was the best answer we got.

Fu#k!!!!

I was convinced that 2018 was going to unravel. That somehow what happened in the first day of the year would determine how the year would play out. Our house was going to fall apart, we would need to spend Anna’s college fund to pay for repairs, and we would never have access to clean clothes again.

It took a few hours, a lot of swearing and a good look at what we were dealing with before we calmed down. It wasn’t so bad. We had shut the water off before any real damage was done. The plumber will come by the end of the week and fix the issue and we have an old washing machine in the basement so we don’t need to be smelly.

By mid-afternoon New Year’s Day, our house was clean, the Christmas decorations were neatly stored in the basement and we were sitting in front of Netflix eating ridiculous amounts of lasagna, cookies, and peppermint bark (I hate whoever brought that into our house).

2018 wasn’t ruined.

I stopped believing in karma, destiny and fate years ago. How could I believe in such things? I’ve seen too much pain and suffering throw around great people to credit anything but chance.

Our pipe burst because it’s been super cold — bad luck. We were able to get the water shut off before the ceiling caved in — good luck! We had an awesome New Year’s Eve with a pile of festive friends — good luck! Jack and Anna are both healthy and doing great as we start the new year — good luck! One of our so-called friends brought not one, but two boxes of peppermint bark — bad luck.

It’s a new year. 365 days and some will be great, some crappy. My newest resolution is that I will take each day as it comes. I can’t promise there will be no cursing, but I think I can do this!

Wishing everyone a decent 2018 with more good days than bad!!!

Love, Jess

P.S. Peppermint Bark = 13 points on Weight Watchers;(

 

 

 

 

 

 

 

 

 

 

a contagious mood, wet socks and a birthday

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The other night Dan and I had a moment.

Jack needed to be shaved. This is something that I don’t see – or I see, but I don’t care much about. As long as Jack is clean and clothed, I don’t worry about shaggy hair or a stubbly face. If anything, I feel like it makes him look like his typical peers. What 17-year-old boy is always clean shaven? I also don’t “see” the need, because I don’t want to.

Shaving Jack is a two person job. One person needs to hold him. Not gently cradle his arms, but forcefully pin him down, as he thrashes around like he’s being assaulted. The other person holds the electric razor, and does their best to hit all the necessary spots without doing too much damage. It’s a nightmare that I prefer to avoid.

Unlike me, Dan likes his son to be perfectly coiffed. Luckily, this means he usually takes the initiative, and does his best to recruit partners and leave me out of the rotation. Unfortunately, Sunday night Dan had run out of options and brought the razor into the kitchen as I was finishing the dishes, “Jess, it’s time.”

I’m not always as amicable as I make it sound on this blog. I have my moments. Sure, I helped shave Jack, but I did it with a long face and a bad attitude. Then I felt obligated to discuss why I shouldn’t be responsible for any razor activity, “I do most of the showering and diapering around her. Shaving is just something I shouldn’t need to do. You had all weekend to find someone to help. And, when was the last time anyone else walked the dogs (not sure why I had to throw this in)? This is NOT FAIR!”

There is nothing more contagious than a bad mood.

By the time we were done shaving, Jack’s mischievous grin had faded and Dan cleaned up the loose stubble without a word. NOT FAIR. That’s all I had to say to have each of us silently making a mental list of all the unfair crap that we need to deal with on a daily basis. We went upstairs to finish our nightly routine, feeling frustrated and sorry for ourselves.

Dan sat Jack on the potty, and we started getting ready for bed, both of us too upset to even look at each other. I threw on my PJs as Dan went into our bathroom to brush his teeth, “I’ll put Jack to bed.” I said as I trudged down the hall to get him off the toilet.

I walked into the bathroom and my socks knew before I did, “Guess who went pee in the potty! Or, not all the way in, but ALMOST.”

“Way to go JackO!” Dan hollered out from our room. I could hear the smile in his tone.

A little pee, and the mood was broken. Our family is complicated, but it’s okay — we just need a lot of extra socks.

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I put Jack down and crawled into bed next to Dan (after changing my socks). I gave him a huge hug. I am so lucky that he’s my partner in all this.

Today is Dan’s 50th Birthday! I know these big milestones arrive with mixed emotions, but I hope as he goes through the day, he realizes that he means the WORLD to us here at 26 Clinton Ave. He’s Anna’s hero, my best friend and Jack’s barber (and best friend and hero).

Love, Jess

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Life is work.

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Every time I think I have a handle on this new life, it slips out of my grasp.

The last couple of months I have been getting a little cocky. Feeling like nothing was getting me down and I was managing so well. I got through the holidays without procrastinating on my Christmas cards or forgetting a gift. I was looking forward to my spring art classes with new lessons and an eager attitude. I was averaging 15,000 steps a day on my Fitbit. I even started a new writing class, determined that 2016 was the year of getting published. I was on top of the world.

Then, things started falling apart. I’m not sure what happened, but I am fairly certain that full hours were snatched from my days. I couldn’t seem to sleep enough or get even half of my “list” done on any given day. My pile of bills started mounting into a tower in the office. Laundry seemed to never leave the heap on the chair in our bedroom. The kitchen sink was always full. Every room of our house had a reminder that I was losing a battle.

What do I do when I’m overwhelmed and feeling nuts? I pretend. If anyone asks – “I’m doing great!”. I walk around with a big smile and hope that conversations don’t get too deep so that I’m not forced to reveal anything. The last thing I really want to do is to talk about feeling that I’m losing my grip. I’m Jesse – I’ve got this.

Of corse there are hints. I don’t return phone calls, I drink more than I should, I avoid anything involving intimate conversation. I can easily disguise my mood from most people, but my close friends and family usually pick up on the signals. Dan has been asking “You okay?” so much that I started feeling kinda bad for him.

Time for a change.

This week, I’ve been avoiding the vino, tackling the laundry, sorting through the pile on my desk and searching for whatever it is that’s gotten me out of sync. It’s going pretty well, but have you ever noticed that laundry and bills are never really done?

 

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One of the things I do to keep myself on task is I write with a friend every Thursday morning. She and I have been devoted for two years to our Thursday morning ritual of meeting online, selecting a topic and diving in to a 30 minute “flash” writing session. Once we’re done, we exchange our work and then catch up on our lives. She and I have become quite close, although we’ve never met in person (we met while taking an online writing course two years ago). I think sometimes those anonymous relationships allow us to be more honest. She knows almost as many of my secrets as Jack does.

Yesterday morning she asked if there was anything on my mind. “Keeping up with change” was the subject I came up with. It was easier to suggest than, “I think that life is swallowing me.” She and I each poured our coffee and told each other that we’d be back in 30.

The beginning of this piece is what I got through. I’m always amazed how writing can help me better understand what I’m feeling. Once I find the words, my mood always seems to improve. Now, I just need to sort through what put me into the sour mood so I can avoid it happening again.

The “C” word (college) keeps coming up and it’s certainly not helping, but I don’t think that’s all of it. I think I’m just feeling overwhelmed with normal, every day, I’m a grown-up shit. I won’t play the ALD card here.

Just because you have BIG crap going on doesn’t mean that the SMALL crap doesn’t bother you too.

My writing friend has a great way with words. She ended her note to me with “Life is work, and boy does that work take time.”

Indeed.

Love, Jess

Just a crappy day.

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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