My Sister (daughter/bestie)

 

I didn’t have a sister, so I made one. It took a bit of help from Dan and loads of support from our friends and extended family, and I think we’ve done a pretty amazing job with the project. She’s just one inch shorter than I am, has the same blonde hair (although hers is a little more natural than mine), and we defiantly share the same sense of humor. She is a great sister to have. She is smart beyond her years and is the kindest person you will ever meet. She is a much younger, smarter, kinder version of me. Anna is my mini-me daughter/sister/bestie.

Thanks to my daughter/sister/bestie being thirty years younger than I am, I get to have a window into the life of a teenager in 2017. Trust me – it’s amazing!

This June has been particularly packed with fun and signs that our little girl is not so little anymore. I know I am not alone in being caught off guard by how painfully long parenting goes on AND just how quickly it’s over. How can our girl who was just in pre-school be on her way to starting her last year of high school and filling her life with so many adult things?

Last weekend Anna stayed home alone for a night. She had to stay local while the rest of us went to visit family. We were going to have her stay with friends, but after a lot of back and forth, we caved. She has never done anything to lose our trust and she did not disappointment us last weekend. There were no parties. If you are thinking, “How would Jesse know?” . . . I set up a camera in the center hall — really — I might trust her but I am not a fool AND I’m also a little nuts.

Then, this week Anna went to her second Prom for the season. Our beautiful girl looked stunning in her red dress and wore higher heels than her mama can manage. She shared plenty of fun stories of teenage silliness with her (much) older sister (that’s me). She also came home at 4:03 am (I still have the camera in the center hall). I sure wish I could have half the energy of my daughter/sister/bestie!

The last hurrah for Anna’s Magical June will be her birthday. Anna turns 17 on the 28th. In NJ, 17 means she gets her driver’s license. That chunky little peanut who used to snuggle safely in a car seat just a minute ago is going to be driving a car. It’s a little hard to imagine, but at least now I have a daughter/sister/bestie who can help me with errands and is also a designated driver!

All these significant events are to be celebrated, and I feel so lucky that Anna and I have a relationship that is so close, but as each of these events happens there’s a little stab to my heart. Prom, staying alone, senior year, driving – these are all milestones that Jack will never reach.

It’s hard, but so far I’m holding it together. Thank goodness I’ve mastered the ability to compartmentalize. It’s the only way I can survive. When I look at my daughter/sister/bestie, I try to clear my head of what ALD stole from Jack, and focus on how amazed and thrilled I am for her. So much of Anna’s life has been about Jack. It’s her turn to be the center of attention.

Besides venting a tiny bit here, I am going to do my best to continue to ignore that little stab to my heart. It might not be the healthiest decision, but I really want to avoid missing these celebrations by wasting time with the “If onlys”. Life is way too short and my sister/daughter/bestie needs me!

Love, Jess

 

 

What I realized while in Paris

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Sitting at a dinner table in the heart of Paris I watched my mother and daughter debate everything from single-sex college dorms to the definition of rape. Suddenly it occurred to me that I was watching two extraordinary women. Two of my closest friends.

I’ve always been close to my mother – first as a daughter and then as a friend. I remember when our relationship turned from mother/daughter to friend/friend. I was older than Anna. I needed to be older than Anna. I needed guidance well into my twenties (okay – I still need guidance, but my mother is much better at slipping her advice into polite conversation – usually).

It’s strange when your mother becomes your friend because she becomes human. She’s no longer the person behind a curtain who you fear but can’t really see. This new person makes mistakes and bad decisions (not you, Mymom – I’m just trying to describe most mothers). She goes from telling you what to do, to what she did and how she learned. This women asks you for advice and helps you without needing to take over. I loved when our relationship switched, but I was an adult when my mother’s curtain fell. My curtain seemed to fall off without me even noticing.

Anna learned early in life that I am human. I blame ALD for the weakened grip on my motherhood curtain. ALD has a way of stripping down resilience. Too much energy is taken with worry and late nights. It been quite a while since I was careful with my answers to even the most “adult” questions and I’m certainly not great at hiding four-letter words or less-than-perfect mother behavior. Fortunately, Anna has always loved me unconditionally and she seems to know which of her mother’s characteristics to emulate and which to stay away from . . . She has grown into a remarkable young woman. Anna’s not just a good student, but she’s smart – not always the same thing. And, she’s funny and kind. I’ve known all this for a while, but in Paris while sitting at the dinner table covered with a thin white tablecloth, I gained an appreciation that she has also become incredibly self-assured and well-spoken. Watching her with my mother, debating rather inappropriate topics for a sixteen-year-old and her grandmother, I thought WOW I want to be just like Anna when I grow up.

Anna and I have talked about going to Paris since she was a little girl – a girl’s trip to celebrate her sweet-sixteen. We invited all the women in the family to join us, but life is complicated for everyone and Mymom was the only taker. As disappointed as we were not to have the whole crew, it was lovely to have just the three of us on this adventure. Museums, long walks through the city, elegant meals, even a Segway tour (don’t ask Mymom about it – she’s still recovering). It was all perfection, but my favorite part was watching these two people that I adore debating each night at dinner. I came from one and created the other. Nothing is more amazing than that.

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This week has been busy with Smiles and Duct Tape getting out there. I’ve been distracted with marketing strategies and thank yous and begging for reviews on Amazon (not that I am doing that here), but I keep thinking about our magical weekend in Paris. I have two such strong, impressive (opinionated) women in my life. Lucky me.

Love, Jess

PS Anna still has a curfew. She might be mature and amazing, but she’s still only sixteen.

I’m gonna say it. It’s not appropriate or good parenting by any stretch. I can’t believe I am going to put this in writing, but her it goes — my daughter is my best friend.

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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

 

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

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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