The Remembrance of Life

Yesterday I attended the celebration of the life of a childhood friend who passed away in November. It was lovely to hear about the ways he touched so many people. Person after person - from all facets of his life and all different stages - described him similarly. 

He was a bright star.  He was the life of the party. He loved to have a good time and loved to make people laugh. He was adventurous. He liked to push the envelope and was able to challenge authority in charming ways that mostly kept him out of trouble. He was creative and curious. He was a prolific writer and thinker. He was entrepreneurial.  And though he sought fame, he also treasured people as individuals. When he talked with you, you knew he was listening and interested. He made sure you knew you mattered. He was a good friend to many, many people. And in that way, he made a real difference.

As I listened to his sister read to us from some of their correspondence over the years, I was struck by his deep faith. And as his family members talked and shared how the group’s collective remembrance of my friend was an expression of faith (the community part of church - my words, not theirs), I was impressed with the peace they seemed to have reached. I’m not there yet. 

After death, we try to remember people for their best parts - it’s how I want to be remembered. And that’s how I remember my friend. 

But also I can’t seem to shake what came later for him in life. What I think makes his death so tragic.

My friend was 49.  He had been diagnosed with a schizoaffective bipolar disorder 2 some time in the last decade or so. Up until then, I’d been following his adventures online-  he was a balloon artist and a magician. He worked in Las Vegas as a performer. 

But his social media posts took a turn. His once light-hearted song lyrics and stories became mean. He wrote screeds against family members that seemed inconsistent with what I knew to be true. I began to worry. Not an all-consuming, up-all-night kind of worrying. But a back-of-the-mind, constant itch.

My friend became homeless in my city. Not for lack of resources or support - more by choice. Or really by inability to make good choices, I suppose. 

I would watch for him when I was out and about downtown, even though I wasn’t sure I’d recognize him if I saw him. I wondered how he was spending his holidays, if he knew how much his family missed him, and if he missed them, too.

But the intellectual side of me also knew that he had to choose the help that was available to him. He had to stay clean. He had to take medication to control the mental illness, and no one - no matter how strong their love - could do that for him. And so, instead, we waited. Or I waited.  His family continuously reached out to him. Offered him their love and more material support. I am sure they felt his absence as he missed holidays and weddings and reunions. His death makes all this effort- all their outpouring of love- seem to me like it was meaningless or maybe wasted.  And I think that’s what I’m struggling most with  because I know it wasn’t for naught, even though it didn’t bring my friend back to them.

My sadness overwhelms in some moments, when I think of all that could have been and now will never be.

I don’t feel comfort in knowing he is out of pain. I don’t feel peace because of my faith. I feel angry. I am mad that his future was robbed by the disease.  I am angry his family had to suffer at the hands of his mental illness, holding their collective breath in hope that he might recover and some former version of him might re-emerge. I don’t feel half-glass-full that he had so many bright, fun-loving years or grateful that the period of our lives that overlapped came predominantly before the difficulties his illness created. I am furious that his brain chemistry betrayed him.

I know this is my grief talking. I know my anger won’t change his last years or bring about a cure or convince some other person to seek and follow treatment. It won’t make his parents feel better about the child they lost twice, first to mental illness and then to death. But I cannot reason my way out of the sadness and the anger. Memories of his bright smile or his promise don’t offer me peace because they highlight what’s gone. I’m mad at him for not doing the work to get better. It’s so inconsistent with the kind of person he was- the loving, compassionate parts of him I knew. I’m furious at the randomness of it. The lack of logic to it.

One of my friends suggested that some of what I’m grieving is the loss of hope, the finality of it all.  Because as long as he was alive, there was hope he could recover and come through the other side. Another friend suggested the grief is recognizing that because of our shared history, some of what I’m grieving is a loss of my own history. I think they’re both probably right.

I know, intellectually, that time will help heel my heart. I am not in this alone. I have friends and my own family who knew him, and we have grieved some together.  But the grief feels lonely all the same. 

Belonging

 Here is something I love about my kid’s high school. Every student is given a “Red Sea” t-shirt at registration. Early on, new students are told “On Fridays we wear red!” And by and large, they do. They all have something red because every single kid gets a shirt. 

These pictures are from a couple of the school’s Instagram accounts. One is of the seniors waiting to welcome the new students this morning. Wearing their link crew shirts. A uniform of sorts. (My kid is buried in there somewhere.)

The other is of the student body. You’ll see some other colors in there, but there’s a lot of red. 

I love this. 

Giving students shirts to wear on the first day (and every week thereafter) takes away a tiny bit of anxiety about what to wear. It makes sure everyone fits in, no matter their economic situation. It helps students feel they belong, right from the start.

It's Been a While - Savoring the "Last Firsts"

 I have not posted in a while.  A long while.

Some of it is the busy-ness of days.

Some of it is that blogging seems sooo 2000s.

But most of it is that as my kids have aged and my day-to-day life has grown increasingly intertwined with and dictated by their lives, I've wanted to respect some semblance of privacy.  

But when my middle kid headed out the door to her first grade of her senior year of high school this year, I looked back at her first day of kindergarten, and I was so glad I blogged.  The seniors at her school do "kid backpacks" as a nod to their younger days.  We remembered that she had a Hello Kitty backpack as a kid.  And a Dora one.  So she went looking for a large-sized one of those.  Even though the colors and themes are no longer of interest to her.  She landed on Hello Kitty and tried for a mostly black one. But ended up with a pink one instead.  But when I looked back at her kindergarten picture, I discovered that she didn't actually use a character backpack at all! (Must have been preschool.)

Anyway, here she is.  Off to her "last first day." 

In fact, today marks the beginning of a series of "lasts."  It's her "last first day."  It means less to her than to me, as we start this march toward post-high school-adultish life.  It will feel slow sometimes, I know.  maybe even painfully so.  But I know I will look back and wonder how it blew by so quickly.  So I'm going to try and saver every "last" this school year.  Hopefully without smothering.

Breakfast

When I was growing up, I learned breakfast was the most important meal of the day. I mostly skipped it because my high school day started at 6:30, and I basically rolled out of bed and dashed out the door to arrive on time. In college, I was smart enough to mostly avoid early classes, so I wasn’t hungry when I woke up. When I was teaching, I forced myself to eat breakfast during the morning nutrition break so I wasn’t so hungry by lunch that I’d overeat. But on the whole, I’m still pretty hit-or-miss when I comes to breakfast.

A couple years ago, a mom in Tate’s grade kind of mommy-guilted me about his lunches. I was sending him with standard kid-lunch food. You know, sandwiches, fruit, chips. She told me she noticed how much he admired her kids’ lunches. She sent them with taqueria and other “hot foods.”  I thought it was a little outrageous. But I started sending him with taquitos.

Then last spring, he had the cleft surgery and I was sending him first with thermoses of liquid for snack and lunch. When he graduated to soft foods, bought a normal food thermos and filled it with rice or pasta for him. I don’t know why I didn’t think of that sooner. It’s continued ever since. Some days he still eats sandwiches. But he also takes hot food. (He also has access to hot lunch offered by his school, but he refuses to eat cafeteria food.)

All this to say Tate is a bit spoiled when it comes to his food. At least I think so. My older kids don’t want thermoses of food, but I think they secretly roll their eyes at how kind-of high maintenance this seems.

I’m not spending the same amount of time in the mornings making Tate lunch anymore. So now he gets real breakfasts. Like this:

And because I know it matters to Tate, who also announce back in August that he no longer wanted to eat mammals, those are turkey sausages.

Sheltering at Home

A friend’s infant has a diaper rash, and I remembered that I had an incredible cream recipe for it from when Marcie was an infant. So I looked up the post. And that led me back down memory lane, reading some of my posts from a decade(!) and more ago.

I’m so glad I blogged when the kids were young. Those small, everyday occurrences are so easy to forget. Especially if you are the kind of person who tends to focus on big picture emotions. And as the kids have gotten older, of course I’ve been reticent to post because it just feels so much more intrusive to do so.

But this year for lent I decided I’d try to journal every day. My goal was to find one inspirational quote and to write down one thing I’m grateful for each day. And with one exception. (I fell asleep!), I’ve kept up so far. Little did I know my journaling would coincide with a pandemic, which has informed and flavored my attitude and experiences.

I’ve really enjoyed others’ humor about the situation. I’ve read tweets mostly - But in the end, it’s a way to connect. Or at least potentially connect. and I think that craving is pretty universal.

Today I was touched by this video made by Berklee students and posted on NPR:

https://youtu.be/QagzdvzzHBQ


Enjoy!

Post Op Appointment

One week after surgery, we were scheduled for a post-op follow up with a physician assistant at the craniofacial clinic.  Tate was cranky. I think he was tired. And maybe a little mad he finally lost at a board game against my mom. (Though he confided in me that he did pretty well in poker against my dad. - Don’t worry, there was no betting!)

She removed the dressing on his hip and said it looked good. He wanted to know why it was lumpy, and she explained that skin is sewn that way because it collapses over time.

After the stitches fall out in their own, we will begin massaging the area around the scar for scar tissue reduction and to improve plasticity.

She looked in his mouth and said we need to do a better job cleaning food particles away from the stitches and the area of the graft. Which is a little crazy because he is on a full liquid diet. And he eats/drinks with a mouth guard in. So the particle issue should be minimal. Anyway, she suggested more zealous swishing and a water pick.

But he is cleared for school, which he is looking forward to.

Happy Easter!

Tate's recovery is going well.

He's been mostly off pain medication completely, with an occasional Advil.  (We finally switched to pill form this morning at his request.) We had anticipated hip pain today, when the injection given in the hospital wore off, but he seemed pretty fine.

He's been in his own bed the past couple nights, and he's been sleeping in. I had to wake him and the others up for church - but it was a good excuse for getting dressed up.

I'm still trying to figure out how to get some greens into him.  Hoping that probiotics and some spinach in his smoothies will help.  He's also figured out how to use our amazing Ninja blender to make some of his own milkshake concoctions.

Here's where we are at with the liquid diet:
So far, clam chowder has been the most successful food item.
He had chicken noodle soup liquefied today, but he said it was too hot.
He didn't like the liquefied macaroni and cheese.
We made some chips and clam dip with milk into a drink, and the flavor was good, but it was weird to drink it.

So we're still working on getting the right sweetness and consistency in food.
The best flavoring so far was the cheeseburger. We actually cut up his burger and bun and dropped it in the Ninja with some beef broth.  It was just a little warm, and it was actually quite good.

On deck this week we have more clam chowder, more milkshakes, more fruit smoothies, and we may also try spaghetti and even a meatball sub.

He's out of school until after the post-op visit. I know he wants to get back, but we have to make sure he's healthy enough and healed enough to navigate elementary school with a weakened hip and mouth.