THIS is LEUKODYSTROPHY #24 — Ethan

For most people, Facebook is all about travel pictures, political comments and dog videos, but for me it’s largely about connecting with the ALD and other Leukodystrophy communities. Last weekend, I stumbled on a post from a mom that I wanted to share. Much of the focus on our diseases lately has about getting an early diagnosis and the newest treatment options. It’s important to remember that some of our families have been living with ALD and similar diseases for a long time. It’s not as thrilling as the new stories, but our boys are beautiful and important too.

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THIS is ALD (ish) #24 — Ethan

9 years ago, Ethan’s father and I were sitting in a neurologists office listening to a doctor tell us, “Your son was misdiagnosed with Cerebral Palsy. He actually has an unknown leukodystrophy – a very rare disease that is progressive”. 

I’ll never forget that day. The doctor had no bedside manner and told me not to Google the disease because awful things will happen to Ethan and then he will pass away. I left that appointment feeling helpless and hopeless. The doctor’s words played over and over again through my head as we drove home and I cried on the highway. I remember looking back at Ethan in his car seat all smiles and happy, not knowing he was very sick. 

For over a year, I let that doctor rule my thoughts “Ethan is dying  — the doctor basically said there is nothing we can do, “Don’t Google the disease”. I would have constant nightmares about Ethan’s funeral and wake up in a panic. I would check on him while he was sleeping to see if he was still breathing. 

A couple years later, we finally met Dr. Eichler (the director of the Leukodystrophy service at MassGeneral Hospital for Children) who has given us nothing but hope and a positive attitude. He genuinely loves Ethan and has never once said, “Awful things will happen to him.” Or, “He is going to die.”

What Dr. Eichler does tell us is, “Look how far he’s come” and, ”Yes this disease is progressive, but Ethan is a fighter”. Ever since meeting Dr. Eichler my outlook on Ethan’s disease has changed. When a doctor actually looks you in the eye, answers your questions, hugs your child, laughs with your child, checks in with you via text, email and phone calls, then you know you have the right doctor. 

Shame on the doctor who gave Ethan a death sentence and no hope! Guess what? I Googled his disease and ended up connecting with amazing families all over the world who share the same life we do. Connecting with other families has been a wonderful experience. Seeing all their pictures and how loved these boys are by their family and friends like Ethan, makes me so happy. And now Dr. Eichler introduced us to another amazing doctor, Dr. Rodan, who has helped give Ethan a better quality of life! I’m so happy these two doctors never gave up on Ethan and I’m so proud of my boy who continues to fight and has an incredible will to live. ❤️

A couple of days later, this mom wrote something else on Facebook that took my breath away . . .

Ethan ten years ago. Before wheelchairs, seizures, helmets, daily medications, and intrusive medical procedures. But some things haven’t changed: Ethan’s giggle, his funny jokes, his amazing personality, his hugs and kisses, his “I love you momma”, his ability to make any task fun, his will to defy the odds, his outlook on life, his ability to live in the moment. All the medical issues might be happening to Ethan, but he doesn’t let them define him or change him. Ethan is still Ethan, he’s my son, he’s my everything. Love you Super Mario boy!

— Jennifer

Thank you Jennifer for allowing me to share a little of Ethan’s story. Ethan is almost 13 now – such a handsome (almost) teenager!

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a love letter to CPNJ Horizon High School

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One of the highlights of my weekdays is when Jack’s bus pulls away.

It’s not that I don’t adore my boy, it’s just that I love letting go of my responsibilities and I know that Jack is off to have another great day at his school.

Jack’s been at CPNJ Horizon High School for five years and there hasn’t been a day since he started that I haven’t counted my blessings for finding that school.

The PG Chambers School was a hard void to fill. Not only had Jack received a great special education there, but they were there for our family as we came to terms with the fact that Jack’s disabilities were not going to magically dissolve. They held us up for years as we reached a place of acceptance.

When we were faced with finding a new placement for Jack, I was basket-case. I’d just wrapped my brain around being a special mom with a child, and suddenly I was walking into schools filled with young women and men with profound disabilities. It was a population that I didn’t know and it was overwhelming. Everything was bigger – bigger kids, bigger equipment, bigger changing tables.

Thankfully, the positive energy at the school quickly won us over. CPNJ Horizon High School is an incredible place.

Like a typical high school, Jack and his peers switch classrooms throughout the day – science, math, world languages, history, art, gym, yoga, karate. They learn everything from simple cooking and using household appliances like washing machines, to practicing making beds (Jack has yet to attempt those last few things at home, but maybe he will surprise me on Mother’s Day). When the kids are not in a classroom, you might find them out in the garden watering their veggies or on their adaptive playground or hanging out in the sensory room or maybe in the pool getting therapy (it’s been a while for JackO – they have a “3 strikes/you’re out” policy. You can guess what’s considered a “strike”;). There’s also a school store where Jack’s peers sell tasty snacks and clothing made by the students. Jack and his classmates also receive all the necessary physical therapy, speech therapy and occupational therapy seamlessly within their school day.

That’s just a typical day at CPNJ Horizon High School. Special days pop up often and Jack LOVES every second of these days. Each year CPNJ Horizon High School produces a play – filled with student actors — wheel chairs/walkers/speaking devices – nothing stops these kids. There are also costume parties, dance parties, sports days, movie days, even prom – that’s next Friday and I promise to share photos.

The greatest thing about the school isn’t really all of the activities, it’s the people behind the activities. The students are the stars, but it’s also the teachers, therapists, aids, nurses, custodial staff, cafeteria staff, administration. You walk into the school and it’s like walking into Disney World. It’s clean and beautiful and everyone has a smile on their face and a warm greeting at the ready. It’s a place where I am known simply as “Jack’s mom” and I answer to it easily.

So, when that bus pulls away each morning, my smile is not just about me being able to enjoy a few hours without diapers or medicine or responsibility. It’s about knowing that my boy is going to enjoy a great day. Thank you CPNJ Horizon High School. I love you;)

Love, Jess

If you would like to support Jack and his wonderful school, their annual Wheelin N Walkin Challenge is coming up soon. Every class walks/wheels proudly sharing their class banner. It’s a beautiful site to see. It also happens to be a fundraiser . . .

https://interland3.donorperfect.net/weblink/weblink.aspx?name=cpnj&id=71&cfifid=11

 

Giving Tuesday!

I’m guilty too. After laughing about how absurd it was to dash out from family — and dishes — to shop on Black Friday, I found myself sneaking on the computer first thing Monday to see what was on sale. Suddenly, I was in a frenzy. 50% off at JCrew, 25% off TVs at Best Buy! I forget everything I said, grabbed my credit card, and went nuts.

Giving Tuesday is the perfect opportunity to regroup and remember what the holiday season is really all about.

YES — this is the part where I talk you into pulling out your credit card and supporting something other than your family’s wardrobe or gaming systems or pot racks (Williams Sonoma also had a monster sale).

CPNJ Horizon High School has been a life saver for our family. Finding the right fit for Jack following our wonderful experience at The PG Chambers School was difficult. If you have a special needs child, you understand. If you don’t, I want you to take a moment and try to imagine.

School is always a source of concern for parents. We all want to feel that our child will be safe at school and have days filled with engaging experiences. When your child has limitations, you worry more. Dan and I needed to find a high school program that would support Jack’s needs while keeping his smile firmly intact. There are no schools for non-verbal boys with ALD and Epilepsy, who need help eating, toileting, and walking down the hall BUT who also what to have fun. We started our search with a huge list of requirements.

We wanted a school where Jack would receive physical therapy, occupational therapy and speech therapy during his school day. We wanted a school with an accessible playground, a therapy pool, an outdoor vegetable garden, art and music. We wanted Jack to be exposed to instruction in subjects like science and history. We wanted Jack to get to enjoy community trips, sports, plays and a prom.

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Prom 2015

 

We found all those things and more at CPNJ Horizon High School! Jack gets on the school bus every morning with a huge smile on his face and comes home seven hours later tired but happy.

Now it’s time to grab your credit card and make a donation. Let us know and you will receive a thank you note from Jack;-) AND we will inform elves from all faiths that you were extra good this year!

Love, Jess

 

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