We love CP.

IMG_2586It’s been a while since I’ve felt that people were watching us. The kind of watching that people do when they are trying to be subtle.

My only explanation is that Jack was looking particular “normal” yesterday (am I allowed to use that word?). He was wearing over-washed jeans and a sweater with a tee-shirt poking out of the top. He had on hiking boots instead of his usual school footwear (which include brightly colored leg braces) and he was in desperate need of a shave. He looked like an average teenage boy.

We walked into the doctor’s office without drawing any attention. Before checking in, I walked Jack over to a chair, took off his coat and guided his rear onto the seat. This action requires me to literally bend him. The only person who noticed the routine was a young boy playing a video game across from us. As he watched me settle Jack down onto the chair, he made a face and grabbed his mother’s arm, “What’s wrong with that kid?”

“Shhhhhh.” she answered too loudly, “Stop staring.”

Suddenly, everyone in the waiting room was trying not to stare at us. They quickly looked down at their magazines or phones as they kept one eye in our direction. I could almost hear their minds racing as they tried to figure out what was with wrong with this seemingly normal teenager. Just as I was getting ready to give a little explanation to the group, we were told the doctor was ready to see us.

As the nurse ushered us into the examination room she proceeded to have an entire conversation with Jack without noticing that he didn’t once answer any of her questions. I guess she was used to over-zealous mothers doing the talking for their sulky teens. It wasn’t until she told Jack to take off his shoes and hop on the scale that she seemed to acknowledge that Jack was “complicated”. As I knelt down to pry off his boots she said, “I have a cousin with Cerebral Palsy.”

Jack often get’s mistaken for being Autistic, but this was new. Without thinking I blurted out, “Jack doesn’t have CP. He’s has Adrenoluekodystropy . . . and Addison’s and Epilepsy, but not CP.”

I suddenly worried that I might have insulted her (and/or her cousin), so I continued, “Not that there is anything wrong with Cerebral Palsy. Jack has a lot of friends with CP. In fact, my sister-in-law has CP . . . We actually love CP.”

The awkward silence that followed was painful and I tried desperately to liven up the room by telling Jack ridiculous jokes. This only made things worse and as the doctor walked into the room the nurse left quickly and I could have sworn I heard her gossiping about our conversation with the other nurses in the hallway.

We saw the doctor and left the examination room eager to leave this errand behind us. We walked down the hallway toward the waiting room trying not to make eye contact with any of the nurses (all of whom were doing their best not to stare). As we checked out, we were met with another unsuspecting person who glanced up at us. Jack was standing with his arm tightly around my neck – a stance that I am very used to, but might seem rather peculiar to a stranger. She just smiled and said, “You are so lucky that he still loves on you. My boy won’t give me the time of day.”

I took a deep breath, preparing to go into my explanation about Jack’s challenges and inability to respect common boundaries, but then I thought better of it. “Yes. I am lucky.”

Love, Jess

Words

jacks smile

I’m sad to report that we didn’t win the lottery last night. I’m not sure why I’m always surprised when our numbers don’t match. A feeling of disappointment comes over me when we need to reshelf our “early retirement, Block Island dream house, pay off everyone’s mortgage” plans. Truthfully, money isn’t even what our family dreams about most. Our real dream is for words.

A friend of mine posted a question on Facebook yesterday, “If you could have one free day of any illness, what would you do?” THAT is a lottery that our family would love to win! I spent only a second before answering, “We would listen to Jack’s stories all day long.”

Jack does not speak, sign or write notes. Not only do I miss hearing him say “I love you Mommy”, but his lack of speech makes certain situations particularly challenging. We were at the hospital two weeks ago with Jack. He was clearly sick and not able to tell us what was bothering him. Not knowing if it was his stomach, his throat or his ears created the need for additional tests and extra worries. Even on a typical day Jack’s silence is complicated. His inability to call out if he needs us in the night sets Jack apart from even a young baby.

Strangers often have a difficult time understanding. They assume that his speech is limited or difficult to understand. I try to be clear, explaining that the only sounds Jack makes are sneezing, coughing and laughing.

“But how do you know when Jack’s hungry or sad?” I try to explain that although he can’t be specific, Jack is able to communicate most of his needs without words. When he locks his eyes on yours he is able to be quite clear. I’m not really sure how he manages this, but people who love Jack learn quickly how to read his eyes and his silence becomes less quiet. While he might not be able to tell you when he has a sore throat, he can fill a room with stories without saying a word.

It doesn’t mean that we are content with Jack’s silence. Seven years after ALD stole his words l still dream of hearing them. Dreams so realistic I can still hear the sound of his voice when I open my eyes. It’s hard to wake up smiling only to realize that it was just a dream, but I won’t trade those magical moments for a winning lottery ticket (even the $485 million variety)!!
Love, Jess

Jack does use an iPad and (mostly at school) has some success answering questions AND Jack is able to sigh one thing — I LOVE YOU.

a job, a dad, and a beard

beard family

Big day here at 26 Clinton Avenue, and I’m not referring to the snow day. Today, after seven months at home, Dan went to work.

Working in finance it’s almost expected that you will be let go, downsized or simply fired at some point in your career. Its often not a reflection of your work ethic or knowledge base, it’s just that companies change their strategies or decide that someone is easily replaced with a cheaper version. Dan and I have both known it was a possibility, but have always been lucky to enjoy the security of consistent paychecks, fun bonuses and good medical insurance.

When Dan first got let go, it did take me a little while to put it in perspective. Our family has certainly had worse days (heard worse news), but the news of Dan losing his job shook my foundation. Dan’s job has always been a stable structure in our percarious house of cards. We’re not so well off that we aren’t aware of money, but it’s something we don’t need to worry about often. We have enough. Enough to pay bills, enjoy vacations and pay for help that allows me to breathe. Money makes our lives easier. I know this, because I know many families with complicated lives that don’t have any. It makes difficult circumstances, more difficult.

Although those first few days after hearing the news I did feel the unease of not knowing what to expect and feared the possibility of losing our security, I wasn’t as panicked as I would have imagined. My confidence in Dan, our families resilience and our savings allowed me to keep my perspective. Dan put me further at ease when he explained the generous package that his company had offered. Not a “golden parachute”, but solid silver. And, a package that included a “garden leave”.

Although Dan managed to secure his next job quickly, this “garden leave” required him to stay out of his industry for a period of time. “Garden leave” protects companies from having their ex employees hitting the market quickly. It meant Dan got to enjoy all the perks of working (salary, benefits, etc) without working. And, he got to spend the last seven months going through our family weekday routine – a routine that he has never had the opportunity to truly witness. I thought it would be tough adding Dan to our days, but it’s been wonderful. He’s been great company, had meaningful time with the kids, and has enjoyed hiking, reading and growing his beard.

After seven months, it was strange to see him put on a suite this morning, and kiss my forehead with his freshly shaved face. Strange having breakfast without him. The house seems oddly empty without his music playing and offers to do the grocery shopping (and shoveling). It’s going to be an adjustment, but we’re ready and grateful that we had this break. I’m so glad I didn’t waste too much time worrying.
Love, Jess

Just a crappy day.

water

I thought I was imagining something when I first heard the water, but then I felt it. A little drip that quickly turned into a gush. Within minutes it sounded like a river was flowing down from our washing machine (on the second floor). Water pouring out of the mudroom ceiling and quickly covering the tile floor. At first Dan and I just stared at the water yelling four letter words – as if they would somehow seal the the pipe. “We need to turn off the $%^&ing water!” finally got me to move.

I ran to the basement and my socks told me that the water had already found its way downstairs. I remembered a contractor once showing me where the water shut off valve was, but with the sound of water it was hard to concentrate and there are a whole lot of valves in that front utility closet. It took me a few minutes, but finally I held my breath and turned the blue valve. Instantly, I heard the sound start to taper off.

I always though there should be a rule that if one part of your life is complicated that everything else should fall into place. Unfortunately, life doesn’t work that way. Life can give you more than you can handle. Bad things happen to good people. And, I really can’t imagine there is some “great plan” that includes diseases like ALD and pipes bursting.

That’s my truth. Life is hard and not always fair. I’m jealous of my friends and family who believe otherwise, and have I’ve tried to adopt their faith, but I tend to go back to the “life (nature) is often cruel“ approach to life. But don’t think that my reality means that I walk around the world assuming or expecting the worst. My approach actually allows me not to take things personally or spend much time asking WHY. It’s just life. Sometimes we get dealt a bad hand, sometimes a winner. I try to do the right thing because it seems to stack the odds better for people around me. And, I surround myself with people who do the same. I also try to really appreciate the good times and not take things too seriously.

After our water crisis, Dan and I took a few minutes to feel sorry for ourselves (we may have even revisited some four letter words), but the conversation quickly turned to “how lucky we were that we were home” and “how much worse it could have been” and “thank goodness for good insurance”. We spent a few hours pulling up carpeting, drying off walls and setting up dehumidifiers. The plumbers finally came, were able to isolated the broken pipe and restored the water to the rest of the house. They apologized as they explained that it would be a few days before they could do the repair work (century old homes and 10 degree temperatures are great for the plumbing business). They also said that we should call our insurance company, “I’m really sorry, but this might get complicated.” Dan and I just looked at each other and smiled.

When you have lived through truly horrible days you recognize a simple, run of the mill, crappy day for what it is. Friday was just a crappy day.

Love, Jess

GivingTuesday

smiles

CPNJ / Horizon High School asked us to make a donation on #GivingTuesday and to take an “UNselfie” sharing what inspired us to donate.

“What does Jack do at school?” is a question I’m often asked. I usually answer, “Jack does what every other 16 year-old boy does – he hangs with his peeps and flirts with pretty girls.”

In fact, Jack does a lot more at Horizon High School. He gets therapy (PT, OT, and Speech). He has classes in Science, Career Skills, Social Studies, Language Arts, Life Skills, Drama, World Cultures, Art, Music, Technology, and Math. He works at the school store. He participates in modified sports. He attends dances and parties and plays. He goes on field trips to Trader Joes to practice “appropriate behaviors” (although I think that might be more hanging and flirting).

After The PG Chambers School we were concerned that we wouldn’t find a good fit for our boy as he entered his high school years. There are no schools for ALD boys post transplant – no schools designed for handsome young men who understand inappropriate humor but can’t speak or reliably use the bathroom. We did find several schools that could handle Jack’s needs but Horizon had something that the others were missing. They approach school the way that Jack approaches life – with GUSTO!

Cerebral Palsy of New Jersey (CPNJ) runs programs for people of all ages with all sorts of “complicated” issues. And, they treat each of those people with respect and devotion. Monica (Jack’s one/one aide and a friend) often sends home pictures of Jack during the day. Whether it’s him in the classroom, planting in the garden, or rockin’ out at a dance party he always has a huge smile on his face. THANK YOU CPNJ FOR CONTINUING THE SMILES!

http://www.cpnj.org/givingtuesday

Love, Jess

Slow down and check your rearview.

driveway

We have a very narrow driveway. It’s sandwiched between a curb and a low stone wall that has left long scratches on the right side of every car we’ve owned since we’ve move into this house. I’ve found that if I focus just on the left side car mirror, I can follow the length of the driveway without harm. I’ve managed to avoid any damage for months – until yesterday.

Yesterday was my birthday. It started with a gentle birthday kiss on my cheek and a playful lick of my toes (Dan cheek/Finn toes). The morning continued with it’s perfection as we got the kids up and out, I ate my birthday breakfast and took a long walk with the dogs. I then got to sit down on the sofa to sort through piles of birthday wishes via text, phone and Facebook. I was feeling quite loved and very calm.

It wasn’t until I glanced at the time and realized that I was late for a meeting, that reality spilled back. What time was I supposed to be there? What time is that dinner thing tonight? Oh no – do I have anything to wear for that? Did Maria say she could be here by 6? Yikes, my folks called again – how did I miss that?

I threw on a coat and raced to the car. As I got in the driver-side, I was hitting the voicemail button on my phone wanting to hear my parents message. The Grateful Dead was blaring, my mother’s voice was wishing me a happy birthday and I was focusing on that left side mirror so that I could get to out of the driveway and to my appointment without being late.

I’m not sure what happened next. Maybe it was seeing a person waving their arms outside the passenger side window or maybe it was the loud “you’re too close” sound our car makes or maybe it was just the loud bang as I plowed into my friend’s car. My dear friend, Jen, had come by to surprise me with a birthday gift. I was so wrapped up in my crazy that I hadn’t noticed the giant SUV parked at the end of the driveway. I had been so overwhelmed with plans and meetings and stuff that I had forgotten to look around me.

Sometimes I feel very on top of things. Proud of the way I maneuver through a rather complicated life. I manage to have a fridge full of food and warm meals for my family. I teach some art classes at the local schools and write every day. But, sometimes I get a little distracted by my list of to dos that I forget to look around and notice the people around me.

Every year I write a list of goals I hope to achieve before my next birthday. This year at the top of that list is to remember to stop and look around before hitting the gas. I don’t want to miss special moments with special people AND I don’t want to damage any more cars.

Love, Jess
When I finally opened the box that Jen had delivered, It was delighted to see it was filled with 45 lottery tickets. I called to thank her and told her I hoped that I would win enough cash to pay for our cars to be fixed.

The “C” word.

sdtcollege

Lately we’ve been reminding our daughter, Anna, to leave all her doors open as she approaches adulthood. Strong grades, long lasting relationships, healthy habits — these are the things that can keep those doors open, leaving her with as many opportunities as possible. Jack had most of his doors shut before his ninth birthday. These lost opportunities have been huge focus for me the last couple of weeks.

Jack’s smile is usually enough to melt any feelings of sadness or frustration over what Adrenoleukodystophy (ALD) has done to our family. Jealousy seems to be harder to dissolve. Jealousy is the latest emotion in my journey toward acceptance.

When Jack was first diagnosed, we were thrown a pile of statistics and quickly learned how lethal ALD can be. The more advanced the disease at diagnosis, the worse the outcome. Loss of speech, vision, and hearing are almost expected and mobility is the next to go. All these possibilities seemed manageable as long as we didn’t lose our boy. And, we didn’t – we brought Jack home 79 days after his transplant and he managed to walk from our dented silver minivan to our front door. He was able to see the “Welcome Home” signs filling the front yard and hear the cheers of his friends as he arrived. We were lucky and I swore I’d never complain.

I’ve kept my promise — mostly. Dan, my mother, and my best friends know the ugly truth that I’m not always the picture of acceptance and joy. I do have my moments of anger and resentment and do sometimes yell, “Why the $%^& did this happen to us?!?!?!” Usually these moments are brief and can be calmed with a glass of wine or a strong hug. And, until recently, they’ve been sporadically sprinkled over an otherwise positive mood.

Lately, I’ve noticed a reoccurring knot in my stomach and a hard lump in my throat. Sometimes it’s followed by the need to leave a conversation quickly, and the want for a long walk or time alone in my room. It took a while to identify this feeling as jealousy and to figure out what was triggering it. After some soul searching, I’ve discovered the source of my uneasiness — college.

College is suddenly the topic of choice in our middle age, suburban circle. Jack’s peers are starting to prepare for their next chapter and they’re doing it without him. They’re visiting schools, planning their futures, and soon they’ll be heading off to their next adventure. All while Jack will be here with us in Maplewood (forever the dependent child). I’m jealous that our boy is faced with so many closed doors,  is not working on his college portfolio AND that Dan and I are not planning our empty-nest phase.

Typical Jesse, I keep finding myself knee deep in these conversations, as if the outcome is going to miraculously change. That it won’t bring me back to Jack and his lack of need for SAT prep and college essays. It’s ripping open the scab that I thought had fully healed, but I keep on asking the questions, “Where are you applying?” “Are you thinking a big state school or something smaller?” “How’s your SAT prep going? Have you found a good tutor?”. The truth is that I want to know. These are kids that I love and I am excited about all of their opportunities. I want to know every detail of their process. It’s also a way for me to prepare for Anna’s next steps as a student (writing those words brings that lump back).

So – when will I get over this latest bout of jealousy/anxiety? Sometimes writing it down helps me reach the end more quickly. Somehow it takes a little of the poison out of the situation. And, I know that acknowledging the problem is always a good first step.

Our local friends/neighbors are now going to panic that they need to steer clear of the “C” word for my benefit. Actually, I think it’s better if they do the opposite. The more I hear the word “college” the better. I need to get passed this or the next few years are going to be miserable!!
Love, Jess

Jack-O is . . . a punk rocker!

Jack left for school this morning with a big smile on his face and a large mohawk on his head. By all accounts he rocked his way through the halls of Horizon High School and returned home with the “Most Creative Costume” award.

Any time you are feeling sorry for Jack and his complicated life, look at this picture.

jackrocker2

HAPPY HALLOWEEN!!!

Love, Jess

Keegan

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

jackcouch

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