We are no strangers to heartbreaking decisions. We made them under pressure and without involvement of emotions.
This time around we have all the time in world, in theory.
I used to like decisions, because it felt like I’m fixing things. What a naive illusion that was. All that fixing got us to about 100 seizures a day, very little improvement in vision, absolutely no developmental milestones and increasingly disorganized oral function. Eight months of trying medical cocktails, daily therapy and endless medical articles, emails, videoconferencing, research and participating in as many research projects as we could. All that has left us with nothing, waiting for results, waiting for appointments and procedures. I might be just experiencing a low point, weak moments, but it’s hard to stay positive when there is almost no feedback, no response, no improvement.
Imagine having a rag doll for a child. You still have to do everything like with a normal baby, but this doll doesn’t really move, smile back at you, reaches for you or interacts with its surrounding. It’s a lonely and unrewarding job making this doll do anything, teach it anything.
Parents of healthy or typicality developing children will never understand. Some days when I hear them going on and on about the “such a hard decisions” if they will vaccinate their child or give them Tylenol when they are teething. Some days it’s just too much and all I want to do is yell at them about “fucking no brainer, you can prevent your child from dying preventable death and protect other children who simply don’t have this luxury of choice. And you have a medication that can relieve your child’s pain with minuscule chance of harmful side effects!” Try this for a little perspective. You want to give your child something, anything to stop them from having almost constant seizures. But while you are trying to curb the seizures you can give them kidney and or liver damage. And loss of peripheral vision, reported in quarter of patients after prolonged use. How is that for a hard decision to make.
Now we are starting to face decisions that feel like mountains to climb. With the confirmation of constant silent aspiration we know that we are sitting on a time bomb. Aspiration pneumonia is a leading cause of pediatric death in patients with neurological impairment.
Until now Tomas is seen by strangers as a big sleepy baby. But his face is changing and he will no longer look like a baby soon. Until now he doesn’t look obviously disabled to passers by, but soon that will change. We live in a small town, after Sara’s passing we became “celebrities”, poster parents for the pity party. I still remember the paranoia of people talking about my family when grocery shopping. You enter the isle, two ladies are standing there, they give you quick look that kinda stops faster than usual and they start pretending to be really busy. If you catch a glimpse of them a minute later they are engaged in the intense conversation interrupted by the occasional sighs or hands touching face resembling the famous painting “Scream”. I hated that, but people’s memory is not like elephants’, they quickly move onto a new story. I’m dreading the new wave of pity party.
J already asked me the other day if I too get the feeling that people are nice to us, only because they feel sorry for us. It kinda made me think. Our “village” people are nice to us, because we are a community and we do things for each other and help each other. It’s two way street and I think people are nice to me because I’m nice to them, nothing more to it. Do they feel sorry for us? Yes, but that is not the sole reason for being nice to us, I’m not sure about the percentage of each of the reasons, I would hope for 80 nice and 20 pity. His next question was are we gonna get used to it and expect it? That one was easy, because I know I’m always surprised by people’s generosity and kindness and I will never take it for granted.
When it comes to kindness I’m still amazed how much of it comes to us from unexpected places. But I also know that when you seed kindness you reap kindness. To place a seed of kindness in soil to be nourished and cared for is a deliberate act. It requires a decision, decision to choose good. And maybe not just good, to choose to go one step further and choose great. I don’t meditate (I might but I certainly don’t call it that), but I’m getting better at beating my inner procrastinator. The little voice that says;” relax it has always somehow worked out”. Now days I shout back “because I have worked my ass off and found… to do…” I do good to feel good, so in this twisted sense I’m the most selfish person, because I want to make myself feel better. And I don’t want to deny this fact. I’m not saint, nor I want to be one. I’m just self absorbed human, just like all of us. Our pain is always the greatest from all people at the moment of suffering. Empathy is great, but it can only rise from the experience of our own deep pain, from processing it, from healing from it.
At the end every second of our life is a consequence of a decision we made, consciously or not. Whether I live life because of my active participation in the decision making process or not every new second can be the “point zero”. The reset button to try again play a new card game. The deck might be missing playing cards, just like our reality is missing our loved ones who are no longer with us, but you have to start the new game with the notion you can still somehow get the royal flush. I’m still playing, at the back of my mind I have secretly settled for full house. On the bad days I dread to come out empty handed. Then my insane inner optimist shouts across the room “Pair of two, wow, well played”, seriously at this point everyone else considers him pretty annoying. Most people suspect that he does this just to have the last word. You be the judge of that.
It’s early morning, my coffee is almost gone, my bath water is getting cold and I will walk out of this bathroom with the only thought possible. I have a pretty crappy incomplete deck of cards in my hand, those cards will get dealt no matter if I want to play or not. Whether I want to make the decision to play or not, this card game will continue playing. But I will make the decision I don’t want to make and play my hand. I will play it pretending there is a full, shiny brand new card deck being played in this round, and I will play it with the kind of energy and optimism that only active denial can give you. Because that is the only way, for me, to live through this endless game of poker called Life.
ktojoy 