Monthly Archives: November 2018

no need for a recount

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I try not to get political on this blog. One reason is that I know that there probably isn’t anything I could say that would ever change anyone’s mind AND I’m guessing that considering I’m a pot-brownie baking, Latin American born woman who has a son with disabilities/pre-existing conditions and a daughter who is set to break many glass ceilings – you know where I stand.

In the last two years, the word president has taken on a new definition. Often more of a punchline than a title of respect and honor. So, when I saw this poster hanging on the walls of CPNJ Horizon High School a few months ago I was rather surprised. Who would want THAT job?

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You know our boy is always up for a challenge. Jack ran his campaign with the motto of being the “voice of the high school”. I can assure you that it was not an empty promise. Jack may not speak, but he understands everything and has the pulse on what is important to his classmates. He listens, he understands, and he knows how to get things done. My guess is that had he won, there would have been a few extra dance parties added to the calendar this year.

That’s right. Jack did not win. He lost to a very worthy opponent and Jack conceded with grace. From what I understand he shook the new president’s hand and wished him well (with his iPAD).

When I got the news, I can’t say that my first reaction was as full of grace. It was more, “What the F*%&!?!? How did my boy NOT win!?!?!”Jack’s life fell apart 11 years ago, but we glued (or taped) it back together and now he should get EVERYTHING he wants!!!”

Once I caught my breath, I laughed. Who needs all that work anyway? Besides, I love that his school doesn’t have an “all kids win everything” policy. Just because the students have complicated lives, doesn’t mean that they can’t handle some disappointments. In fact, I’d argue that this is a crew can handle more than most people in Washington.

Still, I worried a little about how Jack was feeling, so I picked him up early and greeted him with a big hug. He didn’t seem an worse for wear. I told him how proud of him we all are and that he should be proud that he ran an honest campaign without any outside interference from Russia. Then, I reminded him that he still won the popular vote at our house. He popped me on the head, smiled and got in the car.

Jack’s up for his next challenge. Maybe Prom King?
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Love, Jess

Halloween 2016 – we thought it was funny. Elections don’t always go as expected.

 

Our Thanksgiving Chime

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The calm before the storm

We have an alarm that sounds every time the front door opens — a two-note chime. It’s usually followed by Finn (bad dog) barking loudly and racing to see who’s arrived and how long he can get away with jumping all over them. Last week, the constant chime exhausted poor Finn so that by Wednesday, all he could manage was to lift his head off the couch for a second to see who’d walked in the door before returning to his nap. 

At the beginning of the week, I too would race to see who’d arrived so that I could give them some love and offer them a snack or something to drink. After a couple of days, I figured everyone knew that I loved them and how to walk to the kitchen.

Anna was home for Thanksgiving (THANKS GOODNESS) and our dear friends – the Mackays – joined us for the holiday week. An extra five people and a dog, adding some noise to our “far too quiet since Anna left for college” house.

We invited another ten people and two dogs for Thanksgiving Day. Nineteen humans, five dogs, two turkeys (one fried), six pies, two stuffings, bourbon sweet potatoes, mashed potatoes, green beans, salad, cranberry sauce, and more wine then our poor recycling cans could manage. Crazy, delicious, fun AND constant door chimes.

We said goodbye after Thanksgiving dinner to ten guests and two dogs, but added two more people on Friday (my best friend from college, Enger, and Katie Mackays roommate, Hanna). I feared we’d not have the energy to entertain them, but we managed. We even threw in a little party on Saturday night to round off the week!

The front door kept on chiming.

Yesterday we woke up and everyone did their part cleaning up the house, stripping beds and starting the laundry. Then, one by one everyone headed out – back to college, work, reality. I usually love the quiet after the storm of a holiday, but everything was so perfect last week, that I really didn’t want it to end.

I’ve been stressing lately about some things, but when it comes down to it, our lives are wonderful. Our friends, our family – they’re really all that matters. I can’t wait for the holidays to continue. We need some time with the Torrey side – and our door needs to go back to chiming!!

Love, Jess

PS Anna comes home in 17 days and the Mackays promised to come for New Years!!!!

 

give me some NOISE!!

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In the old days – before Anna left for college – I loved that moment when I closed the front door after putting Jack on the bus. Besides my four-legged friends, I had a quiet house to myself for the next seven hours. The mornings at our house are rather chaotic, and the silence of that moment was a welcome guest. These days, I close the door and crave some noise.

The quiet is driving me nuts!!!

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I’ve always loved every inch of our girl, but I never appreciated the noise Anna omitted. The music blaring from the bathroom as she showered. The sound of her feet pounding up and down the stairs as she searched for her missing keys. Her screaming down from her third floor hideaway that she will be down for breakfast in, “JUST ONE MORE MINUTE!!”

And, the afternoons were filled with more noisy commotion. Anna would walk in the door from school sharing tales from the high-school hallways. Crazy teachers, teenage gossip, mean girls, unfair/interesting/unusual assignments. Often her boyfriend, Will, would be at her side filling any gaps in the conversation with stories of his own. I sometimes wished that they would slow down and catch a breath, but now I miss those loud afternoons.

It’s not just me who is missing the noise. I need to be careful about the silence with JackO, especially when Dan is away. Dan’s always traveled more than most, and our family has adapted over the years. I hate when he’s gone for more than a few days, but short trips have always been fine. A time to simplify dinners, finish house projects and catch up on Bravo. Now when he travels, I’m finding I need to fill our time and the silence with more than just frozen dinners, cleaning closets and Real Housewives.

Yesterday, I picked up Jack from school and we came home, made dinner, ate dinner and started our hydration/medication routine when I realized that we hadn’t said a word for over an hour. To be fair, Jack hasn’t said a word in 11 years, but I have no excuse. Just because he doesn’t speak, doesn’t mean that Jack doesn’t crave some conversation.

Last night when I noticed the silence filling our house, I quickly turned on some music and started telling Jack stories about my day. Then we sat down and face-timed Anna and then Dan. This morning I made sure to get through our morning routine with more than just CBS News filling the air. We chatted, looked at Jack Mackay’s video (one of our Jack’s oldest friends, favorite humans and now one of his heros) a dozen times, and took some pictures.

First he strangles — then he demands a kiss;)

 

After Jack got on the bus and I closed the front door, I thought of all the things I could do to continue filling my day with noise. I turned up the music and reminded myself that Dan gets home soon and our noisy girl gets home on Friday! Life is good.

Love, Jess

PS Next week I suspect I will be sharing that I need some quiet — 19 people and 5 dogs are coming for Thanksgiving. I can’t wait!!!!!!!!!

Mr. Bus

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Last week Jack’s bus driver told me that he was retiring. I’d be lying if I said that we had a close relationship. Sure, I’ve seen Mr. Bus every weekday morning for the last couple of years, but mostly it’s been a series of quick hellos and goodbyes. That said, I did make a point of telling myself to grab a little gift for him as a thank you.

I forgot.

Friday morning I remembered and started scrambling around the house searching for a gift. I usually have some Amazon gift cards handy (you should see the list of teacher gifts we deliver twice a year), but I couldn’t find anything. Then it occurred to me that I could give Mr. Bus a copy of Smiles and Duct Tape. I wrapped up the book with a big gold bow and as I handed it to Mr. Bus I said, “Thank you for everything you’ve done for Jack and his buddies. All these kids have a story. This book is Jack’s story.”

He looked down at the book and I couldn’t help but think he was a little disappointed that it wasn’t a gift card or a nice box of chocolates, but he said, “Thank you.”. I stepped off the bus, closed the door, waved goodbye and walked back into the house — that was it. People often come and go in life without much of an impact.

To my surprise, Mr. Bus returned to our house on Monday. He explained that the new driver couldn’t start for a few days. Then, he said that he’d started the book and wanted to thank me for sharing it, “All these years and I loved working with these kids, but never gave much thought as to how they got here.”

It was sweet and I was relieved that my gift hadn’t ended up on a dusty shelf. We spoke for a few minutes about Jack, our family and Mr. Bus’ retirement plans. Then I stepped off the bus, closed the door, waved goodbye and walked back into the house.

This morning Mr Bus arrived and announced that today was officially his last day. I put Jack in his seat and asked Mr. Bus if I could give him a hug goodbye. He didn’t hesitate. He got out of his seat, climbed off the bus and walked around to the sidewalk. We hugged like old friends, then he grabbed me by the shoulders, looked me in the eyes and said, “Mrs. Torrey, I finished the book and I want you to know that before God comes to take you home, you’re going to hear Jack’s voice again. I had one of those dreams last night.”

I couldn’t really speak through the tears that were suddenly pouring out of me. All I could do was nod and say, “Thank you.”

Mr. Bus climbed back into the bus, gave me a wave goodbye and pulled away. I stood frozen on the sidewalk.

People often come and go in life without much of an impact. Sometimes all you need to do is give a little and it’s amazing what you can get back.

Love, Jess

ALD — crappy disease/amazing people

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I hate that I know how to spell Adrenoleukodystrophy and know words like phenotype and chimerism. I hate knowing the difference between stem cell transplantation and gene therapy. I hate that I know dozens of mothers who have watched their sons suffer for months, losing all their abilities before this hideous disease stole them completely. I hate knowing that the disease that has effected every inch of my son’s life may start progressing in me.

I hate ALD — every little part of it except for one. The people!

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I just spent two days surrounded by ALD parents, patients, researchers and doctors at the ALD Connect Annual Meeting and feel overwhelmed by the love and support that filled the room. I’ve walked way feeling extremely lucky to be part of this community.

I talk about our duct tape a lot on this blog. Duct tape representing the people and things that have helped hold us together for the last eleven years. We would not have survived without our friends and family and teachers and doctors and therapists and nurses and dinners and wine. We’re so grateful and now we are adding our ALD family to the mix. At this point in our ALD journey, being part of this community is helping us take back some of the power the disease stole from our family.

The ALD Connect Annual Metting is all about learning and sharing. I have notes about different treatments and potential therapies that may lead to a cure for ALD.  I listened to how other counties are battling our disease. I heard about the remarkable momentum of newborn screening. I heard countless stories of strength and courage. I learned diapering tricks that made some people at our table cringe, but I can’t wait to try out. I shared Jack’s story, spent time with people I’ve known for years and met many who are new to our community.

Thanks to newborn screening, there is a new, quickly growing group in our community. Young families that have just learned of the disease and that their children have the mutation. These families have been thrown into our world and are holding on tightly to their beautiful children as they learn how to monitor and plan for a disease that MAY effect their child sooner or later.

Sitting in a room with parents who have lost children, parents whose children have survived treatment with varies amounts of success, and patients who are struggling every day with symptoms of the disease — I kept going from feeling sorry for these newborn screening parents to being painfully jealous of them.

When Jack was young and healthy, we had the luxury of just living. I can’t imagine having known what his future would hold. All the worry – all the planning. But, the benefit of having the knowledge that an early diagnosis provides, allows these families to prepare for the onset of the disease and will likely prevent following the same path that so many of us have been forced to follow. For two days I kept reminding these young parents that their stories will be different. They have the power in their hands to have treatments ready when/if their children need it. I also kept reminding myself that we can’t change Jack’s path, but if we can help others, we’re kicking ALD where it hurts.

 

Dan, Jack, Nonno and Mymom came down to join the Smiles and Duct Tape Book Club. I got to share our family’s story and it turned into a wonderful opportunity for many to share their own stories. Jack – as always – was a huge hit. For a kid with a lot of challenges, he always seems to have everyone around him smiling. Anna met me as the meeting was winding down, but she got to hear some remarkable presentations that further encouraged her to study hard and keep reaching for her goals.

I’m a little exhausted and need to make sense of my notes, but I’m already looking forward to the next excuse to spend time with our ALD community.

Thank you ALD people — I hate our disease, but I love the people!!!

Love, Jess

PS I was telling a friend about all the amazing people at the conference and kept referring to the newborn screening parents as the Newborn Housewives. My love of Bravo is ever-present and trust me — these ladies (and gentlemen) are as real (and amazing) as they get!!!