Tag Archives: smiles and duct tape

Trying to be Duct Tape

Posted on by

0

Look what Anna stumbled upon while on our School District’s website:

Screen Shot 2017-03-23 at 8.50.40 AM

In case you missed it – check this out!

 

Jack and I have also had the pleasure of speaking to several classes at South Orange Middle School and are scheduled to speak at an event for CPNJ, a Clinton School fundraiser and a few book clubs. Never did I imagine speaking being part of our journey, but here we are.

I was talking with a friend last week who has a child going through a difficult time with his own challenges, and she said, “I can’t wait to be on the other side of this. I can’t wait to be in a place where I can help other families.” All I could say was, “You’ll get there. It’s awesome!”

We could have reached this place and just lived our new normal, but our family was eager to thank everyone who helped us along the way (our duct tape). I’ve never been great with “thank you notes”, so instead we chose to thank our duct tape by paying it forward – by trying to BE DUCT TAPE.

Whether we are delivering Boxes of Fun (Anna and her Columbia High School friends have taken over, but Jack and I still deliver) or talking on the phone to a newly diagnosed ALD family or speaking to a group of young people about kindness – it’s confirming that we are on the other side AND it’s our way of thanking all of you.

I don’t believe that nature/life has a perfect plan for all of us – I’ve witnessed too much to make sense of that as a reality. What I do believe is that we all have the power to make the most of the lives we are living. I might not always make the best choices, but I will always do my best to help others. If our family can be a little bit of duct tape for someone else, we have done our job.

 

Love, Jess

IMG_0790

IMG_0792

IMG_0793

images-61

The Other “C” Word – Part 2

Posted on by

2

“Come on JackO! We need to keep up!”

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

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

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

BUT

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

fullsizerender-89

16806887_10211739711875653_4559308354953288719_n

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

… FOR HER TO GO

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

16806856_10211739710955630_9139332342497928871_n

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

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

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

ENOUGH

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

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

Love, Jess

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

16807765_10211739711395641_1494329783690285413_n

Michael and Hans (I mean, Pierre) Part 3

Posted on by

0

images-54

Eight years ago our family hosted a party to celebrate Jack’s second transplant birthday. There was a cake and balloons and (like any good party) a table so that people could sign up for the Bone Marrow Registry. 79 people signed up that day. One was a friend of a friend, Michael Steiner. I’ve shared his story before, but it continues — here’s the update:

So I did the marrow (“Drill baby! Drill!”) donation back in September 2015. Then a few months after that I did the white blood cell donation (“Spin baby! Spin!”) for my cousin, … because we’re all cousins. #ScienceIsReal

I knew he was in Europe, but I guessed he was in Germany (biggest country, my dad is ethnically German… so odds were on Deutschland over all others.). But it turns out Hans, is not Hans; he’s Pierre. Yes, he’s in France. I was thinking I would call him Francois, but I can never be sure to spell that with i-o or o-i. Oy!

Anyway, I found out the France part because Be The Match called me again in December 2016 to do another white blood cell donation, but this time a nurse would jack me up with some filgrastim over 5 days before the “harvest”. The filgrastim would make my body over-produce the white blood cells so the machine can spin out a better dose for Pierre.

The procedure was set for February 1st (aka “February Fools’ Day”).

I didn’t have many side-effects from the filgrastim. Only some sleeplessness and a low fever because the body gets confused with all those white blood cells around. “What’s the matter? What’s with all the white blood cells? Are we sick? What the heck?” HA! I got to stay in a hotel in the city the night before the harvest because my appointment with the needles was at 7:30am.

Since white blood cells only last a few days, Pierre got the “booster pack” within 24 hours of the harvest. I thought that was pretty cool.

Unfortunately, I’m very unlikely to be able to help Pierre again, at least with regards to his Leukemia. My handler at Be The Match told me I’m “getting to old for this s**t.” (Roger Murtaugh – Lethal Weapon). But seriously, I can be in great shape, but I’m already 45, and my cells aren’t going to be helpful to Pierre after a certain age. (I imagine the bag of white blood cells arriving in France and them saying “Ça sent un vieil homme.” Don’t you love how “old” in French looks like “vile”?)

I probably won’t get an update on how Pierre is doing, and I don’t need one. I hope he hangs in there for a long time, but I know how it all ends!

A big merci beaucoup to Jesse Cappello Torrey who had that “swab party” those years ago.

Merci to you Michael!!!!

Love, Jess

Thanks for including me JackO

Posted on by

2

I was shaking when Dan, Jack and I arrived at Jefferson School this morning. I’ve been a teacher most of my adult life, but that doesn’t mean I’m a natural at public speaking. Standing in front of twenty students and a pile art supplies is WAY different then standing in front of over a hundred people with nothing but some notes and a copy of Smiles and Duct Tape to protect me.

I’ve now had a few opportunities to speak in front of audiences. I keep thinking it will get easier, but I still feel the adrenaline racing threw my blood and every bit of my body trembling. I wonder if that ever goes away . . .

images-51

Luckily, this audience was kind.

There were a few familiar faces in the crowd, and I could see Jack and Dan sitting in the back of the library. Their smiles always give me strength. So, once the kids arrived and settled themselves in their seats, I dove in and the talk seemed to go well.

When I was approached about talking to this group of fifth graders, I wondered what I would talk about. February is “Kindness” month at Jefferson. I am pretty nice (unless you bring out the Scorpio in me), but any expertise I have in kindness has been earned because of the kindness that our family has witnessed over the years.

Today I talked a little about what our family has gone through and all the wonderful ways people showered us with kindness. I discussed how people can be kind and how kindness is contagious. I even shared a passage from Smiles and Duct Tape. I’m proud to announce that I maintained the attention of a room full of fifth graders for almost an hour – FIFTH graders!

Once it was time for Q&A, I was shocked by how many thoughtful questions were posed about our family, about ALD, and about Jack. Everyone seemed very interested — did I mention they were fifth graders!?! It was a remarkable group.

We ended the presentation by introducing Jack and he showed-off by presenting everyone his favorite (and only) sign – LOVE. Honestly, I’m pretty sure that alone would have made the day a success;)

images-10

 

Jack then gave each person a high-five as they left the room. I did most of the talking today, but Jack is the real teacher when it comes to kindness. I’m just lucky that Jack includes me in his speaking engagements.

Love, Jack

img_0558

Be Kind

Posted on by

2

This Friday I’m speaking to a group of fifth graders about kindness. I guess our family has witnessed enough kindness to make us a bit of an authority on the subject.

images-50

I’ve been sitting down trying to figure out how to approach the topic in an age appropriate way. I don’t want to scare the kids, and I definitely don’t want to bore them. Fifth graders can be a tough audience.

I can list some of the wonderful acts of kindness that have been showered on our family — the meals, the gifts, the long hugs, the kind words in the form of letters and texts and emails. BUT I also think I need to share a bit about how to be kind.

There might be a few exceptions, but most people are born kind. Bad behavior directed towards others is either taught or a product of circumstance. Parents need to be careful about what they teach their children. Like all bigotry, ranking people in importance by their abilities is a reflection of that person’s own insecurities. If you need to put someone down just to feel strong, shame on you. Teaching hatred to your children – that’s called bad parenting.

I’m assuming that the crew I’m talking to on Friday comes from good parents that would never intentionally teach hatred. I think I need to focus more on the fact that perhaps these kids haven’t been taught about how to treat people with disabilities. Often mean behavior towards people with disabilities is simply ignorance and/or fear. People don’t know what to do, what to say or where to look.

Here are some simple ideas:

* Stop thinking of people with disabilities as “disabled people”. They are people first. Whatever disabilities they might have are simply a small part of who they are. Look passed their wheelchairs or braces or quirky behavior and approach them as people. Say “hi”. Smile.

* You don’t need to pretend. If someone has trouble walking — open the door for them or ask if you can help. If someone can’t speak — see if you can get them to give you a high five. If someone is in a wheelchair – you can comment on their cool equipment. I can’t speak for all special families, but we would much rather have people approach us with smiles and questions, than to pretend we’re invisible.

* Treat people the way you would like to be treated – always a good idea.

* Be kind/good-natured/caring/loving/warm/sympathetic/hospitable/friendly. It’s good for you. It’s good for the other person and IT’S CONTAGIOUS!

Love, Jess

I think I may start with the Harry Story. Harry taught me a great deal about being kind. I’m also going to introduce the kids to JackO – he is the master at teaching kindness.

 

It shouldn’t be a secret

Posted on by

8

If you’ve come to our house lately you may have noticed some changes. There are signs all over food in our kitchen saying “JACK ONLY” and there’s a lingering smell in the air. We had someone working on the alarm … Continue reading →

GOODBYE 2016!

Posted on by

2

I’m pretty sure all of us feel that 2016 hasn’t been quite what we expected. Years rarely live up to their promises, but this year has been particularly tough. So many heartbreaking losses. And, I don’t just mean the folks … Continue reading →

I want to be like Harry’s mom

Posted on by

1

Twenty years ago (years before I was even pregnant with Jack), I was a middle school art teacher in a suburb on Long Island. One day, the principle asked me to come down to his office to discuss something. He told me that there was a boy in the district who was profoundly autistic. He wasn’t mainstreamed in any classes, but he really loved art. The principle asked if I would be willing to have the boy join my seventh grade class.

I didn’t know much about Autism, but I did know about tenure, so I nodded my head and said that I would love to.

The next day I was introduced to Harry. Harry could barely speak, couldn’t look me in the eye and had a host of very unusual behaviors. Initially, I thought HOW is this going to work? I was a new, inexperienced teacher and had 26 other seventh graders in the class – seventh graders!

I was surprised and delighted that over the next couple of weeks I didn’t just get used to Harry and his quirky behavior, I kinda fell in love with him. There was something magical about the way that he was able to tune out the chaos around him and focus on his work. And, the feelings where mutual — before long, part of Harry’s daily routine was to stop by my classroom several times a day to hug me. Long awkward AND awesome hugs.

As Back to School Night approached that year I was super excited about meeting Harry’s mom. I felt like I needed to tell this overwhelmed/exhausted women that she was doing a great job – that Harry was a great kid. I was going to make her day.

The night arrived, and as my seventh grade class of parents filed in, I scanned the room for Harry’s mom. I’m not sure what I was looking for but I was certain I didn’t see her. There was not one person in the crowd wearing a “I’m a special needs mom” hat. I was disappointed, but moved on with my “Why Art is the most important subject in your child’s curriculum” speech. When it was over and the class started to empty, a woman walked up to me and introduced herself, “Hi, I’m Harry’s mom”

I was floored. She’d been there the whole time and I hadn’t recognized her. She wasn’t at all what I expected – she was showered and had make-up on. She was even smiling. I paused a little too long and then made things worse by hugging her and telling her how much I adored her son and great I thought she was. That hug made Harry’s hugs seem pretty normal.

As she removed herself from my arms she said, “Thank you so much Mrs Torrey. THAT is great to hear, but I know how amazing Harry is. I’m not just a special needs mom – I’m Harry’s mom. Harry’s life might be a little more complicated than his peers, but I have always tried to not let Autism take over our family. I have other kids, I have a job and a husband and friends. If I let Autism define us, I am letting Autism win.”

I’m not much of a believer in “all things happen for a reason” but Harry’s mother’s words have stayed with me for over twenty years.

When Jack got sick and it started to become apparent that his disabilities weren’t temporary, I remembered that day meeting Harry’s mom and thinking that if I could just keep her attitude my family just might survive.

Love, Jess

dsc01242

 

A Room Full of Duct Tape

Posted on by

6

I’m not sure of the best word to describe Thursday’s reading at WORDS – but unreal and overwhelming keep coming to mind. The reading took place in the basement of our local bookstore (that makes it sound depressing – it’s … Continue reading →