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.

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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!

National Daughter’s Day

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I missed National Daughter’s Day. Just one day without looking at my Facebook feed, and when I returned I was bombarded with piles of sweet pictures of everyone’s daughters. I felt like crap. How could I have missed National Daughter’s Day?!?

I went instantly to my phone, searching for the cutest photo of me and my girl to show everyone that I’m NOT a bad mom and that my daughter is way better than everyone else’s. I narrowed it down to a few good shots and thought about FaceTiming Anna for her advice, before realizing that I was acting crazy. I don’t need a National Day to remember I have a daughter or to celebrate her — I do a pretty good job doing those things on my own.

Not sure about you, but I can’t keep up. It seems that every day there is another National Day/Month reminding us to celebrate, remember or eat.

There are some great ones:

October 5 — World Teacher’s Day
June — Pride Month
June 20 — World Refugee Day
September — Leukodystrophy Awareness Month (for us, every month is Leukodystrophy Awareness Month)
November 27 — Giving Tuesday

Those are good ones, but then there are these:

January 4 — National Spaghetti Day
June — Turkey Lover’s Month
October 5 — National Do Something Nice Day (we need a day for this?)
June 1 — National Donut Day
June 9 — National Rose Day (I didn’t see one for Sauvignon Blanc, but June 14 is National Bourbon Day and September 7 is National Beer Lover’s Day)
October 15 — Global Hand Washing Day
September 16 — Wife Appreciation Day (just one day?)
March 10 — National Landline Telephone Day
June 21 — National Selfie Day
April 10 — Be Kind to Lawyers Day

The problem with these holidays is they distracted from things that should truly be celebrated AND they have people scrambling to join in. If you don’t eat ice cream on July 15, you’re missing out. If you don’t post a cute picture of your daughter on National Daughter’s Day you are a bad mom. So we keep going. I’m all for celebrating, but don’t you think it’s getting a little ridiculous? When we celebrate everything from quiche (May 14) to paperclips (April 4) to watches (June 19) to kite flying (February 8) isn’t it taking away from living in the moment? What if I don’t want quiche on May 14th, but I’m really digging the clam chowder that’s in front of me (National Clam Chowder Day is February 25) — should I feel guilty?

Perhaps we should consider celebrating things we love every single day.

I am trying to stop, but now I can’t stop looking at the National Days list. I wondered what National Days corresponded with our birthdays.

Dan’s Birthday (March 2) — National Read Across America Day (Dan does like to read and he loves America).

Anna’s Birthday (June 28) — National Tapioca Day (and National Nude Day, but let’s focus on tapioca . . . not sure if Anna has ever tasted tapioca, but I bet she would like it).

Jack’s Birthday (August 5) — National Underwear Day (NOT National Diaper Day? There is a Diaper Need Awareness Week in September, which is a lovely, but we need a new day on the calendar just for 20-year-old men who wear diapers). August 5 is also National Sister Day (THAT is perfect!!!)

My Birthday (November 19) — World Toilet Day (if you’ve spent time with me and my small, ALD affected bladder you know that this makes perfect sense).

In case you’re wondering. Today, September 27th, is National Chocolate Milk Day Day. Who knew???

Love, Jess

I don’t think I need to, but why not share some photos of my sweet daughter;)

Happy Belated Daughter’s Day!!!

lunch – the recap

In case you missed Wednesday’s post – CLICK HERE.

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seven hours of driving + a quick tour of campus + lunch with our girl = best day EVER!

It was just what we all needed. Seeing Anna in her element helped me let go of my nerves about how she’s doing. She’s thriving. Her classwork is interesting, she loves exploring Baltimore and has made many wonderful new friends (we got to meet several). Two hours of showing us around her new turf and a fun lunch and we were on our way. Saying goodbye was not easy, but we will see Anna for Parent’s Weekend in a couple of weeks and again in early November for Cousin Carlos’ Baptism. Thank goodness – we need more Anna time!

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Saying goodbye wasn’t easy.

Thank you for all the love and support this week. I heard from many moms that they’re feeling the same way and I’m not alone in the crazy drive/hug/lunch/hug/drive. I also heard from a few kids who shared that they appreciate crazy drive/hug/lunch/hug/drives! I sure hope Anna did, because I have a feeling this won’t be the only time I pull this stunt;)

Thank you Anna for being you and, thank you Jack and Mymom for being my partners in crime!!!!!!

Love, Jess

 

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Several years ago, I was getting my nails done when I ran into a friend whose son had just left for college in Boston. We were chatting all about the excitement of drop-off and what it felt like getting home one kid down. She admitted that the transition had left her feeling a little lost and that she was planning to head up the next day to take her son out to lunch, “What? For lunch? In Boston?”

Maplewood to Boston is a 4 1/2 hour drive. I walked away from the conversation relieved that I would never be THAT crazy.

Jack, Mymom and I are driving to Baltimore to see Anna tomorrow. For lunch.

We’ve been busy trying to get into the rhythm of our new nest. I’m feeling a little less lost than I had expected, but it’s not easy. As long as I stay busy I’m okay, but when the chaos of life quiets, I get teary. The result is that our house has never been as clean and I seem to be very on top of my my TO DO list and piles of paperwork. I am looking for anything that can distract me from the quiet. Things like writing and walking are a little harder to do – too much time to think about how much I miss our girl. It’s better for me to stay in motion.

FaceTime is a luxury that I hadn’t expected. I’m trying not to over-do it, but at least once a day we sit down for our call.

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Thirty years ago, there were two pay phones at the end of my dorm hallway. My parents would call on Sunday mornings at 10:00 am. It wasn’t just their chance to catch up, but it was assurance that I was awake at 10:00 am on a Sunday (As soon as I got off the phone, I would crawl back into bed). Within a few months, I got a phone in my dorm room. Still, the phone calls from home were limited. It’s not that my folks weren’t eager to speak with me, but times were different. 

There is a lot of talk among my circle of friends — maybe we shouldn’t call too much. We need to let our kids fly. They need their independence. We need our independence.

Perhaps this generation is too in touch, but I don’t care. I love chatting with Anna as she’s walking across campus in the sticky Baltimore heat. I love that I am starting to learn the names of her new pals and a little about her classes. AND, I love that Jack is able to not just hear his sister, but see her. This transition has been hard for all of us, but for Jack it’s been particularly difficult. 

Although we’d been preparing for months for this new reality, Jack seems to be constantly waiting for his favorite person to walk into the room. When her picture appears on the iPhone  screen, he lights up. They spend a few minutes making their silly faces as Banana tells her Booger how much she misses him. Parent’s Weekend is just a couple of weeks away, but we can’t wait.

So . . . we’re getting in the car tomorrow morning and driving 4 hours to take our Anna out for lunch. If anyone asks, I tell them that it’s because Mymom hasn’t seen Anna in a few months and the Jack really NEEDS a visit. That’s not completely true. It will be a lot of driving for a short visit, but I’ve never been as excited for a day trip in my life.

Love, Jess

To my friend from the nail salon – I owe you one. A lunch visit is a fine idea – NOTHING CRAZY ABOUT IT!!!!