lucky mom

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Every weekday morning, Anna races downstairs making sure she gets a chance to give her Boogie* a hug before his bus arrives. It makes my heart melt. No matter what’s going on in our family, our country, or the planet, I try to pause and enjoy the love that these kids have for each other. Siblings/best friends – the strongest bond I’ve ever witnessed. I’m a lucky mom.

That is all.

Love, Jess

* Jack AKA Boogie, Boogie Brown, Boogs, Boogs McGee, JackO, WackO, The Weasel

 

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

 

A Birthday for Bananz!

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There are no parenting books that recommend being friends with your teenager. We are always told that our responsibility as parents is to parent.

My problem is that I do so much parenting with Jack. I need to be ON all the time. Missing the medication or hydration could be disastrous, and when he needs a diaper change, he needs a diaper change. I can’t slack – not even for a minute (this is not completely true. I do slack, thanks to a wonderful team of people, but I need to arrange so that I can slack).

When it comes to parenting Anna, she tends to direct. She tells me when to call the SAT/ACT tutor and when I need to drive her to school. She announces when it’s time for a new curfew (THAT we did need to negotiate), but also knows when she needs to call it a night so that she has time to work on her summer assignments. And, although we spend many dinner conversations discussing Anna’s schoolwork, we are rarely asked to help or edit. It’s not just because she has surpassed our expertise in many subjects, it’s because she has always had to be independent.

This is not to say that we do not spend quality time together. Anna and I spend hours watching and discussing groundbreaking television (i.e. The Challenge on MTV) and pouring through high school gossip. Anna and Dan also have a close relationship. He isn’t as fond of the rumor talk as I am, but he and Anna can discuss history or lacrosse stats all day long. And, watching Anna snuggle with her brother is one of the most magical things on the planet.

Anna has turned out to be a remarkable human and I love being her mother/friend. I just look at her, and I am in awe. Brilliant, beautiful, patient, compassionate, kind and happy. Everything I ever hoped my daughter would be.

Dan and I get all sorts of credit for raising this unbelievable child, when the truth is that Anna really deserves most of the credit.

Happy Birthday Bananz!! Sweet 16!!!

Love, Mom

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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

Anna just keeps pedaling

 

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When Anna was five years old, she came home from her friend Zoe’s house and told me that I needed to take the training wheels off her bicycle, “Today Mommy. You need to take them off today.”

Even as a little girl, Anna would get a look in her big blue eyes and I would know that she meant business, but I was curious about the timing, “Why Anna? Can’t we wait a bit longer? Don’t you like the safety of the extra wheels?”

“Moooommmm. I’m five. Besides, Zoe showed me today that she can ride her bike ALL BY HERSELF!”

That was it. There was no way that my daughter was going to let someone else enjoy even a second of glory without jumping into the game. That’s Anna. She was born determined to prove that she could do anything. It’s who she is to the core. And, it’s never been just to show off. She never really even required a witness. She just needs to prove it to herself.

That afternoon, I dug Anna’s bike out of the garage and took off the training wheels. We strapped on her Dora the Explora helmet and off she went. She started on our front lawn, “This is what Zoe said worked for her.”

There were a few spills on the soft grass before she got the hang of it. Within a half hour she progressed to the sidewalk and she’s been pedaling ever since.

Anna is now in high school, and her determination seems more indestructible than ever. It’s not just in the classroom and on the lacrosse field that she has a need to succeed. She seems equally determined to master everything from a Rubix Cube to memorizing presidents, country capitals and the Periodic Table. To date, she has yet to find something that she cannot master, but Dan and I can’t help but worry.

When is too much — too much?

I was never much of a shining star as a girl. One benefit of being mediocre is that no one expects too much from you. In fact, you get all sorts of encouragement and support and plenty of “clap outs” for every small accomplishment (I do love this). Dan, like Anna, was born determined, and it certainly reflected positively on his school work and career, but it has caused some disappointments and significant stress along the way. And, he did not have the added pressure that we fear Anna carries.

Anna is our only child who gets grades and plays sports. She is our only child who will go to college and have a career. She is our only child who will fall in love and have a family.* Dan and I try our best to alleviate the pressure and not focus too much on “being the best”, but it’s there. It’s been part of who Anna is since she was a little girl. As much as she does it for herself, Anna also loves to see her parents applauding her accomplishments. She knows we have our plates full with Jack, and is determined to make parenting her as easy as possible. This silent pressure must be stressful, but I’m not sure what to do about it.

How do we proceed? Do we stop posting her report cards on the fridge or cheering loudly at her lacrosse games? Do we discourage her from signing up for another AP class or stop her from all of her extracurricular activities?

We have tried praising more of her behavior and less of her accomplishments. We also try to remind her that she is not a grade on a paper or goal on a field. She is Anna, our daughter, Jack’s sister, a wonderful friend and beautiful human.

Special needs siblings are taught early that life is not fair and that their needs aren’t always the priority. They learn that their parents can’t take too much extra nonsense without potentially cracking. I’ve seen it again and again — special needs siblings grow up early, carrying more than their share. So far, this extra weight has added to Anna’s muscles, I just hope it doesn’t some day weigh her down.

For now, Dan and I just keep reminding her, to take it easy. “Work hard, try your best, but remember you’re just a kid.”

We keep talking and talking, but no matter what we say, I’m not sure we will change anything in our girl. Anna is Anna. She just smiles at us and keeps on pedaling.

Love, Jess

 

* In fact, Jack falls in love often and has plenty of girlfriends to prove it. I’m not sure how realistic it is that Jack will have a family of his own, but stranger things have happened – just turn on CNN.

Kids these days

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Here I go again. Another story about Anna.

I do sometimes worry that we are putting her on a pedestal so high that if she falls, it might really hurt. That she feels pressure to always be the best hoping to balance out our family’s circumstances. And, that some day she will decide that it’s not worth it and turn in her flawless GPA for . . . I don’t know, something bad.

But then I look at Anna and I know that, although she enjoys her parent’s praise (and the accolades from people who read this blog), she also really does like school and sports and giving back. And, that while she is wonderful, she’s still a teenager and has proven that to us in the last several months (maybe someday I will take a moment to list her less-than-perfect exploits so that people can feel better. Anna is human).

Anyway, I can’t NOT share what our daughter is doing these days. It’s just too great and very relevant to our “journey”.

Anna and her friends have taken over Boxes of Fun and are eager to take it to another level. I’ve loved the simple, homegrown family project, but I’m thrilled at Anna’s initiative and I’m okay with letting go of the reins.

Here’s a little back story on Boxes of Fun.

When Jack was first diagnosed, our friends swung into action. Dog walks, meals delivered, Anna entertained. At some point some friends even ripped out old carpeting and painted Jack’s room. It was incredible. And, as Jack prepared for his transplant, we started to hear rumblings about a magic box.

Jack’s Big Box of Fun was spearheaded by our dear friend, Kim Vivenzio. Kim was not just a “love aunt” to our kids and a “love sister” to me, she had a unique perspective to what our family was going through. Several years before, she received a stem cell transplant.

Her experience allowed her to help us on a profound level. She was able to explain the particulars of the treatments that Jack was going to face and strategies her family used to survive. She also shared some of the amazing things that she experienced during that time. One memory always brought a smile to her face — her friends and colleagues had made her an amazing box filled with goodies. Sharing how much it had meant to her, Kim got the idea to make a box for Jack.

Kim is not a woman who does things half way. She started to organize “Jack’s Big Box of Fun” with the help of a gaggle of friends. A huge box was decorated, filled with piles of presents from friends and family and delivered the day after we arrived to room 505 at Columbia Presbyterian Morgan Stanley’s Children’s Hospital.

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Jack’s Big Box of Fun was the centerpiece of room 505. Even days that Jack was too sick to play, our family had a wonderful distraction sitting at the foot of his bed.

As Jack recovered, our family was eager to give back. We wanted to help other families who were going through the hell of transplant. The Box of Fun had been such a light in our room that we decided we needed to share this light.

With the help of the Childlife team at the hospital, we started donating individual boxes to the kids on the transplant floor. It’s been a very homegrown way for our family to give back. Along the way, the community has helped out. Donations have been made by friends and family. We’ve received piles of gifts from children — donating to celebrate their birthdays or for the holidays. We’ve had local businesses donate. We’ve had friends as far away as Block Island, Pennsylvania and Massachusetts host toy drives.

Anna has grown up with Boxes of Fun and as the years have gone by, she’s become the primary decorator and gift selector (I’m apparently lame about what kids want). Last year, she and her friends organized some drives and this year they’ve made it into an official club at her high school.

They’ve been busy Tweeting, Instagraming, and Facebooking. Raising enough money and awareness that they’re hoping to expand Boxes of Fun to a few more hospitals by spring. I’m so proud of this crew of amazing teenagers.

This weekend they are bagging groceries at a local store — SHOP RITE IN SPRINGFIELD (please come by tomorrow). I spent the day watching as they bagged groceries, raised money and shared the history of Boxes of Fun. I am a very proud mama.

Kids these days – THEY’RE INCREDIBLE.

Love, Jess

PS Kim is celebrating her 20th transplant birthday next year. That’s gonna be a great party!!!

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The Dancing Flamingo

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Those who have witnessed The Dancing Flamingo are always captivated. It’s not just unusual, it’s rather remarkable— considering the performer. For a child that can’t walk unassisted down a staircase (for fear of falling), I can’t explain how he manages a dance that requires so much flexibility, balance and coordination.

He starts by stretching tall. Getting so high on his toes that he looks like a ballerina. One leg suddenly bends (the knee goes higher than seems possible) and then he bounces. The dance is always paired with an electric smile and eyes that open wide and shine. The more excited he is, the higher the knee and the longer the dance. One Direction playing can set him into the routine within the first few beats of a song, and a visit from an old friend always gets him going – proving his memory is never at a loss. Anyone who has spent time with Jack since he choreographed his dance knows exactly what we’re talking about when we say, “The Dancing Flamingo”. There is no other suitable name.

On Tuesday evening, Anna arrived. As her and the Mackays (thanks for the visit and bringing her to us) pulled up the driveway, Jack was ushered from the cottage. He seemed excited, but when Anna got out of the car that leg bent higher than I’ve ever scene. And then he bounced and bounced as his sister ran up to hug him. Jack has been bouncing ever since.

Two weeks without our Banana was hard for all of us. One week at home going through the motions of real life and then a week here on beautiful Block Island. I thought that all the distractions of island living would soften the feeling that we were missing our family’s core, but it didn’t. Jack was definitely running a slower than usual and every time I mentioned Anna’s name he answered with question in his eyes.

When Anna arrived, she was full of so much love and so many stories. Outward Bound proved to be everything their web-site promised. I know that it’s time to start letting go of our girl, but our family is just too quiet without our heart. Now that she is back, I feel the blood flowing in our veins and we are ready to start our family vacation. I have a feeling we will be seeing a lot of our flamingo friend this summer.

Love, Jess

and she’s off!

We were on our way to the airport. It was only 4:15 am. I had a cup of coffee in my right hand, the steering wheel in my left and my eyes fixed on the road – trying hard not to look at Anna. I’d promised her that I won’t cry until she was safely through security.

“How about socks? Do you have the right kind of socks?”

“Yup”

“A hat Anna. You’ll need a hat!”

“Mom, I packed everything on the list. Don’t worry.”

Most parents would have checked their daughter’s suitcase before sending her off for two weeks in the woods. Many moms would have even done the packing for their child. I’d never seen the packing list sent from Outward Bound or glanced at what Anna had in that red nylon duffle bag. I’ve been rather spoiled as a mother. Anna doesn’t require much hand holding. There’s never been a need to go through her homework or her suitcases.

Anna was born strong and independent, but I’d be a fool not to acknowledge that our family’s circumstances have strengthened Anna’s self-reliance. Independence has been a necessity for Anna. She was only six-years-old when Jack got diagnosed and her family scattered. Although we held to our promise that either Dan or I would always be home at night for her while Jack was in the hospital, we were so focused on what was happening in room 505 at Columbia Presbyterian, that Anna didn’t get much of our attention. Thanks to friends and family, she was surrounded by love and support that spring and summer, but she learned that she needed to take care of plenty on her own.

Now that we’ve taped our family back together, we’re so accustomed to her independence that Dan and I assume that Anna will manage the school/packing stuff without much help. And, she does.

Her room is nestled on the third floor of our house. When I climb those steep stairs to check on her, I’m always amazed at her nest. Like all teenagers, she has trouble finding the laundry basket and her bed never seems to be made, but her closet is organized and she has a large whiteboard calendar hanging above her desk where she lists everything she needs to accomplish for the next month. Her grades are a reflection of her hard work and organizational skills. Bioengineering is her goal, and I imagine that’s where she is headed. She’s the smartest person I know.

Although Anna doesn’t require much in the way of homework or packing help, she gets more than her share of love and attention at home. Even her silent brother gives her constant feedback (with those magical brown eyes and wide smile) about her school endeavors and successes on the lacrosse field. And, we all have opinions and advice when it comes to her social life — 11:00 pm is late enough and shirts should not be smaller than bathing suits.

Outward Bound sent us a note yesterday afternoon informing us that all of the campers had arrived safely. I smiled, when I noticed there was no mention of any missing necessities in our daughter’s luggage. As much as I miss our Banana, I’m certain that she woke up this morning with a smile on her face, ready to face the challenges of the next two weeks. Thank goodness she remembered the hat.

Anna sent me this before she hit the trail and her phone went into quarantine.

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a banana goes into the wild

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Anna leaves next week and I’m in a panic.

It’s not the first time that Anna has gone away to camp, but it’s the first time that we’ll likely not hear from her for two weeks. As parents we need to be willing to let go, but it’s hard for me. Our house is so quiet when Anna’s gone. People assume that Jack is the center of our family, but it’s really Anna who holds everything together. It’s her school projects and social life that are the main topics of dinner conversation. And, it’s her curfew that’s the main source of weekend arguments. When she’s gone, the laundry is cut in half and so is the energy at 26 Clinton Ave.

Dan and I agree that summer is time for adventure and Outward Bound caught Anna’s attention as soon as she opened their website. She leaves Tuesday to go backpacking and whitewater canoeing in the Blue Ridge Mountains of North Carolina for 14 days.

The idea of living outside for two weeks makes me shudder. Add to that the absence of toilets and showers, and I feel sick to my stomach. So why are we sending our precious Anna? Because she’s a Torrey. It’s in her blood.

Anna’s great, great grandfather, Raymond Hezekiah Torrey, was the founder of the NY/NJ Trail Conference and one of the original pioneers of The Appalachian Trail. He also wrote a weekly column for The New York Evening Post called Outings and The Long Brown Path. Anna’s grandfather, Raymond Joseph Torrey (PopPop), followed in his grandfather’s footsteps and completed The Appalachian Trail last year. As we celebrated this milestone (near the memorial for Raymond H. Torrey engraved on Long Mountain in Harriman State Park), I could see in Dan’s eyes that he longed to continue the family tradition. As soon as retirement starts, I’m sure the woods will call Dan. In the meantime, Anna will fill his shoes – not on the Long Brown Path, but in the beautiful Southern Appalachians.

Anna has seen a lot for a 15 year-old-girl and she understands more than most people twice her age. I hope this experience will add to her already broad assortment of accomplishments. We are all so proud of her. I know I’ll need to fake a smile when I drop her off at the airport next week. I will squeeze her a little too hard as I start counting the hours until we see her again. Then I will drive home and try to fill my days with projects. Thank goodness Block Island will keep us company for much of the time.

We will all miss you Banana, but are excited for you and can’t wait to hear the stories. And, if we get a few postcards, we might consider changing your curfew to 11:30.

Love, Mom

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