Monthly Archives: May 2018

mixed emotions, a banquet, and a birthday – GO COUGARS!

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I’ve had mixed emotions anticipating this spring. So many things to celebrate, but each celebration highlights that we’re closing a chapter. There have been a lot of “lasts” lately and tonight is another one — the last Columbia Girls Lacrosse Banquet.

I’m going to be honest. If you’ve had kids who’ve played sports, you might not agree (maybe I’m a terrible mom), but I spent many years dreading the lacrosse season. It’s not that I don’t enjoy watching the sport, it’s that the season seems to have us spectators either wrapped in blankets, freezing OR trying desperately to find a sliver of shade to protect us from the hot sun. I also would look at the lacrosse schedule at the beginning of each season and wonder why on earth we couldn’t just play neighboring towns – instead each year we needed to shlep all around northern NJ to sit in the freezing cold or scorching heat.

Then, there’s the driving. I must have inherited it from Mymom. She HATED being carpool mom. My mother once said to the headmistress of my elementary school, “What do you mean you removed the bike rack because of all the snow this year? It’s going to take Jesse an hour to get to school without her bike.” I haven’t avoided getting behind the wheel as much as she did, but those after-practice pick-ups that hit right in the middle of dinnertime made me crazy.

For years I would use the “Jack excuse”. My friends helped out with the practice pick-ups and Jack would be used to make an early exit or avoid games altogether. “It’s too cold for him.” “It’s way too hot for my boy.” “Poor Jack can’t get much sun with all his medication.”

Luckily Dan was the opposite. He didn’t seem to be bothered by the heat or the cold or the miles. Not only did he coach Anna’s team for years, but he would rearrange business trips so that he wouldn’t miss games. And, when he was there, everyone knew. “Loud Dan” isn’t his nickname for nothing!

As this lacrosse season approached, I changed my tune and became full-blow LAX MOM. I didn’t want to miss a minute of the season – the last season. I kept blankets and extra jackets in the car and, as the heat arrived, I had an umbrella to protect Jacko’s skin from the sun. I picked up Jack early from school so that we wouldn’t miss the first face-off of games and used WAZE to get us around towns I’d never heard of. The cold, the heat – nothing really bothered me as long as I could watch 22 on the field.

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I’m so proud of Banana. I love watching her bound down the field with the same determination she has for all things. I love saying “She gets all her skills from her mama.” And, I love that everyone laughs because they know that it couldn’t be farther from the truth. Dan and I made her, but Anna is her own girl . . . young woman AND she is amazing.

Columbia Girls Lacrosse has had a great season and I’m so glad I didn’t miss it. They might not have the best record in NJ, but they have heart and they kicked plenty of a$$ this year – go COUGARS!!!

Today is also Jack’s 11th transplant birthday. Happy Birthday JackO!! We are thrilled for him, but letting this day be about his sister – his favorite athlete and human;)

Love, LAX MOM (last day)

PS Mymom didn’t love driving us around, but she always had homemade bread with fresh butter and cinnamon-sugar waiting for us when we got home from our walks/bikerides.

 

 

when life imitates life

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Sometimes something happens at 26 Clinton Avenue that is so crazy that I won’t believe it if I didn’t witness it with my own eyes – or hear it with my own ears – or not hear it with my own ears.

Our house is wired with speakers attached to an elaborate sound system – four zones, SiriusXM, Pandora, Apple Music, long playlists — super fancy, but last year we got an Amazon Echo and have found that it quickly became our go-to thing for music, facts, news, etc. It’s almost like she’s become a member of our family.

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Alexa keeps us company as we eat our dinner, answering important questions like “What’s the weather gonna be tomorrow? and “What year did so-and-so win the World Series?” and “How many miles is it to New Orleans?”. She also plays us music — appreciating the JackO likes One Direction and Justin Beaver, I need some Son Volt and Cat Stevens, Anna is too cool to listen to music in front of the family, and Dan demands to hear Cake and Petty and Stones and My Morning Jacket and Bob Marley and … Alexa also keeps JackO entertained as he sits on the potty for longer than I will admit and I love that she’s willing to play me my podcasts while I’m folding the laundry or doing paperwork.

Alexa is so important to us that we make sure she joins us when we’re outside — we need music/podcasts/information with us while we garden or eat dinner al fresco. Last weekend we all enjoyed some time outside. Alexa seemed to have fun, but when I cleaned up at the end of the night, I got distracted. Somehow Alexa ended up spending the night out on the deck. In the rain.

When I found her the next morning I apologized, but she didn’t seem to hear me so I took her inside and dried her off. I apologized again, but she was still ignoring me. I got frustrated, unplugged her and walked away. I assumed that if we waited it out a couple of days, she would dry out and things would be fine. I hadn’t mentioned my mistake to anyone, figuring there was no need to share my gaffe, but yesterday I got caught. Dan got home from work and was asking Alexa to play the Grateful Dead. When she didn’t answer, he walked over to her, saw she was unplugged and turned to look at me. I had to admit that I had left her outside. Alone. Overnight. In the rain.

I tried to be optimistic, “I’m sure if I reboot her, she will come back to life.” So, I plugged her back in and went through the process of reinstalling her software. An orange ring spun on the top of Alexa and kept spinning like she was really trying. After a few minutes the ring suddenly turned blue – she was back!

Dan and I were so excited as we welcomed her back to the family, “Alexa, are you okay?” She spun and spun as if she could hear, but said nothing.

“Alexa, can you hear me?” Again that blue ring spun around but nothing came out of her.

“Alexa, can you hear me now?” Nothing.

We went on like this for a few minutes and then I looked back at the app on my phone and I could see our conversation. Apparently Alexa could hear us and was answering us — silently.

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Are you kidding me?!?!? JackO – looks like you aren’t the only silent member of the family anymore.

Love, Your Friends at 26 Clinton Avenue – including our silent Alexa

PS I promise that I have never left the kids outside overnight. There was one night I forgot about the dogs, but that wasn’t really my fault and it wasn’t raining;)

PPS As I am preparing to hit send on this post, Alexa is in the news. Apparently she is listening to everyone and getting in a fair amount of trouble!!

 

 

THIS is ALD #21 — Jack M.

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I have known Kerry for many years through social media. We both have sons named Jack and we both know how ALD can effect every inch of every life in an entire family – even when it only takes over one body.

Thank you Kerry for sharing Jack’s story.

THIS is ALD — Jack M.

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Jack was 8-years-old when our family was at my older son’s boot camp graduation at Parris Island. Jack suffered what look like a seizure — months later we figured out it was caused by an adrenal crisis. He was taken from Parris Island to the hospital and then we took him home to Miami the next day. The doctors refused to test for anything specific, simply saying he had Epilepsy. It took several months, and lots of doctors, before Jack was diagnosed with ALD and adrenal insufficiency.

Although the doctors in Miami told us there was no hope, I put Jack on a plane and went to University of Minnesota Hospital (a leader in ALD research and treatment) to see if he would qualify for a bone marrow transplant. They agreed and Jack was transplanted using the precious cells from his brother, the Marine.

After transplant, Jack continued to decline because the cells needed time to get to where they were needed. I’ve homeschooled him his entire life and have been able to adapt all curriculum to where he is at any given time. It also has allowed us to be flexible while we continued to pursue other treatments for him. Over the next several years I took him to North Carolina to see a rare disease doctors and several other states for answers which I eventually figured out on my own. Jack’s disease finally stopped progressing 2 years post-transplant, and he was left requiring full-time care. I am his full-time caregiver. Respiratory issues and adrenal issues keep me on my feet.

ALD has not been the only complication our family has faced. We recently went through hurricane Irma and YES we are still fighting the insurance company to repair the house so we can safely live here. Three times over the last year I have had to travel to take care of my mother who has heart condition and breast cancer. All of this has been the worst case scenario — like the board game, except I don’t hold any cards. I just do whatever is needed at the moment. One step forward, two steps back. I try to just keep pushing forward. My Marine son says I would have made a great Marine — I have been through The Crucible and back.

Since my Jack’s diagnosis and transplant there have been 5 babies born in our family and one expected this July — my grandchildren. All of my grandchildren are healthy. Jack’s ALD was a spontaneous mutation (meaning it was not inherited). ALD is now part of the newborn screening panel in Florida. I often imagine if ALD had been part of the panel when Jack was born – so much of this pain could have been avoided.

So much has happened since ALD struck our family and it’s effected a lot of our lives. I have had children graduate from college numerous times and missed their graduations. I’ve missed grand babies being born. Everything is on the back burner while I care for my son 24/7. It’s also changed the lives of my seven other children. My 23-year-old is my constant help. My 29-year old Marine just receive his third degree from college in bio medical and he also runs a tutoring company that caters to Veterans and hopes to raise money for research to develop an auto injector (to administer steroids) for those with Addison’s Disease. All seven of Jack’s siblings have been contributing to ALD awareness. They have learned first hand how ALD can effect a family. My ex-husband has moved on since Jack’s diagnosis. He is remarried and started a new family and we have no contact. Another dirty side of the storm no one talks about. 

Jack is now 18. When Jack is doing well he has a good quality of life — bowling and baseball, he has even played soccer in his wheelchair. When he’s not well I count the moments and do everything I can to keep him out of the hospital and give him comfort. Sometimes I question putting him through chemo and transplant, but I know I tried and did everything possible at each step of our journey.  Jack is still here. He is still fighting and I will fight with him. I know the Lord has the last say. 

— Kerry

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Kerry is also a children’s book writer and has been a very active volunteer with political campaigns, adding to the bone marrow registry and raising awareness for ALD and newborn screening.

Thank you Kerry for sharing Jack’s story and helping the ALD community spread the word about our not-so-rare disease.

Day +4003 (not a great day)

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Day +4004 . . .

4004 days since Jack’s transplant. Almost 11 years. Over half of Jack’s life.

Our family lives our lives marking everything with before or after ALD barged into our world. Don’t read that last sentence and feel sorry for us. Most days after ALD are just fine, and many days after have been wonderful.

We’ve created lives that work – thanks to smiles and our duct tape. We have our Anna’s sweet disposition and busy schedule keeping us on our toes and filling our dinner-time with stories. And, we have Jack’s mood that sets the tone for everything we do. Sometimes I feel like I float between two worlds. Attending an IEP meeting in the morning where we discuss things like “teeth brushing” and “using a fork” as long-term goals and then head off to watch Anna run down a lacrosse field effortlessly to score several goals. Most days I go back and forth seamlessly, enjoying each of my children and their lives.

Yesterday was NOT one of those days.

Yesterday started shitty. I won’t go into too much detail, but just imagine cleaning up a nineteen-year-old and his bed after what I’m assuming was a mexican lunch the day before. I was scrambling to get through that mess, when I noticed that dear Anna had managed to switch the laundry the night before WITHOUT switching anything that did not belong to her. This was followed by a lot of yelling up to her bedroom (those stairs are too steep for me), “This is not a hotel!! You need to do your part around here! You are NOT in college yet young lady!”.

I was already fuming as Jack and I then went through the rest of our morning routine as quickly as possible so that we could head off to the Social Security Administration. It seems that we had been “randomly been selected” to come in for a follow-up interview to determine if Jack still qualifies for Social Security. This was our fifth visit and third time being “randomly selected” in less than two years.

 

three hours in.

Flash forward five hours —— I was crying uncontrollably to the young woman across the plexi-glass, “How many times do I need to tell you guys that my son is disabled? We have countless letters from doctors and teachers. He is not going to get better! He will never have a job. Never! His disease has stolen any hope of a normal life where he can work and live independently and support himself.”

I wasn’t finished, “There might be people in that waiting-room over there that are trying to take advantage of the system. I assure you that Jack is NOT one of them! Wanna look up ALD on Google? Wanna spend a day with Jack and tell me that there’s a chance of him NOT qualifying for Social Security? Why are you wasting your time and tax dollars on cases like ours?” and “No – our address hasn’t changed. No – our phone number hasn’t changed. No – Jack does not have any new pay-stubs to share with you. Why the hell couldn’t we have answered these questions over the phone? WHAT the hell is wrong with you people?!?”

After my rant, she apologized, but all I could do was help Jack off his seat, grab the paperwork (where she’d added her direct number “just in case we get another letter”) and walked out the door without a word.

I drove home yelling at the world and then laughing with Jack who I could see in the rearview mirror making funny faces at me. The wait, the questions – none of that seemed to bother our boy, but his crazy mother he sure found hysterical.

I realized half way home that I’d forgotten that I was teaching an art class at 2:30. It was 2:00 and we hadn’t eaten since breakfast (Social Secuirty rules include: no eating, no drinking, no phone calls, and go to the bathroom at your own risk – you miss your number? too bad). I called my boss and explained that I would be late and I would be bringing a special guest to my class.

I usually love the opportunity to introduce Jack to children, but I was running so late that I was too worried about finishing our project to do much of an introduction. My kindergardeners kept looking up from their Blue Dog inspired paintings to check out Jack and ask things like, “If he can’t speak how do you know what he wants for dinner?” and “What’s with those funny leg things he’s wearing?” and “Why is he trying to eat the craypas?”

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I did my best to answer their questions with a lite, age appropriate spin, but at one point I got so distracted that I rammed my toe against a table. It was like The Powers that Be were having a lot of fun torturing me. I’ve never been happier to see parents arrive for pick-up.

Our last event of the day was Anna’s lacrosse game. Swinging back to a fun event seemed like a great idea, but after ten minutes of watching the Cougars, a storm rolled in and we needed to run (Jack hopped) to the car to drive home in the wicked weather. Jack and I walked into the house drenched.

I went through the motions of dinner, bath, bed, just wanting the day to be over. I was starting to breathe again, even laughing with Dan and Anna about the events of the day, but the crappy day was not quite over.

As I got into bed, I felt a sharp pain. My toenail had fallen off.

Love, Jess

Today is a much better day. No sad looks if you see me at the grocery store. I promise I am back to being cheery mom/wife/friend/teacher/writer. Day 4003 stunk, but most days after ALD are just fine. 4004 days and counting!!

 

 

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