Day 14 with a broken rib. Although I’m healing, I’m still not able to do much for Jack these days. Showering, changing, toileting, medicating, feeding – none of these things are particularly difficult, but there’s the Jack factor. Jack moves and grabs and hugs – it’s the hugs that scare me most – they’re magical, but I worry they could be dangerous!!
Some samples of the (potentially dangerous) Jack HUG!!!!!
So, I haven’t been doing much other than watching bad tv, studying for the National Counselors Exam, and counting my blessings that Jack has an amazing team of people who have stepped up to help out.
Dan has taken on the brunt of the responsibilities, but he has a job. Anna is home now for a few days – yahoo (she had offered to come home sooner, but she had a cold – if you’ve ever broken a rib, you will understand that a cold is terrifying). Luckily, Jack also has an arsenal of other mothers, and they’ve been amazing! Maria, Monica, and Lilly have all been keeping Jack entertained, fed and clean. And, we have a new addition – Natalie. We’ve known Nat since she was a tiny thing. She’s one of Anna’s best friends and she’s now a nurse. She offered to bring her skills and hang with our boy as needed. Lucky Jack – lucky us!
So, I continue to sit, watch bad tv, study for the National Counselors Exam, and count my blessings.
Thanks everyone for being me! I look forward to being able to care for our boy again (and enjoy one of Jack’s magical/dangerous hugs), but it sure is nice to know that Jack has a team who is ready, willing and able to help!!!
The dogs and I have been enjoying a new daily walk for a couple of weeks. Half the walk is through our neighborhood and then we slip into the woods for a while. Not only is it beautiful, but it’s great for the dogs to get a change of scene full of new smells and it’s good for me. My feet sometimes get a little lost. The only way I can explain it is that I don’t really feel them. They do what they need to do most of the time, but sometimes they need a little attention. Steps, curbs, crowds, rocks – they can all be challenges. I’ve learned that if I focus on them and where they are headed, I’m fine. A mile in the woods is good for me, my soul, my brain, and my feet.
Yesterday the dogs and I had a lovely walk (for a while). The crisp air and autumn leaves were beautiful. We walked out of the woods and turned the corner to head back into our neighborhood when suddenly it was like I was lifted into the air. I knew I was falling but couldn’t really figure out how to safely land – my feet seemed tangled. I hit the asphalt on my right shoulder and face.
Adrenaline helped me get off the ground and treats helped me lure the dogs to come back to me. I tasted blood and worried I may have broken a tooth and was relieved that they were all intact. Then I checked to make sure my legs were okay. Except for scrapped knees, they were fine. I found my phone in the leaves, dialed Dan’s number and started crying. Poor guy was in CA heading to the airport to come home. It took him a few minutes to understand what had happened and assured me that he would stay on the phone with me. I started walking, anxious to get home. A few steps in, my chest felt tight. By the time I got to our front door I was a basket case. Dan and I agreed that I needed to get to the ER.
I called my mother next. Her years at the Red Cross makes her as close to a doctor as our family has until Anna gets her degree. She agreed that I needed to get to the ER to see if I had broken a rib or two. I then called my friend Jen who dropped what she was doing and within minutes pulled into the driveway to take me to Urgent Care.
Apparently, there is not much to do for a broken rib – ibuprofen, acetaminophen and use of a breathing thingy (incentive spirometer) every hour. Oh, and “avoid recurrent injury to the affected area”. The doctor was friendly enough but didn’t seem to appreciate what it looks like to be Jack’s primary caregiver OR take much interest in why I fell.
I did managed to get some sleep last night and am now trying to figure out how to get through the next few weeks as this rib is healing. I have a dog walker coming every day, Jack’s other mothers are chipping in, and Dan has already gotten Jack up and out to school, made the beds and started the laundry. I hate this sudden need to cancel life for a few weeks but figure I will spend this time studying for the National Counselors Exam, preparing for the ALD Connect Annual Meeting and Learning Academy (I’m speaking this year and a little nervous), and working on some workshop ideas I have been thinking about. I’m also going to start making some appointments for me to see doctors who understand ALD. My balance, my bladder, my ghost feet – these are all likely results of ALD. This fall has not just broken a rib but it has kicked me in the ass — It’s time for me to make my health a priority so that I can continue to care for others.
We’ve lived in SOMA (South Orange/Maplewood) for 25 years. We’ve owned three homes here, had two kids here, and raised 4 dogs here (some more successfully than others). We’ve celebrated many happy moments here and experienced our hardest days here. SOMA will always be our home.
There are many reasons to love our towns — the easy access to NYC, our charming villages filled with cute stores and excellent restaurants, schools that managed to educate our two very different children, South Mountain Reservation, and the people. The people of SOMA are what really make our community a treasure.
We’re honored to be the cover family in this month’s SOMA Living Magazine. Thank you, Michael Goldberg, Karen Driggs, and Jamie Meier (www.livelovelens.shootproof.com), for putting this all together and sharing our family’s story. We wish Anna could have made it to the shoot, but we did FaceTime her. I wonder if this should be our holiday card this year🤪😂🥰
Love, Jess
If you live in SOMA, you should be receiving your copy of SOMA Living Magazine soon. If you live out of town, you can catch a glimpse here — http://somalivingmagazine.com/
Every month I speak to medical students from Rutgers University. It’s a small group of third year students who are in their pediatric rotation. I’m a “patient representative” who is there to share our family’s story and the good and bad of what we’ve experienced with doctors. I look forward to these Zoom sessions and am always impressed with the students and appreciate being able to sneak in as much as I can about ALD — the often missed signs of ALD and the importance of newborn screening.
After we go around doing introductions, I share the video that bluebird bio made about our family. It’s a great way for the students to learn a bit about our journey and “meet the family”. While the video plays, I usually take the opportunity to slip away from my desk to make a cup of tea or check in with Dan and Jack. Last night I sat and watched the video with the students.
I found myself in tears.
I did regain my composure by the time the video was over and got through the next hour and a half managing to hold it together as I shared stories of working with many exceptional doctors and some who were lacking empathy and/or the ability to recognize when they may need more education about our not as rare as you might think disease. I always try to be approachable and relaxed, using humor to make everyone as comfortable as possible as I share stories about witnessing our son unravel, searching for answers, receiving a life-threatening diagnosis, watching as our once typical, healthy son fight for his life, and learning to adapt to a life that none of us ever imagined. I’ve done this enough that I can let the words just flow. I did a fine job, but I couldn’t help feeling distracted.
After the session, I got up and went directly into Jack’s room, knowing that time with the boy would brighten my mood. We sat and watched The Impractical Jokers and laughed until it was time for us to get ready for bed. I did feel much better after spending time with him. Jack is doing great. He loves his adult program and time with his other mothers AND can comfortably live at home. His health continues to be stable and, except for an occasional tear shed while watching those ASPCA ads, he always has a bright smile on his face.
Although I felt better, as I tried to fall asleep last night, I kept thinking about my reaction to watching the video. My only explanation for yesterday’s tears is that it’s been a while since I let myself really focus on what we went through 15 years ago. Sure – I share it, but I remove myself as much as I can from the story. I fill in as many of the dark spots with humor and light. It’s how I survive.
If I were my own therapist, I would ask myself how this strategy is working, and I think my answer would be that it’s working pretty well — I don’t want to live in the dark. I want to live in the light. I want to enjoy all the good our family has experienced and not waste time with the what ifs. BUT maybe sometimes I should consider allowing myself some time to be frustrated or mad or sad. I’m not sure how or when, but I will sure try to avoid doing it in front of a screen full of students.
There are few things as depressing as taking down the Christmas tree. It literally screams – THE PARTY IS OVER!!!!!!!!
We had a great holiday season, but this year’s celebrations were tainted with a constant fear of being cancelled. We had piles of fun activities planned — family parties, visits with friends and plans to celebrate Anna’s graduation (YES – our Banana is done with school). Leading up to each event we’d scrambled to find a test, swipe our noses and pray — COVID was everywhere!! We were almost resigned to getting it (hoping that our boosters would do the trick). Good news is we managed to sneak in almost all our plans, and so far none of us got sick with anything (but perhaps a little bit of a hangover here and there).
Yesterday when I started taking down the holiday decorations, I thought about all the fun we had over the last few weeks and then heard Anna packing up and Dan starting our 11th load of laundry.
Anna’s now back in Baltimore, Dan’s upstairs being loud about crypto currency, Jack is out with his other mother, Maria, and I’m sitting at my desk wondering how I’m going to work 20 hours a week as a counseling intern while going to school full time. I have the news on in the background and COVID is continuing to try to cripple the world, there are warnings about threats of violence on the anniversary of January 6th and someone just mentioned it might snow on Friday.
The party is indeed over!
I’m trying to remind myself that 2022 is going to be a great year. Anna starts her life as a grown-up while living/working in Baltimore and applying to medical school. Dan has his job that he loves and his Old School Vinyl Podcast. I will be finishing my master’s program and start my twentieth career as a counselor. And, Jack will continue being the happiest man on the planet☺️!
Here’s to a fantastic 2022! May it bring everyone joy, health 😷and happiness!! I promise I’m toasting with a simple glass of water 😉
hApPy NeW yEaR!!!! Less than a week into 2021, and our family is starting out strong. Anna completed her junior year at Johns Hopkins a semester early, so she’s taking next semester off to study for the MCATS. Not really … Continue reading →
As the music plays, I lay my head on his shoulder and feel his breath on my face. I wrap my arm around him so I can stroke his hair and wonder when he’ll lose the rest. He doesn’t seem to know that he’s aged, but the years have come and gone and he’s showing signs of a complicated life. He loves this song. I can tell by the way his body is rocking. He’s not been able to speak for many years, but I’m able to translate. Our connection is deeper than the scars his disease has left behind.
September is here and it’s been fascinating to see how everyone is getting back into the swing of school/fall — in-person small classes, home schooling, virtual learning, hybrids. Our family is still struggling to find our “back to school” routine. We have a messy, make-shift assortment of activities for JackO that we seem to be constantly changing (although he is happy and busy(ish)). Anna is back in Baltimore, taking classes from her apartment and has already been quarantined twice after being exposed to people who tested positive for COVID. Dan is continuing to work from our home office and seems to enjoy working unshowered in tee-shirts, but I do hear him throughout the day yelling at Fios. I win the award for the least productive family member. I do start each week with a master plan of writing and work-outs, but instead find myself doing everything but. At least my closets are clean.
These are crazy times and I keep reminding myself that things will get back to normal at some point. Maybe NORMAL isn’t the right word.
Thirteen years in, and our family still refers to our lives as before and after ALD. Two years following Jack’s transplant, we still had a suitcase in the trunk of the car just in case we found ourselves in the hospital. And, when everyone was struggling to find masks in March, all we had to do was go into Jack’s closet where we had our leftover pile from post-transplant isolation days. Having gone through that time in our lives, scarred us and left us always feeling like a shoe could drop at any moment. I resented this unease for years, but I guess it prepared us for this latest sh^tshow (I tried to find another word, but noting really worked as well).
Having learned from our ALD experience, I would imagine the entire world will live for quite awhile referring to life as before and after COVID. I’m guessing that it will be years before a cough is just a cough and the pile of masks at our front door disappears or we allow the Purell in the car to dry up. I know someday we will go back to living again, but when?
Maybe instead of focusing on getting back to normal we should focus on creating a new way of living. I know for some of the country, masks have become a political statement, but here in our area masks are mainstream. It means that I now venture out into the community without too much fear. I do find I am constantly looking around for maskless faces and listening for coughs, but mostly I am just going about my business. Being out — even just to run errands — feels liberating after months of the only non-family member we would see was the UPS deliver person.
Part of our back-to-school/fall plans is seeing more people.
We are trying to have friends over at least once a week and even went out to dinner last weekend — outside. I’m taking walks with friends again and Jack has his “other mothers” and his favorite OT (we love you Mr. Galo) coming to the house again. We are even heading to visit friends and to see my in-laws for a few days this weekend. Not that any of these choices are perfectly safe, but everyone we are seeing has been hunkered down and except for a small crew of people, everyone wears masks when not outside/distanced. We feel there is minimal risk, but do appreciate that some of our choices aren’t perfectly safe. Still, we are willing to take the limited risk. Stretching our comfort level is important for us right now so that we stay sane. We were starting to go a little nuts and within a few weeks, the cold will blow in and entertaining will become harder. The flu season might also complicate re-opening in general and we don’t want to look back in November and wish we had seen more people while we could.
So that is where we are right now. Trying to get in the rhythm of the new season and control what we can. Wear masks when out, wash hands constantly and see people in a safe(ish) way.
It’s Thursday and I still haven’t done much working out, but at least I can say that I did spend an hour writing. Now I can go back to procrastinating my paperwork and organizing another closet. Maybe I’ll also reach out to some friends and see if we can make some dinner plans out on the patio next week.
I just hope that, before too long, we can worry less and hug more. Until then — Happy FALLLLLLL!
I often chalk stuff up as a happy accident or a funny coincidence when Jack has a new trick. It’s not that I’m not proud of our boy or that I don’t pray with every ounce of my soul that he will make improvements and develop new skills. I’m just being careful. It’s my way of protecting myself from disappointment. For years, I would see small successes and think it was the beginning of a huge transformation. I was often left disappointed when a new trick vanished as quickly as it had arrived. So I’ve learned to focus on and celebrate what Jack is doing well and consistently.
Over the years there have been some things that have proved to be more than a trick. Jack relearned how to walk with purpose, eat solid food, hug. A few years ago, after being told repeatedly from the folks at his high school that Jack could read, I watched as Jack pointed correctly to a word on a sheet of paper. I paused and then pushed down the excitement, reminding myself that he had a one-in-four chance of choosing the right word — not crazy odds to have guessed the correct answer. Then he did something similar the next day. I tentatively held up word after word to test the skill. I was delighted — and shocked — to see that his teachers were right.
Lately we’ve witnessed another new skill that at first had us laughing.
Last week I got a flurry of text messages from friends asking me what was going on? “What are you saying?” “You okay?” “What’s THAT photo?”
When I scrolled through our correspondences, I saw odd comments and strange photos. I couldn’t figure out what was going on — had my phone been hacked? And, then I saw something that solved the mystery. A large nose.
It was Jack.
I went into the bathroom where Jack was sitting on the toilet with his iPad on his lap. Jack isn’t consistent with his toileting and we find that if we sit him for a bit every few hours we can often save a diaper (adult diapers are about $1/per — and we are cheap). We sit him with his iPad so that he can stay entertained AND stay seated (he has startled more than one guest over the years by walking out of the bathroom with his pants around his ankles).
After the random texts, I realized that Jack’s iPad is linked to my phone and that he was writing to people. How on earth? He must have just been lucky as he hit some buttons.
Then it happened again. And again. Apparently Jack likes texting and sharing photos of his nose and thighs (thank goodness it hasn’t been of anything else).
Then this morning I heard Anna’s voice coming from the bathroom. Having just delivered her to Baltimore, I wondered how it was possible until I walked into the bathroom to find Jack smiling at his sister’s face on FaceTime. Apparently he doesn’t just like to write notes.
So folks, I need to apologize in advance for any odd correspondence you might receive from me. It wasn’t a butt dial and I haven’t been day drinking. It’s just Jack saying hello.
AND, if you get any photos . . . I’m really, really, really sorry. PLEASE do not alert the authorities.
We have an alarm that sounds every time the front door opens — a two-note chime. It’s usually followed by Finn (bad dog) barking loudly and racing to see who’s arrived and how long he can get away with jumping all over them. Last week, the constant chime exhausted poor Finn so that by Wednesday, all he could manage was to lift his head off the couch for a second to see who’d walked in the door before returning to his nap.
At the beginning of the week, I too would race to see who’d arrived so that I could give them some love and offer them a snack or something to drink. After a couple of days, I figured everyone knew that I loved them and how to walk to the kitchen.
Anna was home for Thanksgiving (THANKS GOODNESS) and our dear friends – the Mackays – joined us for the holiday week. An extra five people and a dog, adding some noise to our “far too quiet since Anna left for college” house.
We invited another ten people and two dogs for Thanksgiving Day. Nineteen humans, five dogs, two turkeys (one fried), six pies, two stuffings, bourbon sweet potatoes, mashed potatoes, green beans, salad, cranberry sauce, and more wine then our poor recycling cans could manage. Crazy, delicious, fun AND constant door chimes.
We said goodbye after Thanksgiving dinner to ten guests and two dogs, but added two more people on Friday (my best friend from college, Enger, and Katie Mackays roommate, Hanna). I feared we’d not have the energy to entertain them, but we managed. We even threw in a little party on Saturday night to round off the week!
The front door kept on chiming.
Yesterday we woke up and everyone did their part cleaning up the house, stripping beds and starting the laundry. Then, one by one everyone headed out – back to college, work, reality. I usually love the quiet after the storm of a holiday, but everything was so perfect last week, that I really didn’t want it to end.
I’ve been stressing lately about some things, but when it comes down to it, our lives are wonderful. Our friends, our family – they’re really all that matters. I can’t wait for the holidays to continue. We need some time with the Torrey side – and our door needs to go back to chiming!!
Love, Jess
PS Anna comes home in 17 days and the Mackays promised to come for New Years!!!!
smiles and duct tape 