Two-Armed Sister Clutch

img_0111.jpg

You’ve heard from me for ten years. Now, it’s Anna’s turn. When it came time for her to write her college essay I was excited to help, but like all things academic, she insisted on doing it on her own.

Two-Armed Sister Clutch

        I have to hold his torso carefully so that he can’t bite me. For years, as my brother has gotten stronger, my technique has evolved from a simple shoulder hold into the now perfect “Two-Armed Sister Clutch.” My dad takes care of his head to keep it propped up—after all, the neck is the most important part. After ten minutes of very cautiously carving away at his beard, the world’s brightest smile emerges from his newly exposed face. I’ve just shaved my nineteen-year-old brother for the third time this week; my favorite chore with my favorite person.
        A sharp automatic razor and Jack—that’s my brother—make for a very interesting endeavor. But despite the chaos of the project, it always gets me thinking clearly. I think about the disease that forced its way into Jack’s brain ten years ago and made him this dependent on me, and about the fact it has been TEN years. I think about who he was before his disease—my typical big brother, goofy and in love with life. I think about who he is now—my silent and disabled big brother, goofy and in love with life. And finally, I think about who I am, and who his disease has made ME.
        Shaving my brother is a difficult task. I start off by trimming the top layer of the every-so-gnarly hairs. The first layer of Jack’s story is one very long word (the first word with more than six letters that I ever learned): Adrenoleukodystrophy (ALD). That is the neurodegenerative disease that turned my family from one straight out of a J. Crew catalog to the very quirky, “special” family that we are today. I was six, Jack eight, when he was diagnosed with ALD and his brain function slowly unraveled. Suddenly, my brother’s voice wasn’t around to fill up my house with jokes and curiosity. Suddenly, I had to be the athlete of the family…and the social butterfly… and the nerd. And now, a decade later, I am a hop skip and a jump away from being a professional groomer, too.
        After I trim Jack’s beard, its time to crank the razor up and dig down through all the brush, rounding the jawline and inching in to each crevice. Shedding that hair makes Jack look so presentable,… so professional… so normal. I get flashes of Jack Torrey as an adult (Doctor? Lawyer? Artist?), walking the streets of a big city, wife and kids by his side, living a normal life. I see myself meeting him for a bagel and talking about our careers, our friends, or our families. Sometimes I just picture us talking. It has been ten years since Jack last spoke.
        Luckily, my feeling sorry for myself is quickly interrupted by the most amazing laugh to ever exist. The disease that stole Jack’s words and independence did not manage to steal his laughter. I look at him and see what that sweat-inducing work out really uncovered: a giant, radiating smile. I let go of him and he wanders around the kitchen, slowly making his way back to me, tongue out and eyebrows raised, to give the best hug any sister has ever gotten from their big brother. That is Jack’s way of saying thank you.
        I’ll never have a typical sibling to show me the ropes of life and gossip with when I’m older, but Ill always have Jack. I’ll have his smile to tell me to always work as hard as I can. I’ll always have his laugh to encourage me to give back to other people and other families. I’ll always have his hugs after a lacrosse game or job interview gone wrong. And, I’ll always have an escape when I want to think about these things all over again—after all, that boy could always use a shave.

Anna Cappello Torrey
Johns Hopkins University Class of 2022 (we just got the news!!)

 

Love, Proud Mom

 

 

 

THIS is ALD #2 — Sean

IMG_5265

The odds of winning the Powerball lottery are one in 175 million. The odds of being born with the Adrenoleukodystrophy gene are one in 17 thousand.

And yet, everyone has heard of the Powerball, while most people give me a funny look when I share Jack’s diagnosis.

My go-to response is, “It’s that disease from the movie Lorenzio’s Oil.”

When that doesn’t work, I say something like, “It’s a genetic disease that effects the adrenal gland and destroys the myelin in the brain. It’s worse when it starts advancing as a child. That’s what happened to Jack. Yes – he was totally fine until he was eight-years-old and then . . . well, he kinda fell apart. He did have a stem cell transplant and it stopped the disease from progressing, but he lost a lot during that time. He can’t speak anymore and needs help with just about everything – eating, bathing, getting dressed, even walking down the street. He can eat. He does need to be fed and he has a tube in his belly for hydration. Oh, and he also needs a whole lot of medicine to keep him going. Steroids for his Addison’s Disease – did I mention that his adrenal glad doesn’t work? THAT is pretty common with people with ALD. Not everyone, but most. Jack also needs medicine for his seizures. That’s another thing a lot of the boys deal with. I’m not sure about the men with AMN. AMN is what older men with the ALD mutation get — if they get anything. Some men seem fine. And, most women are fine, at least until they’re older. Then they seem to have trouble walking and with their bladder and bowels. Yea, I know that’s scary. I sure don’t want to deal with any of that. Good news is that my mom’s doing well and she has the mutation. Oh, but that doesn’t really mean anything. Not with ALD. ALD doesn’t seem to have a memory when it comes down a family line. Anyway, Jack has Adrenoleukodystrophy.”

 
As my description demonstrates, ALD doesn’t always look the same. As readers of Smiles and Duct Tape, you know Jack and you know Jack’s ALD, but, there are many phenotypes – Childhood Cerebral, Adolescent Cerebral, Adrenomyeloneuropathy (AMN), Adult Cerebral, Addison Disease only, Carrier’s Syndrome and the lucky few who are completely asymptomatic. There are also several treatments (no cures): dietary therapies, transplant, gene therapy, treatment for adrenal insufficiency. I could show you charts and explain all the science surrounding the disease, but instead I’m going to introduce you to ALD through it’s people. It will be a chance to get to know ALD — our not-so-rare disease.

 
A couple of times a month I’m going to share a story about someone (or a whole family) with our disease. Don’t worry – you’re still stuck with me posting stories about JackO and our not-so-special family. THIS is ALD will be a little extra treat.

 
THIS is ALD #2
Sean Suppan
(Jack was #1)

 
One of my ALD stranger-friends (now friend) is Ellen Suppan. She and I met years ago when her son, Sean, was starting the transplant process. I remember getting off the phone with her almost breathless. Even though our family was two years ahead of them in the process, it was hard for me to imagine what they were going through. Their ALD journey seemed so much more complicated.

 
She shared their story with University of Minnesota Pediatric Blood and Marrow Transplantation Center in 2009. These are her words as Sean was going through transplant:

 
“In 2003, after a lot of doctor visits, we were told that my other son David
had ALD. He was 7. I had no family history, but it has to start somewhere.
Back then, there was nothing we could do for him. Within 3 months, he was
in a bedridden state, and then went to a vegetative state, and he was like that
for 4 years. David passed away in October 2006. We miss him but were
relieved he was no longer hurting.

 
Shortly after David’s diagnosis, I found out that we were expecting and later
learned I was carrying a boy. And yes, he carried the gene, but had a 50/50
chance of not developing symptoms. With Sean, we were very proactive. We
have known since he was born that he has ALD. When Sean was only 3, he
came down with a high fever and we did an MRI, and everything was clear.
We did another MRI 4 months later and there was a spot there. We were
shocked. David was 5 when this happened.

 
My main concern was to get Sean where he needed to be. There are good
hospitals. They have done a couple of transplants, but not as many as the
University of Minnesota. The most transplants for ALD have been done here,
pioneered here and they are still working on it.

 
The downside of going through the transplant is that the chemo may bring
on more advancement. It’s a no-win situation. If I don’t do anything, I have
seen the course it takes. But, we at least know that he will not get to the stage
that my other son had to endure for four years. We are thinking positive.

 
I am thankful and grateful that Dr. Orchard came up with this treatment. It is bittersweet for me. Back in 2003, they did not do transplants for symptomatic
kids like David. The progression with David was very cruel for a parent to
watch. We are doing for Sean what we could not do for David.

 
Don’t expect anything to be normal. It’s a new normal. It’s a new way of
doing things. Be ready. I always keep my gas tank half full, because I don’t
know when I’ll need to go to the hospital. Live in the moment. All the other
things will fit into place.”

 
What isn’t mentioned in this piece is that while the Suppan family was losing their son, David, in the fall of 2006, their daughter Ashling was diagnosed with AML Leukemia (she has just celebrated 11 years in remission). They were still mourning David as they went through treatment with Ashling and were diligently monitoring Sean. Then, as Ashling was enjoying life after her treatment, it was time for Sean’s transplant. Ellen shared with me that she missed her daughter’s high school graduation because she was in Minnesota with Sean recovering from his transplant. ALD often steals a lot from a family.

 
Eight years after our first correspondence, I finally had the pleasure of meeting Ellen, her husband David and Sean in person. I tried not to, but I couldn’t help but watch Sean closely and compare him to Jack. Sean has the same engaging bright smile and is eager to be part of the conversation. He is able to speak and to the untrained eye appears very typical. I did see a few hints of ALD, but needed to ask Ellen for specifics.

 
Ellen shared that following transplant they were most concerned about Sean’s vision, but gradually it seemed to improve. He does have difficulty processing new surroundings and has issues with his depth perception. Other challenges include short term memory problems and some behaviors like making odd noises, chewing on shirt collars (THAT is so Jack) and shrugging his head almost violently. He is able to feed himself, but needs help with other activities of daily living. Sean is currently in the seventh grade and moves between a special needs classroom and a few mainstream classes.

Overall Sean is doing great. The Suppan family is grateful that Sean was able to be monitored closely and received his transplant early. Ellen shared a note she received from his teacher. I think it says it all.

 

Hi Mrs. Suppan,
I wanted to share with you that Sean is doing terrific. I am so proud of him. Today he came up in front of the class and shared with him things he is thankful for. What an accomplishment for him – we appreciate him everyday and are thankful to know him. Happy Thanksgiving to you and your family.

 

“ . . . we appriciate him every day and are thankful to know him.” THAT is how I feel about Ellen. I hate ALD and the chaos it’s created in our families, but I am honored and grateful to have Ellen as a friend AND to have met Sean. Stay strong little man and I look forward to meeting you again soon – next time with JackO!!

 

Love, Jess

18556223_10158692047265635_3325813835821849542_n

THIS is ALD

music and memories

IMG_4555

 

Dan and I have never allowed our kids to choose the music. Not in the house and definitely not in the car. We don’t have the patience for what “kids these days” listen to and we love our own music too much. When Dan and I first started dating, there were arguments over James Taylor vs Jimi Hendrix (I love him, but not for lounging out) and Simon and Garfunkel vs Rush (Dan will NEVER win that argument), but we settled into a groove quickly and found that there is plenty of music we both love. Jack and Anna have grown up with the Dead and Son Volt and Steely Dan and REM and Elvis Costello and Joe Jackson and Tom Petty and Bob Dylan and and and and. Even now that the kids are older (and Jack is Jack), if you peek in our windows after dinner some nights, you might find us all dancing in the kitchen.

Music is part of our duct tape.

They say that smell is the sense that is most closely linked to memory, but there is something primal that happens when you hear a song that you love. Tangled Up in Blue and Forever Young make me stop what I’m doing and sing out loud (sorry) and I’ve found myself sitting in grocery store parking lots more than once with tears running down my face because of a song on the radio – Beautiful Boy gets me every time. Then there are the songs that remind you of a time in your life – American Pie while I played with my dolls in the basement on Mountain Avenue next to my mother on her sawing machine, Free Bird at my first middle school dance, Me and Bobby McGee blaring from the jukebox at Long John’s Bar during my college years, Hey Ya as life saving stem cells went into my son’s veins in 2007.

As a teenager, my friends and I would make each other mixed tapes with our favorite music. We would send them to each other when we were in college – better than brownies. And, a mixed tape from a guy was way better than flowers or jewelry. It said so much about who they were and what they thought of you. I still have a pile of tapes in my box of memories. I’ll never part with them.

Dan’s love of music is fierce. His album collection is his most prized possession. A few years ago I made four large wall hangings – each with 15 of his favorite album covers. My plan was to hang them in his office, but they quickly found their way downstairs. We like to be surrounded by music.

Jack and Anna are a little older now and have their opinions. Jack found One Direction on his own, and if you play him just a second of one of their songs, he will shoot out of his seat and jump up and down. And, Anna’s room is always loud with music and some of it is lame, but I’m happy to report that much of it is familiar.

Anna got her driver’s license last month and we gave her Dan’s old car. She’s made it her own with new bumpers stickers and snacks in the glovebox. She also changed the radio stations. I can’t say that I approve of all of them, but I noticed last week that Tom Petty Radio was saved on channel one. All I could think was that we’d had done a pretty good job raising her.

This week has been horrific. My heart goes out to all the families/friends of those who lived through the horror and those who died in Las Vegas Sunday night (when is this going to end folks?). Mexico, Puerto Rico, Las Vegas — Watching the news has become so difficult the last few days, that I find myself avoiding television and leaning on music for entertainment. And, music isn’t safe either.

We’ve lost a lot of legends the last year. Just to name a few: Prince, George Michael, Glenn Frey, David Bowie, Gregg Allman, and now – Tom Petty. Anna was the first person I called when I heard the news that he had died. I heard Petty coming from her room last night as I went to bed and I played a lot of his music yesterday. Many of his songs hold some wonderful memories.

That high school reunion I talked about a couple of weeks ago is this weekend. I forgot to lose the five pounds and don’t really have the perfect outfit, but I am looking forward to it. I think seeing some old friends, laughing about old times and listening to good music sounds pretty darn awesome.

Love, Jess

“It’s sort of hope amongst the ruins, I think. To me we’re all in the great wide open. I think life is pretty wild; I really want to like the world, but at the same time I have to write about what I see.” (Tom Petty 1991)

 

 

I refuse to steal the HAPPY out of HAPPY BIRTHDAY

images-69

I don’t remember all of my birthdays, but 19 was especially memorable. My friend, Dave, took me out for dinner. It was our favorite Chinese restaurant and I’m sure there was a Scorpion Bowl or Mai Tais or something else really sweet and really strong. We stuffed ourselves with beef and broccoli, and then Dave insisted on ordering dessert. Who does that at a Chinese restaurant? Fried ice cream or something odd and I could hardly fit in a bite. Besides, I was anxious to get back to the apartment. It was my birthday and I wanted to grab our friends and go out.

I felt like Dave was going in slow motion as we made our way back to the Woodrow (think rundown/gritty/college three-story apartment building in Baltimore). I was so focused on how lame he was being that I didn’t considered WHY he was moving so slowly until we walked through the door.

“Surprise!!!!”

I’ve never been so shocked. Somehow, without me having even a clue, my mother had contacted my best friend, Enger, and sent her some cash to plan something nice for my birthday (remember this was years before cell phones). I’m guessing that my mother had envisioned sparkling wine and canapés, but instead there were pizza boxes and a keg of beer. It was one of the funnest nights of my life. Rowdy, loud, and silly. 19.

1917457_183486030142_7364570_n-2

JackO is turning 19 on Saturday.

Each milestone that we reach comes with a little reminder of what coulda/shoulda been and I hate that. I hate that there is any hesitation on focusing on the happy part of happy birthday. I hate that I spend even a second wondering if I would have sent money to Jack’s college friends to buy some booze and party favors (probably not – 2017 is not 1988 – I’d probably end up in jail for contributing to the delinquency of minors). I hate that I wonder where Jack would have gone off to college. I hate that I use any ounce of energy cursing ALD — AGAIN.

But I do. I can’t help it.

When I started writing this, it was for me to post on Jack’s birthday, but I’m not going to wait until Saturday. It’s not fair to Jack. It’s not fair to his birthday. His birthday is for celebrating. He deserves it. He is the happiest person I know and NOONE likes a celebration more than our boy;)

IMG_3420

So — enough of the coulda/shoulda. We are going to celebrate all weekend. Heading to the beach with some of our closest friends. We’re going to eat pizza and cake and maybe even find ourselves a Mai Tai!!!!! Then, on Monday we will celebrate again with his pals at school. And, when we head to Block Island later in the month — we will have more cake and do more singing.

I will send some photos of all the fun on his actual birthday. In the meantime – send Jack a note. On Facebook or right here. Scroll down. See “Leave a reply”? Go for it!

Love, JackO’s mom

PS Once I have written down my feelings, I feel much better. No need for weepy phone calls or awkward hugs if you see me. I promise I’m now focusing on WackO JackO and his big, fun day/week/month.

PPS I wrote this last night and, as I was falling asleep, it occurred to me that I might have actually been remembering my 20th birthday. Enger? Dave? Betsey? Deb? Anyone?

 

 

Happy Father’s Day DanO!

FullSizeRender-99

I would like to record what happens in Jack’s bathroom on Sunday mornings. It’s a routine that takes at least 40 minutes and involves laughing, singing and plenty of four-letter-words. Dan does it so that I can have a break from the morning routine, but I usually can’t sleep through the commotion. Instead, I lay in bed and count my blessings.

Dan has always been a hands-on father with both the kids. He once spent an entire night waiting in line to insure Jack got into our favorite pre-school, and coached Anna’s lacrosse team for so long that I sometimes need to apologize to her varsity coaches now for Dan’s sideline behavior. Even with all his business travel, Dan tries to make every home lacrosse game to cheer on Number 22 (Bananz/Anna) and schedules business around IEP meetings and important school events for JackO.

I sometimes wonder what our family would have looked like without ALD taking center stage. Would we have hung together so tightly or would we have gotten distracted by trivial nonsense and focused less on family? I can’t say for sure, but I can say that, no matter the reason, I do appreciate how close our little foursome is.

I get a lot of credit for holding up our house of cards, but the truth is that while I do my share, it’s Dan that really holds it all together. He knows what each of us needs. Heated discussions with Anna about political topics, snuggling on the couch with Jack watching his favorite Impractical Jokers. And, he is the calm voice of reason, balancing out my crazy. When I get stuck under my pile of Social Security/Medicaid/medical bills bullshit, he reminds me of what is important. AND that we are a family that survives, “Just take things day by day.”

This morning we woke up in Connecticut where we were visiting family. Despite a long night of festivities and it being Father’s Day, Dan still managed to continue his Sunday morning ritual – bathing, changing, toiling his eighteen year old son. It takes parenting to a whole new level. There is a fair amount of cursing that goes on in the bathroom on Sunday mornings, but there is also a song for everything. Not sure how you manage to keep coming up with new ones, but keep singing DanO!

Happy Father’s Day!

Love, Jess

I’d also like to mention two other remarkable fathers – Nonno and PopPop. We love you both!!!