It's a hot August day, so I'm hiding in the basement while big is at the neighbors and little is asleep. We played at the splash park for four hours this morning with friends they had not seen for awhile. They were both pretty unable to handle life afterward.
I called the school district this morning and unenrolled Daniel from preschool. He will be going to school for many, many years. He needs one more year of being little, not to mention every day he mingles with other kids is a potential virus brought home. I'm pretty proud of our seven month hospital-free streak. I also don't expect it to last once winter arrives, and with it, flu season.
Lately, I've been thinking a lot about why we humans are interested in the things that interest us, why we follow things we do. We value experiences, and while we would never elect to experience some things, we still seek to feel them. Maybe feeling things proves to us our own humanity.
When we started this journey, I wrote to sort out my feelings. I still do. I decided to not edit or judge my feelings, but to simply record them, and if anyone wanted to feel them with me, they could. There was no reason, in the absence of my own judgement of them, to withhold them from the public. If anyone else wanted to judge them, I decided I was okay with that, and that quite possibly it might even cut through the noise and reveal my true friends. The ones who could also feel feelings, acknowledge them, and move on.
To my surprise, the more honest I was about my feelings, the more my true friends cared. The ugly feelings did not drive anyone away. Being vulnerable did not invite attack. Being real drew out the realness in my realest friends.
Inevitably, when I start a post in a bad, sad, angry mood, I end it in a much more grateful one. Giving feelings a voice calms them, and seeing them in black and white minimizes their power and reveals their pettiness, and what I am left with is facts aside from emotion- how fortunate we are, how beautiful life is regardless of the hard stuff. Sometimes the most angry ones don't even get finished or shared because halfway through, I realize I don't feel that way after all.
I write for me. But I edit my grammar, try to rein in my tendency to overuse commas and run-on sentences, polish my style and edit for succinctness for you. Because although my first responsibility is to myself, to hack my own therapy so I can be a functioning mother, spouse, and member of society, I want to give my experiences to you in the hope that the lessons I learn the hard way can be absorbed second-hand. The feelings I work through can illuminate the shared paths of our human experience. The tears turning into crazed laughter can do more than merely entertain, they can allow us to meet each other wherever we are to let you know you are not alone either. Well. And also, we are all living on a spinning rock in the middle of vast empty space, hurtling toward death and a time in which we will no longer have a voice. Adding another honest, vulnerable voice to the global noise, a quiet voice saying, "this is what it was actually like, this life I lived, and nothing came of it as far as great cultural contributions, but every second was experienced and savored, and I knew and was known by people who were good and kind and we created a little pocket of love in the middle of all the hate and violence", that's all I can ask.
There are two things I hope people say at my funeral. I hope they say I loved unconditionally, vulnerably, and completely, and I hope they say I was unafraid of asking hard questions. I mean, you all are welcome to say I was Mensa-smart, smoking hot, and incredibly talented as well...it is my funeral, after all. Go ahead and lay it on thick, it's your last chance. But since I have no plans on it happening until my husband and I simultaneously die of heart attacks while clutching each other in a roller coaster explosion sometime after our hundredth birthdays, no need to write flattering eulogies just yet.
In the same vein, I have been thinking about the things I have felt in the last year that I did not feel, or at least felt less, before childhood cancer became our battleground. It doesn't have to be cancer that brings things like this on. But I wonder if I would have thought so much about certain parts of life if it hadn't. Certain things push my buttons now that didn't used to. Certain things make me cry. Certain things give me the sort of joy one cannot hold for long without feeling physical pain.
For example...
Realizing that in any other time in history, we would be mourning our kid. Just sit with that one for awhile. Think about how very different your day would have been without a person you love, who made you crazy, got on your nerves, then gave you a kiss and let you know you are their whole world as they are yours. And now think back to a day, any day in your shared past after which they would have simply not been a part of your daily life. The stories are everywhere, in footnotes of family trees. So many families lost kids to cancer before the 60's. Fifty years. This is how close we are from a time in which there was no treatment. Fifty years is nothing in the scope of human existence. The tiniest blink in the big picture of time is the only reason Daniel is more right now than a memory of a pale, tiny two year old. He is real, warm, solid. His voice fills the walls of this house, his clothes and toys clutter it, he gets owies and spills orange juice, hits his brother and has fits of giggles over silly surprises because of fifty years of applied research.
I used to want to push Daniel toward being extraordinary. I wanted him to be gifted. Now, I don't care about gifted. I'll be completely happy with alive. And given the 90% likelihood that he will live with at least one long term side effect of having had over three years of chemotherapy assault on his tiny body and brain, I will always feel this way. I can only hope the rest of the world will remember this as he runs the gauntlet that is puberty, teenagery, young adulthood. I hear so many stories of young survivors being bullied, sometimes to the point of being victims of murder or suicide, because of the physical and mental effects of having fought an adult-sized cancer battle as a child. Right now is my window of opportunity to prepare him, with daily support, security, touch, and joy, for a world that may or may not accept him when he is no longer the adorable, tow headed, pug-nosed imp he is now. When he no longer dissolves into his infectious giggles over things like bubbles, the words "banana", "jelly bean" or "goofball", when silly faces no longer instantly put him in a good mood. When he has grown out of the shiny childhood sparkle he carries now and has begun to withdraw, to figure out who he is and to demand privacy, the world will no longer be his oyster. I fear adulthood for him, when he has to learn, as we all did, he is no longer universally adored by all who meet him. No wonder adolescence is so hard. No wonder it is even harder for kids who had to learn about life's cruelty at a young age.
I am starting to admit I perhaps have a few not so great side effects myself from this last year. I realized this again the other day when Bobby called me from the store to ask if Huggies diapers were okay, since they were cheaper. I told him they were not. He asked why, and after a bit of hedging, I finally admitted the only thing I had against them was the way they smell when poopy. That was the diaper brand the hospital provided when inpatient, and the smell instantly puts me back there. I told him to buy the Huggies. I would deal. I am trying to deal. There are so many triggers in daily life that just flatten me. Parents who don't appreciate what they have. Parents who guilt their children or punish them without truly investigating the emotions or factors that lead to the behavior they find unacceptable. The fear that I slip into the same thing without realizing it. Any time I hear a truck start up back out of the lawn care business next door, that small panic attack if I am not exactly sure where my babies are at, lest one has somehow escaped the house and is standing behind the truck. Stories of relapses and siblings getting the same disease. I'm not sure which is more debilitating, the guilty fear that I'm stealing the joy from their childhoods by not spending every waking moment practicing perfect patience and modeling the best choices possible, or the dark fear that I'm going to make a mistake that kills one of them. I didn't think this way, or at least I felt it much less, before this last year. I was much more confident in myself and in trusting God, fate and statistics to help us avoid things we couldn't handle. And ironically, it isn't even our own experiences with a cancer that, by comparison with others, is actually quite treatable that has shaken me so deeply, it is having gotten to know so many others with less hope. It is seeing all the ways we are the same, instead of all the ways we are different, that has me realizing just how few promises we have and how we are all only the tiniest mistake, whether in parental judgement or cell replication, from having our lives changed completely and permanently.
Do I sound like a case study for clinical depression or an anxiety disorder? I feel like I might. I also feel like if we were all completely honest and vulnerable, we would all admit to this to some degree. But when it interferes with daily life, it is time to seek real help, not just pound it all out on the keyboard and post it in the therapy blog for the world to judge. I know this, and I'm not there yet. I don't think I am, anyway. It's up to my nearest and dearest to inform me of the things I'm not seeing or admitting if my life does become too affected by my "stuff".
The life of a caregiver/parent is one of being angry for your child's sake their life isn't better while also being weak with gratitude it isn't worse. It is one of simultaneously planning a long, happy life for your child and preparing to lose them. It is one of getting bogged down in little everyday stuff in which they push your buttons, get on your last nerve, and make you crazy, while also memorizing every second of your day, in case someday you have to return to the last time you felt normal. It's okay to grieve what you've lost while being thankful for what you have.
I had an unexpected conversation the other day with a woman who, in the blink of an eye, lost her daughter, who was Daniel's age, to senseless violence by the hand of someone she loved and trusted. I saw my own thought processes in her as she sought to sooth my horror at her experience by immediately listing the ways in which it could have been worse.
Why do we all do this? It is consistent across the wide range of parents we have met who are struggling to make sense of the bizarre world of childhood suffering. "Yes, but mine was gone in an instant and never saw it coming, and if I had had other kids I would have lost them, too", says the mother who lost her child to a car accident, or in the above case, rage and violence. "So much better than watching her fade for months, knowing it was coming".
"Yes", replies the mother who held her baby through chemotherapy and fading hope, "but I had the luxury of time to do nothing except focus on mine, to try to make every dream come true, to show him nothing but patience and love and hold him as I never would have otherwise, to right every wrong between us and try to move forward without being held back by parenting regrets."
They both cling hard to "at least they weren't old enough to comprehend it", while the parent of an older child says, "it must be so hard to see a child suffer like the toddlers do when they don't understand why."
The parents whose kids are disabled say "at least we still have them". The parents who do not still have them say "at least they are no longer suffering". It is as though we cannot ask anyone to drown, even for a moment, in our sorrow. We see them start to flounder, gasping in shock at how cold and deep our pool is, and we immediately reach for them to pull them out because we do not know how they will react and we do not want to think less of them if they do not react well.
The ones who rarely see horrible things often take the offered hand and climb out quickly, shaking off the clinging droplets of horror with "you are right. You are brave. You are such a positive person. I could never be you. And yes, it could always be worse, so glad you can see it that way". The ones who carry the deep scars of horrible things in their past grasp the offered hand, but stay in the pool for a few moments looking up with no attempt at words. They recover with immediate compassion and the real questions that have nothing to do with the morbid curiosity and attraction to what I call emotional porn- the compulsion to watch other people's lives fall apart in a mix of horror, revulsion, and fascination- that tragedy inevitably ignites in less scarred people. Less "how did it happen? Whose fault was it?" And more "what was her name? What was it like to be his mother? How are you/your other kids/your spouse doing right now? Do you feel understood and supported by those around you? Do you have people you can lean on without reservation? Would you like to drink wine and talk about life sometime?"
And mostly, the person will say they are fine. Which is okay because that is where they are at, unable to find the strength to even open the lid on all the ways they are not, in fact, fine, and everyone has the right to force that lid up on their own terms, or to procrastinate doing it indefinitely. So they crack jokes. The best kind of jokes, dry and dark, wry and shocking, that irreverently jab right into tragedy's gut. They smile because looking happy makes them feel normal and if the outside is happy, sometimes the happy penetrates a good several inches into their skin as well, and lets them forget their bones are still tired and sad.
It isn't as if we humans make these things up on the spot to ease the horror for others. We have them ready because they are the things we cling to, as well. We are positive people. I once listened to a Ted Talk* on the science of happiness, which made the point that we all have our baselines we generally return to. Neither winning the lottery nor becoming paraplegic has a major impact on long term happiness, surprisingly. We are who we are aside from external influences, although those influences do reveal more sharply our inclinations.
When bad things happen, the best of us is revealed. And the worst of us. And sometimes, when life gets really hard, we decide we just don't have the energy to present ourselves any way besides exactly as we are, and we make the surprising discovery that all the parts we hid because we feared they would render us unloveable are the parts people relate to the most. But why does it have to be this way? Why do we have to experience tragedy to finally be real? Why can't we all stop making New Years resolutions to be happier, healthier, or to lead more enviable lives, and instead resolve to just be vulnerable instead?
And on that note, two days later, I have to go make the choice now whether I am going to clean my house or engage with my children. A clean house means I look like I have my life together. Or I could go outside with two tiny boy humans, referee the sand throwing and be their mom, the success of which will never be measured so it feels like a waste of time and energy while the house sits and detracts from my image as well. It's not hard to see why we women feel like we can't be moms until the house is clean. Sometimes I long for our rambling camper life. Since we had no house, the choice was usually obvious.
* https://www.ted.com/talks/dan_gilbert_asks_why_are_we_happy?language=en
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