Cancer and my people.

So, I finished the book. And I am sitting here in my quiet living room, all 3 dogs fast asleep on the sectional sofa where I was just sleeping with them until about an hour ago. I’m thinking of the talk I’m supposed to have with David later. And as for the book? When I closed it after reading the last page, I thought, “I really hope she doesn’t die.” I mean, of course she’ll die someday. I just hope it’s not soon, and not of cancer.

And I couldn’t help but think of Halle and Autumn. How did I end up with 2 best friends whose daughters ended up with rare, serious, aggressive cancers as teenagers? Autumn has already outlived her initial prognosis, but there is heartbreak there. She’s decided her mother, my very best friend in the entire world, is toxic and cannot have a relationship with her. I don’t know why. I can’t understand. My friend is broken over it – absolutely gutted. And I can’t do anything about it. Can I? She asked long ago for none of us to mention anything about it to Autumn, and we’ve respected her wishes. But I don’t know how much longer I can do it.

And then there is Halle. And I think, please don’t let our luck run out. Please let there be a miracle. Please let her dad, who lost Halle’s mom shortly after her birth, not lose another woman who he loves with all his heart. I think how hard cancer must be on their whole family, and how they probably don’t let us in on everything. And how much I love Tina and how amazing and wonderful and just simply THERE for me she’s been through Aaron’s illness and hospitalizations. 

Life is so hard and we’re all trying our best, and sometimes it seems so cruel that some seem to be able to sail through life and others, well, we scramble and scrabble and still don’t make it to where we want to. 

Notes on Between Two Kingdoms

Originally Written March 18, 2022 6:37 a.m.

Notes on Between Two Kingdoms

I’m reading a new book, Between Two Kingdoms, by Suleika Jaouad. It was a birthday gift from Joey (I had asked him for it). I came to her by accident; I’m a big fan of her partner, Jon Batiste. I love seeing him on Stephen Colbert’s show, and I’ve got his last album almost memorized. Somehow Suleika ended up in my Instagram or Twitter feed, and I was immediately curious. Her leukemia had relapsed and she was due for another bone marrow transplant. I have even subscribed to her Substack – the one you have to pay for – and loved it. Her writing is amazing; her writing prompts, useful and eye opening.

I’m to the point in the book where she’s just begun her 100 day road trip, several months after her final chemo session. She described how difficult it was to transition back to the person she was…except not so much difficult as impossible. And I started thinking about my life as the mother of a sick boy. Not terminally sick, no – but always dealing with his body betraying him. Some of the betrayals are just painful, annoying, or humiliating (maybe “just” downplays it too much; I don’t know). But some are dangerous and life-threatening. And the selfish part of me wishes for the former because the latter brings the possibility of losing him. That’s something I can barely stand to think about for very long, even though I have, many, many times.

But it has changed who I am. I remember years ago reading a post of one of my stepdaughters talking about how much they admired their mother for always making fun in life, taking chances, being spontaneous and all of that. And I felt a little bitter – that I used to be that way, before being the mom of a chronically sick child took it away. And I knew maybe it was a terrible way of looking at it, that I made choices, but I didn’t see any other option. My life was about keeping him alive and as well as possible, and that ruled out a lot of spontaneity. Because our version of spontaneity was medical chaos – that is what uncontrolled epilepsy IS. 

But he is now 19, to be 20 this year. And his health is better than it was, though the seizures aren’t gone. And I don’t who I want to be now – or even, maybe, who I can be.  

The Problem Solvers?

It occurred to me recently (and not so recently) that some people need to solve problems so badly, they simply create them. My first husband is one of them. He's a good guy, don't get me wrong. Great dad, excellent professional, has a lot of friends. But as long as I've known him, he's been Looking For Problems. 

Last night, I went over to his house to pick our youngest son. He mentioned a car part he'd bought for the used car I had just purchased for our middle son. I was surprised; we'd bought it in good working order and I didn't think anything could be wrong with it so soon. As it turns out, he has some sort of "code reader" that you stick in the tailpipe that tells you what's wrong with the vehicle, and he used it despite there being no other evidence of a problem. Lo and behold, some sensor or other was not working correctly. Ok. Well, maybe he headed off a problem early. Or maybe he wasted his money. Who knows.

When the boys were growing up, I'd often get a call from him, clutching pearls, wondering if this thing was a big deal or should we be doing that. Or, as soon as a minor problem appeared, morphing it into a full blown problem with a multi-point solution that had to be figured out right then (and often it was one of those things that, if you just gave it a day or two, would work itself out). It was exhausting sometimes, but I was grateful he DID pay so much attention to our kids.

But this sort of thing happens at work, in our relationships, in our day-to-day interactions with people. Let's create a mountain out of a molehill so someone has something to do. 

And for the most part, that just isn't me. There is life to be lived and enjoyed, and there are problems enough that MUST be dealt with without creating more problems just to enjoy working out the solution. And I'd argue, sometimes that working out isn't all that enjoyable, no matter how accomplished you may feel afterward.

No, my philosophy about problems is more often "wait and see." Most things will resolve with little to no intervention if you simply give it a minute. Not everything needs to be dealt with, and certainly not the very moment you learn there's an issue or problem.

Have some patience. Give it time. And take a break from solving problems you created.

Relativity of Speed

Tonight on my evening walk, I was contemplating how very slow I have become...I used to walk a 15 minute mile, no problem; often I walked it in less time. I did purposely not push myself tonight, so that was part of it. But I know it's age, weight gain, etc. And so I felt a little down about it.

Simultaneously, I was musing on a conversation with my best friend earlier. Her middle child, her 2nd daughter, turned 19 today. That means my own son, my youngest, will be 19 in just a couple months. It seems so hard to fathom. As I was walking, I strode by the school where he finished his time in Cub Scouts. And I thought how very fast all of that came to an end - the business of children in school, in sports, in Boy scouts and all the other things they did as young boys. For 25 years, the main part of my purpose has been serving as their mom. And not that they don't need or want me around anymore (I do spend a good deal of time with them), but it's just not as labor and time intensive as it was. And I find myself not knowing what to do about that. My youngest two are only 17 months apart, so I think that's part of it...it seemed to end so abruptly. 

When they were very little, people told me all the time how it would go so fast. And I knew they were right, but it felt like some moments were just standing still, waiting for the exhaustion and massive labor exertion to be finished. But here I sit, contemplating how very fast it DID all go, and wondering how in the world 25 years could feel like a minute. 

I don't know what comes next and I'm a little adrift lately. I don't know what I want or what I can do, but I find myself restless and ready for a change. Maybe it's just middle age; maybe it's believing I get to finally have a life of my own. 

But I hope it slows down a little while I figure it out.

Entertaining

 I will share a somewhat unpopular opinion: I don't like superhero movies. 

Oh boy, that's good to get off my chest. See, I live with people who looooove them. My boyfriend and my youngest son love everything superhero; they will watch every movie and series that comes along, often multiple times. They never get bored of it. I play along and will watch a movie once, but ask me to watch it a second time and I'll likely flinch...a 3rd time, and I will tell you that I don't intend to spend my waning years on earth passively absorbing entertainment I didn't like all that much the first two times. 

My boyfriend only seems to really like movies with elements of fantasy...whether it be superhero, sci fi, or something in between, if it doesn't defy natural law, he's not very interested. I'm the exact opposite; I want character driven, slice-of-life movies. And it's not that I don't think sci fi or Marvel movies can be fun or entertaining; they just don't hold my interest much and I find myself bored with them.

I have thought about it a lot because I want to like them; it would certainly make choosing "what to watch" with my partner a lot easier. And I think it's because there's no drama. Now, I know that seems insane on the face of it - what could be more dramatic than the world blowing up unless they find the last pretty rock? But it IS. Because in worlds where anything is possible and natural law and physics don't apply, anything is possible. I cannot suspend my disbelief that the good guys can't just pull off a hat trick whenever they want because, well, what's stopping them? Not really anything. 

Now, I suppose you could sort of say the same thing about any fiction; if a writer is making up a story, he or she can resolve it any way they want to. They can change the facts of the story easily to get to the desired outcome. But because those types of movies don't have an "anything can happen, even breaking every law of physics" sort of backdrop, there's more suspense. How the problems get resolved takes more creativity and thought. And, in many cases, it actually means something to the audience and can be useful (not to mention we probably have a frame of reference for the situations, depending on where we are in life). 

So yeah...I think I do have it figured out, why I don't care so much for fantasy. And I don't know if it will ever stop bugging me that it seems to be the only thing my partner likes, but lucky for him, I'm not perfect either ;)

Engaged

It seems marriage is in the air – and kinda quick! My assistant came to work the other day with a new engagement ring. And another coworker is very pregnant (and engaged). It didn’t take either of them long after meeting their beaus to get to that point.

 

Me? It’s been 2 years and 5 months with this fella, and no ring in sight. And I can’t bring myself to care about it an awful lot, because we’re happy. We recently bought an expensive bed together – I figure that’s a pretty big commitment (I mean, besides the one where we’ve been sharing a home and a life for 2 years). Sometimes I think about the romance of engagement, and the status of being a wife and having a husband, and I think I might want those things again. But I’m a very practical person, and my practical side grimaces a bit at those things. It isn’t that I’m not committed or think that he isn’t, so much as I know that things just end sometimes. And while I’m not sitting around just waiting for that to happen, I know it’s a possibility (two divorces will do that to you). The ending is a lot less tricky when the law’s not involved. And besides: he hasn’t asked me.

 

I get ads online for pretty rings all the time. I’ve actually thought of buying one just to treat myself. But then I think: I probably need to buy a new washing machine first. And stuff for the yard. And figure out things that are going to start costing me when the youngest starts college soon. So I just look at them longingly and close the tab.

 

I’m engaged with my life: with my sons, with my dogs, with home and career. I’m engaged in a largely satisfying relationship without needing more labels just yet. I’m engaged with friends and activities and all kinds of things. After a year of withdrawal from many things, I’m re-establishing my connections. And at the moment, it’s all the engagement I need.

The darkness helps us all to shine

There's a Red Hot Chili Peppers song that I love called "Dark Necessities." I love the music from start to finish, but I love the poetry in the lyrics - one lyric in particular, "the darkness helps us all to shine." I actually thought it was "the darkness helps to sort the shine." Honestly, I love both versions! Mine is better...don't tell Anthony Kiedis.

I have been thinking a lot lately how very charmed my life is right now, and has been for a bit - even through the pandemic. I was very, very lucky - I have been in a job now for over 11 years that I love and has supported my family well. I received a generous inheritance that ensures me and mine will be ok (and while the safety net is nice, I'd give anything to have my dad, stepdad & grandma still here).  My children are mostly doing well. I am in a happy, safe, fulfilling relationship. I mostly get to set my rules, and it's nice.

Life wasn't always so easy, though. There were years I didn't know how I'd pay the bills, especially the thousands in mounting medical bills. There were years I felt trapped in unhappy, unfulfilling, and sometimes even verbally abusive marriages. There were long periods I was so despondent over my sons' health - both mental and physical - that I worried all the time that I was going to lose them. There were moments in my present job I was desperate to get out, worried over whether they could even pay me. I've lost parents and beloved family members. I've watched my sons lose friends far too young, and friends and acquaintances lose children who never had the chance to grow up.  I know pain, and I know trauma.

But my sons all survived childhood. I have zero medical debt, at the moment. And I am able to make some long-needed improvements to my home, and help my friends & family when they need it. But even now, while life is relatively calm and easy, I still look for storm clouds on the horizon. I know they will come; that's just life. None of us gets out of it alive, as they say. But what I do know is that no matter how bad it may get, I know how to get through it. I don't wish for a different history, for the one I have makes me beyond grateful for my present. 

The darkness certainly helped me to shine - and helped sort my shine. 

Summer musing

April has become a month of sad reminders, having lost two of my favorite people in that month, in recent years (my stepmom and my grandmother who raised me). No birthdays; no holidays. It's often more cold than warm; spring teasing us with hints of summer only to return to blustery and sometimes snowy days. I'm usually eager to see the end of it; to enjoy the warmth and celebrations of May: birthdays, Mother's Day, graduations, maybe even a wedding or two. And of course, Memorial Day, marking the official start of summer for Americans. This year is really no different. May 1 was yesterday, and already I feel a little lighter.

Even before the month of April took its leave, however, I was already dreaming about summer. For the past week or so, the edges of my mind keep showing me glimpses of summers in my youth and in my children's youth (to be fair, those things aren't far apart, my children having been born in my 20s). I keep thinking of the slightly spicy scent of vegetables just picked from the garden. I think of all those summer hours when my sisters and I begrudgingly helped our grandmother snap beans, peel tomatoes and apples, and shuck corn to can and freeze for the year to come. And while at the time I hated nearly every second, I look back on it so fondly and wish I could have one more summer like that. 

And I think of going to the pool with my cousins, lying out to tan in the backyard, and wishing the oppressive heat and humidity of central Illinois would give us all a break. I remember the family car trips to visit relatives in West Virginia and Florida, and how lucky I feel now that there are so many in this world I'm somehow connected to, who always seemed happy to see us, and gave me rich memories of a full and loved-up life.

I think of summers when my kids were little; Quentin sitting in the middle of a strawberry patch with red juice drooling down his chin as Joey and I picked fruit. All the boys splashing in little inflatable pool in the backyard. Trips to the zoo and the park and the library, always trying to find something inexpensive to keep them happy and entertained. And I feel so lucky, that it was an incredible privilege, to be able to have that. 

This is the first summer all my boys will be adults in the legal sense. The oldest has moved back home; the youngest is just graduating high school. The middle is living just down the road with his dad, finishing up junior college. The things they enjoy now are different than when they were kids. But I'm sure going to try to fit in a hike or a time out or two in honor of summers past, when life was a little simpler, and be ok with their groans and grumbles...because someday, they'll be the ones wishing to have it back for a moment.

Shots fired

I have been sick about the grocery store shooting in Boulder, Colorado, since I read the news about it yesterday afternoon. I've been consuming news about it far more than is healthy; even reading up on the culture and city of Boulder. I've only been there a couple times, but I loved it, and found it so hard to believe a place like that would be the scene of a tragedy like this. A dear friend living in Denver let me know maybe it wasn't so unexpected; that Boulder has more problems than I realized.

I love Colorado; the Denver area in particular. I have had to spend a lot of time up there for my son's medical care, but I've also spent a good deal of time there for recreation. In fact, I'm going up this weekend for the first time in well over a year (the pandemic prohibited it without a significant quarantine upon my return to New Mexico). I'm still looking forward to the trip, to celebrate my beloved's 40th birthday. I thought we might trek up to Boulder a bit, as it's so close. But I won't deny my mind flashes on a tragedy like this possibly happening to us while we're there.

I don't like guns - never have been super fond of them. I grew up around them, and so they haven't been a strange or scary thing to me personally. But when I had sons, their dad and I decided we would not be having guns in our home, ever, while they were growing up. Adolescents are not known for level-headedness and calm, and also our family suffers mental illness on both sides. Guns make it far too easy to turn a temporary problem into a permanent solution. We did not want that on our heads and hearts.

All my children are legal adults now. And I still don't want them near guns. I hear so much about how if people want to do damage to others, they will find a way, and restricting people's ability to own guns will not stop that. But I disagree. Guns make mass destruction of lives so very easy, and so very impersonal. You don't have to look someone in the eye to shoot them. It takes such little effort to pull a trigger over and over, causing mass casualties in a short period of time. You don't have to assemble materials or learn about the science behind how to blow something up. Nope, you just walk in a store, buy a weapon, and 10 minutes later you're ending as many lives as you please.

During all these mass shootings...where were the good guys with guns? In Boulder, it sounds like he (a police officer) was one of the first ones killed. The thing is, the good guys with guns aren't stopping a damn thing.

And I cannot stop weeping over this. I'm so fucking disgusted over the lack of response to a problem that actually CAN BE SOLVED. But nobody wants to because it's more important to have all the guns and god their black little hearts desire.

Cut Short

Today would have been the 20^th birthday of one of my sons’ friends from his cub scout days. My own son will turn 20 in just a few months – and their days as Cub Scouts seem like not so long ago. Isaac, his friend, was murdered last year. I’m friends with his mother on Facebook, and how she has managed to go on, and even thrive, is nothing but a testament to her strength and that of her family. He was her oldest of 3 sons; I always felt a bit of kinship with her, being another mom of 3 boys.

 

When I first became a mother, the thought of losing my children as youngsters didn’t really occur to me. I had no frame of reference for it; the only young person I recall personally dying young was a classmate of my sister’s, who was lost to suicide during their senior year.

 

And then my youngest son came along with a set of health problems that often had me fearing for his life. Later, mental health issues affected more than one of my sons, and I feared loss in a different way.

 

Along my parenting journey, I’ve known a few parents who lost their children as teen in horrific accidents – a coworker, a fellow boy scout parent. And then our cub scout friend being murdered, well, that was definitely the most horrifying.

 

And so now, even though the youngest of mine is a legal adult, I still hold the fear. I still, most days, remember my tomorrows with them are not guaranteed. It may seem macabre or morbid, but not to me. To me it gives me motivation to make the moments count, to not put things off, to make sure they know how much I love them and how they make me who I am.

 

Happy birthday, Isaac. Lots of people remember you and wish you were still here.

 

Sebastian, Isaac and Quent