Banana is 20!

Today is Anna’s 20th birthday. Like so many people, she isn’t celebrating it the way she had planned. Anna loves her birthday almost as much as I do, and she has been talking about her birthday plans since last June. Piles of her Hopkins crew would fill our house and then her childhood friends would join in and fill the yard and pool. Driving the neighbors crazy was really the only thing we worried about until COVID arrived. 

We modified the plan and then modified it again. Now we are hoping that the weather holds so that a few of her friends can come for some from a distance/Purell-filled fun in the pool. If that doesn’t work ,out at least she can celebrate with her three biggest fans – me, Dan and Jack.

The last four months have been filled with cancelled plans and profoundly adapting everything else. It wasn’t just her birthday, Anna’s entire summer has been altered. She was going to be waitressing here in town and then working in NYC with a doctor who works with children with neurological disorders (specifically Leukodystrophies). The waitressing job disappeared and then Anna got word that the hospital where she was doing her internship was only allowing “essential staff” on premises. Luckily the doctor was willing to adapt his plans and Anna is spending hours a day in her room working on a project that I don’t really understand, but she finds fascinating.

Anna has also found a job with the Department of Developmental Disabilities working with a handsome young man with special needs — Jack. She has hikes planned and has already been working on swimming lessons for our boy. Jack has had a lot of caregivers over the years, but I can say, without a doubt, that he has found his new favorite. And, for Anna, it is incredible to actually be getting paid for something she has always done without complaint. She adores spending time with her brother. She is a truly special — special sibling.

Anna is such a special young woman and I’ve always been proud of her heart and brain and determination, but COVID has shown me another quality she has that I appreciate. Anna is able to adapt. Our family tends to be “glass half full” people, but Anna seems to look at every glass as over-flowing.

Love you Banana and hope that you enjoy your quiet(ish) birthday!!! It may not be the birthday party of the year, but we promise that when the dust settles, we will P-A-R-T-Y!!

Love, Mom

PS As I have been writing this, I’ve been seeing friends sneak through the backyard gate. I need to go out there and start screaming, “Six Feet!!” and “Purell!!!”.

ALD Connect Peer Mentor Program

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Thirteen years ago we were in the hospital living through transplant. We’d only heard the word Adrenoleukodystrophy for the first time four weeks earlier. We didn’t know anyone who had ALD or who had even heard of the disease. Our doctors didn’t even have much information to share.

We were terrified and we were completely isolated.

It took months to connect with any other ALD families — it was a time before social media and Googling ALD simply lead us to horrifying stories and even more horrifying statistics. Once we found a couple of other ALD families, we did find some comfort, but it was often short-lived as their journey’s took turns down dark paths. Fear and guilt weighed heavy in continuing those relationships.

It took years before our family really found our ALD community. Smiles and Duct Tape – the blog, then the book – found it’s way into the hands of a member of the board of ALD Connect and she reached out to encouraged me to go to their next meeting (thanks Kathleen). Attending a panel of ALD patients and caregivers and then my first ALD Connect Annual Meeting was empowering. It was years after Jack’s diagnosis and transplant and it was when I first realized that our family had reached another chapter in our ALD journey. Being surrounded by people who knew our disease – who lived our disease – was inspiring. And, we were no longer weighed down by fear and guilt and were finally strong enough to be able to provide help. Sharing our story with other families and doctors and organizations studying our disease — it’s (I hope) helped other people, but it’s absolutely helped our family find strength and take some power back.

ALD Connect asked me to attend a meeting last year to find out more about peer to peer support programs and how they can help rare diseases like ours. I was honored to be asked to represent ALD Connect and found the conference fascinating and reminded me of how our family felt thirteen years ago. Scared and alone.

The first speaker at the conference talked about the added stress of feeling isolated that families go through when facing a rare disease. They’re not just battling the disease, they are often battling the disease without any support from people who understand the disease the way ONLY PEOPLE WHO HAVE LIVED IT can understand.

ALD is a horrible disease, but the people effected are an incredible group. It took me a while, but most ALD families don’t take years to find the strength to help others. AND, thanks to social media, our community has been able to more easily find each other. Informally, many in our community have been acting as mentors, but ALD Connect is now rolling out a more formal program.

The ALD Connect Peer Mentor Program is now welcoming our ALD community to reach out if they would like to be paired with someone within our community who has experienced a similar path with the disease. A group of incredible mentors have been selected, representing each phenotype of our disease, and they are looking forward to being a resource for support, encouragement and a shoulder when needed. Please contact me or admin@aldconnect.org if you are interested.

A year ago today. Really?

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Thank you Speir Drive. Not that spending 49 days inside your walls with limited company* has been super fun, but you’ve made it bearable. Dan has a proper office that’s removed from distraction. Anna has the second floor to herself. Even JackO has found spaces to attend his Zoom classes. We have all settled into our new routine fairly easily. Each day Dan’s at “work”, the kids are at “school” and I’m the cook/housekeeper/teacher/baker/online shopping ninja/puzzle solver (okay, maybe I’m not completely settled in, but at least I’m busy(ish)).
When we’re not working (and the weather is cooperating), we’re all enjoying the quiet oasis that is our backyard. We’ve cleaned things up and built a lovely garden that we’re going to fill with vegetables and herbs as soon as the fear of a frost is off the table. We’ve even had the pool folks out to start fixing it up for a long — hopefully not lonely — season (Dan thinks I am nuts, but I have a feeling that he will appreciate it once it’s open and has a working heater).
We loved Clinton Avenue, and will forever miss our neighbors, but this is our home now and we are grateful for it’s flat living and ability to provide private space for everyone and a nice open living area when we want to meet up at the end of the day.
We bought this house last year to make life a little easier. We sold our 1905 center hall colonial with it’s three floors and traded it for a modified mid-century ranch. Jack could live without steps and it’s open floor plan seemed better suited for keeping an eye on him. Dan and I were excited about an attached garage that fit our cars and our old doggies appreciated being able to get to the yard without steep steps. The pool wasn’t part of the plan, but all of us thought it was a fun plus.
We never imagined when we moved in last year that our first spring in this house would arrive with a pandemic. We never pictured Anna coming home in mid march and taking college classes online from her new bedroom OR Jack doing his classes and therapies from a computer on the kitchen island OR Dan taking zoom business meetings in his pajama pants OR me looking forward to using the new mop that was just delivered by a UPS driver wearing a mask and gloves OR using our dog sheers to cut Dan and Jack’s hair OR freaking out when we’re running low on Clorox wipes OR realizing we haven’t purchased gas in six weeks OR needing to check the computer to see what day it is . . .
We never imagined any of this when we moved in last May, BUT this is where we are, and this house has helped us while we’ve been adjusting to this new TEMPORARY normal.
COVID-19 has made life complicated for everyone on the planet. As strange as it’s been for our family, I know how lucky we are. We are all healthy, Dan is able to work from home, we have a fridge full of food, our bathrooms have extra toilet paper, we have a beautiful yard to enjoy the fresh air, my parents have been able to visit, Maria (Jack’s caregiver) is still coming to help out with Jack, and our family is (mostly) enjoying each other’s company AND our quirky new house.
Happy Anniversary Speir Drive! Thanks for keeping us warm and safe this year. We look forward to many more years living here and can’t wait to fill you up again with friends and family — Jack’s graduation? Anna’s birthday? July 4th? Labor Day? Thanksgiving? 
Love, Jess
* My parents have joined us several times and Maria (Jack’s caregiver) is still coming. All three of them have been safely quarantining at home when not here.

She Can’t Sing

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She can’t sing.

I mean that seriously. She’s terrible. Like – hurt your ears bad. What makes it worse is that she tries. Sings loud and proud, but she shouldn’t. Because she’s dreadful.

I know it sounds mean, but we point it out whenever we have the opportunity. After all, isn’t that our job as parents? We can’t always just be applauding her.

Anna excels at academics, athletics, and artistic ability. She’s kind and graceful and beautiful. She’s generous and funny. It’s a little obnoxious, so we feel like it’s important to remind her that she will never be on The Voice or on Broadway. And, if she cares about people’s hearing — she should never even sing karaoke.

I wish I could take credit for half of who Anna is, but I think she is who she is because everything just came together and fit — like one of those 1000 piece puzzles with a huge amount of sky. You think there’s no way anyone can make it happen, but it does (at least on Block Island with Nana Sue taking the lead).

Anna was born determined and smart and when life changed for our family, she managed to get what she needed and continued growing and learning. I’m proud of all of her accomplishments, but when she does something that I can actually understand, I’m in awe.

Anna wrote a blog piece for Remember the Girls — an incredible organization founded by Taylor Kane, created to give a voice to women/carriers of x-linked diseases. Anna wrote about being tested for ALD. Her voice shines through in this piece and I couldn’t be prouder. She can’t sing, but she can write.

My Experience Getting Tested for the ALD Gene

Love you Banana.

Love, Momo

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