Tag Archives: ALD

Now really matters

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Remember when Facebook was a safe place to scroll through photos of old friends and cute puppy videos? Now I find myself taking a deep breath before sitting down at the computer and diving in.

Apparently, our family has been living in a bubble. A beautiful, diverse, inclusive bubble. A place where all people are accepted and we all believe in science (climate change is a FACT). Where everyone feels safe and neighbors are always there the help or lend some sugar. Where you walk down the street and you are greeted with smiles and hellos. Where teenagers get busted for their parties because they recycle their empties (true story – it’s happened more than once. Teens here risk getting grounded just to be Green). It’s called Maplewood. I’m not saying that our town is perfect, but it’s pretty darn close.

Unfortunately, the last two weeks have made it clear that some people in our country really want to pop our bubble. I’m getting scared.

Building walls, defunding NPR and the National Endowment for the Arts, potential (very conservative) judicial nominees, changes to immigration, Sessions, DeVos. Politics used to be background noise in my life and now it’s center stage — there’s so much information – my brain is spinning!

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It takes a lot to get me to talk about politics. Part of it is that I want everyone to love me and being opinionated can discourage love, but the biggest reason I’ve avoided political talk is because I don’t want to be questioned. I know what I believe, but have always been a little fuzzy on the details necessary to have a chance of winning a debate.

Now that Facebook has gone from being a fun place to a scary civics lesson, I realize that it’s time for this mom to start being informed and prepared to defend her beliefs. Anna and I marched together in New York last weekend. It was a beautiful day and the energy from the crowd was like nothing I’ve ever experienced. Thousands of people marching as one. Marching is a good start, but walking with sweet signs is just the beginning. I have a feeling this is going to be a long road.

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This blog is about our family. Our family is the one thing in the world where I AM an expert. I am not an expert when it comes to politics, but I do know when I feel that my family is at risk – when the country that I treasure is at risk. I have done a lot for my children. I have fought with doctors and insurance companies (even an occasional pharmacist), but fighting for my children can’t stop now. Now really matters.

Love, Jess (the mother of a strong, independent young woman and a teenage boy who has special needs and more “preexisting conditions” than I can count. Oh, and a human that loves the arts, choices, our melting pot and our planet)

Do as I say – not as your brother does

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The response to It Shouldn’t be a Secret has been a little overwhelming. I went from not being sure if I was ready to share the news that Jack was using medical marijuana, to having over 4000 people read the post and fielding tons for phone calls, emails and texts filled with stories and questions.

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Overall, there has been very little judgement. In fact, it seems that everyone has a friend or family member who has used cannabis for medical reasons. Some of the most conservative people I know seemed almost relieved to share their stories that they had hidden away as if they had done something criminal. Wait – in much of our country marijuana IS criminal – THAT’S part of the problem.

The one hint of criticism came in a question asked repeatedly. How did we explain to Anna that her brother was going to experiment with pot?

First – Jack is not “experimenting with pot” – he’s trialing the medical benefits of cannabis (that sounds way more official).

We did approach the conversation carefully, but we were honest with Anna from the start. Anna is only sixteen, and by all means we do not condone the use of any substances by young people, but — BREAKING NEWS — teenagers have seen more than you think. Anna knows people who use pot for other reasons than trying to alleviate the spasms in their feet. She was not shocked by the word “marijuana” and she understands that what’s good for her brother is NOT good for her (or her curfew).

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Also, people need to remember that Anna is not your average kid. She was six-years-old when her family scattered and she was told that her brother might not survive. She has witnessed the reality of life changing overnight and the fact that there is often not a right and a wrong answer when searching for solutions. Instead there is often a “maybe if we . . . “ and “let’s see if this works”. Anna is interested in studying biomedical engineering. It took me a while to truly understand what that means other than many, many years of education post high school. My limited understanding now appreciates that Anna wants to help create treatments to save lives. ALD, cancer, ALS – watch out. When Anna sets her sites on something, she’s all in.

Now that medical marijuana has been a success in our house Anna seems to be wondering less about the smell in our kitchen and more about what in cannabis is helping Jack. The scientist in her is fascinated. Lucky for us, because I’m more interested in the fact that it’s working then why — it’s probably good to have one person in the house who understands the science behind it.

As far as the stigma on marijuana – we’re getting over that. The more research we do, the more solid we are in our belief that marijuana is a remarkable drug with a host of benefits. Just last week, top scientists at the National Academies of Sciences, Engineering and Medicine weighed in on marijuana and it’s health effects. After considering more that 10,000 studies, they concluded that marijuana is helpful for pain relief, muscle spasms related to MS (a disease similar to ALD), and for treating nausea and vomiting associated with chemotherapy. I think it’s time we all take a look at our medicine cabinets and realize they’re filled with far more harmful things than cannabis. Hopefully we will continue to see positive change in policies regarding marijuana (although after today, who knows?).

So, that’s how we handled the Anna situation. We were honest. I’m not sure how Dan and I would have parented teenagers under different circumstances, but we have ended up be the kind of parents who answer questions honestly and openly. Anna might not know every detail of our histories or every decision we make now, but she knows her share, and Anna has turned into quite an incredible person – I guess we’re not doing such a bad job.

Love, Jess

Anna’s not completely without complaint. When I am baking for Jack, she always reminds me that I NEVER bake for her. Sorry.

GOODBYE 2016!

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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 →

DecemBLUR Magic!

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We’re off for a week in Miami to visit my older brother, Pablo, and his family. Dan, Jack and I are beyond excited with the idea of getting out of town for the holiday and spending time with family in weather over 30 degrees, but Anna gave me a little bit of a hard time, “We’re gone on Christmas? What about Santa?” I did hesitate for a quick minute before realizing that she was more concerned about missing fun parties than the old man with a white beard not being able to find her stocking.

The truth is that I don’t think our children ever believed in Santa Clause.

And I can’t even blame ALD. Long before ALD entered the equation, our kids were realists. They went through the motions, but they weren’t fooling anyone, “Mom – it just doesn’t make any sense.” It’s as if they came into the world a little jaded.

Or, maybe it’s just that Dan and I were too lazy to create a truly “magic” holiday.

Sure, we’ve always gotten a tree and decorated the house. We even put out cookies every year – and carrots for the reindeer. But, Jack and Anna always knew it was a charade. They went up to bed early on Christmas Eve without a fight so that Dan and I could set things up for the morning, and neither could really mask their rolling eyes as they saw the plate of half eaten cookies and the note left from Santa (even since ALD, Jack can still roll his eyes when he needs to).

Dan and I love family time and creating traditions and memories, but we aren’t very good at all the hocus-pocus required to create real holiday magic. Once we get through the planning and the cards and the gifts and the decorating, we’re too exhausted to keep up the performance. We also have done a terrible job at focusing attention on the religious stories behind the holiday. Yet another thing we have managed to mess up.

Despite scaring our children by not fulfilling our parental duties, we do appreciate the holiday season around here. More then the trees and lights and candles, it’s the holiday feeling that I most appreciate. Opening the mail every day and seeing whose faces are hiding in the envelops. The music that is always lingering in the air. How (most) people take an extra moment to thank you and wish you a “Happy Holiday”. With all the ugly in the world right now, a pleasant moment with a stranger can be a pretty magic thing.

Try to pause for a second this DecemBLUR – look past the lights and the trees and appreciate all the real magic that is around us.

Wishing everyone a very MERRY, HAPPY and JOYFUL season!

 

Love, Jess

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I want to be like Harry’s mom

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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

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When “Thank you” isn’t enough – THANK YOU!!!!!

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I hope everyone had a great Thanksgiving. Four days on Block Island in a house full of family, has us all feeling super grateful (and maybe a little exhausted). All things considered, we are one lucky family!

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The support our family has received over the last ten years has been amazing and with the release of Smiles and Duct Tape, it’s all been magnified. I’ve been receiving notes for the last two weeks from friends and family and strangers who have stumbled on the book. I’m so touched by the kind words and thrilled that the book is finding an audience.

The words “thank you” aren’t really enough, but THANK YOU!!!

If you are local, please join our family at WORDS for a reading/signing/Q&A this Thursday, December 1 at 7:30. I can’t promise that I won’t be super nervous (and I will definitely end up in tears at some point), but at least I can THANK YOU in person.

Love, Jess

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Guardianship – Jack made it easy(ish)

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I guess there are worse reasons to take your eighteen-year-old son to court, BUT today was a tough day.

When a person turns 18, they legally become an adult and are expected to make decisions about their life – medical treatment, finances, education, etc. Guardianship is a legal proceeding in which the court is asked to find the person in question unable to manage his/her affairs effectively. A guardian (or guardians) is/are appointed to make all decisions on behalf of the person.

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Today Dan, Jack and I went to court to prove to the State of NJ that Jack is too disabled to care for himself. He is too limited to make decisions regarding his care and well-being. He is (and will always be) dependent on us. Heartbreaking.

Like most heartbreaking things having to do with Jack – it was Jack that made it bearable. He was in a great mood this morning as we got him scrubbed and ready to make a good impression on the judge. He smiled the whole way to Newark, eager to see his buddy Adam (our lawyer) and to meet a few new friends. Jack always loves an adventure.

When we told Jack it was going to be like Law and Order he didn’t seem impressed, but when Dan said, “I wonder if Judge Judy works here”, our boy laughed and laughed. It’s hard to take things too seriously when you have Jack chuckling next to you, but when we needed to go in front of the judge, I could feel the tears start filling my eyes.

Everything went off without a hitch. We just needed to sit as the judge read through all the paperwork – proof that Jack needs us to be his legal guardians (doctor’s notes, school information, interviews with us and others who know Jack). I did my best to ignore the details of Jack’s limitations get repeated over and over again. I’ve developed a talent of keeping a smile on my face and nodding politely as I block out information. Dan’s bruised hand was the only evidence that any of the words actually made it to my ears.

I’ve accepted Jack’s challenges and understand that, as a special family, we need to do this stuff. The only thing that really bothered me about the whole experience today was the use of the word, incapacitated. It was used through the hearing over and over and over again.

incapacitated
(adjective)
 Ivan did not expect to be incapacitated for more than a few days: disabled, debilitated,           indisposed, unfit, impaired; immobilized, paralyzed, out of action, out of commission,    hors de combat; informal laid up. ANTONYMS fit.

I know that words need to be attached to circumstances, but of all things to call Jack — incapacitated is not one I would ever use. He’s more full of life than anyone I know. I understand that he needs (and will likely always need) our care, but as I heard that word I couldn’t help but want to stand up and scream “I OBJECT!”

I didn’t – I played the role of calm mom and didn’t even let myself even cry until I kissed Dan goodbye and dropped Jack safely off at school. I am so #$%^ing glad that it’s over.

Love, Jess (proud guardian of JackO)

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Jack makes things easy(ish)

Morning Selfies

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Every morning Jack and I take a selfie. It’s a gift we give ourselves for surviving the morning chaos.

I’ve described our mornings before, but here’s the short version — teeth, toilet, laundry, shower, get dressed, toilet, downstairs, dogs, medication, hydration, waffles (don’t judge), say good-bye to Anna, toilet (often followed by cleaning the bathroom floor), shoes, jacket, breathe AND sit on the stairs and take a selfie.

This morning’s routine was particularly messy and Jack and I were feeling a little discouraged until we looked at some of our most resent masterpieces. Jack can always turn a sour mood around with his smile – and his scrunchy face.

 

Happy Friday!

Love, Jess

 

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another week walking on eggshells

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Good news, bad news.

I will start with the bad so that I can end on a high note (that’s my thing, in case you haven’t noticed).

I had a mild freak-out last week and asked my poor publisher to make some changes to the manuscript. It may have been my way of delaying the production of SMILES AND DUCT TAPE – it’s been hard for me to let go of this project. Anyway, it worked. We’re about a week behind with the release of the book.

The good news is that the book is now with the printer and it should be in your hands by the end of next week. It’s not too late to pre-order – CLICK HERE!

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Now I can spend another week walking on eggshells.

I’m guessing all first-time authors are nervous as they brace themselves for the public’s reaction to their writing. Add that I’m a girl who couldn’t really read until fifth grade AND I was not born a writer — just ask my high school English teachers. I feel almost ridiculous adding the title of author to my resume. And, it’s not just my words that I’m worried about releasing for judgment – it’s my family. I’m hoping that people find our story inspiring, but who knows . . .

It’s too late now. The book will be out there soon and, whatever happens, our family will survive. THAT is one thing that I can always count on.

Love, Jess
I promise that I AM NOT looking at the book again – no more delays.

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