Tag Archives: Surviving

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

Poop, shower and shave

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Jack’s school, Horizon High School (HHS), is having their annual fundraiser and I wanted to write a post encouraging everyone to make a donation. My first draft was filled with all the extraordinary experiences offered to the children at HHS. Physical therapy, occupational therapy, speech therapy, a school store, student government, theater, aqua therapy, an outdoor garden. This is all on top of academic subjects (modified versions of Science, Career Skills, Social Studies, Language Arts, Life Skills, Drama, World Cultures, Art, Music, Technology, and Math).

Horizon High School is amazing for all those reasons, but there is one other reason that not all parents will admit. Horizon High School gives me a break.

I’m always happy when the small white van (no yellow bus for us) arrives, and today when I saw the bus out our front window, I started crying happy tears.

This morning was particularly tough at 26 Clinton Avenue. I knew it would be as soon as I walked into Jack’s room. Even Jack’s brilliant smile couldn’t mask the odor. “Come on JackO! This is gonna require a long shower and some extra cologne.”

If I keep Jack laughing, I have a chance at survival.

Eight years into this new life and I have developed an amazing skill where I can almost shut off my eyesight and sense of smell, so that I can go through motions required to clean up after a messy situation. I can’t even describe this morning’s shower fully, but we went through a half dozen washcloths and I needed to wash the tub when we were finished.

Just as I was getting Jack out of the shower, he surprised us both by peeing on the bathroom floor. One more quick rinse in the shower and I added the floor to my list of cleaning duties. As I got Jack dressed, I glanced at my watch and realized that we had lost valuable minutes and needed to rush through the normal “upstairs routine” in record time – teeth, deodorant, hair brushing. If only I hadn’t told Dan my plan for today. We still had our “downstairs routine” – breakfast, medication, hydration, and those cumbersome leg braces to deal with. And, now I had to shave Jack too. Alone.

I’m not entirely sure why I thought telling Dan that I would shave Jack was going to make the chore disappear. Jack was already in bed when I shared my plan. I couldn’t have expected Dan to wake up his son to shave him. And, I knew the fuzzy hair wasn’t going to evaporate on it’s own. But, it had been over a week since his last shave and Jack was starting to sport a look that was a cross between gangster and homeless. I couldn’t help but mention the need for a shave and that “I guess I will be the one to do it.”

After our “upstairs routine” was over, I helped Jack down the flight of stairs and I fed him, gave him his medication and 12 ounces of water through his g-tube. Then I sat him down on our steps to put on his leg braces and sneakers, already cursing as he did very little to help with the process. Once we were done, I took a deep breath, put Jack in a headlock and took out the electric razor.

As soon as Jack heard the motor, he started wrestling. If anyone had witnessed the scene, I would defiantly have lost my parental rights. He was wiggling and trying to grab my hand as if I was pummeling his face. I did my best to keep him safe and I attacked the beard while yelling one four letter word after another. After about five minutes we were both exhausted and Jack’s face looked better – not great, but better.

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Now, we were ready for the bus. Just an hour since the alarm went off and I was already in need of a nap. Horizon High School to the rescue!

Horizon High School is amazing for so many reasons – it’s individualized curriculums, warm and brilliant staff, beautiful facilities, but sometimes the thing I love most is that it’s a place that Jack can go every day, be safe and loved AND I’M NOT IN CHARGE. I love our boy and can deal with a lot of crap, but sometimes I need a break.

Love, Jess

Please consider supporting our wonderful school.  DONATE TO HORIZON HIGH SCHOOL

 

 

 

Here are some reasons to vote . . .

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Aidan Jack Seeger

I have a favor to ask of all of you who read this blog. VOTE YES!!

Aidan’s Law will require ALD screening in all fifty states. Many of you won’t need persuading to stop what you are doing and sign this petition, but some of you may pause and wonder if, in a world full of issues, we should be focusing too much attention and money on a rare disease. This post is for YOU. I have five reasons you should consider signing.

1. NUMBERS

As far as rare diseases, ALD is not so rare.

The current guess is that ALD effects 1 in 17,000 people. I say “guess”, because as our country does more testing, we are finding that many people have been mis-diagnosed with other diseases. ALD is a disease that winds it’s way through families and often does a good job at hiding for a generation or two and masking itself with a variety of symptoms/timelines/etc.

2. SURVIVAL

Aidan Seeger’s story is all too common with ALD. Without the luxury of an early diagnosis, the disease is allowed to devastate the body, stealing one thing after another as a family struggles to figure out what’s happening. Once a proper diagnosis is made, the options are limited and often prove to be too late for an already worn out body.

When Jack was first diagnosed, we found a half-dozen other families who were going through the processes of stem cell transplant (still the most popular treatment option). Jack is the only one of those boys who is still alive.

3. QUALITY OF LIFE

Jack is fortunate to have been diagnosed with just enough time to receive treatment and with just enough luck and energy to survive. Unfortunately, ALD did managed to steal much of his quality of life. While he is happy and doing well, he is fully dependent. We feed him, hydrate him (through a tube in his belly), medicate him, dress him, toilet him. He needs someone to walk him from the den to the kitchen. And, Jack is doing far better than some of his ALD peers. Most of these boys are in wheel chairs and many have significant hearing and vision loss.

4. MONEY

Many people are hesitant to stand behind and pour money towards an unknown disease. It’s important to understand just how expensive it is for our society to raise boys who survive after a late diagnosis.

Jack’s education costs almost $100,000 a year. He requires (and receives) physical therapy, occupational therapy and speech therapy several times a week. He has an aide who’s job it is to work solely with him, because he is not able to maneuver through his day at his special needs school.

Jack is turning 18 in a few months. An eighteenth birthday is usually celebrated with a party and the honor of voting, being able to serve in our military and applying for college. For Jack, his birthday comes with Dan and I applying for guardianship and Jack becoming eligible for both Social Security and Medicaid.

Jack is a very sweet and VERY EXPENSIVE member of our society.

5. IN CASE YOU NEED MORE

It would have been heartbreaking to learn when Jack was just a baby that a gene was lurking in his body that would likely someday need complicated treatment. It would have been difficult to find the proper doctors to monitor his development as he went through childhood. It would have been devastating to get the news that ALD had started it’s war on Jack’s brain and that we needed to drop everything and proceed with treatment.

BUT this would have happened with enough time that right now Jack would be approaching his eighteenth birthday with a healthy body and a future full of opportunities. If only Aidan’s Law had been passed 18 years ago.

There are 402 more signatures needed on this petition. Let’s help get this wrapped up today. Thank you to the Seeger family for devoting their lives to this cause.

AIDAN’S LAW – VOTE NOW!

Love, Jess

 

Keegan

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Keegan

Last Friday I found myself at the veterinarians office explaining to the woman behind the desk that NOTHING could happen to Keegan, “Seriously. He’s not just my son’s assistance dog, he’s family.”

Keegan is an exceptionally well-trained dog but, as we were told again and again in team training (the 2 week boot camp Jack and I attended before bringing Keegan home), dogs are dogs and we need to make sure they don’t get into anything they shouldn’t. I lost my focus last week and Keegan ate a “foreign object”.

At first I didn’t think too much about it. Finn (our pet dog who also goes by the name “Bad Dog”) eats things all the time and he’s managed to live longer than his breeder promised — I mean, estimated. But, when Keegan started vomiting I took him directly to his veterinarian. X-rays and sonograms determined that he’d done a number on his stomach but he’d managed to expel the majority of the the object and he should pass the remainder. He was given IV fluids and we were sent home with special food and instructions to closely monitor him and sort threw his elimination. I assured his doctors that I was well versed in both monitoring and elimination.

“Monitoring” translated into lots of middle of the night check ins, and “sorting through his elimination” was especially interesting with limited sleep. It was a tough few days before he bounced back, but we were willing to do anything for Keegan. I  knew how important he was for Jack, but until last week I hadn’t appreciated how important our furry friend is to our entire family. He keeps me company while Jack’s at school. He’s my walking partner and my sounding board. He knows all of Anna’s secrets. He allows Dan and I to sleep comfortably, knowing that Jack has his buddy cuddling next to him in bed. And, Keegan warms all of our hearts with his ability to entice people into approaching Jack – people otherwise intimidated by his quirkiness.

I’m often asked what Keegan does as an assistance dog and I’ve always answered with the same explanation, “He’s Jack’s best friend – his constant companion”. Now I know that Keegan is much more than Jack’s dog; he belongs to all of us. He’s a big, hairy piece of duct tape.

Love, Jess

If you would like to learn more about assistance dogs (or make a donation), please check out http://www.cci.org

Thank you Jack

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Everyone has challenges. We’re all burdened with regrets from our past, struggles in the present and concerns for the future. Often burying ourselves under a pile of worries. While I’m not suggesting that any of us has the ability to walk away from our pile, sometimes it’s important to put things in perspective and live in the moment.

I’ve been feeling a little stuck lately. Overwhelmed by everything from finances to parenting challenges to what to make for dinner. Yesterday, I was sitting with a stack of bills in the den and found myself watching Jack and wishing that his mood were contagious.

Jack was sitting on the couch watching a movie with one hand resting on Keegan and the other firmly in his mouth (he’s a chewer). His expression was one of pure joy. JOY is Jack’s usual expression. His mouth falls naturally upward and his eyes literally glow. Whether he’s watching television, eating or spending time with friends, Jack is completely present and happy. Although he can’t speak, Jack clearly understands everything around him. Spend an afternoon (or even a meal) with him and you will see that he is following every bit of the conversation. And, don’t let his juvenile behaviors trick you. Jack is a 16-year-old boy – he likes loud music, pretty girls and fart jokes.

As I watched Jack yesterday, I marveled at his beautiful and relaxed expression. His life is complicated but he always manages to find his peace. It occurred to me yesterday that his challenges provide him the excuse (that’s not really the right word, but you get the idea) of not needing to worry about things like paying bills, making dinner or doing homework. His sole responsibility is to live. He has a solid team caring for his needs allowing him to simply enjoy each moment. He knows that his sister will find him a good movie to watch, food will be provided when he is hungry and he will be changed if his clothes get wet.

While I have my pile of worries, I realized yesterday that, like Jack, I’m surrounded by a team to help manage my pile. I can’t rely on my team to do everything, but I don’t need to do any of it alone. Suddenly, I felt my shoulders relax, I put down the bills, announced that we were ordering in dinner, grabbed a pillow and found a spot on the couch next to my boy.

Next time you’re feeling overwhelmed, stop by and spend a little time with Jack. I can promise you that you will walk away feeling a little lighter. It’s like yoga without all the stretching.

Namaste

Love, Jess

Weekend Away = Panic

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photoThis is when I start to panic. I start to think of all the possibilities of what could happen while we’re 229 miles away (yes, I looked it up). I have the usual concerns – What if Jack gets sick? What if the dogs get lost? What if the G-tube falls out? And, this year I have the added anxiety of leaving our high school daughter with limited monitoring. Anna’s a great girl, but I’m always waiting for her to turn into the rotten teenager of my past.

We’re heading to Massachusetts for a visit with old friends. Dan and I are lucky to share an incredible pile of friends from college. A pile that manages to find any excuse to get together and pretend that we’re still eighteen (with better wine and tougher mornings). When Jack first got sick, I never imagined that we’d manage to keep up our mini-reunions, but early on we decided that time away with old friends was a necessity.

Our friends have always been a big part of our lives and for the last seven years they’ve been a big part of our survival – duct tape. Being with old friends and escaping reality with my husband a few times a year is priceless. This crew let’s us just be Jesse and Dan, alleviating us from being ALD parents. And, being away reminds us that other people can be in charge without the world imploding. We’re not the only people who can bathe and medicate Jack and gently remind Anna to put her phone away. We may come home exhausted on Sunday, but we’ll be refreshed.

So it’s all great. Dan and I are getting time with each other and old friends; the kids are getting time with each other and Maria (Jack’s sitter, my savior, and an amazing cook). So why am I spending nights awake thinking of all the things that could go wrong? Why is going away so stressful, even when I know that the kids will survive and Dan and I will have a ball? Maybe it’s just a mom thing.

Dan doesn’t share my crazy panic. He’ll wake up Friday, throw some clothes into his weekend bag, give the kids a smooch, and hop in the car. Meanwhile, I’ll make Dan turn the car around twice before we reach the highway to double check my three page list of instructions. We will be in Connecticut before I can breathe. And, I will call so often this weekend that Anna will start to answer with, “Mom. Are you kidding me?”.

I’m here at my desk working on my “list” and making sure I haven’t forgotten anything critical. My bag is already packed and in the mudroom and Jack’s medication is drawn and labeled for the next week (What if something happens and we can’t make it home by Sunday?).

If the world doesn’t collapse, Dan and I are heading out Friday morning. If you see the kids around town this weekend, give them a hug AND if you see me post any pictures on Facebook, please send me a text with a gentle reminder to put MY phone away.

Love, Jess