Tag Archives: ALD

. . . dear, dear, dear, dear, Santa Fe

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I act as if we’re moving to the moon every time we’re going away on vacation. I feel the need to travel with enough medication to get us through a year, and find myself cleaning the house frantically before we leave town. Our dear friend, Maria, is holding down the fort while we’re gone, and I can’t imagine she would care of the basement closets were organized — but there I was this morning, tackling the unnecessary job. And, I kept adding to the pile of “things that need to be packed”, having no idea how we are going to manage getting everything into those suitcases (and is 5 pairs of shoes really necessary?). WHY is vacation so stressful?!?!

No one wants mom going into the trip anxious and cranky. Deep breath. It’s going to be a great vacation.

Santa Fe, New Mexico is where we are headed tomorrow. A long overdo Cappello family reunion to celebrate my parent’s 50th anniversary. 50 YEARS! We’re looking forward to being with family and finally seeing my parent’s new home-away-from-home. Having never been to that part of the country, we’re excited to explore and see as much as we can. For that reason, we decided to fly to Denver and drive to Taos on the first day of our adventure. It seemed like such a great idea months ago when we planned the trip, but now my heart is racing as I imagine a day where we added a six hour drive to the journey. I need to breathe and remember that getting there (can be) half the fun — ONLY IF I LET IT.

Deep breath.

In my defense, most of the packing and organizing is left to me, and traveling with our boy is rather complicated. Add planes and long car rides and there is a bit to think about. It’s not just our constant bathroom concerns (a theme for our family), it’s that we need to make sure that we have enough of everything necessary to get through the trip. Medicine, diapers, chucks, wipes, clothes, sunscreen, more clothes. We also can’t forget to request a wheelchair for the airport. Walking with our hop/skip/jumper (AKA JackO) through terminals is tedious AND his curiosity can be hazardous. Imagine a security line, tightly filled with people. Jack can’t help but pat unassuming heads and lick attractive arms. A wheelchair prevents some of these embarrassing exchanges and allows people to understand that we have a “special” situation. There is the added benefit that it also often expedites the security lines, but it’s tacky to discuss the benefits of putting your teenage son in a wheelchair. Shhhhhh.

So, I’ve been packing, cleaning, confirming flights/hotels/cars/wheelchairs, and primping (Jack and I both needed manicures). We’re almost ready for the trip. I’m not sure why my heart is still racing. I need to relax and focus on the wonderful adventure that lies ahead. It’s time to breathe and think about Santa Fe.

“Santa Fe, dear, dear, dear, dear, Santa Fe.” Bob Dylan

Love, Jess

It’s been a while since I’ve written. Sorry. I do have a good excuse . . . really good . . . but I will save that news for another time.

 

A Birthday for Bananz!

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There are no parenting books that recommend being friends with your teenager. We are always told that our responsibility as parents is to parent.

My problem is that I do so much parenting with Jack. I need to be ON all the time. Missing the medication or hydration could be disastrous, and when he needs a diaper change, he needs a diaper change. I can’t slack – not even for a minute (this is not completely true. I do slack, thanks to a wonderful team of people, but I need to arrange so that I can slack).

When it comes to parenting Anna, she tends to direct. She tells me when to call the SAT/ACT tutor and when I need to drive her to school. She announces when it’s time for a new curfew (THAT we did need to negotiate), but also knows when she needs to call it a night so that she has time to work on her summer assignments. And, although we spend many dinner conversations discussing Anna’s schoolwork, we are rarely asked to help or edit. It’s not just because she has surpassed our expertise in many subjects, it’s because she has always had to be independent.

This is not to say that we do not spend quality time together. Anna and I spend hours watching and discussing groundbreaking television (i.e. The Challenge on MTV) and pouring through high school gossip. Anna and Dan also have a close relationship. He isn’t as fond of the rumor talk as I am, but he and Anna can discuss history or lacrosse stats all day long. And, watching Anna snuggle with her brother is one of the most magical things on the planet.

Anna has turned out to be a remarkable human and I love being her mother/friend. I just look at her, and I am in awe. Brilliant, beautiful, patient, compassionate, kind and happy. Everything I ever hoped my daughter would be.

Dan and I get all sorts of credit for raising this unbelievable child, when the truth is that Anna really deserves most of the credit.

Happy Birthday Bananz!! Sweet 16!!!

Love, Mom

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Dan, the man

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Happy Father Day!

Here’s a truth. I fell off the “Perfect Parent Pedestal” years ago. Jack and Anna discovered early in their lives that I am human. They adore me and respect me (most of the time), but they are fully aware that I am full of faults.

Dan still lives high up on a pedestal. He walks into a room, and both of his children light up. Anna’s in awe of her father’s knack for languages and amazed each night watching him play Jeopardy. There is very little he doesn’t know. And Jack – to Jack, Dan is a superhero. He is the person who takes him on adventures and doesn’t complain when there is a necessary bathroom stop.

Sometimes I’m a little jealous of Dan, but here’s another truth – he has earned his role as a superhero. Most men would cower at the challenges our family has faced. Most men would focus all of their attention on their careers or a bottle. Not Dan. Although he’s had a successful career, his priority has always been his family and his proudest accomplishment has been his children.

Even now, as life has things scattered a bit, Dan comes home and doesn’t miss a beat. Before he has a chance to take off his jacket, we all fight over “first hug” as Dan dives right into “How’d finals go?”, “Any news about Jack’s new class?”, “How many more days until Block Island?”.

Next time you see Dan, ask him about his kids. Listen to him talk about his beautiful Bananz (aka Anna), who rocks it as much on the field as in the classroom. Listen to him talk about Booger Brown (aka Jack) and his bravery and strength. Better yet, come to Clinton Avenue and listen to Dan talk to Anna about history and then listen to him sing loudly as he bathes his teenage son. You will walk away (in tears) knowing that Dan is truly an amazing father and we are one LUCKY family.

Love you Dan. And, special love being sent to Nonno and PopPop – our two other favorite Dads!!

Love, Jess

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FYI 10 more days until Block Island.

CHANGE is a four-letter word

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CHANGE has six letters, but for me it’s a four-letter word.

Lately, adapting to changes around here has proved difficult. Dan has a new job which has him traveling a ton. I’m missing my partner. For 21 years (really 23, but don’t tell my parents) we’ve been together most nights. Now there are a lot of nights where it just me, the kids and the pooches. The house has been lonely. And, it’s not just Dan that’s often out. Anna has a schedule that’s pulling her in a lot of directions that all seem to be far from Clinton Ave. Don’t get me wrong, Jack and the dogs are great company, but the normal Torrey liveliness has been lacking around here.

It doesn’t help that I’m working on “Jack’s 18th Birthday Project”. Unfortunately, this birthday project doesn’t involve planning cakes or presents. Instead, I’m dealing with lawyers and doctors and paperwork. When you’re profoundly disabled, 18 doesn’t arrive with it’s usual benchmarks. There is no graduating from high school (that comes at 21) or registering to vote. Instead,  Dan and I are registering to gain custody of our adult son. We need to hire two lawyers (one for us, one for Jack) to prove to the State that Jack is disabled. Apparently a simple introduction to our handsome, non-verbal, g-tube attached, diaper-wearing boy is not enough proof.

Once the State determines that Jack is in fact too disabled to care for himself, we move along to other 18th birthday highlights. First, we file for Social Security. The idea of collecting money on Jack’s behalf initially felt odd, until we were reminded that Jack will never work, never earn an income, never pay for his own expenses. We live in a country who helps the less fortunate, and Jack is part of that list. After Social Security, we file for Medicaid. Yet another reminder of Jack’s lack of independence.

I was sharing this list with my writer friend (who often acts as my therapist), Jenny, and she (once again) put into words what I was feeling, “I wonder if there is still hope in your heart, a little flicker of hope that someday Jack’s condition might change? Going to court puts a label on Jack’s future and makes it all permanent.”

Yes.

It’s heartbreaking that we find ourselves at this juncture. Eight years ago, I never imagined being here. I still have hope (and it’s more than just a flicker), but it is super hard to keep hope alive when you are looking at this pile of “proof” that says otherwise. So, I’m upset and then I’m over thinking everything in our quiet house. A perfect storm to bring me to a sour mood.

Last night, Anna and I had a conversation that gave me the kick in the ass that I needed. She was being a brat (the way only a teenager can be), but then she said some words that hit my core. I won’t go into the details, but basically she reminded me that our family is stronger than our circumstances and it was time for me to stand up and deal. Anna has always been smarter than I am and she’s right. Life isn’t always easy, but our days are moving along whether we embrace them or curse them. It’s time for this Torrey to start embracing them again.

Dan’s new job is wonderful and we will find a new groove. Anna’s changes are moving her along towards her goals: to rule the world, cure ALD and not miss a single party along the way. And, our dear Jack is getting along just fine. All this ridiculous “18th Birthday Project” goes right by him. He is just waiting for August so that he can get some presents and a huge slice of cake.

My kids are great teachers. I needed them to remind me that our family is WAY stronger than our circumstances and focusing on cake is WAY more important than the other crap.

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Love, Jess

Lucky 21!

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You are all thinking the same thing – How old were we? No lines on our faces or worries in our eyes. In such a hurry to settle down and get started as adults. We were looking forward to adventures and children and making a home. We’ve enjoyed all those things. Not exactly as we’d planned them, but have managed to enjoy them all the same.

21 years.

Not many couples can say they’ve made it 21 years, and even fewer can say that they’ve enjoyed MOST OF those days. Thank you Dan for all of your love and support and respect. I am still that lucky girl you see in the photo who is looking forward to adventures and children (not more, just the ones we’ve already made) and making a home (wherever our next chapter takes us). Just don’t put your glasses on, and I even look about the same.

Love, Jess

Birthday love

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Today our family celebrates John Redmond Torrey’s 9th birthday. Yes. I know that Jack was born nearly 18 years ago,  on August 5th, 1998. But on May 30th each year, we celebrate the day that Jack was given life – again. Today is his “other birthday. “

Nine years ago, Jack was living at Morgan Stanley Children’s Hospital in NYC. He had been diagnosed with Adrenoleukodystrophy just one month earlier. Thanks to our team of amazing team of doctors and nurses, he received a stem cell transplant from an anonymous donor. The entire procedure took less than 15 minutes. In keeping with Jack’s relentless attitude and irrepressible spirit, we played Aretha Franklin and danced and laughed in his hospital room as the stem cells slowly dripped into his arm…. and eventually gave him a new life.

That was nine years ago. Now my son is a happy and healthy teenage boy. The same old Jack – just taller, and with more and more with facial hair. I am so so proud to be his father. And so thankful for every day that we have him in our lives.

Jack — I love you very much!

Love, Dad

What’s NVRN spell? Nothing.

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This is the smile that gets me through the hard stuff.

 

At my tennis lesson last week, I saw a young woman who looked familiar. She was a little older than Anna, and I was having trouble placing her. I went back to trying to focus on my forehand when it hit me, “Hey. Did you happen to go to Morrow Preschool?”

“Yes.”

Suddenly I could picture this slim young woman as a little girl a dozen years ago, with rosy cheeks and a glowing smile, playing with Jack on the playground at their preschool.

“You were in my son Jack’s class.”

“Wow. I’m not sure I remember him. Does he go to the high school?”

I sometimes freeze when I get hit with what’s happened. Maplewood is usually a safe place, where everyone knows our story. Where I don’t need to say things out loud. My stomach turned as I tried to choose my words so that we could simply go back to groundstrokes and drop shots, “No. Jack goes to a special school. His life’s kinda complicated.”

Now that we were both feeling awkward, I wished I hadn’t started this exchange and quickly looked for a transition. Her sweatshirt was bright and new with the name of her future, WESLEYAN, “You’re a senior this year? Heading off to Wesleyan in the fall? That’s wonderful.”

That’s all it took. Her smile grew, as she went from wondering what happened to her old classmate, to thinking about the adventures that lay ahead. We were both allowed to continue with our lesson, focusing on easier things than how complicated life can be.

When I got home from the lesson, I went into Jack’s room to say goodnight. He was sitting up in bed, and as soon as I walked in the door, he gave me a big smile as if he’d been waiting for me to tuck him in. I gave him a kiss on his forehead and laid him back down. As I covered him up, I realized he was wearing the bright purple NORTHWESTERN sweatshirt that we’d gotten him last year while visiting my parent’s alma mater.

The sweatshirt is missing all but 3 1/2 of it’s letters. Jack has somehow managed to eat the rest. He has eaten the O,R,T,H, most of the W, E, S, T, and E.

I can’t make this stuff up. It is a college sweatshirt that’s missing the college.

Love, Jess

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Everyone poops

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I’m fairly certain that Jack identifies himself as a male, but he never thinks twice about accompanying me into the Ladies’ Room. And, even if the visit is for me, he joins me in the stall because I cannot trust his decision making if left alone, even for a second. It’s not easy, but it’s our reality.

Over the years, there have been times that I’ve been questioned by strangers, even scolded. Just a few weeks ago, I got a tap on my shoulder followed by a, “He looks FAR too old to need to be with his mother.”

Although I was tempted to mention that she looked rather old and cranky, I took a breath and simply explained that my son was “special” and couldn’t safely be left on his own. Then I locked my teenage son and myself into a small stall so that I could poop.

Not sure why there is so much concern over where people do their business, but I want to share that our family has been making our own toilet rules for a long time and we think people should get over their fears. If anyone ever refused to let Jack and I use the bathroom of our choice, I would have a simple solution, and it would require a lot of bleach to clean up.

Love, Jess

We do support a law banning guns from all bathrooms.

 

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It’s a bird. It’s a plane. It’s Jack!

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Poor Jack. His life is so limited.

It’s such a shame he needs to go to school every day. He probably just sits there, staring at the clock, hoping for time to pass quickly.

OR, He gets to fly across a stage!

 

 

Jack’s school mom, Monica, sends us pictures and videos almost every day of his school adventures. Yesterday’s was particularly amazing. Jack just might be the luckiest kid on the planet!

No need to feel sorry for our boy;)

Love, Jess

Mother’s Day – to Club or not to Club?

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Our last brunch at The Club. This was BEFORE the meal.

 

Brunch is a lovely invitation, especially for Mother’s Day. The idea of not being responsible for the cooking or doing the dishes is always welcome. And who doesn’t love being showered with a little extra love on Mother’s Day (while getting to spend it with Mymom)?

So when my folks called to extend an invitation for Mother’s Day Brunch at their country club, my first reaction was a smile, but quickly my mind started to race.

Does Jack’s sports jacket still fit? I’m fairly certain that he ate his last tie. Could use one of Dan’s? I wonder if he could reach a bow tie with his mouth. Does Target sell bow ties? I’m not spending another $80 at Vineyard Vines for a single-time use.

Then, I started thinking about all the other pitfalls that might be lurking at the country club. We’ve enjoyed many wonderful times there, but Mother’s Day is sure to be a scene, and that just adds to potential problems we could face. A simple outing for brunch can be complicated for our family, especially when there’s a coat and tie involved.

The diaper bag needs to be packed. We’ve changed it’s name to “The Satchel of Freedom” (thank you Peter). The new name focuses the attention on the fact that the bag allows us to rome free, but it’s purpose remains the same. It’s full of diapers and wipes and a change of clothes. The change of clothes includes socks. When Jack goes to the bathroom, it’s not uncommon to require a FULL set of new clothing. Do we have a another set of “fancy clothes” to fill the satchel?

This brings me to the next concern when going out for a meal with Jack. We need to consider the bathrooms for any needed “costume changes”. When Jack was a little younger, I could get away with bringing him into the Lady’s Room and sneaking into the handicap stall without attracting too much attention. At seventeen, Jack is harder to sneak in without creating a lot of puzzled looks. People try to be polite, but I feel the stares as I start to walk Jack toward the bathroom. His hopping gait doesn’t help staying inconspicuous. Sunday at The Club might be crowded. Is there a private bathroom hiding somewhere?

Yikes! Sunday is going to be really REALLY crowded.

A big crowd means that they might squeeze in extra tables. Now that Jack has added hopping to his repertoire of behaviors, if tables are too close together, he tends to knock against people causing quite a scene. It’s particularly awkward when he bumps a table and then tries to snatch a piece of bread off a stranger’s plate. Dan and I have both learned many funny one-liners to try to apologize for such instances, but it’s still not fun.

This isn’t going to work.

“Let’s definitely get together Sunday, but is there any chance we could go somewhere else? Somewhere Jack friendly.”

Mymom gets it. Although she loves showing off her grandchildren, she has helped more than once assisting in a complicated clean up, and she understands that Mother’s Day may not be ideal at a crowed club.

I made a reservation for an early dinner at a local restaurant that has broad isles between tables and large, private bathrooms. We will get ready early in case of any unexpected delays, making sure Jack is wearing dark colored pants to mask any spilling/leaking. No jacket or tie required. The Satchel of Freedom will be packed and ready for any unfortunate events and we will draw straws to see who gets to feed Jack.

I’m much more relaxed with this new plan, but we never leave the house without crossing our fingers. Going out with our boy is always an adventure.

Happy Mother’s Day!

Love, Jess