hApPy NeW yEaR!!!! Less than a week into 2021, and our family is starting out strong. Anna completed her junior year at Johns Hopkins a semester early, so she’s taking next semester off to study for the MCATS. Not really … Continue reading
As the music plays, I lay my head on his shoulder and feel his breath on my face. I wrap my arm around him so I can stroke his hair and wonder when he’ll lose the rest. He doesn’t seem to know that he’s aged, but the years have come and gone and he’s showing signs of a complicated life. He loves this song. I can tell by the way his body is rocking. He’s not been able to speak for many years, but I’m able to translate. Our connection is deeper than the scars his disease has left behind.
September is here and it’s been fascinating to see how everyone is getting back into the swing of school/fall — in-person small classes, home schooling, virtual learning, hybrids. Our family is still struggling to find our “back to school” routine. We have a messy, make-shift assortment of activities for JackO that we seem to be constantly changing (although he is happy and busy(ish)). Anna is back in Baltimore, taking classes from her apartment and has already been quarantined twice after being exposed to people who tested positive for COVID. Dan is continuing to work from our home office and seems to enjoy working unshowered in tee-shirts, but I do hear him throughout the day yelling at Fios. I win the award for the least productive family member. I do start each week with a master plan of writing and work-outs, but instead find myself doing everything but. At least my closets are clean.
These are crazy times and I keep reminding myself that things will get back to normal at some point. Maybe NORMAL isn’t the right word.
Thirteen years in, and our family still refers to our lives as before and after ALD. Two years following Jack’s transplant, we still had a suitcase in the trunk of the car just in case we found ourselves in the hospital. And, when everyone was struggling to find masks in March, all we had to do was go into Jack’s closet where we had our leftover pile from post-transplant isolation days. Having gone through that time in our lives, scarred us and left us always feeling like a shoe could drop at any moment. I resented this unease for years, but I guess it prepared us for this latest sh^tshow (I tried to find another word, but noting really worked as well).
Having learned from our ALD experience, I would imagine the entire world will live for quite awhile referring to life as before and after COVID. I’m guessing that it will be years before a cough is just a cough and the pile of masks at our front door disappears or we allow the Purell in the car to dry up. I know someday we will go back to living again, but when?
Maybe instead of focusing on getting back to normal we should focus on creating a new way of living. I know for some of the country, masks have become a political statement, but here in our area masks are mainstream. It means that I now venture out into the community without too much fear. I do find I am constantly looking around for maskless faces and listening for coughs, but mostly I am just going about my business. Being out — even just to run errands — feels liberating after months of the only non-family member we would see was the UPS deliver person.
Part of our back-to-school/fall plans is seeing more people.
We are trying to have friends over at least once a week and even went out to dinner last weekend — outside. I’m taking walks with friends again and Jack has his “other mothers” and his favorite OT (we love you Mr. Galo) coming to the house again. We are even heading to visit friends and to see my in-laws for a few days this weekend. Not that any of these choices are perfectly safe, but everyone we are seeing has been hunkered down and except for a small crew of people, everyone wears masks when not outside/distanced. We feel there is minimal risk, but do appreciate that some of our choices aren’t perfectly safe. Still, we are willing to take the limited risk. Stretching our comfort level is important for us right now so that we stay sane. We were starting to go a little nuts and within a few weeks, the cold will blow in and entertaining will become harder. The flu season might also complicate re-opening in general and we don’t want to look back in November and wish we had seen more people while we could.
So that is where we are right now. Trying to get in the rhythm of the new season and control what we can. Wear masks when out, wash hands constantly and see people in a safe(ish) way.
It’s Thursday and I still haven’t done much working out, but at least I can say that I did spend an hour writing. Now I can go back to procrastinating my paperwork and organizing another closet. Maybe I’ll also reach out to some friends and see if we can make some dinner plans out on the patio next week.
I just hope that, before too long, we can worry less and hug more. Until then — Happy FALLLLLLL!
Fingers Crossed,
Jess
I often chalk stuff up as a happy accident or a funny coincidence when Jack has a new trick. It’s not that I’m not proud of our boy or that I don’t pray with every ounce of my soul that he will make improvements and develop new skills. I’m just being careful. It’s my way of protecting myself from disappointment. For years, I would see small successes and think it was the beginning of a huge transformation. I was often left disappointed when a new trick vanished as quickly as it had arrived. So I’ve learned to focus on and celebrate what Jack is doing well and consistently.
Over the years there have been some things that have proved to be more than a trick. Jack relearned how to walk with purpose, eat solid food, hug. A few years ago, after being told repeatedly from the folks at his high school that Jack could read, I watched as Jack pointed correctly to a word on a sheet of paper. I paused and then pushed down the excitement, reminding myself that he had a one-in-four chance of choosing the right word — not crazy odds to have guessed the correct answer. Then he did something similar the next day. I tentatively held up word after word to test the skill. I was delighted — and shocked — to see that his teachers were right.
Lately we’ve witnessed another new skill that at first had us laughing.
Last week I got a flurry of text messages from friends asking me what was going on? “What are you saying?” “You okay?” “What’s THAT photo?”
When I scrolled through our correspondences, I saw odd comments and strange photos. I couldn’t figure out what was going on — had my phone been hacked? And, then I saw something that solved the mystery. A large nose.
It was Jack.
I went into the bathroom where Jack was sitting on the toilet with his iPad on his lap. Jack isn’t consistent with his toileting and we find that if we sit him for a bit every few hours we can often save a diaper (adult diapers are about $1/per — and we are cheap). We sit him with his iPad so that he can stay entertained AND stay seated (he has startled more than one guest over the years by walking out of the bathroom with his pants around his ankles).
After the random texts, I realized that Jack’s iPad is linked to my phone and that he was writing to people. How on earth? He must have just been lucky as he hit some buttons.
Then it happened again. And again. Apparently Jack likes texting and sharing photos of his nose and thighs (thank goodness it hasn’t been of anything else).
Then this morning I heard Anna’s voice coming from the bathroom. Having just delivered her to Baltimore, I wondered how it was possible until I walked into the bathroom to find Jack smiling at his sister’s face on FaceTime. Apparently he doesn’t just like to write notes.
So folks, I need to apologize in advance for any odd correspondence you might receive from me. It wasn’t a butt dial and I haven’t been day drinking. It’s just Jack saying hello.
AND, if you get any photos . . . I’m really, really, really sorry. PLEASE do not alert the authorities.
Love, Jess
The calm before the storm
We have an alarm that sounds every time the front door opens — a two-note chime. It’s usually followed by Finn (bad dog) barking loudly and racing to see who’s arrived and how long he can get away with jumping all over them. Last week, the constant chime exhausted poor Finn so that by Wednesday, all he could manage was to lift his head off the couch for a second to see who’d walked in the door before returning to his nap.
At the beginning of the week, I too would race to see who’d arrived so that I could give them some love and offer them a snack or something to drink. After a couple of days, I figured everyone knew that I loved them and how to walk to the kitchen.
Anna was home for Thanksgiving (THANKS GOODNESS) and our dear friends – the Mackays – joined us for the holiday week. An extra five people and a dog, adding some noise to our “far too quiet since Anna left for college” house.
We invited another ten people and two dogs for Thanksgiving Day. Nineteen humans, five dogs, two turkeys (one fried), six pies, two stuffings, bourbon sweet potatoes, mashed potatoes, green beans, salad, cranberry sauce, and more wine then our poor recycling cans could manage. Crazy, delicious, fun AND constant door chimes.
We said goodbye after Thanksgiving dinner to ten guests and two dogs, but added two more people on Friday (my best friend from college, Enger, and Katie Mackays roommate, Hanna). I feared we’d not have the energy to entertain them, but we managed. We even threw in a little party on Saturday night to round off the week!
The front door kept on chiming.
Yesterday we woke up and everyone did their part cleaning up the house, stripping beds and starting the laundry. Then, one by one everyone headed out – back to college, work, reality. I usually love the quiet after the storm of a holiday, but everything was so perfect last week, that I really didn’t want it to end.
I’ve been stressing lately about some things, but when it comes down to it, our lives are wonderful. Our friends, our family – they’re really all that matters. I can’t wait for the holidays to continue. We need some time with the Torrey side – and our door needs to go back to chiming!!
Love, Jess
PS Anna comes home in 17 days and the Mackays promised to come for New Years!!!!
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!!!
In case you missed Wednesday’s post – CLICK HERE.
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!
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
Over the weekend we attended another graduation party celebrating a dear friend of Anna. They’ve known each other since they were tiny, and she has spent so much time with our family, that I consider her to be another daughter. Dan loves her too and Jack would think of her as a sister, if he didn’t have such a massive crush on her.
She’s not alone. Jack has crushes on all of Anna’s girlfriends. And these girls are wonderful to our boy. When they come to our house, the first thing they do when they walk in our door is ask, “Where’s Jack?” and then seek him out to give him a smooch. Some days I find Jack in the middle of the sofa surrounded by beautiful teenage girls watching Gilmore Girls or lose track of him to discover that he’s made his way up to Anna’s room to listen to some girlie gossip.
Jack and some of the gals a few years ago.
Most of Anna’s circle of friends she’s known since diaper days. They knew Anna when she was a chubby little girl with a crooked smile. They knew our first house over on Jefferson Avenue and they knew Dan and I before we had gray hair. These kids also knew our family before ALD came screeching into our lives. They knew Jack when he was just a year ahead of them in school, loved to ride his bike and was one of the MCs in the school talent show (the only video we have where we can hear him speaking . . . ).
I realized while watching the girls at the party that I’m not just saying goodbye to Anna as she heads out to college — I’m saying goodbye to her buddies too. And, so is Jack.
I know Anna will find a wonderful new cluster of friends at college. She has good taste in friends and seems to always be surrounded by a funny, smart, kind assortment of people. I’m sure she will share a lot about her family with these new friends. About her loud Dad who graduated from Hopkins and loves history, music, lacrosse and the Yankees. She will undoubtedly share stories of her mother who insists on family dinners, needs constant help with wardrobe advice and spelling, and drinks a little more white wine than she should. And, I’m sure Anna’s new friends will hear a ton about her brother – the person who she adores more than anyone on the planet. They will hear what happened when Anna was only six-years-old and how it shaped so much of who she is now and what she longs to do with her life. Her new friends will see pictures of all of us and maybe even meet us over the next few years, but they will never know the whole story. They will never really know Jack the way that Anna’s childhood friends do.
I know that some of the relationships Anna has with her childhood crew will ebb and flow for a while. They are scattering all over the US for the next four years. It will be hard, but I really hope that they all make an effort to meet up again whenever they can. I’m lucky to still be close with a few of my childhood friends and it’s amazing how they know me on a level that newer friends just can’t reach. There’s something magical about childhood friends.
The graduation party was wonderful — good food, some white wine for me, and a lot of familiar faces. As I sat inside to escape the heat, I watched Jack through a large picture window. He was sitting next to Anna at a table full of some of his favorite girls. He had a grin from ear to ear. I know there will be more parties and tables full of these girls, but they will be a further apart now that many of the kids are heading off. I want to make sure that I savor them while I can and make sure JackO gets to enjoy as much girl time as possible before the summer comes to a close.
Love, Jess
Yesterday I was at a doctor’s office waiting to get my annual mammogram. If you’ve ever had a mammogram, you know that it isn’t any fun. As I waited to be called, I was trying to distract myself with cheesy magazines and social media before starting to send text messages, DanO – how’s your day going? Kim – Wanna head to the beach later this week? Anna – When do you get home from school today?
Before I hit send on the last one, it hit me. Anna wasn’t getting home from school, because she didn’t have school. She’s done. Finito. I’d known it was coming for 18 years, celebrated with her at countless parties over the last two weeks, and sat through a two hour ceremony filled with caps and gowns, playing Pomp and Circumstance BUT it didn’t really sink in until I was sitting in a sterile waiting room with a bunch of strangers, all of us wearing nothing but red and pink striped robes.
Welcome to my world. I was actually relieved when my name was called to go have my boobs smashed flat as pancakes.
Enough of me, my boobs, and my crazy emotions – here are some photos of Anna on her big day!
Love, Jess
My mammogram — unlike me — was normal.
Eleven years ago we were told that Jack had Adrenoleukodystropy and that the only way to stop the progression of this hideous disease was a stem cell transplant (bone marrow transplant). Anna, who was 6-years-old at the time, would have been the best option, but she was not a match. Our doctors were forced to look on the bone marrow registry for a potential donor.
Imagine being told that the only chance of saving your child’s life is if a stranger is willing to make a donation.
At the time I didn’t know much about stem cell donation. Online research did little to calm my nerves. At any given time, over 7,500 Americans are actively searching the national registry for an unrelated donor and only 2 % of our population is on the registry. And, what are the chances of finding a donor? Caucasian patients – 75%, hispanic patients 45% , asian patients – 40%, african-american patients – 25%, and multi-racial patients are faced with the worst odds. Over 3,000 people die each year because they can’t find a match.
Jack was lucky. Although there were no matches on the bone marrow registry, a stranger had donated their daughter’s cord blood (another option for a stem cell transplant) and Jack received those precious cells which stopped his disease and saved his life.
We’ve helped host many drives in the last eleven years and there have been at least three lives saved by spreading the word and helping people register. We are doing it again this weekend thanks to our friend, Elizabeth Sarkisian, and our local YMCA.
If you would like to learn more about bone marrow donation or would like to add yourself to the registry (and are between the ages of 18-55, not active military, in good general health, and over 105 pounds) please join us on Saturday 12pm-3pm at the YMCA in Maplewood.
Love, Jess
Please keep in mind we are looking for people to register that are committed to donating if called. Otherwise there is false hope and wasted time for patients. Thank you!!!!!!
smiles and duct tape 