50

 

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Next month I’m turning 50. I’ve always loved my birthday. For me birthdays are a reminder to reflect on the previous year, an excuse to celebrate the future and … I love presents (honestly, I LOVE PRESENTS). I didn’t just revel in celebrating 10 and 17 and 21, I embraced 25 and 30 and 40, but this birthday feels a little different. It’s 50. 50 sounds so grown-up. 

Shouldn’t I be more responsible? Shouldn’t I know more? Shouldn’t I be able to complete at least the Monday New York Times crossword puzzle? Shouldn’t I have learned to switch to water after the second glass of wine?

Like many of my friends reaching this milestone, I’m finding myself thinking about what I’ve accomplished in the last 5 decades and what I see shaping up for the next half of my life (I could make it to 100).

Overall, I’m fairly pleased with my accomplishments thus far. No fortunes made or much notoriety, but I have plenty that I’m proud of. I survived school (which was tough for me) receiving a bachelor’s and even a master’s degree. I married the love of my life, and with him survived more ups and downs than most couples. I’ve had careers as a photographer, a teacher, a writer and even gotten away with being a nurse when needed. I’ve had three books published (you thought Smiles and Duct Tape was the only one? There’s also Squeeze and Jack and the Pumpkin). I’ve managed to always surround myself with incredible people, who seem to enjoy my company and hold me up when I’m falling. And, I’ve raised two remarkable children – by far, my proudest accomplishment.

Of corse there are things that I regret. I wish that I had learned more languages (at least not lost my first language – Spanish). I wish I had traveled more and not given up on my photography. I wish I invested in Amazon and Apple early on. I wish I had always treated people the way I wanted to be treated. I wish I had learned to always think before I spoke. I wish I had taken more videos of the kids growing up. I wish I had learned how to play the guitar, knit, and sail. . I wish I had pushed for an MRI for Jack, just a few months earlier . . . 

There are things I would change if I could, but for the things I’ve had power over – I’m (mostly) proud. It’s the next half of my life that has me stumped. Dan and I will not have the empty nest that many of our peers are experiencing, but things are quieting down a bit. I’ve been thinking of going back to school to start another career, but am wondering if 50 is too old to start something fresh. I’ve been working further on a few book ideas that have been torturing me from my sleep. I’ve even been thinking about starting a program for adults with special needs – if we can’t find it, we may NEED to build it. All sound ideas, but I’m waiting for that kick in the ass that has always found me when I’ve needed it.

Until then, I am going to busy myself by searching the internet for “good careers for people of a certain age” and “appropriate haircuts for 50-year-old women”. I will also continue to work on finding the perfect adult placement for our boy and maybe sign up for some guitar lessons.

Love, Jess

I will also work on remembering to switch to water after the second glass of wine. No promises.

 

THIS is not Bravo

Why were a dozen people following us around with cameras and piles of questions for the last couple of days? We can tell just yet, but I can promise you that it will be more real than anything you’ve seen on Bravo.*

 

Love, Jess

* I love Bravo – every last bit of their version of reality – it’s just that THIS is not Bravo.

July 2019

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Yesterday afternoon Dan, Jack and I were cooling off in the pool when I realized it was the first quiet moment we’ve had all month. We were too tired for much conversation, but we all had smiles on our faces. Massachusetts, Block Island, Colorado, New Mexico, a party for Jack’s school friends to celebrate his 21st birthday, and more houseguests that I can count. We are all exhausted, but grateful for everyone in our lives who helped make all this fun happen.

For a family with more than our share of “complications”, we always seem to have a lot to celebrate. I’ll write more details about our summer adventures (and some exciting things coming up in August), but for now I will share some photos. Enjoy!!!

 

Love, Jess

PS Anna didn’t enjoy our quiet swim yesterday, because she had left for Block Island for a couple of weeks. When I grow up, I want to be Anna;)

 

hApPy BiRtDaY bAnAnZ!

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Special siblings are a remarkable lot. Many people assume that these children grow up with something missing. Lack of attention and fear course through their veins, leaving them lost or even resentful and angry. I understand why people might make that assumption, but I’ve found that it couldn’t be further from the truth. The special siblings I’ve come to know are incredible people. Thoughtful, independent, hardworking, understanding, patient, and compassionate – just like Anna.

I did worry about Anna when Jack got sick. She was only six-years-old when our family’s attention was suddenly completely focused on Jack and his survival. We only had a few weeks to prepare for transplant following the diagnosis, and then Dan and I weren’t just not emotionally present for Anna, we were rarely physically there either.

Even after Jack got home from the hospital, the entire dynamic of our family had changed. We had been a family who was very focused on evenly dividing our attention, love and patience to our two kids — we never wanted to be accused of having favorites. After ALD screamed into our lives, the disease crumbled our “even-steven” approach to parenting.

We have always done our best to be there for Anna. We cheered loudly at lacrosse games (Dan was lovingly called “Loud Dan” for years), we tried never to miss parent conferences and would sit with her for hours over the dinner table discussing the trials and tribulations of childhood. She’s always known we adore her BUT she’s also always known we were just one diaper change or stomach flu away from dropping everything.

Jack’s illness/challenges trump everything (too bad that expression is so complicated now). If Jack needs to be medicated or changed, we need to take care of it and if he starts throwing up or looks like something is brewing, we don’t have the luxury of waiting. No matter if Anna needed help with her homework or we are knee deep in a project – ALD could interrupt our plans without any warning. We’ve all become accustomed to the interruptions  — especially Anna. It’s part of being a special sibling.

Anna learned early that if she needed to get something done, she needed to know how to do it herself – just in case. Don’t tell the MAPSO schools, but I didn’t sign any school paperwork once Anna hit middle school. Permission slips, notes from teachers – even those nightmare “Information Packets”. Anna took care of them herself. It was safer than putting it on my pile. It might have gotten lost in the medical bills/social security/gaurdianship paperwork. 

This early independence translated to a teenager who handled her college applications with minimal help and now that she’s in college, she doesn’t ask us for much help, other than making sure the bills are paid on time. Not that she doesn’t turn to us for guidance, but she knows how to handle things on her own. It’s how she has survived the ALD part of our family. It’s part of being a special sibling.

Independence has not been the only gift from being a special sibling.

I was getting my boobs squished yesterday (by a professional boob squisher — a mammogram) and I was trying to distract myself by making conversation. I asked if they had any fun plans for the weekend as they tightened the panel, “just one more little bit”. When she asked what my weekend plans were I mentioned that my daughter was coming back from college and we were celebrating her birthday. This, of corse led to where she was in school and what she was studying.

“Pre-Med at Hopkins? Are either you or your husband in medicine?”

I simply answered that her older brother is.

Anna was born strong and determined and Dan and I can take a little credit for who she has become, but Jack has been the biggest influence in her life. It was Jack who inspired Anna to study medicine. It was learning at only six-years-old that nature can be cruel. It was knowing that science saved her brother’s life. It was knowing that there is still so much unknown and she wants to be part of unraveling the mysteries of the human body.

Dan and I try to remind Anna that she’s only 19, and that there’s no need to know what she wants to do with her life, “I’m almost 50 and still trying to figure it out.” Anna’s a talented artist and I encourage her to continue making art. Dan and I both want her to study languages and travel and get the broadest education she possibly can. As much as we put in our two cents, but we know our sweet daughter and when she gets an idea, she can’t turn back. She sets a goal and she exceeds it. It’s who she is. BUT BANANZ IF YOU ARE READING THIS, PLEASE KNOW THAT YOU CAN MAKE CHANGES TO THE PLAN. ANY TIME.

Anna is driving up the NJ Turnpike from Baltimore as I am writing this. I can’t wait to get my hands on her and wish her a happy birthday in person. I can’t wait to watch as Jack jumps out of his chair to throw his arms around her until she screams for mercy. I also can’t wait to see where her life takes her. I wish Special Sibling didn’t need to be one of Anna’s titles, but it is and I appreciate some of the things that it’s taught her. With the combination of Jack’s inspiration to go into medicine and what Anna has learned as a result of being a special sibling, I have no doubt that she will do amazing things.

Happy Birthday Anna Banana – our very favorite special sibling.

Love, MoMo

The Three P’s

Everyone knows that moving is a stressful experience. It’s the three P’s — Purging, Packing, and Paperwork. Is there anyone who really enjoys any of those activities, and all three at once is enough to send you over the edge!! … Continue reading

THIS is ALD #22 — Alexis, Gerald and Jacob

It’s been a while since I’ve shared a THIS is ALD story, so I reached out to our ALD community. Within a few minutes I heard from several families willing to share their stories. The first is from Kiomara.  

THIS is ALD #22 — Alexis, Gerald and Jacob.

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When I was 8-years-old, my 6-year-old brother Alexis suddenly lost his vision. After a long week at the Puerto Rico University Pediatric Hospital, the doctors told my parents that my brother had Adrenoleukodystrophy (ALD). My parents traveled with my brother to Baltimore, MD where they met with Dr. Hugo Moser and Dr. Raymond (leaders in ALD at the Kennedy Krieger Institute at the time). They were told that it was too late for a BMT (bone marrow transplant), but Alexis started taking Lorenzo’s Oil (a mixture of oils thought to slow the progression of the disease). Alexis stayed with us for 12 years, until he lost his battle when he was 18-years-old.

It was a terrible loss for our family, but my sister and I say that Alexis saved his two nephews’ lives. My 31-year-old sister has a 7-year-old son. His name is Gerald. He was diagnosed with ALD at birth because we knew that we were carriers. I am 33-years-old and I have an 18-month-old son named Jacob. When he was born I requested that he be tested for ALD and two weeks later I was told that Jacob tested positive for ALD.

Now we have a long way to go to prevent this disease from winning. Trusting in God and with our angel, Alexis, we know we will win. My sister left Puerto Rico and now lives in Massachusetts and my nephew is evaluated every 6 months by Dr. Eichler (a leader in ALD at Massachusetts General Hospital). I live in Georgia and travel annually for Jacob to be evaluated by Dr. Eichler. Thanks to my beautiful brother, my son and nephew are being monitored and will be treated early if there are any signs of active disease.

I hate this ALD, and don’t want to lose anymore boys in my family to this horrible disease. 

— Kiomara

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Learning about Kiomara’s brother Alexis and how he saved his nephew’s lives, made me think about the importance of Newborn Screening. Newborn Screening is a huge topic in the ALD community. ALD is currently on the Newborn Screening Panel in 10 states, will be testing soon in another 5 states and are mobilizing efforts in 12 others. Why is it so important? Because it gives the power back to the family. 

Without an early diagnosis, Alexis was not able to be treated and the disease continued to progress. Because the family knew to look for ALD following Alexis’ passing, Gerald and Jacob had the luxury of an early diagnosis. Their families are working with a top ALD doctor and the boys are being closely monitored. If there is any hint of the disease starting to progress, they are prepared to begin treatment quickly — before significant damage can occur. Looking at the photos of these beautiful boys, I’m grateful that their stories will be different than many with ALD. They are the future of our disease. A future that is far brighter than past generations.

Thank you Kiomara for sharing your family’s story.

Love, Jess

give me some NOISE!!

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!!!!!!!!!

ALD — crappy disease/amazing people

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!!!

 

never too old to dress up;)

I realize that my children are 18 and 20, but they both still LOVE to dress up for Halloween.

Being off at school, Anna left few hints of her plans, other than an Amazon purchase that I did NOT approve (you still owe me $30 Banana). She had two parties this weekend and sent me photos of her costumes. Although I know that it’s inappropriate for my underage girl, I couldn’t help but laugh at her first costume – Whispering Angel.

IMG_3673And, who doesn’t love a good vampire?

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I had to be more hands-on with Jack’s costume. I spent weeks trying to find a clever idea, when it found me at Target last Friday. A large flamingo hat almost screamed at me from an isle full of Michael Myers, Demogorgons and Black Panthers. I introduce you to The Dancing Flamingo!! ****

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I got to spend some time with the Flamingo at the Trunk & Treats event at CPNJ Horizon High School. Always fun to hang with Jack and his schoolmates AND I got to sneak in a little last minute campaigning. Not sure if you’ve heard, but there is an election coming up next week . . .  Jack is running for president!!

 

Tomorrow I head down to Philadelphia for the ALD Connect Annual Meeting and Patient Learning Academy. This year they are hosting a book club where I am leading the discussion on Smiles and Duct Tape. I’m looking forward to spending time with many of our ALD community and introducing Jack (and Dan, Anna, Mymom and Nonno) to the crew.

Love, Jess

**** In case you are new to Smiles and Duct Tape, Dancing Flamingo has been a nickname for our boy for a while. To learn why, CLICK HERE.

 

 

two hours, some hugs, a godfather and a shave

Anna headed north this weekend to visit her boyfriend, Will, at Fordham. We tried not to give her a hard time for choosing him over us – after all, she’s in college, we just saw her two weeks ago and she’s in love. We followed her through texts and social media as she explored his campus and then headed to see friends at NYU. It’s still strange going from knowing every detail of your kid’s life, to hearing about adventures after the fact — or watching them realtime on my iPhone.

She and Will decided to head home Saturday to hangout with some pals who were in town. We had plans to go to visit family in Pennsylvania, so we left Anna with strict instructions to watch the dogs, lock the doors and NOT have a party. Then we watched her come home for the first time in two months through our Nest cameras — I know it’s creepy (we have them for security).

Anna had a great time (and no party that I could see from my iPhone) and we also had a great time seeing the Perry/Brooklyn Torrey gang, but as soon as we ate breakfast Sunday, we said goodbye so that we could catch Anna before her Bolt Bus took her back to Charm City. It left us with a two hour visit with Bananz.

Two hours with our girl doesn’t sound like a lot, but we made the most of it.

Walking in the door of our house I needed to look passed the stuff littering the foyer floor and pile of dishes in the sink to focus on loving our girl. We hung out around the kitchen island, enjoying sandwiches from the Millburn Deli (Anna’s got her Godfather fix) and hearing all about how everyone is doing. Funny that when I asked about how her pals were doing, Anna started with unfamiliar names. It took me a minute to realize that she was talking about her Hopkins friends — another reminder that things have changed a bit. We did eventually hear about the adventures of the kids we’ve known since elementary school — I miss all those wonderful humans and am thrilled to hear they’re doing well.

After lunch, we got to do what has become an important activity when visiting with Anna. Shaving.

I hate shaving Jack. For some reason shaving my twenty-year-old son, while he’s being held down making horrible faces, is painful for me — as if it puts a spotlight over how different our lives are. Since Anna left for college, I look at anyone who walks into our house as a potential barber. Be warned — if you come for a visit, you could be next. We’ve had a few good volunteers, but no one is as skilled as Anna. She manages to keep Jack smiling and gets every last hair without a nick or a scratch.

The barber decided it was time for to say goodbye to the goatee. I rather liked it, but it’s barber’s choice at our house, and he does look awfully handsome!

After the shave, it was time to say goodbye. It’s always hard to say goodbye to Bananz, but we will see her in two weeks for the ALD Connect meeting and my nephew’s baptism, and Thanksgiving is right around the corner!

I’ve got to say – I am getting better with being a college mom.

Love, Jess

Did you ever read Anna’s college essay? If not – CLICK HERE!