One more (wo)man down.

When Jack was in the hospital for his transplant 11+ years ago, there wasn’t much consistency to our days. We would wake up every morning with no idea what the day would bring. Waiting for blood counts, blood transfusions, good news and bad news would trade places several times a day. There was only one thing we could count on — at some point during the day, we would see Mymom.

She would ride her fold-up bike to Washington Heights from her Upper East Side apartment, climb off the bike, flash her visitor’s badge at the front desk of the hospital and head for the elevators. By the time she would reach room 505 there would be no hint that she had just ridden her bike up the gritty city streets in the summer heat.         

Mymom is a woman who you will never see with a hair out of place. Whether she’s sporting her Upper East Side style or Santa Fe hippie chick, she pulls it off. She’s a beauty. Always has been, but the word elegant is a better description of who she is. I look a little like her, but I will never hold myself the way she does. She also happens to be brilliant – a Phd holding, Red Cross working, dynamo with boundless energy. My mother doesn’t ever do anything half-way – even those hospital visits 11+ years ago.

I’m not sure I ever really thanked Mymom for her daily visits while Jack was in the hospital, but this week I got a chance to start to repay the favor. Mymom got a shoulder replacement week. You read that right — it’s the month of shoulders in our family — first Dan, then our Aunt Kathy and now Mymom.

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After a couple of years of fighting her shoulder, Mymom finally gave in and scheduled the surgery. Her biggest worries were that she would need to cancel her Christmas Eve party and what clothes she’d be able to wear. My biggest worries were about Mymom slowing down enough to let her body heal and if I could talk her into binge watching Bravo so we could discuss Dirty John (it’s so gooooooood). I also worried about how I could help as much as she helped us all those years ago.

There really wasn’t much I could do, but be there this week. I went back and forth, providing a little distraction and I wasn’t the only person eager to hang with Mymom. Of corse Nonno has been at her side every step of the way and both of my brothers, my beautiful niece and our cousin spent time in her room sharing gossip and telling stories. It ended up being an unexpected family reunion.

As I left the hospital yesterday, Mymom commented that it’s been such fun having the family together. I looked at her in her hospital bed wearing nothing but a hospital gown and a hint of lipstick left from her attempt to “clean up before her visitors arrived”. I thought, wow — the power of family.

I’m hoping that the next time we all get together Mymom is able to enjoy it while wearing her ultra chic clothes and not a sling.

Love, Jess

Mymom is heading home today and Anna and I are going for a visit tomorrow and meeting up with Kate and Baby Carlos – THAT will make everyone feel great!

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

(another) man down

Generally, I’m a really good caregiver. I’m not patting myself on the back – I’m the first to admit that I’m not great at a whole lot of things, but if you ever need someone to hang with you while you’re waiting in doctor’s offices or recovering from surgery or binge watching mindless television with your feet up, I’m your gal. 

I don’t mind dressing changes, I’m good with organizing medication and I know my way around the kitchen. I’m also not scared of those awkward, messy situations that can come up. I’ve had piles of experience with such things.

 That said, I’m a little tired right now and likely not winning any awards for Caregiver of the Year.

Dan had shoulder surgery last week. Poor guy has tried everything from physical therapy to chiropractors to some guy who I’ve only heard called The Witch Doctor who filled Dan’s arm full of electrical stimulation. Nothing worked, so Dan finally gave in and scheduled surgery.

Nothing huge, but I was a little nervous about what to expect. It was Dan’s first surgery – ever (impressive for a person 51 years old) and I wasn’t sure how he’d be as a patient and how PATIENT I would be with a new patient to care for. Dan, always wanting to limit my stress, often down-plays things. Leading up to the surgery, he’d refer to the recovery as “a day or two”. Even as we drove to the appointment last Thursday, he was sharing that he would be starting PT within a few days was looking forward to a party we were invited to on Saturday night.

I suspected that Dan was being a little overly optimistic, and when I walked into the recovery room my suspicions were confirmed. My strong, handsome husband looked like he’d been in a fight. When I set him up on the couch when we got home I started to really appreciate that he wouldn’t be able to do much for a while.

You never really appreciate how much someone does, until they can’t.

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Caring for Jack requires a lot, but after 11+ years, days go by without much thought about the details. I’m the primary caregiver during the week, but nights and weekends Dan and I split the responsibilities. Without any planning, we take turns brushing and bathing and feeding our boy. Not that there is never confusion over whether or not Jack got his afternoon meds and you might hear us bribing each other to take a turn feeding Jack when we’re out at a restaurant – but mostly things run pretty smoothly.

I’m used to taking 100 percent of the responsibilities when Dan is traveling, but this has been the first time that Dan is here and not able to help. He’s down an arm and caring for Jack requires two. So does cooking, walking the dogs, doing the dishes and the laundry, and driving. He’s making a great recovery, but I don’t think Jack duty (or Jack doody) is in Dan’s future any time soon. Jack is strong and I’m not sure he can appreciate how careful he needs to be with his Dad. For now, I’m in charge of all meals, bedtimes, showers, medications, errands, and poop.

It’s no ones fault and it isn’t the end of the world, but last night as I was falling asleep, I wondered if there was any way that I could plan a little surgery for myself sometime soon.

Love, Jess

Dan skipped that party on Saturday night. I went with friends and did my best to be festive enough to represented us both. Boy did I miss having Dan take the morning shift yesterday;)

I say I am doing things solo, but I do have some help. Thank you Lilly and Maria for everything you do for us!!!!!!