Sunday, September 26, 2021

Things I learned about my children this weekend. (Day 270)

This weekend has been a roller coaster. As my middle daughter told her principal on Friday (during some quarantine-style confusion): "I have a lot planned and there are a lot of places we are going."

She did not mention the (unplanned) emotional trauma of the weekend. 

In 72 hours, a lot happened--a football game, 4 performances of "Big Fish" (bravo Lily!), soccer, field hockey, church, confirmation class, sad news, joyous news and several sub-standard meals eaten in odd places in a hurry. 

We are all very tired. But somehow, my husband managed to do laundry and it appears everyone has clean underwear!

(My previous texts to several friends about not having clean underwear turned out to be #fakenews.)

And now, now, I have to write a blog! In these busy, crazy times, I often forget all the things I learned about my children in the moment. I don't want to forget! So I am just going to list them here:

1. Lily started Confirmation Class today and was NOT filled with the Holy Spirit afterwards. This is not the church's fault; this is called being a 15-year-old girl who has been watching church in her living room (or not at all) for 18 months. As Pastor Nikki said, "Jesus, loves a reluctant Disciple!" Well, JESUS: ENJOY! 

2. Lily also finished four performances of "Big Fish." She was amazing. Her singing and presence and confidence bloomed. She's already got her eye on the Fall musical with this theater group: "All Together Now." She's also still on the crew team. She's apparently not a fan of sleeping and is not concerned about gas prices. 

3. Chloe is fierce. Siblings are often overlooked in all the chaos of childhood cancer. Chloe's been through so much along side her sister. She hasn't come out of it unscathed. BUT, as she grows up, I am seeing before my eyes the good and refinement that God has worked in her life despite all the horrors. She is always the first to ask questions, demand answers and try to make sense of things. 

4. And Chloe has more compassion than anyone I know. Her classmate died this week. Chloe did not know her well--but she asked me tonight if we could drop off flowers or card once a week to her family. She told me that it is always the hardest when people stop after a death. And she wants to do this anonymously (which means I should not be bragging here.)  I hate that Chloe has had this experience. But, I love that she has this compassionate wisdom. People sometimes don't see it in her--because she is tough and honest; but my Chloe Isabel is the real deal. 

5. Nicholas is such a talker! This is not news to me, but this weekend we had some great chats! We talked about everything from COVID booster shots to immunotherapy to organ donation to Pokemon cards to masking protocol. He needs to know everything and often makes me retell stories so he can memorize them to tell other people; plagiarizing his own mother. 

6. Nicholas is also a good sport. He has yet to get a goal in Travel Soccer (he is almost always on defense this year). His teammate got his first goal ever and instead of being intensely jealous, he could not wait to congratulate him. That heart of his is beautiful. 

And that's all folks. I also learned my husband is a professional laundry launderer (like a money launderer but not a criminal!). He would rather not be a professional laundry launderer. But, alas, wives also love reluctant husbands! 

Saturday, September 25, 2021

What was missing this September. (Day 269)

My husband does not like me saying that September is:

a. a graveyard

b. a cesspool

c. a cursed month

d. a walk through hell

e. a fucking disaster

f. death month

Instead, he'd prefer if I just called it September.  I mean, I know he is rational, it is hardly the month's fault that everyone seems to die or have a disaster or drama this month. And in truth, plenty of joyous things have happened. Plus, the weather is finally getting less vile. But, anything good really is left over from August or a bit of early October creeping in. 

September sucks. 

This week, I know of three deaths--a loved one of a beloved friend, a child at my daughter's school and then, yesterday, my friend Anna died. Anna is the mother of Mario, a childhood cancer hero and she is one of the cancer moms that I ran with at Balls and Runs and Telethons and Parties and Lemonade Stands. 

Anna had a brain tumor. Her son, Mario, still has inoperable brain tumors. She dedicated her life to her family--which included all the amazing hero children she encountered. I know she prayed for Lily because she told me that she did and unlike me, who intends upon praying for everyone by name and need, Anna really did pray for everyone by name and need. I used to laugh at all her saints--I am a Presbyterian after all; we don't have saints. She shared Saint memes all the time, which reminded me of religious trading cards. 

But, Anna believed. She believed in the power of prayer and the healing work of God and in appealing to a higher power when the lower powers on this earth screw everything up and fail us. Her faith is so inspirational--she prayed for everyone without a question whether they deserved it; because of course they did. She remembered their names. She knew what they needed. Anna was intentional with her faith--that's what all those Saints were about--being intentional in her prayers to God. She held my Lily in her heart and her hands.  Lily was just one of hundreds, I am sure. 

As I sit here tonight, yet another September day of goodness punctuated with sorrow, I think about what Anna would do--about what has been missing in my heart this September. It is not my faith--that's intact. It is my meaningful, intentional time praying to God to make the sorrow in September end--not just on October 1--but for all Septembers. It is my lack of time giving up my needs to God, who can take all this hell and heal my heart. 

Anna would pray; so I will, too. 

Until we meet again, friend, say hi to your Saints, I know you have a place among them. 

Friday, September 24, 2021

In-between times and the borrowing of trouble (268)

I am so tired today. Like bone weary, emotionally drained and completely without patience for the continued borrowing of trouble that seems to be the norm in these pandemic times. 

I'd like to tell you a story, from 2007. Lily was about halfway through radiation treatment. We were driving back to Houston from a long weekend in San Antonio with Mike's parents. Lily puked. 

Puke is what kicked off her diagnosis. Puke is what could be the symptom of tumor or shunt failure or meningitis or all sorts of horrors. 

Puke could also be reflux in a baby who had puked for one month straight before we found out she had a brain tumor. But, you don't know what the puke is signaling until it happens again (or does not). In those early cancer parents times, this one episode in the parking lot of a restaurant somewhere outside of Austin, was crushing. 

I remember Mike looking at me and saying "What are we doing? Why are we going on weekend trips with a baby who is sick? This is not where are supposed to be."

The thing is, neither one of us had any idea where we were supposed to be. At home hiding from the world? Or out in the world, enjoying what we could in moments that felt stolen?

It was an in-between time. Lily had been discharged from the PICU. She was going to radiation 5 days a week; clinic once a week; transfusions about once a week; OT and PT several times a week. Then, the weekends were ours. It seemed strange to not find joy in those weekends without appointments. But, then, when reminders of the war our daughter was wagging against brain cancer, it seemed strange to find joy when we had cancer to beat. 

A cancer diagnosis reminds you of the limited time we have on earth. When it is your child, every single moment become one in which you must seal in memories and find joy. In the end, we took more weekend trips--and we've made it our life philosophy to fight our way out of the in-between times, by just putting one normal, regular foot in front of the other. 

We are living in those in-between times now. As much as we desperately want to push forward in normal, pre-Covid ways; Covid always finds ways to creep back in. 

Yesterday, it was an email about the death of a classmate of my daughter's--a 7th grader. Instantly, I found myself giving my prep talk: you did not know this girl. you can be sad. but you cannot borrow grief. you need to stay solid for those who will be grieving for someone they knew and loved. I gave the prep talk to my daughter (who did not know this classmate). I gave the pep talk to several friends. 

Then today, it changed. There was some potential contact; some interactions; there was a risk of exposure. There was confusion over the protocol for vaccinated children. The afternoon brought me to my knees. I forgot my rational pep talk. I was scared for my daughter. Heartbroken over this girl. Angry about this pandemic that rages on in hospitals and in protocol confusion and in bullshit fighting on Facebook. 

COVID, it seems, enjoys to push all of us to borrow trouble in these in-between times of lockdown and openness. But, trouble that isn't ours to carry just breaks our backs and leaves us exhausted, like I am now. 

My family is okay. We are safe and free. 

Friends, there is so much trouble in this world that would just delight at us borrowing it. There is sorrow and murders and deaths and destructions and things everywhere that could touch us personally, but don't. Instead, we are drawn to touch it ourselves. We have to resist. We cannot borrow trouble, to do so risks all of our sanity. We have to stay moving forward, resist setting roots down in this place of madness and leave the trouble that doesn't belong to us behind. 

Tonight, pray for Amelia's family. I don't know her; but I know that her family loves her and misses and they are broken tonight and forever without her. 

Thursday, September 23, 2021

One Story of Him (Day 267)

Four years ago today, my brother took his last breath in the operating room at Jefferson Hospital. 

He was 37. 

We were by his side and Sinatra was playing. My brother loved music. He loved big bands. He loved Sinatra and Dean Martin and Lawrence Welk and Andre Rieu. He loved musicals and dancing and performance. 

How funny that it was opening night, tonight, for Lily's musical Big Fish, the story of a man with so many stories. My brother had all the music. I had the words.  Together, we were sort of had a musical. He could dance and I could exhaust you by talking too much. 

I really miss him, you know? I really miss being a sister. I miss being his voice, while he was my heart. David taught me everything I know about real kindness--that kindness is something firm and fierce. Kindness can be honest and sometimes even hurt a little. Kindness is not being the nicest person in the room; but it is being the most open, the most available, the most forgiving, the most willing to make time. 

I know he left me with enough love to last my lifetime--and several lifetimes. I feel it whenever music lifts  my spirits and tonight, when his amazing oldest niece took the stage and sang with joy. 

His love was all over that. 

I am going to cop out a little bit on this blog tonight and share a bit of the eulogy I wrote for David, just one of my stories of him:

As I mentioned, David was non-verbal. He could not speak. He could say Ma and Da and he could laugh—his laugh was loud and joyous and goofy and just perfect. He could make sounds to get your attention. But, I never once heard him say my name. There were some Ta or Tr or T-like sounds, but never Tricia or Trish or Tish or Pat (which, if he could have spoken, would be his name of choice, because It would have driven me crazy).

I really have no idea what his voice would have sounded like if he was able to say words.

But, David knew how to speak without words. It is tough to explain—unless you knew him. David was a listener. He listened. He observed. He watched. Once, when I was about 11 or 12, I had a huge argument with my parents. I don’t remember what it was about, but I do remember stomping and screaming and shouting and being sent to my room in tears and rage.

I slammed my door and there was a knock. I opened it, ready to yell at my parents some more and there was David, with a tissue.

Even then, I was surprised. I underestimated him.

David always knew exactly how to meet people where they were. He moved through life this way—offering tissues, offering handshakes, offering hugs. He was the good samaritan in an emotional crisis. David did not take sides. He did not care of the details of the argument. He was just ready to quietly knock and offer a tissue to his crying sister, who felt so misunderstood.

The number of times my brother knocked on my door in our lives togehter is impossible to count. He was always there with a tissue, a smile and then, happy to listen to my rage and complaining about my parents or my friends or my boyfriend. He’d hit at the air in agreement with my anger. He’d laugh in therapeutic mockery of the one who wronged me.

He’d bend down and offer his big sister a kiss on the head and remind her that she would never be without his love.

Wednesday, September 22, 2021

Mommy Ego (Day 266)

Yesterday, Nicholas and I had a very bad day. 

We had what my friend Dr. Leesha would call a "vigorous discussion," over Wawa for dinner. (He wanted Wawa; we were having a buffalo chicken salad!). The rest of the night was insanity and I was basically engaging in a vigorously insane argument with a very tired 8 year old. 

And the truth is, I wanted TO WIN! I wanted to make him be compliant, apologize and tell everyone at school how good his salad was. 

Crazy, right?

This is not an isolated situation. I cannot even fathom how many times I've attempted to end a tantrum or a meltdown or simple bad behavior by digging in and insisting we address everything immediately. But the thing is, you cannot argue with crazy. You cannot solve a problem rationally when everyone is highly emotional and throwing stuffed animals or screaming odd things like "You read too many books mommy!"

But, my Mommy Ego--that urge to be noted as the adult, the one in charge--is always loudly shouting in my ear: "SHOW THEM YOU ARE THE ADULT."

And anytime there is shouting, it is absolutely not an adult situation. 

Instead, of arguing with my irrational children, I actually just need to let it GO! I need to distract them, play with them, move on from the emotion and then later, maybe, whenever everyone is even and sane, chat about what happened. Or maybe not ever really talk about it because it is okay. They know I am the adult (it is why they ask me for money). 

Letting my Mommy Ego go is going to be hard. I have been orchestrating the lives of my children for 15 years--but with each passing day, I have less control over each of them. They are growing up, they are flexing their independence and they are preparing for adulthood. While this all often includes emotional meltdowns and sharp tongues and drama, all of that is more than forgivable. I think I've forgiven them in advance for the 15 fights they will have with each other in the next 24 hours.  I cannot punish them for their emotions (even when their emotions result in bad behavior). I need to use the time honored tactics of redirection and repositioning. I might feel like I lost something--my ego might be a little bruised--but that is okay. 

As Dr. Leesha reminded me (I often use her for free therapy under false professional pretenses.), you can lose a battle; but you will win the war! 

And really, parenting is war, isn't it?

(I am off on the bedtime offensive! Wish me luck!). 

Tuesday, September 21, 2021

I always have to repeat myself. (Day 265)


A. Believe you are alive. 

B. Have a pulse. 

C. Do not have a pulse, but only just discovered that fact. 

D. Need me to repeat myself (I am really good at it, apparently). 

Lately, I've had suspicions that I might be dead or invisible. There have been several key bits of evidence that point to this: I send emails (the same one, 7 times) that no one responds to; I ask my children to do things and they don't do it (the same thing, 7 times); and my tan is fading (soon I'll be a grayish, white). Then, today in Costco, I said "No Thank You, " in a big voice through my mask to the woman trying to get me to try Pirate Booty in a muffin cup and she did not respond. Instead, she kept asking me repeatedly and then announced that I could have just said "no thank you."

You see? It is disconcerting. 

Of course, there are several bits of evidence that point to me being alive, mostly my pulse (which I just checked on my Apple watch) and the fact that several friends replied to my text messages (although maybe they are dead or invisible with me). 

Lately, all I do is repeat myself. My children--when faced with problems, refuse to listen to the solutions I provide. They say, "I'm hungry;" I offer food--any food. Then they scream about their hunger. They say, "I don't have clean clothes!" I say, "check the laundry!" They say "I don't have clean clothes." And we go back and forth and it is not a conversation but like two lunatics screaming through sound proof glass.

I think I am going mad. 

Tonight, I tried to get Alexa to launch the Bedtime Story Skill. She refused. She lit up as if listening but then stopped. Nicholas trotted in and said something incomprehensible and mumbly. And suddenly, Alexa was singing lullabies and telling soothing stories. 

I mean what in the world! EVEN ALEXA CANNOT HEAR ME.

The dog is not much better. When the dog barks, I have to say his name 1,000 times before he decides to give up and trot over. And that Costco lady; seriously what is her deal?

I honestly think I might be losing my mind. 

Monday, September 20, 2021

Self Forgiveness (Day 264)

I am very aware that my writing in this blog is like a roller coaster. There are days of silly giddiness, then days of complete despair, sometimes some anger disguised as mockery, a lot (I mean A LOT) of self-centeredness and no discernible editorial calendar or rhythm. 

Friday, when I was at a very, very low grief-addled point, I wrote a blog that left me feeling exposed. I really wondered if any of my 19 readers were talking about me being crazy or broken or depressed. And I don't think I am any of those things; at least not in a homogenous sense or an all-the-time way. 

It is not that I am paranoid, it is just that I know people. I've walked into rooms before and the conversation has stopped. (and I am sure I've stopped a conversation when someone has walked in).  I am an endless analyst of people's behavior and motivations. We all talk. We all judge and we all draw conclusions with the information we are given. 

And that is okay, it's how we grow in our relationships to one another. 

But, in my head, I became worried about what people would think of me; especially people who haven't seen some things--and haven't reached the point in their lives when they realize that broken exists in parallel with whole. We are neither one nor the other; but a mixed bag of shattered and smooth, of centered and spinning, of happy and sad. 

The trouble is when the sharp bits rough up the smooth bits. I don't think grief is a sharp bit--I think grief is a smooth bit. Grief is born out of love; love is what makes us human and grief over anything or anyone we loved is one of the purest expressions of love. 

But, self-loathing is sharp as a knife. My pain over the loss of my brother is driven by so much self-loathing. Why didn't I let him live with us? Why didn't I get to the hospital sooner? Why haven't I avenged his death? Why didn't I tell the first house how unprofessionally they behaved? Why haven't I written to David's organ recipients? Why didn't I visit him more? Why can't I grieve with my mother? Why didn't I monitor David's accommodations more carefully? Why didn't I keep in better touch with his caregiver? Where was the moment that David's fate was decided and how did I miss it?

I hate myself in the moments I ask these questions. None of these concerns come from a place of self-love or forgiveness. There is not one thing I can do to change the outcome of what happened. There is nothing required of me now that he is gone. And even if I felt there was something requires, that is a simply a lie. No one is angry with me. No one is waiting for an apology. The universe is not looking for another sacrifice. 

I spend hours a week hating myself for something I didn't do and for things I have no control over. 

Saturday, after being at my very lowest, I found some new awareness of all of this. It came in a Pearl Jam song (Present Tense) which feels a bit silly and frivolous and simple to say. But, I do firmly believe that God speaks to us in words we understand and voices we listen to. There is no mistake that I was at that concert and no mistake I let that song take me away from the unforgiving voices in my head. 

(And I am pretty sure Eddie Vedder is an atheist; which will forever make me laugh.)

I don't totally forgive myself, yet, and who knows if I ever will. Right now, I am tempted to delete all of my self-loathing questions, because I am engaged in this loop of self-loathing over exposing my self-loathing. Thinking to myself: Why can't you be stronger? Why can't you be quiet? I won't delete what I wrote because I think the first step to forgiveness is admitting what you've done. What I've done did not lead to the death of my brother.

Instead, I need to forgive myself for listening to the noise that takes me away from the beautiful memories of him.