Lately I’ve been distracted. Distracted by the lousy weather outside the window. The cold. The grey sky. The snow piling up… Distracted by the inane MTG politico drama playing out on TV every day and night… Distracted by work stuff ( I just started a new job this week). Work can sometimes be a positive and useful distraction – especially when living through the first 12 months of a pandemic (Yes, we are now in our 12th month…). But at the end of the day, it is still a DISTRACTION.
Sometimes the only part of the day when things come into focus, when my mind clears, when I shed all the distractions is when I get a giant hug from Jack. It’s the best part of my day – every day.
Even if you haven’t spent a lot of time with Jack, you know that he is non-verbal. But you probably can’t fully understand how he communicates most directly and most effectively. It’s when he gives you a hug. He is extremely strong. He will literally squeeze the breath right out of your chest. It’s the best feeling in the world. It’s when I regain all perspective — as I squeeze back!
Today is Day 5000 in the Torrey house. It’s been 5000 days since Jack received his stem-cell transplant in May 2007. Since the doctors at Columbia Presbyterian Hospital saved my son’s life. 5000 days of a wonderful life. 5000 days of smiles and belly laughs and hugs and dancing to 70’s tunes. 5000 days of watching him and his baby sister grow up to be adults. 5000 days of “our normal life” with Jack.
Think about what has happened in your life over the last 5000 days. It’s hard to grasp all the changes, the good and the bad, the ups and downs, the mundane and the thrilling, Hell, some days I can barely remember life before COVID. But Jack and his hugs help me remember what is really important in life. Not the distractions. That’s nothing but a lot of noise.
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 →
This morning I was sitting in my office feeling overwhelmed as I poured through my syllabi for the winter term. I was busy second-guessing my decision to return to school at my age and wondering how on earth I was going to manage, when I heard Maria (Jack’s caregiver), “JackO – why are you crying?”
I race downstairs to find our boy in front of Maria’s phone, watching a video with big tears rolling down his face.
Shakira singing John Lennon’s Imagine.
You may say I’m a dreamer
But I’m not the only one
I hope some day you’ll join us
And the world will be as one
Don’t ever confuse Jack’s silence with not understanding. He recognizes powerful words when he hears them and sometimes his emotions take over. Perhaps his silence allows him to listen even closer than many of us. I’m always amazed by the beauty of these moments. Maria offered to turn off the song, but I insisted that we continue. Tears aren’t always such a bad thing — beside I needed a little perspective this morning.
Love you JackO. And, John Lennon and Shakira too;)
Not sure how I can feel so exhausted when I do so little. Each morning I write a list of what I hope to accomplish. Some days go by where I don’t complete anything, so I return to the list and add things like — shower, walk the dogs, feed Jack — just so I can cross a couple of things off the list. With the holidays around the corner, my daily list gets longer and less seems to be getting done. Today, instead of Christmas shopping for the family, I ordered some bras and an eyebrow kit (not even sure what that is).
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.
In case you haven’t heard — there’s an election next week. There are very clear choices on one side of NJ’s ballot, but I want to remind Jersey voters not to forget to turn over your ballot.
Question 1 would add an amendment to the state constitution that legalizes the recreational use of marijuana, for persons age 21 and older, and legalizes the cultivation, processing, and sale of retail marijuana.
In a time when our state is in need of help, the tax benefits alone would drive me to support this amendment, but selfishly the legalization of recreational marijuana would make my life, Jack’s life, and the life of many, so much easier.
I’m a pot mama.
Of corse I’ve never used pot myself (it’s illegal 😏), but Jack has had a NJ medical marijuana card since 2016. We needed to fight the state, but were able to qualify because Jack was suffering from debilitating spasms that were effecting his ability to walk. Marijuana not only helped with the spasms, but has improved his overall quality of life. He eats better, sleeps better and although his mood has never been a problem, he’s even more JackO.
We have friends and family who credit marijuana with helping with nausea caused by cancer treatments, appetite, anxiety, sleep, depression and a host of other ailments. All without any complaints of bad side-effects other than it can be a pain to purchase and there’s still a lingering stigma attached to marijuana.
I don’t worry too much about people judging us for giving our son marijuana. There have been too many improvements in Jack’s life thanks to our adding marijuana to his list of medications, that we feel completely justified in our decision. What I do complain about is that medical marijuana in NJ is a labor of love — labor being the first word.
Every few weeks I contact Jack’s doctor to make sure our file is up to date, make an appointment and head out to one of the 3 dispensaries in our area (none is our community). I purchase an ounce of marijuana and then go home and start baking. It takes hours. I decarbonate the flower, clarify the butter, use a fancy machine to infuse the butter with marijuana and then bake cookies. I try to make each cookie with approximately 7 milligrams of THC – that seems to be the dose that helps Jack the best. Some caregivers would be forced to sample the cookies to gage the strength (of corse I won’t do that — it’s illegal😏). Jack has a cookie two or three times a day until we run out and then I make another run to the dispensary and spend another day baking.
Legalizing recreational marijuana would make access to marijuana easier and limit the need for Jack’s doctors to be involved. No more cards and physician’s certificates. It also means we could purchase eatables with a specific strength so that this mom doesn’t need to sample cookies to gage strength (NOT that I would do that — it’s illegal😏). And, legalizing marijuana would help limit the negative stigma attached to a medication that has improved Jack’s life exponentially.
So, if you live in NJ and haven’t voted yet, please make sure you turn over your ballot, think about Jack and his sweet smile, and do the right thing. Then turn your ballot over again and make sure you voted for Biden/Harris!!!
I’ve spoken about Jack’s “other mothers” in the past. A small group of women who Jack adores and who we trust with our most prized and fragile gift — JackO. Each of these women have become family and each has helped me every bit as much as they’ve helped Jack.
Last weekend when Monica arrived to hang with Jack for a few hours, she noticed right away that I was not myself. I shared that I was feeling a little off and she pondered if there was something in the air lately. She too had been feeling a little blue and told me that she’d been spending time listening to wellness speakers and reading inspirational books.
She shared something she’d heard and found motivating.
When you get in a taxi, you need to tell the driver where you’re going. If you don’t, they might be willing to drive you around, but it’s unlikely to get you to where you want to go. Even if it does eventually get you there, it’s not a direct route and can be expensive. “Words are powerful, Jess. Find the words for where you want to go.”
Wow!
As soon as she shared that story, Monica started putting on Jack’s shoes and left me there thinking as she took Jack to Wendy’s to pick up some bacon-double-cheeseburgers. She had no idea that she had given me the last kick I needed to make a big change.
I sat down on the living-room couch and asked myself to figure out the words for where I wanted to be in five years. The words were right in front of me. I then called my mother and told her what I was thinking — I told her my words (I know I’m 50, but she will always be my goto person when I’m struggling). She said, “I think that it’s a dandy idea. Move forward Tates. Don’t let anything stand in your way.” I spoke to Dan who told me he was proud of me and supported me 100%. By the time Monica and Jack returned to the house with their greasy fingers and full bellies, I was on the computer researching master’s programs. By next week, my applications to get a MA in Counseling will be complete and I’m hoping to start in January.
Truthfully, I’m not usually a person who believes in everything happening for a reason and that the world makes much sense. I’m more practical and believe that life is usually a mess and it’s our responsibility to make the most of it. Either way, Monica’s words hit me in an unexpected way and I am grateful. I’m ready for my next chapter now and I am relieved to finally have a plan. I’m aware that I haven’t actually been excepted into any program, but my words are out there so what could go wrong?😏
I’m fifty. I’m a wife and a mother and a friend. I’m a writer and a photographer and teacher. I’m also a special needs mother who’s passionate about working with other parents who are struggling to find their way. And, here’s what I’ve discovered folks — I’m also a taxi driver. Thank you Monica!!!!!
Love, Jess
I searched the internet trying to find the source of the taxi story. I couldn’t, but I did find this one.
“Life is like a taxi. The meter just keeps a-ticking whether you are getting somewhere or just standing still. — ” Lou Erickso
And of corse, I’ve always loved this one.
“I may be going to hell in a bucket, babe. But at least I’m enjoying the ride, at least I’ll enjoy the ride.” — The Grateful Dead
One more thing — Peter is included as one of Jack’s other mothers.
I know I’ve been a little unhinged lately. I know it when my friends start reaching out, “just checking in” and when people start asking if I’ve thought about getting a job or going back to school. I know it when at the end of the day, I still have my pajamas on and my iPhone tells me that I’ve spent HOURS on social media. I’m fighting with strangers and obsessively watching the news and finding myself checking my Twitter feed while sitting on the toilet. I don’t want to miss anything — as if my not being there is somehow going to lead to worse news.
Last night I had a ALD Connect Community Call on my calendar and logged on begrudgingly because I was going to miss time in front of the evening news. As the facilitator of these calls, I’m responsible for reminding callers that we are not to discuss the specifics of the phone calls. I won’t share details, but I will tell you that I got off the call in exhausted/relieved/happy tears. And, with a renewed sense of purpose. An hour and a half with members of the ALD community is what I needed to remind me of what’s really important.
My frustration with our current political situation/pandemic nightmare is that I’ve felt like I have no control. It’s coming close to how I used to feel about ALD. For years I would look at my son and his challenges and wonder why this had happened and why we couldn’t fix it. I struggled with making sense of all the WHYS.
Then I wrote Smiles and Duct Tape and Jack’s story started getting out to the ALD world. In sharing our messy journey, I realized that I wasn’t just telling our story, I was connecting to the community who understood our disease. People who knew what a Loes score was and what GVHD stands for. People who knew that we were unlucky not to have had an early diagnosis, but lucky that Jack never lost his vision and hearing.
It was something that I didn’t know I had longed for for years — connection. Being with our community helped me process what we were experiencing, learn practical things that have helped us and allowed me to help others Giving back —- helping others — is powerful. It got me from a place of feeling sorry for our family to feeling proud of our family and it’s strength.
Talking last night with several other ALD families, I realized for the first time in a while I was thinking about something other than when we could leave the house without worry or what will happen on November 3rd. It reminded me that the world doesn’t always make sense and we need to focus on what we can control. As much has I have – on some level – enjoyed getting feisty with non-mask wearing/virus deniers on social media, I know that I’m not going to change anyone’s mind.* I need to get back to doing something positive, something helpful — connecting — to our ALD community, the special needs community, to our MAPSO community, to our family.
I’m still wondering if it’s time to consider getting a job or going back to school. Writing, coaching, counseling, who knows? But, today, before even checking the overnight news, I was on my computer looking up ideas. Not sure if I will dive in, but it sure was a nice distraction.
Thanks to my friends — new and old — who were on that call last night and helped me refocus my energy. It’s noon and I have clothes on, have run some errands and haven’t yet gotten into any debates on social media.
Love, Jess
* I will still block anyone who is spreading misinformation. And, I encourage everyone to VOTE. For Biden/Harris💙😷✌️
I used to love the fall. It’s crisp air and magical light always arrived to some relief after a busy, hot summer. The beginning of the school year always felt like a new beginning and our calendars were filled with annual events — harvest parties and parents’ weekends. And, the fall culminates with a wonderful holiday — my birthday.
This year is different. As the temperatures lower and the leaves begin turning, I’m starting to panic.
I’m worried that we’re approaching the second round of hunkering down as the fall has arrived and the COVID numbers have started ramping up again. This time we know what it looks like to quarantine and, in this case, knowledge is not power — it sucks.
When all this started in mid-March, we thought it would be a couple of weeks. Almost like an extended snow day. We filled our freezers with food and set up the puzzle table in the living-room. Having the four of us home was like an unexpected staycation. Am I the only one that thought it was kinda fun? For a couple of weeks . . .
Then the reality crept in. A few weeks of missed school turned into no prom or graduation for Jack. Anna’s spring semester ended at home and then Hopkins announced virtual learning for the fall. Dan’s office started talking about limited returns to in-person work, but not until 2021 and every single house project I had on my list got finished.
Just as we thought that we would go nuts (with just our tiny pod), the weather warmed and our backyard filled with other people and life was okay again. Different, but okay. We got into a rhythm. Dan realized that he could sneak in some hiking while on calls. We planned at least one dinner a week with friends or family. Anna headed back to study in Baltimore for a change of scenery (and people). Jack got to spend some time with old friends and enjoy long walks and hours in the pool. We even ventured to friend’s yards and restaurant dinners (in parking lots), and snuck in a couple visits to Block Island. Our family realized that we could manage our strange new life of masks and Purell as long as we could see some people. It wasn’t a normal summer, but it was lovely.
Now days are getting shorter and cooler, and except for a few fire-pit nights planned, I see a very empty calendar. It’s hard to make safe plans if we don’t have the ability to be outside.
I hear people saying that things can’t shut down again. The economy will be ruined and people will go insane. I agree, but I’m just not sure my family has a choice.
Jack’s immune system is pretty strong 13 years post-transplant and we are usually able to manage his Addison’s Disease and Epilepsy with medications. Jack might be able to get through COVID without too much harm. But he might not. My parents might do just fine. Or not. And what if I got sick? Not in-the-hospital sick, just really sick. Who would care for Jack? Where would I care for myself?
We’re a family who is erring on the side of caution and I’m worried that it means that we will soon be limited to our home and a tiny pod. I don’t WANT to do it again. I’m just guessing it’s going to happen. So for the next few weeks we’re planning to do as many outdoor activities with friends/family as possible. We are also going to load up on some extra food for our freezer and grab a little extra toilet paper.
I know we are not alone in worrying about friends and family who might be more vulnerable. What are you doing to protect them?
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!
