Tag Archives: birthday

CHANGE is a four-letter word

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CHANGE has six letters, but for me it’s a four-letter word.

Lately, adapting to changes around here has proved difficult. Dan has a new job which has him traveling a ton. I’m missing my partner. For 21 years (really 23, but don’t tell my parents) we’ve been together most nights. Now there are a lot of nights where it just me, the kids and the pooches. The house has been lonely. And, it’s not just Dan that’s often out. Anna has a schedule that’s pulling her in a lot of directions that all seem to be far from Clinton Ave. Don’t get me wrong, Jack and the dogs are great company, but the normal Torrey liveliness has been lacking around here.

It doesn’t help that I’m working on “Jack’s 18th Birthday Project”. Unfortunately, this birthday project doesn’t involve planning cakes or presents. Instead, I’m dealing with lawyers and doctors and paperwork. When you’re profoundly disabled, 18 doesn’t arrive with it’s usual benchmarks. There is no graduating from high school (that comes at 21) or registering to vote. Instead,  Dan and I are registering to gain custody of our adult son. We need to hire two lawyers (one for us, one for Jack) to prove to the State that Jack is disabled. Apparently a simple introduction to our handsome, non-verbal, g-tube attached, diaper-wearing boy is not enough proof.

Once the State determines that Jack is in fact too disabled to care for himself, we move along to other 18th birthday highlights. First, we file for Social Security. The idea of collecting money on Jack’s behalf initially felt odd, until we were reminded that Jack will never work, never earn an income, never pay for his own expenses. We live in a country who helps the less fortunate, and Jack is part of that list. After Social Security, we file for Medicaid. Yet another reminder of Jack’s lack of independence.

I was sharing this list with my writer friend (who often acts as my therapist), Jenny, and she (once again) put into words what I was feeling, “I wonder if there is still hope in your heart, a little flicker of hope that someday Jack’s condition might change? Going to court puts a label on Jack’s future and makes it all permanent.”

Yes.

It’s heartbreaking that we find ourselves at this juncture. Eight years ago, I never imagined being here. I still have hope (and it’s more than just a flicker), but it is super hard to keep hope alive when you are looking at this pile of “proof” that says otherwise. So, I’m upset and then I’m over thinking everything in our quiet house. A perfect storm to bring me to a sour mood.

Last night, Anna and I had a conversation that gave me the kick in the ass that I needed. She was being a brat (the way only a teenager can be), but then she said some words that hit my core. I won’t go into the details, but basically she reminded me that our family is stronger than our circumstances and it was time for me to stand up and deal. Anna has always been smarter than I am and she’s right. Life isn’t always easy, but our days are moving along whether we embrace them or curse them. It’s time for this Torrey to start embracing them again.

Dan’s new job is wonderful and we will find a new groove. Anna’s changes are moving her along towards her goals: to rule the world, cure ALD and not miss a single party along the way. And, our dear Jack is getting along just fine. All this ridiculous “18th Birthday Project” goes right by him. He is just waiting for August so that he can get some presents and a huge slice of cake.

My kids are great teachers. I needed them to remind me that our family is WAY stronger than our circumstances and focusing on cake is WAY more important than the other crap.

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Love, Jess

Birthday love

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Today our family celebrates John Redmond Torrey’s 9th birthday. Yes. I know that Jack was born nearly 18 years ago,  on August 5th, 1998. But on May 30th each year, we celebrate the day that Jack was given life – again. Today is his “other birthday. “

Nine years ago, Jack was living at Morgan Stanley Children’s Hospital in NYC. He had been diagnosed with Adrenoleukodystrophy just one month earlier. Thanks to our team of amazing team of doctors and nurses, he received a stem cell transplant from an anonymous donor. The entire procedure took less than 15 minutes. In keeping with Jack’s relentless attitude and irrepressible spirit, we played Aretha Franklin and danced and laughed in his hospital room as the stem cells slowly dripped into his arm…. and eventually gave him a new life.

That was nine years ago. Now my son is a happy and healthy teenage boy. The same old Jack – just taller, and with more and more with facial hair. I am so so proud to be his father. And so thankful for every day that we have him in our lives.

Jack — I love you very much!

Love, Dad

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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46 ain’t so bad

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There is nothing sexy about being 46. You’re neither young and spry or old and wise. You still need to cover your gray and squeeze into skinny jeans, but you can’t really compete with the 20-year-old crowd (or the 30-year-old crowd). You’re just middle-aged. But here I am, and I’m doing just fine.

I’m not sure when I’ll get used to the increasing amount of lines on my forehead or how my legs crack when I stand up after sitting on the floor, but I feel blessed for the life I woke up to this morning.

A gentle kiss on my cheek from my husband with a “Happy Birthday” whispered in my ear. Then my sweet Banana came tiptoeing into my room and crawled in my bed to give me a birthday hug. As she left the room, I noticed that she had slipped a note under my pillow. I would share what she wrote, but I can’t – 1. She would kill me 2. It’s mine and I don’t want to share the magic. Jack can’t sneak into my room or write me sweet notes, but he did share his brilliant smile when I walked into his room this morning. He knows it’s his mama’s birthday.

It’s not just my family that warms me, my friends are an incredible bunch. I’ve always heard that when learning a sport you should practice with better players. I’m not an athlete, but I’ve always thought of this when choosing friends. Since I was a little girl, I’ve managed to surround myself with people who teach me, encourage me and make me want to be my best.

Not that my friends have been a group of saints. “Best” hasn’t always included intellectually interesting endeavors, or even healthy activities, but my friends have always been an assortment of people who I find remarkable. I just had a great lunch with a dear friend (thanks Kim) and look forward to celebrating more this weekend. And, thanks to technology, friends from all over my life have remembered my birthday. I’m feeling extra loved.

Lately I’ve been watching the two generation on either side of me and wondering where I fit. My parents and in-laws are spending their retirement years traveling so much that I have trouble remember where everyone is on a given day. And, Anna and her pals get to enjoy the benefits of teenage life, where their only real priorities are working hard in school and make it home before curfew.

Sometimes, I feel a little buried under the responsibilities of being a middle-aged grown-up, but today I’m just trying to enjoy the fact that I’ve accomplished quite a bit in 46 years AND hoping that I have another 46 or so years to go.

Thanks for the Birthday love! I’m a lucky (kinda old) gal!!

Love, Jess

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jack knows how to party;-)

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DSC00407It’s been a long week. Saying good-bye to Bananz and then trying to get ready for a month away on Block Island — okay, I realize that this doesn’t sound like a particularly awful week. It’s just been a little cluttered and frantic. I’ve been feeling overwhelmed.

When I remembered that I needed to plan a birthday celebration for Jack before we headed out of town, I was less than eager to add to my stack of to dos. Luckily, Horizon High School (HHS) is a place that appreciates a good party as much as our son does. “Planning” a party at HHS simply requires a few texts with Monica (Jack’s aide/ AKA his school mom) and a phone call with his teacher, Mr. David. Add some pizza and a cake from Maria AND YOU HAVE A PARTY!

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With One Direction playing, Jack danced his way around the classroom passing out hugs as party favors. You’ve never seen a teenage boy as happy at Jack. Every time I walk into his school I feel so lucky that our family is part of their community.

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Jack’s school mom, Monica. We love her.

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Maria and her beautiful daughter. Maria doesn’t just make delicious cakes, she’s the reason I’m sane.

For an hour, I got to forget about all the things I need to get done before the ferry takes us to our August home. Now it’s time to go back to the shopping, packing, re-packing, bill paying, cleaning up, etc.

Love, Jess

happy birthday jackO!

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FullSizeRender-38                                                       JackO enjoying his Birthday Cupcake

Day + 2922 (417 weeks/8 years/half of Jack’s life) . . .

Most of us have one birthday, but Jack likes to be different. He has two.

His first birthday marks the day he came into the world. Eight years later, Jack was born again (not in the Christian sense of the word – THAT he hasn’t done yet).

Eight years ago, we sat in room 505 at Columbia Presbyterian while doctors added a small bag of cells to Jack’s huge tower full of medication. It took less then 30 minutes for those cells to enter his veins. We watched and waited, while listening to music (Dan has a playlist for every occasion). It was remarkably uneventful, but it was the beginning of Jack’s life post-ALD.

Like so many life-altering moments, I remember every second of that day. I can’t tell you what I made for dinner last night, but I can tell you what I was wearing eight years ago and I still gag when I recall the smell of stem cells (who knew?). I also have that confusing feeling that it was just yesterday that we sat in that room, but I can’t really remember much before that day — as if our family started on May 30, 2007.

Eight years ago, if someone had sat me down and tried to describe what our lives would look like now, I would have strangled them. I was so sure that we would somehow return to lives that mirrored our lives before ALD took hold. It didn’t matter what I read or who I spoke to, all I could imagine was a family that looked like a family should. Now I know that families come in all sorts of different shapes and sizes, and that happiness is attainable under the most complicated of circumstances.

So, I’m glad I didn’t know. I would have been heartbroken and would have wasted time worrying that we couldn’t manage. Instead, we grew into our new lives and little by little have found a way to make it work. We are strong and happy and thriving. We celebrate Jack’s 8th Transplant Birthday today with plenty of smiles and grateful for all the duct tape that holds us together.

HAPPY BIRTHDAY JACKOOO!

Love, Jess

Slow down and check your rearview.

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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.

Bad Aunt

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I woke up on Sunday morning under a cozy down comforter. I was in a quiet guestroom feeling quite wonderful (far better than the previous morning – long story – don’t ask). Such a luxury to wake up to no alarm, licking dog or smelly diaper. I just threw on some sweatpants, brushed my teeth and strolled downstairs to enjoy the company of old friends and greasy sausage. It was a great end to a perfect weekend.

The relaxation managed to linger with me the first couple days of this week. It wasn’t until today that I realized that things fall through the cracks when I lose my structure.

Generally I’m pretty organized. Not if you look at the piles on my desk (or behind the sofa in the living room), but if you peek around my house the beds are made, the closets are arranged, and dishes are never left in the sink. I need to credit Maria and Lilly (babysitting/housekeeping/duct tape) for some of the organization, but even without their help our home is fairly structured.

I need this structure. Without it I get lost. I’m someone who get’s easily distracted and if my environment becomes chaotic, I start to fall apart. I can’t concentrate on making dinner if the fridge is overflowing, I can’t get dressed if the bedroom floor is littered with garments and I can’t remember anything without the help of my screens.

Thanks to Apple I’ve managed to create a life that is tightly managed through my imac, iphone and ipad. I start each day by turning off my alarm and opening my icalendar. I rarely miss a thing.

Until Sunday.

Without my trusty screens, I missed my nephew’s, birthday. I didn’t call or send a note. I didn’t even remember to put a shout-out on Facebook. Worst Aunt EVER!

Now, looking at my icalender I’m noticing I also missed an appointment with a plumber – or did he forget – and I forgot to send a writing assignment to my writing group. Is it possible that one weekend away totally messed up my structure?

Love, Jess

HAPPY BIRTHDAY AIDAN! You are an incredible young man and I adore you!!