I like to surround myself with people smarter than I am. While some people might find it intimidating, I find it thrilling to witness brilliance and like the challenge of trying to blend in. And, if I know I’m really … Continue reading
Last Monday we were invited to be in the audience of the Impractical Jokers After Party – an after show where the Jokers sit around and talk about the latest episode.
When Uncle Matt shared that he had scored us tickets, Dan and I fought each other for who would tell Jack. Jack loves a lot of things – fresh cookies, 70s classic rock, cute girls, long walks on Block Island – but one of his absolute favorite things is the Impractical Jokers. I know when their show is on in the den, because I can hear Jack laughing from across the house. Jack, the kids who doesn’t say a word, can fill the house with his laughter when his buddies are on. That alone is enough to make us all fans of the show, but the truth is that our entire family is addicted to Impractical Jokers. It’s ridiculous. Humor made for immature teenage boys, but appreciated by a mature pre-med college girl, a finance guy and a middle-aged housewife.
It was a great day, but a little exhausting. The small audience was on folding chairs surrounded by wires and lights and cameras swinging from the ceiling. Imagine four hours of holding Jack down so that he wouldn’t pop out of his chair to race across the room to tackle (maybe even lick) his favorite celebrities. It would have been embarrassing, but I was even more worried about him taking down a few innocent bystanders and a load of expensive equipment.
Good news – Jack didn’t manage to pop out of his seat, nobody was hurt, all the fancy cameras were spared, and we had a great time!
Thank you Uncle Matt for making Jack’s dreams come tru — THAT is not a misspelling. Impractical Jokers in on truTV;)
Today Jack and I are heading down to a Clinical & Pharmaceutical Solutions through Analysis conference in Philadelphia to share our ALD story. Not too sure what to expect, but guessing that there won’t be too many cameras and that we shouldn’t walk around asking people, “Where’s Larry?”.
The After Party episode is scheduled to air on November 28. If they show the audience, look for us! We were on the far right in the second row. Jack had a ridiculous smile on his face the entire time, Dan was clapping so loudly that he was scolded (true story), and Matt and I were frantically holding down the boy.
I missed National Daughter’s Day. Just one day without looking at my Facebook feed, and when I returned I was bombarded with piles of sweet pictures of everyone’s daughters. I felt like crap. How could I have missed National Daughter’s Day?!?
I went instantly to my phone, searching for the cutest photo of me and my girl to show everyone that I’m NOT a bad mom and that my daughter is way better than everyone else’s. I narrowed it down to a few good shots and thought about FaceTiming Anna for her advice, before realizing that I was acting crazy. I don’t need a National Day to remember I have a daughter or to celebrate her — I do a pretty good job doing those things on my own.
Not sure about you, but I can’t keep up. It seems that every day there is another National Day/Month reminding us to celebrate, remember or eat.
There are some great ones:
October 5 — World Teacher’s Day
June — Pride Month
June 20 — World Refugee Day
September — Leukodystrophy Awareness Month (for us, every month is Leukodystrophy Awareness Month)
November 27 — Giving Tuesday
Those are good ones, but then there are these:
January 4 — National Spaghetti Day
June — Turkey Lover’s Month
October 5 — National Do Something Nice Day (we need a day for this?)
June 1 — National Donut Day
June 9 — National Rose Day (I didn’t see one for Sauvignon Blanc, but June 14 is National Bourbon Day and September 7 is National Beer Lover’s Day)
October 15 — Global Hand Washing Day
September 16 — Wife Appreciation Day (just one day?)
March 10 — National Landline Telephone Day
June 21 — National Selfie Day
April 10 — Be Kind to Lawyers Day
The problem with these holidays is they distracted from things that should truly be celebrated AND they have people scrambling to join in. If you don’t eat ice cream on July 15, you’re missing out. If you don’t post a cute picture of your daughter on National Daughter’s Day you are a bad mom. So we keep going. I’m all for celebrating, but don’t you think it’s getting a little ridiculous? When we celebrate everything from quiche (May 14) to paperclips (April 4) to watches (June 19) to kite flying (February 8) isn’t it taking away from living in the moment? What if I don’t want quiche on May 14th, but I’m really digging the clam chowder that’s in front of me (National Clam Chowder Day is February 25) — should I feel guilty?
Perhaps we should consider celebrating things we love every single day.
I am trying to stop, but now I can’t stop looking at the National Days list. I wondered what National Days corresponded with our birthdays.
Dan’s Birthday (March 2) — National Read Across America Day (Dan does like to read and he loves America).
Anna’s Birthday (June 28) — National Tapioca Day (and National Nude Day, but let’s focus on tapioca . . . not sure if Anna has ever tasted tapioca, but I bet she would like it).
Jack’s Birthday (August 5) — National Underwear Day (NOT National Diaper Day? There is a Diaper Need Awareness Week in September, which is a lovely, but we need a new day on the calendar just for 20-year-old men who wear diapers). August 5 is also National Sister Day (THAT is perfect!!!)
My Birthday (November 19) — World Toilet Day (if you’ve spent time with me and my small, ALD affected bladder you know that this makes perfect sense).
In case you’re wondering. Today, September 27th, is National Chocolate Milk Day Day. Who knew???
I don’t think I need to, but why not share some photos of my sweet daughter;)
Happy Belated Daughter’s Day!!!
In case you missed Wednesday’s post – CLICK HERE.
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!
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!!!!!!
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.
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.
To my friend from the nail salon – I owe you one. A lunch visit is a fine idea – NOTHING CRAZY ABOUT IT!!!!
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!
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!!!
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.”
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.
We drop off Banana tomorrow. Just another detour;)
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!!
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.
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.
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!!!
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.