Category Archives: this is ALD

lunch

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Several years ago, I was getting my nails done when I ran into a friend whose son had just left for college in Boston. We were chatting all about the excitement of drop-off and what it felt like getting home one kid down. She admitted that the transition had left her feeling a little lost and that she was planning to head up the next day to take her son out to lunch, “What? For lunch? In Boston?”

Maplewood to Boston is a 4 1/2 hour drive. I walked away from the conversation relieved that I would never be THAT crazy.

Jack, Mymom and I are driving to Baltimore to see Anna tomorrow. For lunch.

We’ve been busy trying to get into the rhythm of our new nest. I’m feeling a little less lost than I had expected, but it’s not easy. As long as I stay busy I’m okay, but when the chaos of life quiets, I get teary. The result is that our house has never been as clean and I seem to be very on top of my my TO DO list and piles of paperwork. I am looking for anything that can distract me from the quiet. Things like writing and walking are a little harder to do – too much time to think about how much I miss our girl. It’s better for me to stay in motion.

FaceTime is a luxury that I hadn’t expected. I’m trying not to over-do it, but at least once a day we sit down for our call.

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Thirty years ago, there were two pay phones at the end of my dorm hallway. My parents would call on Sunday mornings at 10:00 am. It wasn’t just their chance to catch up, but it was assurance that I was awake at 10:00 am on a Sunday (As soon as I got off the phone, I would crawl back into bed). Within a few months, I got a phone in my dorm room. Still, the phone calls from home were limited. It’s not that my folks weren’t eager to speak with me, but times were different. 

There is a lot of talk among my circle of friends — maybe we shouldn’t call too much. We need to let our kids fly. They need their independence. We need our independence.

Perhaps this generation is too in touch, but I don’t care. I love chatting with Anna as she’s walking across campus in the sticky Baltimore heat. I love that I am starting to learn the names of her new pals and a little about her classes. AND, I love that Jack is able to not just hear his sister, but see her. This transition has been hard for all of us, but for Jack it’s been particularly difficult. 

Although we’d been preparing for months for this new reality, Jack seems to be constantly waiting for his favorite person to walk into the room. When her picture appears on the iPhone  screen, he lights up. They spend a few minutes making their silly faces as Banana tells her Booger how much she misses him. Parent’s Weekend is just a couple of weeks away, but we can’t wait.

So . . . we’re getting in the car tomorrow morning and driving 4 hours to take our Anna out for lunch. If anyone asks, I tell them that it’s because Mymom hasn’t seen Anna in a few months and the Jack really NEEDS a visit. That’s not completely true. It will be a lot of driving for a short visit, but I’ve never been as excited for a day trip in my life.

Love, Jess

To my friend from the nail salon – I owe you one. A lunch visit is a fine idea – NOTHING CRAZY ABOUT IT!!!!

my anchor

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How’d college drop-off go?

As soon as we left the house, I grabbed Anna’s hand and said, “It took us eighteen years to prepare for this drive.” I was bawling before we left Clinton Avenue.

It was a long two days of loading and unloading and setting up and last minute shopping and crying, before we kissed Anna good-bye and headed home to our new chapter. The house seems a little too quiet, but I’m not as sad as I’d expected. Sad would mean that I’m waking up in the middle of the night crying and sitting in Anna’s room counting the days until she comes home for Thanksgiving break (81 – maybe I am counting a little, but I’m staying clear of her room). I’m not sad, instead I’d describe it as feeling lost.

I’m getting along fine and then something will hit me. The empty stool at the kitchen island or the missing pile of shoes at the front door. I’m missing that fight in the morning when there’s no milk for my coffee because Anna and her friends had late-night bowls of cereal while watching Gilmore Girls. I miss Anna’s boyfriend, Will, racing into our house and wrestling a hug out of Jack. I miss the dirty dishes in the sink. I keep wondering when Anna will be home for dinner before remembering that she won’t be home for three months.

I also miss the chaos of being an everyday parent of a typical kid.

Anna has been our anchor to typical parenting. She’s linked us to her typical schools with their typical sports and typical classes. She’s had piles of typical friends that filled our house with typical snacks and typical teenage drama. She allowed us to get distracted from IEPs and changing G-tubes, because we needed to worry about curfews and grades and other typical stuff.

Being Jack’s mother is my honor and I love (almost) every ounce of parenting him, but it’s different. It’s not the parenting that you read about in novels or watch in movies. It’s not the parenting that MOST of my friends have experienced. It’s not the same parenting that raised me or raised Dan. I pride myself in not needing to be like everyone else, but it has been nice to be part of the conversation when people are talking about t-ball, middle school drama, first boyfriends, driving tests, and college essays.

I’m scared that without my anchor I will be left adrift.

The biggest accomplishments of my life have been as a mother. I am not pretending that I’ve been a perfect parent. There’s a long list of mistakes I’ve made along the way (things I wish I had taken more seriously – things that I did that make me cringe) but, when I look at our two children, I’m so proud of what I helped to create. I’ve grown to embrace being part of Jack’s beautiful, complicated life, and I’ve also loved being anchored to the day-to-day typical parenting world thanks to Anna.

I know that parenting isn’t over when kids head off to school or go to work or start their own families. I just hurt my toe (long story that means I will never go into Trader Joe’s again without wearing boots), and the first person I called was my mother. The last few days Anna has reached out to share stories about her first days on campus. I know I will be part of Anna’s life forever, but my anchor is now 156 miles away. She will no longer share every detail of her experiences. She will make friends that I will never meet and do things that I haven’t signed off on or understand. She is starting her new life. I’ll always be part of it, but a smaller part than I was a week ago.

I’m trying to get my bearings and am really trying not to overdo the calling/texting/face-timing. I want to give Anna space to fly, but it’s hard not to hear her voice around the house, “Mooommmmmm, where’s my backpack/curling iron/charger?” “Mooommmmmmm, what’s for dinner?!?” “Mooommmm, can I take the car?!?”

Jack is doing a great job of keeping me distracted. As I’m writing this (on the couch, with my foot elevated and covered with a pile of ice), Jack is sitting next to me laughing at his Impractical Jokers. Jack might not be “typical”, but he sure is great company!
Love, Jess

PS Anna isn’t just a pleasure to parent, she’s the best friend I could ever ask for. Maybe I am a little sad. Just a little. Enjoy every second Blue Jay Banana, but don’t forget to FaceTime!!!

the labyrinth

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Just getting home from Block Island. It was a quiet stay this year and we loved having solo time with PopPop and Sue and getting to spend time just the four of us. Have I mentioned that Anna is leaving for college soon?

On our second day we went to Block Island’s Labyrinth. There was something about quietly walking a labyrinth that seemed like the perfect activity for our family as we prepare for a ton of change. Years ago I photographed a labyrinth for a local paper. I Googled the word before I left for the shoot, not really understanding the particulars of the definition. The three stages of the walk are releasing, receiving and returning. As you follow the path within, you are to shed your thoughts, quiet your mind and open your heart. While at the center, you meditate or pray, allowing yourself to receive guidance. Then you follow the same path out, thinking more clearly and feeling empowered. The whole thing sounded kinda cheesy, but after the shoot, I gave it a try and I found it more powerful than I’d expected. I felt calm and at peace. Last week I was looking for some calm and peace and wanted to share the experience with my family.

I encouraged them to take it seriously, “No talking. Just walk. Take it all in. Follow the path and let your thoughts wander.”

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Knowing I’m a little fragile these days, my family hid their rolling eyes and agreed. Anna led the way, trying to help her brother along. It was quiet and beautiful. There are no decisions to be made when walking a labyrinth. It winds around, but there is only one way in and you follow the same path out. A needed departure from the endless decisions we make every day. One step at a time we all moved forward. Within a minute, Jack got distracted, let go of his sister’s hand and started making his own path. I laughed at the image of Dan, Anna and I staying the course as our boy did his own thing. Very much our family, no matter the circumstances. We all stayed silent and I started to really get into it – I felt more relaxed than I had in a long time, enjoying the rhythm of my steps on the sandy path.

Half-way through, the spell was abruptly broken. Dan yelled, “Crap – Jack STOPPPPP!”

I looked up and saw Dad run after Jack as he bolted down the hill toward the street. Just a few moments of no one watching and he had managed to plan an escape. Block Island is not known for it’s traffic, but Jack heading to Corn Neck Road without assistance was enough to have us all in a panic. I imagined a pile of mopeds piled up on our boy.

Just when you think everything is perfect, Jack likes to shake things up for us.

Thank goodness for the stone wall at the end of the path. Jack reached the bottom of the path in record time, but took one look at the wall and the ladder to climb to the other side and gave up his plan. Too much work for our boy. He turned around to the arms of his dad. He and Dan walked back up the hill with his mischievous smile telling us all he knew exactly what he was doing. The boys watched from a stone bench as their girls finished up the Labyrinth. Jack had given us all a little detour from our relaxation, but our family is used to detours.

Love, Jess

We drop off Banana tomorrow. Just another detour;)

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a table full of girls

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Over the weekend we attended another graduation party celebrating a dear friend of Anna. They’ve known each other since they were tiny, and she has spent so much time with our family, that I consider her to be another daughter. Dan loves her too and Jack would think of her as a sister, if he didn’t have such a massive crush on her.

She’s not alone. Jack has crushes on all of Anna’s girlfriends. And these girls are wonderful to our boy. When they come to our house, the first thing they do when they walk in our door is ask, “Where’s Jack?” and then seek him out to give him a smooch. Some days I find Jack in the middle of the sofa surrounded by beautiful teenage girls watching Gilmore Girls or lose track of him to discover that he’s made his way up to Anna’s room to listen to some girlie gossip.

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Jack and some of the gals a few years ago.

Most of Anna’s circle of friends she’s known since diaper days. They knew Anna when she was a chubby little girl with a crooked smile. They knew our first house over on Jefferson Avenue and they knew Dan and I before we had gray hair. These kids also knew our family before ALD came screeching into our lives. They knew Jack when he was just a year ahead of them in school, loved to ride his bike and was one of the MCs in the school talent show (the only video we have where we can hear him speaking . . . ).

I realized while watching the girls at the party that I’m not just saying goodbye to Anna as she heads out to college — I’m saying goodbye to her buddies too. And, so is Jack.

I know Anna will find a wonderful new cluster of friends at college. She has good taste in friends and seems to always be surrounded by a funny, smart, kind assortment of people. I’m sure she will share a lot about her family with these new friends. About her loud Dad who graduated from Hopkins and loves history, music, lacrosse and the Yankees. She will undoubtedly share stories of her mother who insists on family dinners, needs constant help with wardrobe advice and spelling, and drinks a little more white wine than she should. And, I’m sure Anna’s new friends will hear a ton about her brother – the person who she adores more than anyone on the planet. They will hear what happened when Anna was only six-years-old and how it shaped so much of who she is now and what she longs to do with her life. Her new friends will see pictures of all of us and maybe even meet us over the next few years, but they will never know the whole story. They will never really know Jack the way that Anna’s childhood friends do.

I know that some of the relationships Anna has with her childhood crew will ebb and flow for a while. They are scattering all over the US for the next four years. It will be hard, but I really hope that they all make an effort to meet up again whenever they can. I’m lucky to still be close with a few of my childhood friends and it’s amazing how they know me on a level that newer friends just can’t reach. There’s something magical about childhood friends.

The graduation party was wonderful — good food, some white wine for me, and a lot of familiar faces. As I sat inside to escape the heat, I watched Jack through a large picture window. He was sitting next to Anna at a table full of some of his favorite girls. He had a grin from ear to ear. I know there will be more parties and tables full of these girls, but they will be a further apart now that many of the kids are heading off. I want to make sure that I savor them while I can and make sure JackO gets to enjoy as much girl time as possible before the summer comes to a close.

Love, Jess

Tupperware marked JACK ONLY;)

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Mail isn’t what it used to be. Most days it’s just a pile of catalogs and junk. I sometimes go days without even glancing at my mailbox, but lately I’ve been checking it twice a day. I’ve felt like a kid at camp waiting for a care package.

Yesterday my care package arrived! It wasn’t a big box — just a slim envelop from the NJ Department of Health – our brand new NJ Medicinal Marijuana Program cards!!!

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Jack’s on plenty of medications – Hydrocortisone, Keppra, Fludrocortisone. He’s also had prescriptions for Ativan, Oxcycodone, and many others. Any time we need a refill, it’s easy. Drugs in this country are usually just a phone call and a quick trip to CVS away. Within an hour, we can have a pile of  medicine (many FAR more dangerous than marijuana) in our hands. Not so with the one medication that has truly transformed Jack’s life.

Not sure if you remember, but three years ago Jack started hopping (click here for that story). Sounds cute, right? It wasn’t. It was like he was stuttering as he walked. It made walking across a room tedious and a walk down the street nearly impossible. His PTs and OTs worked tirelessly. We all tried a variety of techniques and nothing seemed to work. Then I stumbled onto some research about how marijuana can help with spasticity (what we suspected was the underlying cause for Jack’s hopping). You can legally buy some marijuana/hemp products in most states (that are high in CBD – the non-intoxicating compound in marijuana and low in THC – the part of marijuana that makes you high), and I thought it was worth a shot. Before introducing anything to Jack’s medication list, I always check with his neurologist. I felt a little strange bringing up such an “alternative medication” for my 16-year-old. She quietly listened to me ramble on about my research, starting every sentence with, “Don’t judge and please don’t think I’m crazy.” She assured me that she wasn’t judging and brought in her colleague who was more knowledgeable about the benefits marijuana. Again, I told Jack’s story and filled him in on my research. He met Jack, looked over his chart and said, “Don’t buy anything online. I think Jack needs some THC and to be on Medicinal Marijuana. Let’s get him in the program.”

Seemed so easy — it wasn’t.

It took six months, piles of paperwork. loads of money and three doctors (including a psychiatrist for our non-verbal son) before getting our original cards. By the time we were able to go to the medicinal marijuana dispensary we were super excited to get started, but quickly learned our waiting wasn’t over. I needed to learn how to administer the herb to our boy. All they sell in NJ is the flower. The flower is the seed bearing part of the plant, including the buds that are smoked. Jack can’t smoke. I had to learn how to turn that flower into a butter and then into an edible (Jack’s favorite is a chocolate chip cookie). Even our wonderful doctor who had written the prescription, had little advice for us. It took some time and a few wasted batches, but we finally figured it out the right recipe.

It’s been a life changer. Jack’s walking better, sleeping better and all around more focused (odd because pot makes me anything but focused – not that I’ve ever experimented with marijuana. That would be illegal and immoral and just plan old bad). Two years in and we have our rhythm. Once every three weeks I infuse butter, bake, and fill the large Tupperware container in the fridge marked JACK ONLY — it is more work that it should be, but we’re all set.

Every 60 days we do need to get a new certification from our doctor. We’re grateful that our doctor doesn’t require a $200 visit every time. She seems to be one of the few people that understands that Jack is not going to grow out of his challenges (don’t worry — we do see her at least twice a year).

Everything has been going great until a few weeks ago when we received an email that we needed to re-register with the NJ Department of Health. More paperwork, more photos, more money and more proof that Jack still has spasticity.

ARE YOU KIDDING ME?

Governor Phil Murphy spent a whole lot of time running for office talking about his commitment to not just opening up NJ’s Medicinal Marijuana Program to include things like oils and edibles, but making marijuana completely legal in NJ. I do support the legalization of recreational marijuana and could go on and on about the benefits to the NJ economy and that marijuana is far safer than alcohol or nicotine or half the drugs we all have in our medicine cabinets, but I want to focus more on those individuals – like Jack –  who are provided more comfort, less pain and better quality of life because of their access to medicinal marijuana. All I really want to say is – MAKE IT EASIER FOR PATIENTS. PLEASE TELL ME THIS IS THE LAST TIME I NEED TO REAPPLY FOR THESE SILLY CARDS and if you can’t do that, at least HURRY UP WITH THE EDIBLES!

I am tired of infusing and baking and having my house smell like a fraternity. I’m also looking forward knowing exactly what dose I’m giving my son without needing to test it myself (which I would never do because THAT is illegal and immoral and plan old bad). I’m also tired of any paperwork that involves proving that Jack is sick enough/disabled enough to do anything/to take anything that will help him enjoy the best quality of life possible.

Our new cards expire July 2020. Fingers crossed that changes won’t take that long.

For more about our cannabis journey click here.

Love, Jess

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welcome to the world beautiful boy!

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I was seven when my younger brother Phil was born. It was before the days that hospitals allowed siblings to visit the maternity ward, so the first time I met my brother was when my mother walked into the house, holding him wrapped up like the most magical present I’d ever seen. My very own living doll.

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I loved having a little brother who I could dress up and cuddle, but as we got older the seven years between us meant that we were always at different stages. When I was in high school, Phil was the nosy kid who always seemed to ruin the fun. And when he was busy enjoying his own high school angst, I was the older sister acting like a lame extra parent. Phil was still in college when I got married and barely out when Dan and I started a family. He was living the single life, as a creative sole, when I was busy raising kids and then dealing with our ALD journey/nightmare. I think Phil and I both spent much of the last twenty years loving each other, but not really getting each other.

Last week, that baby that I held 41 years ago welcomed his own baby into the world, Carlos Michael Cappello. Not only am I thrilled to have another baby in the family, but when I watched my brother hold his son, I realized that for the first time in a long time, our paths are overlapping.

Phil’s beautiful wife, Kate, bravely suffered through 27 hours of labor before needing a c-section. A cruel introduction to parenthood. Learning from the get-go that no matter how much you plan, kids have a way of directing things. And, despite their exhaustion, both my brother and sister-in-law quickly discovered that, no matter what complications your kid puts you through, you push on with a smile, because you would do anything for your child.

Little Carlito is the most beautiful baby. He is strong and healthy and I swear he was smiling yesterday while his parents were holding him. He knows he’s in great hands. Phil and Kate are already amazing parents.

Welcome to the world beautiful boy! And, welcome to parenthood my brother. May you enjoy every beautiful, messy moment. And, if you ever need anything I am here for you. I get you;)

Love, Aunt Jess

 

 

If your wondering if spending time with my new nephew made me start thinking about Jack and ALD and if onlys. Sure. As I held Carlito with Jack by my side, I couldn’t help but think of all the hopes and dreams we had for our boy when we first brought him into the world. How, almost twenty years later, many of those dreams are out of reach. But, then I quickly brought myself back to where we are and who Jack is and how we can’t focus on the if onlys. If onlys don’t really get you too far. All they really do is make you blind to what’s in front of you. And, what’s in front of us is a new, beautiful boy who we can hold and dress up and cuddle and then hand back to his parents when he needs a diaper change.

Besides, our biggest goal for our boy was for him to be happy and who’s happier than Jack?

Anna is missing from the photos because she’s at BEACH WEEK with her buddies. allowing her to go was not by proudest moment as a parent, but so far she is safe and sound and hasn’t gotten into too much trouble. She can’t wait to meet Carlito!

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!!