Category Archives: sister

Full Circle

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Yesterday was the anniversary of receiving Jack’s ALD diagnosis. 16 years since we heard the word Adrenoleukodystrophy for the first time. We were in a small room behind the nurse’s station on the 6th floor of Morgan Stanley Children’s Hospital at NewYork-Presbyterian Columbia. The room was filled with people as Dan and I sat on a small sofa trying to take in the news that Jack’s symptoms were a result of Adrenoleukodystrophy. That Jack may die. That he needed a horrible treatment if we wanted any hope of saving him. That our lives had changed forever.

Later that day, I was taking a walk to clear my head and I saw a sign — AMAZING THINGS ARE HAPPENING HERE.  All I could think was – there better F$%^ING be!

AMAZING THINGS ARE HAPPENING HERE is an ad campaign that continues at NewYork-Presbyterian Columbia. Every time I see it, I take a breath and nod my head. Amazing things are happening behind their walls. Lives are being saved, new treatments are being used, and doctors are being trained.

We learned that NewYork-Presbyterian Columbia was a teaching hospital when a month into our stay there, a pile of young faces marched into our room to meet Jack. We’d been asked if it was okay for a few medical students to stop by with their instructor. They wanted to learn more about ALD. We agreed and, later that day during my nightly call with Anna, I shared how cool it was to watch soon-to-be-doctors learn about our disease.

Anna soaked in the story. She was already thinking that being a doctor was in her future.

For 16 years, Anna’s determination to be a doctor has been incredible to witness. Her brain allowed her to excel in many subjects, but she chose to focus on the sciences. She could have gone to any college, but she chose Johns Hopkins University knowing it was the top pre-med program. She could have made some extra money working as a server or a bartender, but she instead spent countless hours working for extraordinary doctors and researchers. She studied hard, graduated in just six semesters, and nailed the MCAT exam with a top score. Although she reminded us often that there was no guarantee (even with her great resume) that she would be admitted to any medical school, she got offers at many top schools.

The last offer she received was the offer she had been dreaming of since 2007.

Anna will be attending Columbia University Vagelos College of Physicians and Surgeons!

Our family has always tried to focus less on her accomplishments and more on who Anna is in her core — a beautiful human who is kind and empathetic and knows how to get us all laughing when we need it — but today we want to focus on this incredible accomplishment!

Anna — We are so proud of who you are as a human and all the beauty add to the world. AND we are super proud of your determination and hard work and brilliant mind. YOU are going to do amazing things!

AMAZING THINGS are indeed HAPPENING!!!!!!

Love, Jess

Banana is 20!

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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!!!”.

Day 2

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I haven’t been this out-of-sorts in years — since 2007/2008, when we lived with a suitcase always loaded in our car in case of an unexpected trip to the hospital. The difference is that this time it’s not just our family that’s living with the anxiety of the unknown. It’s our entire country/planet.

Like an eerie calm before the storm, and we don’t know what the storm is going to bring. There are limited cases of COVID-19 in our area, but we assume that it’s just a matter of time. Will things get as bad as China or Italy? Who knows, but this has already effected school and work and parties and conferences and trips and Dan’s beloved March Madness.

Our family is social distancing because we’re scared that the virus can be lurking without symptoms for days and COVID-19 seems to be very contagious. There’s so much we don’t yet know and I don’t want to look back and wish we had done more to protect ourselves — to protect our community.

I’m scared about Jack’s health and about the health of all of our friends and family. I’m scared about hospital beds filling and a lack of respirators. I’m scared about small businesses suffering and the entire economy crumbling. I am also a little scared that Anna and I are going to kill each other.*

It’s not that our family is just sitting in front of the news all day. We’re all trying to distract ourselves. Anna is heading out to play some tennis with friends, I’m going for a long walk with JackO and Dan has a pile of yard work (we figure outside is safe). My folks even came today for lunch and we had a nice time, but there were no hugs. I can’t wait to go back to normal — I could really use a Mymom/Nonno hug right now. 

Love, Jess

* Kids are suffering terribly. Their lives have halted indefinitely. They’re missing school and work and parties and games. My heart goes out to my sweet girl and to all of her peers. IT’S HORRIBLE. Now, get home, wash your hands and be nice to your parents.

 

 

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

Roll the Footage!

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“Good morning”, Jack said with a big smile on his face as I walked into his room at 7:00 am. If you don’t know Jack, you might not have heard the words, but Jack speaks pretty loudly if you know … Continue reading →

Do us a favor

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Two people who share one disease

 

Today is Rare Disease Day. Please take the opportunity to celebrate by sending off letters to help pass Aidan’s Law. It’s time for every newborn in the country to be tested for ALD. This life-saving test shouldn’t be available depending on your zip code.

I look forward to a day where ALD is not the disease that Jack faced 12 years ago.

This will take you less than 2 minutes and will save lives. 

https://actionnetwork.org/letters/letter-to-congress-to-pass-aidans-law

Love, Jess

 

 

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!!!

please

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!!!!!!!!!

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

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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

 

lunch

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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!!!!