lunch – the recap

In case you missed Wednesday’s post – CLICK HERE.

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seven hours of driving + a quick tour of campus + lunch with our girl = best day EVER!

It was just what we all needed. Seeing Anna in her element helped me let go of my nerves about how she’s doing. She’s thriving. Her classwork is interesting, she loves exploring Baltimore and has made many wonderful new friends (we got to meet several). Two hours of showing us around her new turf and a fun lunch and we were on our way. Saying goodbye was not easy, but we will see Anna for Parent’s Weekend in a couple of weeks and again in early November for Cousin Carlos’ Baptism. Thank goodness – we need more Anna time!

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Saying goodbye wasn’t easy.

Thank you for all the love and support this week. I heard from many moms that they’re feeling the same way and I’m not alone in the crazy drive/hug/lunch/hug/drive. I also heard from a few kids who shared that they appreciate crazy drive/hug/lunch/hug/drives! I sure hope Anna did, because I have a feeling this won’t be the only time I pull this stunt;)

Thank you Anna for being you and, thank you Jack and Mymom for being my partners in crime!!!!!!

Love, Jess

 

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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!!!!

happy birthday JackO!!

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What were you doing in your life when you turned 20?

I was living in Baltimore – a junior at Goucher College, studying art. I was trying to balance keeping up with my studies while enjoying every ounce of social time that I could. Dan was a student at Johns Hopkins and studying in Florence for the year. He was learning a new language and traveling throughout Europe with a very thin wallet and a EuroRail Pass.

When we started our family and I would dare to think about the future, like most parents, I imagined our children following a similar path to what Dan and I took. I didn’t think of if Jack and Anna would go to college, but where they would go. Whether they would study art or a language or the law. I hoped they would make good choices and stay out of too much trouble.

Having a special child, you need to learn how to shift your expectations and letting go of the college dream for Jack is something I did long ago, but with each birthday I’d be lying if I said I didn’t pause for a moment and think if only . . .

Instead of college, Jack greeted his 20th birthday still attending his high school and living at home. He requires assistance with everything from eating to showering to getting dressed to toileting to getting into bed. It’s not the life I ever imagined for our son, but as I celebrated his 20th birthday with him, all I kept thinking was how happy he is.

Jack partied all weekend long! Pool time with his buddies Peter and Orla, a party on our deck with close friends, and he even got to spend time with his oldest friend, Caleb. Today the party continued as he celebrated with his buddies at school. As I watched him enjoy all the attention, I realized there’s no need for if only just WOW! What a great life our boy is living!

Life at 20 can vary. It’s that age that straddles the end of childhood and beginning of adulthood. One thing that most people have in common at that age is that everything seems possible. Jack’s life is different than most, but I still believe that anything is possible. HAPPY BIRTHDAY JACKO!!

Love, Jess

Tupperware marked JACK ONLY;)

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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CHANGE

Dan and I are usually on the same page about things. Or, maybe not the same page, but at least on the same chapter. I think that’s how we’ve managed to hold things together for the last 25 years. We want the same things out of life. We treasure our family and friends and value experiences over things (although we like some of our things too). We’ve agreed on how and where we wanted to raise our kids and, when Jack got sick, we never fought about how we wanted to face those challenges. If you’ve ever made life and death decisions when it comes to your children, you know this is huge.

 

One thing where we differ completely is how we face CHANGE. Dan waits until the CHANGE is upon us and then calmly adapts and sometimes even politely welcomes it to the family. I frantically tear apart every side of of any pending CHANGE for months — thinking that if I fully understand every inch of it, I will somehow not give it any power. I know this sounds crazy, but I even consider the worst case scenario and visualize what it would feel like. I guess I’ve learned the hard way that sometimes the worst case scenario can happen.

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Crazy vs Calm

So that’s what I’ve been doing for the last six months. I’ve been spending a huge amount of time and energy focusing on all the CHANGES our family is facing – the biggest being Anna heading off to college. I’ve been picturing a painfully quiet house and the three of us non-college-bound Torreys spending all of our time just counting days between Anna visits.

My gephyrophobia (fear of bridges) was an unwelcome result of my growing anxiety. The good news is that it did encourage me to seek some outside help – books, meditation and a wonderful therapist who’s helped me more calmly face the CHANGES that are approaching and stop referring to myself using words like pathetic, weak, broken and nuts. A few weeks ago, I realized I was no longer waking up in the middle of the night or crying out of nowhere or not being able to cross a bridge without having a nervous breakdown.

Huge relief.

We’re now six weeks away from Anna heading off to college. We’ve gotten through prom and graduation and even Beach Week (Anna and her pals at the beach with nothing but their phones linking them to their parents — THAT was not an easy thing for this parent). Anna and I have been busy choosing first semester classes and important things like duvet covers and under-bed storage. Every time we start a new project I take a deep breath and remind myself that this is a big step, but Anna is ready. We are all ready.

I’ve got to say – there hasn’t been nearly the amount of tears that I had expected. I think Anna was even a little surprised that I managed an entire trip to Bed and Bath without so much as a quiet, “Please don’t goooooooooo!”

I know It’s going to be hard. Getting back into the car next month after dropping off Anna, with just our beautiful boy in the backseat, is going to feel strange. I’m sure I will go through my share of tissues for a while, but when I think about drop off now, mostly I’m so darn excited for our girl as she marches towards her dreams.

Now that I feel better, my focus is on Dan. I’m grateful that he doesn’t share my approach to facing CHANGE. I can’t imagine what it would be like if the two of us were freaking out for the last six months, but I hope he’s ready for all this. Is he prepared for his Jeopardy partner to be 200 miles away? Is he okay with watching sports with Jack and I barley pretending to be interested? What’s he going to do without live-in tech support?

Here I go. NOW I have something else to worry about. Dan. And then there is Jack . . .
My therapist will be happy to know she still has a loyal client.

Love, Jess

my brain is spinning

 

Sometimes months go by without much fanfare and then you hit a couple of weeks that you feel like life won’t stop long enough for you to catch your breath. That’s how us Torreys are feeling now. Our calendar is filled — parties (five this week alone – one at our house), Anna’s prom, Anna’s graduation, a birthday celebration for Jack at his school, Anna’s 18th birthday, my brother and beautiful sister-in-law are having a baby, Dan and I are even sneaking in a Dead & Company show this Friday. I’m pretty sure I’m too old for all this excitement, but at least I’m so busy that I’m not breaking down nearly as much as I’d anticipated.

Sitting down to write this post, I was hoping that my fingers on the keyboard would allow me to reflect on what I’m feeling. I thought for sure I would come up with some cleaver way of describing this point in our family’s journey. I would let it all out as I found the words – I would feel calmer.

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Instead, as I’m writing this my brain is spinning with things like – What am I gonna wear for graduation? Did I order enough bagels for brunch on Sunday? Crap – what the hell am I gonna do with the dogs that day? Is this allergies or am I coming down with a cold . . . or the flu . . . ? Where did I hide that present I got for Anna a few months ago? Can I reschedule my mammogram to next month? Did Anna remember to grab her cap and gown? 

Clearly this is not really working. I promise to try again in a day or two. Gotta run now and order more bagels and maybe another quiche.

Love, Jess

PS I am aware that this isn’t a “Torrey” specific post or a “special needs” specific post. It’s an “end of the school year when way too much $hit happens at the same time” post. Sooooooo many great things to celebrate, but it’s exhausting and it’s barely begun!!

 

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

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.

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)

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.

 

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!!